Anyone with big edema issues?-Nancy

2007-12-31 18:48:39

Hi Lynne,
I did just get my 8.5 month PCR and it is down a bit, nothing to write home
about but movement in the right direction!!! Us turtles don't like to get
turned around and heading in the wrong direction.
The congestion was odd for me.....it was nasal and sinus (which I never
have). I started doing daily nasal flushes with a Neti pot and saline water
which was very helpful. I think I was coughing a lot also....but it was not
in my chest. This has cleared.
Nancy C.

Re: [cml 2] Low H/H 10/32

2007-12-31 15:46:38

hi Amy,
I take 1 iron tab 3 times a day (ferrous iron slow-release tab). it not only
helps me keep my iron up, it also counteracts the diahrrea.
chris in min
dx 12/03
gleevec 400
pcr neg 06/04

Re: Gleevec vs Heart Failure, My 2 cents(long winded)

2007-12-31 13:12:57

Bravo Amy,
Well said!
And yes Nancy let's hope we die of old age!
Cheers,
Cheryl-Anne

Re:the impact of this news

2007-12-30 22:33:32

I should clarify something here. I'm not upset that the news about
these 10 patients with CHF surfaced, what bothers me is the way it
came out.
Headline news all over the world "Gleevec causes heart failure".
How daunting is that! There was no mention that these patients had
previous cardiac issues, there was no mention that they were, shall
we say "older" and there was no mention of how the study was done.
If one of our group members found this study in some research paper
and posted it, I would have absolutely no problem because as a
group, we can discuss its relevance, and we can discuss just how big
of an implication it has. That's what we do here and I believe that
it's important to keep up to date.
My issue is for the thousands of people world wide, who don't have
the benefit of internet groups to put this news in perspective. All
they see is "Gleevec causes heart failure". These same patients
don't understand what the difference between CCR, PCRU and a 3 log
reduction is. These are the patients who's doctors tell
them "you're as good as cured, there's no CML in you anymore" so
these are the patients that could easily say "I'm going to only take
Gleevec sometimes now because I don't really need it and I don't
want to get CHF".
We don't see headline news saying "Gleevec causes liver damage" but
we all know that this is a possibility and should be monitored. We
also don't see headline news saying "Gleevec causes low counts which
put patients at grave risk for deadly infections". These are all
things we know about and monitor but haven't lead to a widespread
panic because we discuss their relevance and put it all in
perspective.
So I guess what I'm saying is that it's not the information that
came out that bothers me, it's the way it came out and I see very
negative implications that could happen as a result which is what
really bothers me.
Tracey

Anyone with big edema issues?-Nancy

2007-12-30 16:26:14

In a message dated 7/25/2006 4:09:46 P.M. Eastern Daylight Time,
ncogan@... writes:
now been on 100mg BMS for 9 months. I have seen some decrease in my
ph+ %.....Dr. Druker says I am 'also a dasatinib turtle!!"
At first I had some definite side effects (body aches, congestion, etc) but
that is mostly past now. I read that you are thinking about switching drugs
in the Fall and I think that is a good idea for you, with all the Gleevec
problems you have had. You won't know if BMS is better until you try it.
Like Dr. D told me....you can always go back on Gleevec.
Dear Nancy Dasatinib Turtle, you mentioned "some congestion" early on in
therapy. Can you explain that to me and how did you treat it? Thank you, Lynne
A.

Re: [cml 2] New and just diagnosed with CML, taking Gleevac

2007-12-30 13:41:44

Hi and Welcome,
I hope that Debbie sees your post.....she has a 19 year old daughter that
was diagnosed about in December and at 6 months on Gleevec she is at a
wonderful level of remission.
Gradually you will learn more and more about CML. Are you having any side
effects from Gleevec? you can ask the list about anything you want. Dr.
Druker who is in Oregon (at OHSU) is a famous CML specialist, he helped
develop Gleevec.....he now tells newly diagnosed that CML can be treated
like a chronic illness. There is not a cure yet (except for a transplant,
which is risky and has other issues to consider)........but we have the
best researchers working on this disease.
Take care,
Nancy C. (from Oregon, used to be a cali girl!)

Re: [cml 2] Gleevec vs Heart Failure, My 2 cents(long winded)

2007-12-30 07:40:27

Hi Amy,
I agree with your wholeheartedly. Know the enemy. The best way to fight any
battle is to be as strong as you can be.....many health issues are under
our control (diet, exercise, whether we choose to smoke or not, monitoring
our health in general with exams, etc).........
Richard R. used to always say that the goal of a CMLer is to die from
something else!! I will add....at a ripe old age.
Glad you are doing well post gastric bypass.
Nancy C.

Gleevec vs Heart Failure, My 2 cents(long winded)

2007-12-29 23:07:26

When I started Gleevec over three years ago, it was a new drug,
knowing that all the details of side effects weren't out yet, I chose
to take my bull by the ring and ride that puppy. That being said, I
still want to know all they find. I want to know that perhaps I need
to be tested for CHF, bladder CA and so forth. I'm not giving up on
Gleevec, just arming myself for future finds. I was given 3-5 years
w/o Gleevec, and I am at 3 and doing great, had gastric bypass to
help further that along and live healthier.....boy did I have some
risks to consider. Gleevec has given me life that I thought was gone
on that fateful day in 2003 when they said Leukemia. I'm not scared
of the side effects of Gleevec, I am however concerned with the side
effects of blast crisis. CHF can be handled and can be monitored,
many people live with it for many years, and by golly, I can add
something else to my list. I know that as my treatment with Gleevec
progresses so will potential side effects, as the pioneers near 10
years on the medication, more adverse effects will come out and there
will be more for us to monitor. Each medication we take has these
nasty side effects, some more toxic than others. We are adding
foreign substances to the perfect body we were given to change the
things we have found to be flawed, do we expect perfection again? I
don't, I just hope for MORE! I still continue to live by "fear is an
option, the unknown a given" I get through each day this way and
find myself relatively happy. To each new side effect of Gleevec,
Dasatinib and Sprycel that they discover.......we can handle them
all, we have persevered through the darkest days and will make it
through the potholes in our therapy. Without the therapy.....NO
potholes, no 20 or more years. Faith allows me to pray..."Tell me
all you discover docs and keep me in the know, and help me become a
healthier CML patient and person with each added discovery and find.
My cousin, great uncle and Great granddad will all be watching over
me as I fight the fight they lost, and will be on my side wishing me
well"
My head is not in the sand, I watch and read everything on Gleevec
and CML, I just choose to stay calm and ride it out and move on to
the next wonderful thing to come along. I will monitor my heart, and
my bladder, and my thiamine, and my other essential Vitamins(gastric
bypass related). I tell you, I'm going to end up being the one of
the healthiest CMLers there is, can't lose for winning!
Love you all! Keep up the good fight and stay positive! We all have
great things in stored for us and wonderful researchers researching.
It never ENDS!
Amy B......on her soap box.

New and just diagnosed with CML, taking Gleevac

2007-12-29 16:31:04

Hey Im new...Im an 18 year old cali girl and was just diagnosed with
CML 3 weeks ago if anyone has any advice for me it would be greatly
appreciated.

FW: [cml 2] the impact of this news

2007-12-29 16:06:08

Hi Tracey,
I didn't count the number of posts concerning the heart scare, but I can
tell you that I had many (6) telephone calls from CML patients around
the planet asking me what I thought about the news reports.
These patients were genuinely concerned about the news and wanted my
opinion. I did my best to calm them down by telling them that it was a
very small number of patients that encountered heart problems and we had
to wait for the data to see what the numbers were.
I also reminded them that a large number of chemo drugs have side
effects that affect the heart. This is nothing new. I also mentioned
that in 7 years of looking at the CML lists, CHF while on Gleevec was
never an issue.
The phone calls I received were from patients who got their information
from the news media and not the CML list groups.
I also received many phone calls from friends and relatives asking me if
I saw the news and will it affect me. They knew I was on Gleevec and it
worried them.
I took a close look at the 10 CML patients who ran into this problem.
Only 3 of the 10 didn't have prior heart problems before taking Gleevec.
Since I have CHF, I do wonder if the Gleevec is making it worse, but I
leave that to my cardiologist to figure it out.
Zavie

Anyone with big edema issues?-Nancy

2007-12-29 11:45:51

Hi Lynne,
Ice is always a great home treatment. It doesn't just give pain relief
(from numbing). It also aids healing, from increased circulation. We would
often advise people to ice 3 to 5 time a day, just until you are numb to
the cold.
LMT refers to licensed massage technician, which tells you they have gone
through a qualified training program. Apparently they all learn lymphatic
massage (and there are at least a couple different techniques) but I would
try to find someone who is doing it more regularly....like maybe someone
working with cancer patients. With breast surgery and removal of the lymph
nodes the edema is a big problem........so you should be able to find
someone. Maybe ask the Cancer Society, etc.
The Oriental Medicine custom of dry brushing might also help and you might
find that described in a book or on the internet. You use a dry brush and
the pattern is from the ends of the extremities toward the body....very
lightly, to move fluid along. Follow this with a warm bath or
shower.....and a final cool rinse (the colder the better) which reduces
superficial circulation.
I have now been on 100mg BMS for 9 months. I have seen some decrease in my
ph+ %.....Dr. Druker says I am 'also a dasatinib turtle!!"
At first I had some definite side effects (body aches, congestion, etc) but
that is mostly past now. I read that you are thinking about switching drugs
in the Fall and I think that is a good idea for you, with all the Gleevec
problems you have had. You won't know if BMS is better until you try it.
Like Dr. D told me....you can always go back on Gleevec.
Take care,
Nancy

IM and CHF - it isn't just about ten patients....

2007-12-29 08:31:43

Hello All,
Given that CML is a disease that has a higher rate of incidence among the
middle age population, the information on the possibility of IM to cause CHF
is pretty relevant. If we look at the American population for instance we
see that the incidence of obesity continues to rise. We know that diabetes,
high blood pressure and other health issues are linked to obesity. The
question is, given that CML strikes more people in their mid 50"s and
beyond, coupled with the incidence of obesity then how many people will
arrive at middle age without any other health problems? Probably not very
many. For those of us who are younger and in relatively good health this is
less of an issue, although, I have to tell you I have no family history of
heart problems (I was 43 at dx) and other than CML I have always been fairly
healthy, but I still have been very diligent about monitoring my heart
health throughout my "career" of CML.
Anyway, if the rate of prevalence in 2001 of people living in the US with
obesity was 20%, we can make an extrapolation: 100,000 are currently on
Gleevec treatment in the world today. The literature states that 20% of
these per year will either develop resistance or be unable to tolerate IM.
Perhaps it is not so difficult to imagine that 20% of the people being
diagnosed will have other issues that put them at risk for "rigorous"
treatment approaches. This changes the numbers dramatically and gives us
all something to think about.
It isn't difficult to imagine that it is not just about those 10 patients,
and I'd like to say that if I was one of those 10 patients, I am not so sure
I would like to be brushed aside so lightly, the bigger issue is the larger
group of patients who will be underserved.
The lesson learned is that we really need to educate our children about the
importance of building and maintaining good health throughout our lifetime.
This also reminds us that we can do everything possible to strive for good
health in spite of being dxed with CML.
Food for thought?
Cheers, Peace and all good things,
Cheryl-Anne

Anyone with big edema issues?-Nancy

2007-12-29 03:07:23

In a message dated 7/22/2006 2:09:24 P.M. Eastern Daylight Time,
ncogan@... writes:
and it was especially sluggish where I noticed
the edema, like my inner knee area........the edema, like my inner knee
Gleevec edema which is often superficial (and you can see it) is in the
Dear Nancy, thanks for bringing this up. I am trying to find a way to cure
the edema in my left knee which is causing me to limp in pain quite a bit,
walking with a cane is so lame.
An x-ray revealed some "bony growth" in the knee, with fluid build up. I had
a cortisone shot but it did not work. The doctor wants me to do PT, but I
find that horseback riding does the same thing, I ride with lower stirrups and
do exercises with my leg on the horse. For two days afterward I had NO pain,
the muscle tightening is helping the knee. BUT, I have to ice it three times a
day nonetheless.
Would you say that a massage therapist could help this situation? LMT means
what? Lymphatic Massage Therapist? If that is the case, I should try and
find someone here who does that.
Also, are you doing well on the BMS drug? Thank you, Lynne A.

Re: [cml 2] the impact of this news

2007-12-28 17:25:56

Tracey,
I totally disagree with your post. What are the lists for if not to share
information with others that is of concern to CMLers. There are usually not
many posts because there isn't really that much to talk about. Gleevec is
not new to most of us. Discussion does not mean high anxiety....and I am
not seeing that on the lists. I am someone who believes that 'knowledge is
power' and not everyone has a top notch CML specialist they are dealing
with....so it is important to pass along information we read. If this was
not a significant piece of NEW information, then why would it be coming up
on all the lists????
If you look at Jerry's CML discussion, this has brought forth some other
new information as well........like Mark P. posting about his recent
hypertension, maybe Gleevec related........and the woman who's husband did
not qualify for a transplant because his heart (post Gleevec) had only 20%
function. Maybe this will be a reason for some good candidates to go to
transplant earlier????
I don't see anyone jumping off the Gleevec wagon and saying they will give
the drug up? We DO not know that there are only 10 Gleevec patients who
have developed CHF.....these 10 patients were all at MDACC. Maybe other
oncologists, seeing only a few CMLers did not see the connection between
the CHF and Gleevec............and NOW that this has hit the news they will
know to monitor for it.........and it will be more likely to be reported if
it occurs. Dr. Druker has told me that the more people who are on a drug
and the longer they are on it, the more side effects you will see. Which is
why in early, small trials often you don't see many side effects,
especially the rare ones........but once trials increase or the drug is
approved, you will see more side effects.
I will be very curious to see if Dr. Druker decides to do any particular
monitoring for heart function.
Nancy C.

the impact of this news

2007-12-28 04:43:40

I agree that we should be aware of potential side effects and issues
that arise over time. In this particular case however, where only 10
people have been found to develop CHF, most of which had other issues
going on such as high blood pressure or diabetes, I wonder if this is
nothing more than fear mongering. Just look at the panic that has
happened on the lists...all of them.
I don't recall ever seeing such activity on all of the lists as I have
in the last day since this started. How many people are going to stop
taking their Gleevec because of this? How many people are going to
loose sleep worrying about this? How many people are going to run to
the ER in a panic everytime they feel short of breath (only to find
out that the cause is nothing more than anemia)? I would say many more
than the 10 people who developed this CHF (which may or may not have
anything to do with Gleevec).
Tracey

RE: [cml 2] FYI: Gleevec Linked To Heart Failure

2007-12-28 04:20:41

Hi,
Yes, it's important that we remain aware. Things do change over time as
more becomes known about a drug. Over time, Novartis has changed the
prescribing material for Gleevec. For instance, blood clots were only
added as a potential adverse event in 2004 -- three years after the drug
was approved. Other stuff has been changed as well.
Nancy, I must have missed the urine testing/bladder cancer thing. That's
new to me. What is that all about?
Thanks!
~Jennifer G.
www.cmlsupport.com
www.upstairswindow.org

Re: [cml 2] Breast Cancer Cml Today Colon Cancer

2007-12-27 22:38:28

Dear ????,
I do believe I have read other postings about multiple cancers.....I know
some had breast cancer and radiation years before getting CML.....but I
think some have posted about new cancers post CML. If you have not already
done so, you might post on several CML lists. To find a complete list and
link to most of these lists, go to Jerry's site
www.newcmldrug.com
post on CML Discussion
then look toward the top of that page for the other CML lists.
I hope your sister gets good news from after her colon surgery.
Nancy C.

Re: [cml 2] update!

2007-12-27 14:16:45

Shari,
I would not take anymore than 40mg of Lasix. I hope that you are taking some
potassium to replace what you loose. I also get very swollen in the legs when I
travel, wither by car or plane. That doesn't seem to be out of the ordinary.
Congrats on the continues low level of PCR.
Shelley
shari3059 <shari3059@...
Hello, I just wanted to give an update from my 6 month visit to
MDACC.
I just received a call from Dr. Faderl and my pcr was 0.04 and in
January it was 0.01 which he said was ok and nothing to worry about
at this time. So I guess i will have pcrs that bounce around a bit,
or at least thats all I hope it is. As for side effects some seem
to be getting worse for me. We drove from Houston back to ElDorado
Ks in one day it takes about 10 hours. When we got home I could
hardly walk I felt huge all over but mostly in my legs. It was so
bad that I could hardly get in and out of the bathtub. I took 40mg
of lasix and had to sit in a recliner for quite a few hours. It
actually took about 5 days to really start feeling better. I also
had alot of trouble breathing, just felt short of breath. Also for
me the cramps have gotten worse. I always mention these things to
both of my onc. but neither one ever is able to give me any new
information to manage these problems so I have been trying to do the
best i can. I found some compression socks that I wore home from
the Hospital after having my gallbladder removed and thought that
might help me to wear them when traveling or if I am on my feet more
that usual. So for me the worst side effects are edema, cramps, a
fatigue and sometimes shortness of breath.
I was wondering what the limit is for taking lasix. If your doing
really bad one day from traveling can you take more than one a day?
I have'nt done it yet, but I should have asked when I was there and
forgot. Other than a few problems I feel I am doing great and I
just wanted to give an update.
Blessings to everyone!
Shari from Kansas
dx feb 2003
ccr june 2003
july 17 2006 pcr 0.04
Shelley

update!

2007-12-27 11:41:03

Hello, I just wanted to give an update from my 6 month visit to
MDACC.
I just received a call from Dr. Faderl and my pcr was 0.04 and in
January it was 0.01 which he said was ok and nothing to worry about
at this time. So I guess i will have pcrs that bounce around a bit,
or at least thats all I hope it is. As for side effects some seem
to be getting worse for me. We drove from Houston back to ElDorado
Ks in one day it takes about 10 hours. When we got home I could
hardly walk I felt huge all over but mostly in my legs. It was so
bad that I could hardly get in and out of the bathtub. I took 40mg
of lasix and had to sit in a recliner for quite a few hours. It
actually took about 5 days to really start feeling better. I also
had alot of trouble breathing, just felt short of breath. Also for
me the cramps have gotten worse. I always mention these things to
both of my onc. but neither one ever is able to give me any new
information to manage these problems so I have been trying to do the
best i can. I found some compression socks that I wore home from
the Hospital after having my gallbladder removed and thought that
might help me to wear them when traveling or if I am on my feet more
that usual. So for me the worst side effects are edema, cramps, a
fatigue and sometimes shortness of breath.
I was wondering what the limit is for taking lasix. If your doing
really bad one day from traveling can you take more than one a day?
I have'nt done it yet, but I should have asked when I was there and
forgot. Other than a few problems I feel I am doing great and I
just wanted to give an update.
Blessings to everyone!
Shari from Kansas
dx feb 2003
ccr june 2003
july 17 2006 pcr 0.04

Breast Cancer Cml Today Colon Cancer

2007-12-27 08:02:33

My sister was diagnosed 4 years ago with breast cancer and had a
successful mastectomy followed by chemo. Two years ago, she was
diagnosed with CML (age 65) and has been doing very well on Gleevec.
Today, she was given the sad news that she has colon cancer. We do not
know what stage it isuntil the surgery. Is there anyone out there who
has had two/three cancers..and were they able to take chemo while on
Gleevec?
I am very curious about this, since radiation and chemo are usually
the follow-up to surgery.
I would appreciate any words of wisdom today.
Thanks you,
Janw815@... in Los Gatos Cal.

The Gleevec and CHF issue

2007-12-27 01:13:18

Hello Folks,
I was not really available during the weekend and am only catching up with
the lists now.
I would like to jump into the discussion about the article showing that
"possibly" Gleevec can cause CHF. First of all, I would like to say that it
is my impression that this article merely warns us of a potential problem
that should warrant further investigation and of course puts the possibility
of CHF while undergoing IM therapy on the radar screens of all our
Heme's/Heme/Onc's. I believe this is a very good thing.
Clearly the primary goal of IM is to stop/stabilize and control the natural
progression of CML. I use all those terms because I am admitting that for
some people it does seem to clearly stop - as evidenced by excellent
response, i.e. sustainable PCRU (albeit while continuing drug therapy).
While in others it stabilizes as is evident by stabilized degrees of log
reductions if not reaching PCRU completely.
If the question is "could possibly IM cause CHF by virtue of the fact that
the scientist in question have determined that ABL serves a purpose in
maintaining healthy heart muscle". The answer is "yes", but the study is
not conclusive. However, it is interesting to note, that AMN 107 has been
purported to have a lesser side effect profile than IM because contrary to
IM it inhibits ABL first then PDGFR and, from what I have heard, PDGFR
inhibition "MAY" - not saying it is, be responsible for some of the side
effects some of us have been having issues with. For those of you who do not
know, AMN 107 does have a cardiac side effect profile to the point that
patients with known cardiac problems would be advised against it if
possible, as is understood by reviewing the study protocol. We further note
that Nilotinib as well as Dasatinib patients undergo ECG testing at various
intervals in the study, but primarily in the beginning. This is all a very
good safety precaution and I think shows a good ethical approach to the
clinical design of the study. However, in the end we can and must expect
good care and monitoring by our treating docs, and especially more so in
light of this new information.
It is just my feeling that it is very good and healthy of us all to have
discussions such as this because we need to acknowledge that not all
patients on IM therapy are enjoying the same type of quality of life. Of
note is the recent discussions on edema. Some suffer much more so than
others. This brings up another point, that not all of us are going to be
well serviced by IM. We know from the literature that roughly 20% of us
will fail IM for either reasons of resistance or intolerability.
Intolerability is very subjective whereas resistance is not. In the matter
of intolerability we must all be allowed to freely state our complaint and
issues as this is the only way we can have them properly addressed. Were it
not for side effects, scientists would not be prompted to look for causes.
To me side effects can be deemed to be analogous to saying "where there is
smoke - there is fire". What we do not know is how bad is the fire? Do we
need to be really concerned about it? Is it something we need to monitor and
be aware of? The side effects tell us something is going on, we need to
listen to it and determine what, if anything related to either the disease
or the treatment is causing it.
There is no reason for anyone of us to suffer un necessarily because we have
difficulty in hearing that what works so well for ourselves doesn't work so
well for the rest of us. There has been a tone on some of the lists lately
which I find a bit discouraging in that we label fellow patients as
"whiners" or maybe even possibly lacking grace for not "sucking" it up and
taking all that comes along with CML and the respective treatments in
stride. In my opinion that is a stance that can be very detrimental to the
overall good of this patient population. It is quite possible that while IM
is a very good drug and has prolonged our lives that it is just not the
panacea we had all hoped it would be. That is not a bad thing either.
Research continues on and additional pathways to curing this disease are no
doubt being explored.
From my perspective, I have found much comfort in knowing and understanding
that inhibiting signaling pathways cannot be done entirely free of risk and
independent of any other impact. The reason being that we do not understand
all that there is to know about this disease. And certainly we patients do
not even know what we do not know about this disease. So, in an effort to
help me manage my own expectations I have taken the approach that we all
need to concede that what works for some of us may not work for all of us.
We celebrate the patients who are now being treated and seemingly have a
good response with Sprycel. For many of these patients not only are they
having a cyto response, they report an improved quality of life. It is not
wrong for any of us to strive to ensure that the issues of quality of life
are properly addressed.
There is no doubt in my mind that as time goes on more information will come
to light about these TKI's (tyrosine kinase inhibitors), and it is very
likely that in some cases it might cause some distress for some of us. A
good analogy for me would be thinking about it as if we are all on a raft
adrift in the ocean. The raft has saved us from the sinking boat, but maybe
the wood used in building the raft cannot withstand a really long ocean
voyage. Which is why finding a cure for CML is still an urgent matter. I
have wondered from time to time (as most of us, if not all of us has) what
are the potential downsides of longer term therapy? I am grateful that
research is uncovering potential drawbacks now because it underscores the
need for finding a cure. The need is less urgent for different types of
patients and this becomes controversial to some. However controversial, it
should not stop us all from thinking about it. It is human nature to want to
know how/why something works or doesn't. Most importantly we all need to
understand that we the patients urged and helped to bring this drug to
market quickly, and with good reason, many of us are still here today
because of it. However, we have to remember that as Christine stated in
another post on another list "We are the data". This is the price we pay
for still being alive. For most of us, we gladly pay this price. Just for
the record in this months issue of the New England Journal of Medicine, Dr
Charles Sawyers has posted a commentary proving that a new inhibitor under
study for breast cancer causes tumor metastasis elsewhere. So, it is not
only the TKI's for CML that are being examined.
All of this highlights again the absolute need for each and everyone of us
to see and be treated by qualified CML experts who are up to date on the
latest information on this disease and the current and on going research.
Most of you know, I was and in many ways still am a big fan of cycling. It
is very important that this be something to be considered in the future.
Those patients with a good response should be allowed, under a doctors
guidance to cycle, if for no other reason than to allow the body to have a
break. I know I am not going to be looked upon as popular, but I believe
this is a discussion that needs to be had but not here on these lists,
rather with our doctors and the key opinion leaders in this disease. It is
not logical, in my point of view anyway, and granted I am not a scientist
nor doctor, that anyone can stay for years/decades on a cytoxic drug of any
kind without some sort of side effect. I am saying however, that we can
probably all manage ourselves quite well if we know what they might be and
perhaps under what circumstance they may arise.
But I thoroughly agree that stabilizing CML has still got to be the primary
concern objective of treatment. You can recover from CHF, but the prognosis
is really really bad for recovery from blast crisis or acute leukemia.
Additionally, further investigation will tell us what was in the patients
profile that may have predicted that knowing what we know now, they would be
at risk for CHF? I want my doctor to know this, don't you?
I for one am happy for any and all new information that we have access to as
it can only serve to help us all understand this disease and our treatment
better. I do not believe anyone should take the issue of side effects
lightly, as some on other lists have, because they are real and they need to
be dealt with either with adjunctive therapy or in switching therapy all
together when necessary. It is not wrong for us to think that we can have a
decent quality of life,which each of us needs to define for ourselves. We
also need to understand this disease better so that we can proactively
participate in our treatment care plan so that we can, to the best of our
ability, achieve a QOL that fits our own description of it.
How many of you know that patients with Hairy Cell Leukemia are being cured
with IFN? Yes, that is cure as in very long term drug free sustainable
remissions. How many of you know that up to 75% of the patients who develop
APL are cured with a modified version of a vitamin E type substance. How
many of you know that AML in children has a much higher rate of cure with
chemotherapy than ever before. There is no reason why we should have to get
used to having this disease for the rest of our lives. It is not
inappropriate for us to believe that we should hope for and expect more than
just a "functional cure". I point this out because words like "functional
cure" and long term chronic disease are creeping up in some of the
discussions of late.
Anyway these are just my thoughts for this lovely summer day.
Love and all good things to each and everyone of us!
Cheryl-Anne

Re: [cml 2] another side to the heart toxicity debate

2007-12-26 17:30:22

Thank you for the information Tracey, I believe that everything will be okay and
more good reports will be coming in. I was told in 1999 that I had 3-5 yrs to
live. Gleevec came out and has given me my life back.
Ollie
Tracey <traceyincanada@...
to add another angle to this debate. Here's an abstact showing
that due to Gleevec's ability to inhibit PDGF, it may actually
protect the heart in some ways. I wonder if this could also explain
why many of us have low blood pressure?
Tracey
*************************
1: Hypertension. 2006 Jan 23; [Epub ahead of
print] Links
Imatinib Attenuates End-Organ Damage in
Hypertensive Homozygous
TGR(mRen2)27 Rats.
Schellings MW, Baumann M, van Leeuwen RE,
Duisters RF, Janssen SH, Schroen
B, Peutz-Kootstra CJ, Heymans S, Pinto YM.
Experimental and Molecular Cardiology,
Cardiovascular Research Institute
Maastricht, Maastricht University, the
Netherlands; Department of
Pharmacology, Maastricht University, the
Netherlands; and Department of
Pathology, University Hospital Maastricht, the
Netherlands.
Imatinib specifically inhibits receptor tyrosine
kinase signaling and is
clinically used to treat leukemia. Receptor
tyrosine kinases not only
mediate tumor growth but also initiate adverse
signaling in heart failure.
We investigated whether imatinib, by inhibiting
the platelet-derived growth
factor receptor-beta (PDGFRbeta), prevents
cardiac and renal damage in
TGR(mRen2)27 (Ren2) rats. Eight-week-old male
homozygous Ren2 and Sprague
Dawley rats were treated either with imatinib (30
mg/kg; STI-571) or
placebo for 8 weeks (Ren2 n=12 for each group;
Sprague Dawley n=6 for each
group). Imatinib did not affect blood pressure or
left ventricular (LV)
hypertrophy in both groups. Imatinib attenuated
the decline in fractional
shortening (imatinib versus Ren2 placebo
45+/-4.5% versus 32+/-3%; n=7-11;
P<0.05) and in diastolic function in Ren2 rats
(baseline diastolic dP/dt
corrected for systolic blood pressure Ren2
imatinib versus Ren2 placebo
38.6+/-0.67 versus 35.3+/-0.41 [1 . s(-1)];
n=7-11; P<0.05). This was
associated with decreased cardiac fibrosis and
decreased activation of
PDGFRbeta and extracellular signal-regulated
kinase 1/2. Renal
microvascular hypertrophy and perivascular
fibrosis in Ren2 rats were
significantly decreased by imatinib. In vitro,
imatinib blocked angiotensin
II-induced activation of the PDGFRbeta and
significantly decreased
fibroblast proliferation and collagen production.
In conclusion, imatinib
did not affect LV hypertrophy but attenuated the
decline in cardiac
function and reduced renal microvascular damage
associated with reduced
activation of the PDGFRbeta. The simultaneous
improvement in both heart and
kidneys suggests that inhibition of the PDGFRbeta
has broad protective
effects that may provide novel avenues for a
blood pressure-independent
protection against end-organ damage.

Low H/H 10/32

2007-12-26 11:51:32

Hey everyone. I'm 12 weeks out from my gastric bypass, and have been
on Gleevec for 3+ years. My blood work shows a drop in my H/H and I
am guessing it is probably from the gastric bypass, however, being on
Gleevec probably doesn't help much either. Do any of you take iron
supplements with your Gleevec to keep the H/H in check??? I don't
think the procrit and such is necessary, just need a boost. Any input
would be appreciated!
Amy B.

welcome Ollie

2007-12-26 07:59:29

It's so good to hear how well you're doing Ollie, you're an
inspiration to us all and quite the Gleevec pioneer. Some members do
take pain meds for whatever reason, hopefully they'll share their
experience with you.
Take care,
Tracey

another side to the heart toxicity debate

2007-12-25 22:45:57

Just to add another angle to this debate. Here's an abstact showing
that due to Gleevec's ability to inhibit PDGF, it may actually
protect the heart in some ways. I wonder if this could also explain
why many of us have low blood pressure?
Tracey
*************************
1: Hypertension. 2006 Jan 23; [Epub ahead of
print] Links
Imatinib Attenuates End-Organ Damage in
Hypertensive Homozygous
TGR(mRen2)27 Rats.
Schellings MW, Baumann M, van Leeuwen RE,
Duisters RF, Janssen SH, Schroen
B, Peutz-Kootstra CJ, Heymans S, Pinto YM.
Experimental and Molecular Cardiology,
Cardiovascular Research Institute
Maastricht, Maastricht University, the
Netherlands; Department of
Pharmacology, Maastricht University, the
Netherlands; and Department of
Pathology, University Hospital Maastricht, the
Netherlands.
Imatinib specifically inhibits receptor tyrosine
kinase signaling and is
clinically used to treat leukemia. Receptor
tyrosine kinases not only
mediate tumor growth but also initiate adverse
signaling in heart failure.
We investigated whether imatinib, by inhibiting
the platelet-derived growth
factor receptor-beta (PDGFRbeta), prevents
cardiac and renal damage in
TGR(mRen2)27 (Ren2) rats. Eight-week-old male
homozygous Ren2 and Sprague
Dawley rats were treated either with imatinib (30
mg/kg; STI-571) or
placebo for 8 weeks (Ren2 n=12 for each group;
Sprague Dawley n=6 for each
group). Imatinib did not affect blood pressure or
left ventricular (LV)
hypertrophy in both groups. Imatinib attenuated
the decline in fractional
shortening (imatinib versus Ren2 placebo
45+/-4.5% versus 32+/-3%; n=7-11;
P<0.05) and in diastolic function in Ren2 rats
(baseline diastolic dP/dt
corrected for systolic blood pressure Ren2
imatinib versus Ren2 placebo
38.6+/-0.67 versus 35.3+/-0.41 [1 . s(-1)];
n=7-11; P<0.05). This was
associated with decreased cardiac fibrosis and
decreased activation of
PDGFRbeta and extracellular signal-regulated
kinase 1/2. Renal
microvascular hypertrophy and perivascular
fibrosis in Ren2 rats were
significantly decreased by imatinib. In vitro,
imatinib blocked angiotensin
II-induced activation of the PDGFRbeta and
significantly decreased
fibroblast proliferation and collagen production.
In conclusion, imatinib
did not affect LV hypertrophy but attenuated the
decline in cardiac
function and reduced renal microvascular damage
associated with reduced
activation of the PDGFRbeta. The simultaneous
improvement in both heart and
kidneys suggests that inhibition of the PDGFRbeta
has broad protective
effects that may provide novel avenues for a
blood pressure-independent
protection against end-organ damage.

welcome Ollie

2007-12-25 12:00:45

Tracy,
How nice to hear from you, thank you for writing.
I'm in total remission with no signs of CML according to my Dr. He was so happy
and was telling everyone "my patient has no signs of CML" but said I still have
to continue taking Gleevec. I feel great, am 68 yrs old still going strong. I
will ask him all about this next month when I see him. I'm interested to know
what your Dr's have to say as well. I don't think we should be too alarmed
right now as I'm sure they will work very hard to "fix" this.
I do have severe leg pain at times but my my Dr. said to take Aleve which
doesn't help much. Are any of you on pain meds and if so what are they. I will
suggest it to my Dr.
In 1999 I was told that I had 3 to 5 yrs to live then Gleevec came out and I was
one of the first to take it at Scott & White Hospital. They call me the Gleevec
poster girl at S&W.
Keep in touch, talking about this is good. I've never wanted to talk aout it
until now. I have a prayer list that I pray over so if any of you want me to
add your name to the list please let me know.
I live in Temple, Texas and we have an excellent cancer research center her.
I moved here to be with my family after losing my husband but they all died of
cancer within 3 years of each other. Mother & Daddy had lung cancer and my
sister had a gleoblasthoma brain tumor, not sure of the spelling, and went very
fast. I have a son in Calif. and I live with my little baby dachshund. My
Health Plan here covers my gleevec so I feel like a hostage here. I haven't
checked to see if medicare covers it.
Ollie
dx Jan. 1999

***********************************
Welcome to the group Ollie. With 6 years under your belt, I wonder if
you were in the phase I or II trials of Gleevec and how you're doing
now. We'd love to hear more about you if you feel like sharing.
Take care,
Tracey
dx Jan 2002

Thanks for DelCotto Support

2007-12-25 11:15:00

Dear CML family,
I just want to thank you for all the emails and messages in support of
the DelCotto family afte the loss of dear Bob. I compiled all your
posts and emails (minus any personal info) and forwarded it to Melissa
on some pretty stationary. I know she and the family really
appreciate it.
For those of you who asked, Rob is really doing quite well. He
started back to work on March 1, 2006. He is still leukemia-free,
thank goodness, as we near his 3-year post-transplant anniversary! We
continue to follow his endocrine issues up at City of Hope and get
most of his care here at UCSD. We met with a cardiologist lazt week
because I have had some concerns. Rob had a stress echo done just
yesterday and we will meet with the cardiologist soon to discuss the
results.
Love,
Kelly

Re: FYI: Gleevec Linked To Heart Failure

2007-12-25 03:13:10

It's hard to take seriously any article that can't seem to decide on
the appropriate spelling for Gleevec, not to mention the grammatical
error that I've copied below:
Also, how many thousands of patients are taking Gleevec right now?
They've found 10 that developed CHF. I'd hardly consider that
statistically significant. People in the general population do
develop CHF for unknown reasons so just because these particular
patients happened to be taking Gleevec at the time they developed CHF,
doesn't tell me there's a cause and effect relationship here.
Tracey

Re: welcome Ollie

2007-12-25 02:06:18

***********************************
Welcome to the group Ollie. With 6 years under your belt, I wonder if
you were in the phase I or II trials of Gleevec and how you're doing
now. We'd love to hear more about you if you feel like sharing.
Take care,
Tracey
dx Jan 2002

FYI: Gleevec Linked To Heart Failure

2007-12-24 13:46:27

Hi all,
Here's a story that's sure to be of ongoing interest. (Apparently in an
effort to include all possible combinations, the report has 3 different
spellings of Gleevec! :-) )
Jennifer G.
www.cmlsupport.com
www.upstairswindow.org
=======================================
Study: Cancer Drug May Pose Heart Danger
Jul 23, 1:02 PM (ET)
By RANDOLPH E. SCHMID
WASHINGTON (AP) - A successful cancer-fighting drug may also damage the
heart, although a researcher says leukemia patients who need Gleevec
should not abandon it.
While effectively treating cancer, Gleevac can lead to heart failure in
some patients, said Dr. Thomas Force, who teaches medicine at Jefferson
Medical College of Thomas Jefferson University in Philadelphia.
His study, published Sunday in the online edition of the journal Nature
Medicine, was prompted by reports that 10 patients taking Gleevec for
chronic myelogenous leukemia developed severe congestive heart failure.
Gleevec, sold under the Glivec in some countries, had worldwide sales of
$1.2 billion in the first six months of this year, according to the
manufacturer, Novartis Pharmaceuticals Corp.
"Gleevec is a wonderful drug and patients with these diseases need to be
on it. It's a lifesaving drug for sure," Force said in a telephone
interview.
"This is not a Vioxx situation," Force added, referring to Merck & Co.
(MRK)'s painkiller that was pulled from the market because of heart side
effects.
Force said he is trying to call attention to the fact that Gleevec and
other similar drugs coming along could have significant effects on the
heart and that doctors need to be aware of this and watch for symptoms.
These patients can be helped with heart treatment, he said.
Novartis cited the limited data and said further research was needed to
better understand the relationship between such studies and their
potential impact on monitoring patients who are on the drug.
The company said in a written statement that the prescribing information
with the drug includes data on heart problems. In addition, the drug
maker said clinical trials and postmarketing safety data have shown that
the incidence of heart failures among people taking drug is "extremely
rare."
Novartis said Force's work does not change "the positive benefit/risk
ratio of Glivec for thousands of patients being treated for cancer and
other life-threatening diseases."
Force said the 10 patients with heart failure were taking Gleevec at the
University of Texas' M.D. Anderson Cancer Center in Houston and had no
heart problems before going on the drug.
He said doctors took baseline measures of the patients' left ventricular
heart function and determined that heart failure developed in these
patients between two months and 14 months after they began Gleevec.
Dr. Jean-Bernard Durand of M.D. Anderson discussed these cases with
Force at a meeting and suggested they try to determine the cause of this
problem, Force said.
Gleevec targets three specific proteins, including one called ABL.
In chronic myelogenous leukemia, genes known as ABL and BCR become fused
and produce a hybrid BCR-ABL enzyme that is always active. The
overactive BCR-ABL, in turn, drives the excessive proliferation of white
blood cells that is the hallmark of leukemia.
Using viruses that produced for normal ABL and a Gleevec-resistant
mutant in laboratory studies and in mice, the researchers found that
Gleevec inhibited the normal enzyme but not the mutant, and the mutant
ABL "rescued" heart cells from the toxic effects of Gleevec.
The research was supported by the National Heart, Lung and Blood
Institute, the Leukemia and Lymphoma Society, the Finnish Heart
Foundation and the Paavo Nurmi Foundation.

Re: [cml 2] Lasix stoppage

2007-12-24 04:59:51

In a message dated 7/20/2006 12:47:33 P.M. Eastern Daylight Time,
Educatorsusan@... writes:
TRITRATION is the key. I am VERY sensitive to medications PERIOD.
The fact that I was forewarned once reduced to 300 mg of Gleevec and
WANTED to decrease the Lasix (which was fine with everyone
Dear Susan, thank you so much for your email. I did not know this, and I
take 40mgs. Lasix every day! I was thinking of stopping during the hot hot
weather because of cramping, but I'll do what you suggest, drop to 20 instead.
Hugs, Lynne A

Re: children

2007-12-24 03:09:46

Welcome to the group Angela.
My kids were 7 and 9 when I was diagnosed. It took me a couple of
days to "collect myself" but as soon as I was able to hold a
conversation without emotion, I did and told them everything in a
very matter of fact way.
I told them that I went to the doctor, had a blood test and found
out that I had leukemia. We talked about what leukemia was the same
way you might discuss how to make a particular recipe. It was
information without emotion. I didn't want them to be scared or
worried and I didn't want it to turn into a dramatic conversation. I
just wanted them to be informed. I couldn't dream of keeping it a
secret from them as I wouldn't want someone close to me, keeping a
secret like that from me.
Their first question was "are you going to die" to which I
responded, "yes, but everyone will at one time or another". I
explained that there was a great new drug, that I was going to try
to get (at that time Gleevec wasn't front line treatment) and that
this drug was going to help me to stay alive for as long as I could
but no one knows the future.
At that time, I wasn't sure if I would have a BMT so I told them
that and explained that there were alot of things we didn't know
just yet but that as we find them out, we'll all learn together. I
said we could all get hit by a bus crossing the street tomorrow but
we can't dwell on the fear of dying. All we can do is take care of
ourselves as best we can and make sure we look both ways before
crossing the street :)
They were very cool with the subject and we focused on the science
part of it, not the emotional part of it. A year later my older
daughter did a project in school on blood and how blood functions.
She insisted on doing the entire project without any help from me
and when she was done she proudly displayed her work which made me
realize that she understood blood and the lymphatic system better
than most adults! I was very proud of her and amazed at just how
much she really understood.
Now my kids are 12 and 14 and CML is just a regular part of our
lives as is the weather. They see me take my pills, they know when
I have doctors appointments etc. To them, my doctors appointments
are no different than dentist appointments or any other appointments
for that matter.
Your kids are so young though, that you probably don't even need to
have a formal discussion with them. If they see your husband taking
a pill and they ask why is Daddy taking that pill, you can casually
say "that's for his leukemia, it helps to make his blood healthy"
and leave it at that then answer their questions as they come up. Or
if they see him limping around a bit after having a BMB, you can say
casually that Daddy had a test today that hurt his back a little but
he'll feel better soon.
I also use all the proper terms like "leukemia" and "CBC" or "bone
marrow biopsy" etc, because I don't want them to fear the words.
Some people can't say the word "cancer", they call it "the C word".
I believe if you can't say the word, it just reinforces the fear
that this must be a really bad thing. Of course cancer is not a
good thing but it doesn't have to a horrible, deathly fear either.
If you don't make CML an issue, it won't be one. That's my motto at
least :)
Take care,
Tracey
dx Jan 2002

Lasix stoppage

2007-12-23 20:52:14

I am reading what you are all saying here about Lasix. I have one
concern for all of you.
In regards to stopping Lasix COLD TURKEY---this is absolutely NOT a
good idea. I know that I had to SLOWLY tritrate off the Lasix. I
was on 40mg a day. Carolyn, from Dr.Druker's office, informed me
what might happen when I stopped. So, rather than expereiencing the
not so nice side effects, I tritrated slowly. I went to 40 mg of
Lasix every other day, with 20 mg on the days in-between. I still
felt some swelling on the 20, but I was backed up the next day with
the 40. Once I did not feel the swelling, I just did 20 mg. for about
a week...then became adventuresome and went every other day KNOWING
that at any time, I could "wean" back or "WEAN" forward. Then I went
every two days. Once I felt NO swelling at all, I went to every
three days, then four, then 5, then I stopped. Three weeks later, I
stopped the Potassium.
This is a drug NOT TO BE TAKEN LIGHTLY. Otherwise, you will have all
these side effects that you are talking about...the eyeball fluid
thing, the ear thing, if not careful---the weight gain.
TRITRATION is the key. I am VERY sensitive to medications PERIOD.
The fact that I was forewarned once reduced to 300 mg of Gleevec and
WANTED to decrease the Lasix (which was fine with everyone) BUT
Carolyn mentioned some of the side effects I might have. WE BOTH
LAUGHED...knowing my history. So, I told her my plan...she told me
to go with it and let her know how it went. It went beautifully!
Hugs,
Susan R
Miami, FL

Re: [cml 2] childern

2007-12-23 18:07:24

My son is 2. He knows Mommy has a boo-boo in her blood and that I go to the
doctors each month to have them make sure I'm OK. He has watched them take the
blood out on occasion. He knows that my boo-boo bothers me some days and I have
to take it easy. He also knows that I take a pill to make my boo-boo better and
that he musn't touch the pills.
For a 5 year old I would go so far as to say that Daddy has a desease that is
being taken care of by his pill. Maybe have the 5 year old help Daddy to get a
snack to take his pill or something if your son is having trouble with not being
able to control the situation (depends on the child...A type personalities may
do well with having some way to help). You shouldn't give him the
responsibility of reminding Dad to take his pill as you don't want him to feel
that he has any ownership in causing or helping the desease (you would never
want him to blame himself if Dad was suddenly not feeling well). At 5 he's old
enough to see Dad taking pills and going to doctors. He's old enough to know
that Dad will be fine and that everything is under control.
I wouldn't worry any of the kids by telling them it was a desease that could
kill or that it could get worse unless it is of immediate concern from your
doctor. For the most part I would treat it as if you had diabetes and had to
take insulin to control the desease.
By the time he is 8 or 10 maybe do a 'school project' or similar type of thing
on CML and help him to realize how lucky his dad was to be born in a time where
gleevec and other medications exist that help us all to survive. Again, I
wouldn't approach the mortality of it all until at least then...kids who are 5
have no real concept of death and can't realy understand that they are so lucky
to have Daddy alive. I appreciate you wanting your sons and daughter to
appreciate every moment they have with your husband but they can't realy
understand the concept of loosing him at their age. For right now take every
moment you can to make wonderful memories together. Take every picture you can
and cherrish every little kiss. You never know what tomorrrow brings for any of
us and you have to love every second those kids give you as a gift.
The main thing is to not give your kids too much information that they can not
understand and to make sure they don't have any ownership in 'making Daddy
better'. You need to taylor what you say to their level of understanding.
Good luck!!!
:}
Alicia
View our family's photos at webshots
Our pet's pages:
Simba: www.catster.com/?219163
Nala: www.dogster.com/?215653 Pumbaa:www.dogster.com/?225974

a poem that will make any parent cry and get chills

2007-12-23 09:20:18

To My Child
Just for this morning, I am going to smile when I see your face and
laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear,
and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick
you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let
you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the
computer off, and sit with you in the backyard and blow bubbles..
Just for this afternoon, I will not yell once, not even a tiny
grumble when you scream and whine for the ice cream truck, and I
will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to
be when you grow up, or second guess every decision I have made
where you are concerned. Just for this afternoon, I will let you
help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us
both a Happy Meal so you can have both toys..
Just for this evening, I will hold you in my arms and tell you a
story about how you were born and how much I love you.
Just! for this evening, I will let you splash in the tub and not get
angry.
Just for this evening, I will let you stay up late while we sit on
the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss
my favorite TV shows.
Just for this evening when I run my finger through your hair as you
pray, I will simply be grateful that God has given me the greatest
gift ever given.
I will think about the mothers and fathers who are searching for
their missing children, the mothers and fathers who are visiting
their children's graves instead of their bedrooms, and mothers and
fathers who are in hospital rooms watching their children suffer
senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you good night I will hold you a little tighter, a
little longer. It is then, that I will thank God for you, and ask
him for nothing, except one more day..............

childern

2007-12-23 08:57:13

Hi my name is Angela and my husband has CML. He was diagnosed in Dec.
of 2003 two days after Christmas and one month after our second son
was born. We both had a very hard time with this and still do. Since
then we have had another baby, a girl (finally-lol) and we are closer
than ever before. The biggest problem that we are having right now is
the question on how to tell our childern about his illness. He is
doing pretty good right now that's why we rather tell them now so it
doesn't scare them as much if he gets bad again. I have asked family
and friends for advice and all they say is just tell them like it's no
big deal or something. My oldest son will be 5 in Nov., my other son
will be 3 in Nov.,and my daughter just turned one at the end of June.
I realize that my oldest son is the only one who would really
understand at least somewhat but we believe that he has the right to
know. Please anyone who has any advice I would be so greatful.
Thankyou.

Re: Tasigna filing brought forward

2007-12-22 21:13:24

Is Tasigna the AMN107 aka super gleevec? Is there any one in the group
taking it and are the side affects really fewer?
Lisa Martinez

Re: Lynn and the big edema issues!

2007-12-22 12:08:45

Lynn:
What you said about Dr. Druker, does not even sound like him at all.
I say that because I see him every six months. And side effects...I
had all the common ones, the not so common, the rare and the almost
rare ones!!! I have not known him to dismiss any of them...he seems
so pro quality of life...anyway, this is not to say that this did not
happen. Will you be seeing him again? Perhaps your doctor could
talk with Dr. Druker since you did go out there for a consult. Also,
Carolyn, his nurse, knows what to do for each side effect (even knew
what to do with me and I was complicated!!) The only side effect
that I was lucky to avoid completely was the skin rash---I am very
thankful for that! I have not had a trasnfusion since November
16, 2005--so I have a lot to be thankful for! i think that if there
had to be a queen of side effect...it had to be me!
I have been a challenge to him needless to say! I am still on
Gleevec. I am taking 300mg...per Dr. Druker's request.
This has been a wonderful summer and relaxing and enjoying it! I had
my first wonderful classroom of Kindergarten children in five years!
Has your Potassium level been taken lately? That also needs to be
monitored!
With the edema, the only thing that REALLY helped me was elevating my
feet almost all the time except in school---even then I would just
sit!
Hugs,
Susan

Tasigna filing brought forward

2007-12-22 08:40:36

http://www.pharmaceutical-business-review.com/article_feature.asp?guid=B
8C71E87-91AA-4683-9FAD-DA19188F71A4
Novartis:
Tasigna filing brought forward
July 2006
By Fleur Pijpers
Following the approval of Bristol-Myers Squibb's Sprycel in June,
Novartis
has brought forward its intended filing date for Tasigna to late 2006.
Both
drugs are capable of overcoming Gleevec resistance, marking a
significant
breakthrough for cancer patients. Given this, and the fact that Novartis
has
relevant market experience thanks to Gleevec, Tasigna could prove a
worthy
opponent for Sprycel.
Novartis has brought forward the intended filing date for approval of
its
next-generation Gleevec product, which will be marketed as Tasigna
(nilotinib) and is known as the 'son of Gleevec'. The company planned to
file for both US and European approval in early 2007, but, following the
recent approval of Bristol-Myers Squibb's similar product Sprycel
(dasatinib), Tasigna's regulatory filing is now set to occur in late
2006.
Tasigna is an orally available inhibitor of Bcr/Abl, c-Kit and
platelet-derived growth factor (PDGF). The drug retains half the
chemical
make-up of Gleevec, with the added capability of tighter binding with
Bcr/Abl to prevent cell proliferation and induce apoptosis, otherwise
known
as cell death. This has the effect of increasing the potency of Tasigna,
with the potential to overcome Gleevec resistance in patients.
Gleevec, known as Glivec outside the US, is a key drug in Novartis'
portfolio, having generated sales of $1.2 billion in the first half of
2006.
In addition, the drug is currently the gold standard for the treatment
of
chronic myeloid leukemia (CML) and gastrointestinal stromal tumors
(GIST).
However, despite Gleevec's numerous advantages, weaknesses have begun to
emerge, namely in the form of resistance. It is estimated that
approximately
4% of newly diagnosed CML patients already have Gleevec resistance,
while up
to 20% develop resistance over time.
In clinical trials, both Sprycel and Tasigna have demonstrated the
ability
to overcome Gleevec resistance, thus representing a significant
development
for patients. However, given Sprycel's first-to-market status, it is
likely
that Bristol-Myers Squibb's drug will dominate, claiming a significant
proportion of market share.
Nevertheless, Novartis has gained extensive experience in the CML and
GIST
markets with Gleevec, and the company's well-established sales and
marketing
capabilities will undoubtedly prove invaluable upon Tasigna's launch.

New phase I trial for Gleevec resistance/intolerance

2007-12-22 03:19:35

Hello All,
New Phase I starting at MD Anderson for new drug to treat Gleevec
resistance/intolerance.
Article on CML Society discussion page.
www.cmlsociety.org
Cheers,
Cheryl-Anne

Names on the RV to Alaska!

2007-12-22 00:54:54

Hello everyone
We now have the motorhome all wrapped up and ready to leave on Tuesday
25th, next week. This is the last call for anyone with leukemia to
have their names written on the sides of the rv before we leave. We
will be writing only your first name and initial of last name.
To see what the vehicle will look like, go to www.roadrunnersusa.com
or www. Livingwithcml.blogspot.com.
Email me at livingwithcml@... with your name please feel free
to tell me a bit about yourself and your journey. That information
will stay private, but I am interested.
Whether you have your name up on there or not you will all be in our
hearts every mile of the way.
Thank you for the inspiration and your courage and help that you have
all shown.
Love and Light and CURE!
Annie
(mom of Steven)

Re: Anyone with big edema issues?

2007-12-21 15:44:03

Lynn:
I do not remember how much Gleevec you are on.
I was on Lasix for 2 and a half years...40 mg. I had a lot of issues
with Gleevec and edema was a big factor. Most people (including
doctors)do not realize how awful it can truly be when you are on your
feet all day. I took it once in the morning and went to the bathroom
two-three times right after. By 11:00 am (since I took the dose with
breakfast around 6:45 am), I was through with rushing to the
bathroom. When you are on this dosage though, potassium needs to be
watched VERY carefully. I had gone to Oregon and within one week
after 1 year on Lasix), I was in BIG trouble! Luckily, they had my
counts from the week prior and I was in ther perfect range...but that
one test in Oregon proved that my potassium was dangerously low and
they would not let me go home without a prescription being filled and
watching me take one tablet there in their office!
Talk to your doctor first!
I am off the Lasix now.
Word of advice, I would not automatically switch to another drug
because of this problem. The BMS drug can cause pleural infusion
which if you thought edema was an issue...think again!
Hugs,
Susan Rosenthal
Miami, Florida
PCRU since October 2004!!!

Bit of a heart tugger.........read with a Kleenex handy! Posted by: "Amy B." <a href="/group/CML2/post?postID=vS1nERyOQHyYlxtJH-IaLebRiKH2Y1Xiv07gBMmpz7xhGkH9LfdzO9Dz5GuZSCH7gTnN_0yLdaLN-jJZLg">aimesc31@...</a> aimesc31

2007-12-21 05:56:23

What a touching story! Wonderful. I did have Kleenex handy! And--used it!
Margot

RE: [cml 2] edema issues

2007-12-21 04:05:25

Hi Lora,
My goodness, this sounds extremely frustrating and painful!
I'm surprised that three months after stopping Gleevec the edema has not
improved. Have the docs done tests to rule out other causes of the
edema, rather than simply trying to blame Gleevec and leaving it at
that?
There are other possible causes of edema, as you probably know,
including congestive heart failure, circulatory problems, cirrhosis,
kidney disease, etc.
Also, some people develop resistance to diuretics, which means they stop
working. Some people also develop tolerance of diuretics, which can
develop with long-term use (the body isn't affected anymore by them).
These may be suspected if people have persistent edema despite diuretic
use, low sodium diet and physical activity.
I sure hope you continue to work with the docs to get to the true bottom
of this, as an underlying cause may be going untreated.
Jennifer G.
www.cmlsupport.com
www.upstairswindow.org

Re: edema issues

2007-12-20 22:00:29

Hi Lora,
Thank you so much for writing back about this issue. My heart goes
out to Terry for having to put up with this as well. Isn't it enough
that we have CML and that we are trying to keep ourselves alive and
happy? Now, all this extra weight on top of it?
I too am very concerned about long term. I am 43 and have two young
children, age 6 and 10. I did the career thing in my 20's and early
30's and have been a stay at home Mom for 10 years. Now, I couldn't
get disability if I tried because I've been raising my own kids!
At this point, there is no way I could hold down a job. I feel like
I'm riding a rollercoaster, going up and down with side effects, and
never knowing how the next day will be. On the good days, I tend
to "overdo" because I'm playing "catchup".. Then, the next day, I'm
nearly horizontal, because I pushed too hard. It's hard to find the
balance.
I was once a long distance cyclist, working full time and training
300 miles a week. Now, I don't even recognize that person. It's
like I've done a 180!
It's so hard some days. I want to run around with my girls and I
can't. Thank God I have a great husband who takes over when I
can't. I feel so burned out and blimped out. It's obvious it's
water weight, but it's not coming off.
I had a consult with Dr. Druker to make sure I was doing everything
possible for my CML and to discuss my side effects. Unfortunately, I
didn't get a good response from him regarding my side effects. He
didn't even want me to pull up my sleeve so I could show him my
blimped out arms that look like a sausage casing! He just kept
saying not to blame everything on Gleevec, so I was highly put off,
because I was never like this beforehand! He gave me no remedies or
advice. I'm even worried about long term Lasix usage. (I don't want
to be on it forever if I don't have to!) So, where do you go from
that?
My own Hem/Onc is very compassionate and aware of the edema, but also
offers no advice other than to continue with the Lasix.
I honestly don't know what to do. I even wrapped my legs in ace
bandages and elevated them one night, but it's effect is only
temporary. The next day, I was back to puffy.
Sincerely,
Lynn (Snickersunny)

Re: [cml 2] Anyone with big edema issues?

2007-12-20 14:30:40

Hi Lynn,
Have you communicated with Carolyn at OHSU about this....because you
consulted there, I think they could give you some info (and/or your
doctor). I have not had much of an edema problem but I am sure they have
experience with others who have.
But, as far as switching drugs..............it might be worth
considering???? Again, I would ask their opinion. I was on 800mg IM.......I
had the eye bleeds, puffy AM eyelids, some vocal cord edema, some ear
congestion.............and all these things are gone...........
BUT a new drug will have it's own side effects, which vary for people.
I think I would get OHSU's opinion about what else to try for the edema
first. Yours sounds pretty significant.
Nancy C.

edema issues

2007-12-20 04:59:36

Lynn, my dh, Terry, has gained over 80 pounds since getting diagnosed with
CML. He has now dropped 15 pounds since going up to the 40mg of Lasix. To
be honest, he can't seem to make any further progress....and yep, you can tell
it is water weight, just looking at his face & how puffy it is......even
though he is now on Dasatinib, he still has Gleevec eyes as we call it.
However, they do look better than when he was on Gleevec.
Terry definitely eats probably half of what he did previous to all this
happening. He is a big guy to begin with, 6 foot 1, and usually hovering at
275
pounds. When he started really putting on the pounds at Christmas time, I
kept trying to get our oncologist attention about the water weight, but he
just sees Terry as an overweight, lazy guy. By the time it was February, and
Terry was admitted to the hospital, Terry was up to 350 pounds...and
apparently, the other docs on Terry's case must have said something harsh to
the
oncologist because when he finally came in to see Terry on rounds, he just
paced &
paced and was "stressing" about Terry's weight. Well, too little, too
late!!! Terry was what I called the Stay-Puff Marshmellow Man from the
Ghostbuster movie. He could barely function, barely walked, he was so
"puffed" out,
I thought if somebody stuck a toothpick in him, he would burst open & water
would pop out.
We were at a local Leukemia Society meeting about two weeks before this
happened, and several folks pulled me aside to say how bad Terry looked. I
certainly agreed...but we were seeing the oncologist about every two weeks, and
if
he was ignoring it, even if I was waving my arms, screaming, "danger, Will
Robinson".....not much else I could do.
Terry has been on Dasatinib for over 3 months now....the leg cramps are
back, but his weight is holding steady. He is having much more issues of
trying
to walk at all.....so, if in Walmart, he uses a wheelchair, just so he can
be more comfortable. He would like to exercise more..but with the 100 degree
plus heat each day, now he is working fulltime!!!....he just comes home &
collapses and goes to sleep. He is a big water drinker...but if you ask me, I
think he drinks less than he used to, also.
the concerns I have long term with the edema is not only the excessive
weight, but the weight impacting his legs, muscles, and joints, feet, trying to
support that weight. Also, I am highly concerned about the toll on his heart
trying to support the heavier body.
I kind of thought that Terry would drop some water weight with the summer
heat..but it doesn't seem to be happening to me. So, I know I will put edema
on my list on his next oncology viist.
Lynn, I can only urge you to ask for more extensive help from your
oncologist, since the edema is such a concern to you.
Lora

Anyone with big edema issues?

2007-12-20 03:07:21

Hi everyone,
I have been having a heck of a time with edema in my extremities.
I'm on 20 mg Lasix twice a day, but it really doesn't take care of
the edema. I've been following a low salt/low processed food diet,
but still no avail. My weight has ballooned. :-(
I am so frustrated and it makes me very sad. I honestly don't know
what more to do. I have big legs to begin with, and this side effect
has really changed my life. It's really getting hard to get around.
This has been my only side effect from Gleevec that is very hard to
tolerate. I am PCRU but am wondering if I should try out BMS when it
comes to market? I didn't want to try it until I needed it, because
GLeevec is working... but this edema is getting very old.
Does anyone take a higher dose of Lasix? It's just weird.. If I
don't take Lasix, I hardly go-even if I drink a ton of water. My
kidney function tests all come out normal though. What is going on?
Is anyone else having this problem?
Any and all advice is welcomed. Many Thanks!
Lynn
Dx'd 12/03
PCRU 400 mg Gleevec

Scientific American Article - Stem Cells: The Real Culprits in Cancer?

2007-12-19 21:56:08

Stem Cells: The Real Culprits in Cancer?
This article is from the current issue of Scientific American - it
provides a very good understanding of the role of stem cells in cancers.
http://www.sciam.com/article.cfm?chanID=sa006&colID=1&articleID=000B1BED
-0C0A-1498-8C0A83414B7F0000
Stem Cells: The Real Culprits in Cancer? A dark side of stem
cells--their potential to turn malignant--is at the root of a handful
of cancers and may be the cause of many more. Eliminating the disease
could depend on tracking down and destroying these elusive killer cells
By Michael F. Clarke and Michael W. Becker
After more than 30 years of declared war on cancer, a few important
victories can be claimed, such as 85 percent survival rates for some
childhood cancers whose diagnoses once represented a death sentence.
In other malignancies, new drugs are able to at least hold the
disease at bay, making it a condition with which a patient can live.
In 2001, for example, Gleevec was approved for the treatment of
chronic myelogenous leukemia (CML). The drug has been a huge clinical
success, and many patients are now in remission following treatment
with Gleevec. But evidence strongly suggests that these patients are
not truly cured, because a reservoir of malignant cells responsible
for maintaining the disease has not been eradicated.
Stem cells' power to self-renew already exempts them from the rules.
Conventional wisdom has long held that any tumor cell remaining in
the body could potentially reignite the disease. Current treatments
therefore focus on killing the greatest number of cancer cells.
Successes with this approach are still very much hit-or-miss,
however, and for patients with advanced cases of the most common
solid tumor malignancies, the prognosis remains poor. Moreover, in
CML and a few other cancers it is now clear that only a tiny
percentage of tumor cells have the power to produce new cancerous
tissue and that targeting these specific cells for destruction may be
a far more effective way to eliminate the disease. Because they are
the engines driving the growth of new cancer cells and are very
probably the origin of the malignancy itself, these cells are called
cancer stem cells. But they are also quite literally believed to have
once been normal stem cells or their -immature offspring that have
undergone a malignant transformation. This idea--that a small
population of malignant stem cells can cause cancer--is far from new.
Stem cell research is considered to have begun in earnest with
studies during the 1950s and 1960s of solid tumors and blood
malignancies. Many basic principles of healthy tissue genesis and
development were revealed by these observations of what happens when
the normal processes derail. Today the study of stem cells is
shedding light on cancer research. Scientists have filled in
considerable detail over the past 50 years about mechanisms
regulating the behavior of normal stem cells and the cellular progeny
to which they give rise. These fresh insights, in turn, have led to
the discovery of similar hierarchies among cancer cells within a
tumor, providing strong support for the theory that rogue stem like
cells are at the root of many cancers. Successfully targeting these
cancer stem cells for eradication therefore requires a better
understanding of how a good stem cell could go bad in the first place.
Orderly Conduct.
The human body is a highly compartmentalized system made up of
discrete organs and tissues, each performing a function essential to
maintaining life. Individual cells that make up these tissues are
often short-lived, however. The skin covering your body today is not
really the same skin that you had a month ago, because its surface
cells have all since sloughed off and been replaced. The lining of
the gut turns over every couple of weeks, and the life span of the
platelets that help to clot blood is about 10 days. The mechanism
that maintains a constant population of working cells in such tissues
is consistent throughout the body and, indeed, is highly conserved
among all complex species. It centers on small pools of long-lived
stem cells that serve as factories for replenishing supplies of
functional cells. This manufacturing process follows tightly
regulated and organized steps wherein each generation of a stem
cell's offspring becomes increasingly specialized. This system is
perhaps best exemplified by the hematopoietic family of blood and
immune cells. All the functional cells found in the blood and lymph
arise from a single common parent known as the hematopoietic stem
cell (HSC), which resides in bone marrow.
The HSC pool represents less than 0.01 percent of bone marrow cells
in adults, yet each of these rare cells gives rise to a larger,
intermediately differentiated population of progenitor cells. Those
in turn divide and differentiate further through several stages into
mature cells responsible for specific tasks, ranging from defending
against infection to carrying oxygen to tissues. By the time a cell
reaches that final functional stage, it has lost all ability to
proliferate or to alter its destiny and is said to be terminally
differentiated. The stem cells themselves meanwhile remain
undifferentiated, a state they maintain through their unique capacity
for self-renewal: to begin producing new tissues, a stem cell divides
in two, but only one of the resulting daughter cells might proceed
down a path toward increasing specificity. The other daughter may
instead retain the stem cell identity. Numbers in the overall stem
cell pool can thus remain constant, whereas the proliferation of
intermediate progenitors allows populations of specific hematopoietic
cell types to expand rapidly in response to changing needs. The
capacity of stem cells to re-create themselves through self-renewal
is their most important defining property. It gives them alone the
potential for unlimited life span and future proliferation. In
contrast, progenitors have some ability to renew themselves during
proliferation, but they are restricted by an internal counting
mechanism to a finite number of cell divisions. With increasing
differentiation, the ability of the progenitors' offspring to
multiply declines steadily. The practical significance of these
distinctions can be observed when hematopoietic stem cells or their
descendants are transplanted. After the bone marrow of a mouse is
irradiated to destroy the native hematopoietic system, progenitor
cells delivered into the marrow environment can proliferate and
restore hematopoiesis temporarily, but after four to eight weeks
those cells will die out. A single transplanted hematopoietic stem
cell, on the other hand, can restore the entire blood system for the
lifetime of the animal.
The hematopoietic system's organization has been well understood for
more than 30 years, but similar cellular hierarchies have recently
been identified in other human tissues, including brain, breast,
prostate, large and small intestines, and skin. Principles of
regulated stem cell behavior are also shared across these tissues,
including specific mechanisms for controlling stem cell numbers and
for directing decisions about the fates of individual cells. Several
genes and the cascades of events triggered by their activity--known
as genetic pathways--play key roles in dictating stem cells' fate and
function, for example. Among these are signaling pathways headed by
the Bmi-1, Notch, Sonic hedgehog and Wnt genes. Yet most of these
genes were first identified not by scientists studying stem cells but
by cancer researchers, because their pathways are also involved in
the development of malignancies.
Many such similarities between stem cells and cancer cells have been
noted. The classical definition of malignancy itself includes cancer
cells' apparent capacity to survive and multiply indefinitely, their
ability to invade neighboring tissues and to migrate (metastasize) to
distant sites in the body. In effect, the usual constraints that
tightly control cellular proliferation and identity seem to have been
lifted from cancer cells.
Normal stem cells' power to self-renew already exempts them from the
rules limiting life span and proliferation for most cells. Stem
cells' ability to differentiate into a broad range of cell types
allows them to form all the different elements of an organ or tissue
system. A hallmark of tumors, too, is the heterogeneity of cell types
they contain, as though the tumor were a very disorderly version of a
whole organ. Hematopoietic stem cells have been shown to migrate to
distant parts of the body in response to injury signals, as have
cancer cells. In healthy stem cells, strict genetic regulation keeps
their potential for unlimited growth and diversification in check.
Remove those control mechanisms, and the result would be some-thing
that sounds very much like malignancy. These commonalities, along
with growing experimental evidence, suggest that failures in stem
cell regulation are how many cancers get started, how they perpetuate
themselves, and possibly how malignancies can spread.
Achilles' Heel
The presence of stem cells in certain tissues, especially those with
high cell turnover such as the gut and the skin, seems to be an
overly complicated and inefficient system for replacing damaged or
old cells. Would it not appear to make more sense for an organism if
every cell could simply proliferate as needed to supply replacements
for its injured neighbors? On the surface, perhaps--but that would
make every cell in the body a potential cancer cell. Malignancies are
believed to arise when an accumulation of "oncogenic" changes to key
genes within a cell leads to the abnormal growth and transformation
of that cell. Gene mutations typically happen through a direct
insult, such as the cell being exposed to radiation or chemicals, or
simply through random error when the gene is improperly copied before
cell division.
Because the rare stem cells are the only long-lived cells in the
organs where most cancers develop, they represent a much smaller
potential reservoir for cumulative genetic damage that could
eventually lead to cancer. Unfortunately, because stem cells are so
long-lived, they also become the most likely repository for such
damage. Indeed, stem cells' longevity would explain why many cancers
develop decades after tissues are subjected to radiation--the initial
injury may be only the first in a series of mutations required to
transform a healthy cell into a malignant one. In addition to
accumulating and preserving these oncogenic scars, a stem cell's
enormous proliferative capacity makes it an ideal target for
malignancy. Because nature so strictly regulates self-renewal, a cell
population already possessing that ability would need fewer
additional mutations for malignant transformation than would cells
lacking that capacity.
With these considerations in mind, several possible paths to
malignancy become apparent.
In one model, mutations occur in the stem cells themselves, and their
resulting loss of control over self-renewal decisions produces a pool
of stem cells predisposed to malignancy. Subsequent additional
oncogenic events that trigger proliferation of the malignant cells
into a tumor might happen in the stem cells or in their descendants,
the committed progenitor cell population.
A second model holds that oncogenic mutations initially occur in stem
cells but that the final steps in transformation to cancer happen
only in the committed progenitors. This scenario would require the
progenitors' lost self-renewal capacity to be somehow reactivated.
Current evidence supports both models in different cancers. And at
least one example exists of both processes playing a role in
different stages of the same disease. Chronic myelogenous leukemia is
a cancer of the white blood cells caused by the inappropriate fusion
of two genes. Insertion of the resulting fused gene will transform a
normal hematopoietic stem cell into a leukemia stem cell.
Untreated, CML invariably progresses to an acute form known as CML
blast crisis. Catriona Jamieson and Irving Weissman, both then at the
Stanford University School of Medicine, demonstrated that in patients
who progressed to CML blast crisis, the specific additional genetic
events responsible for this more virulent version of the disease had
conferred the ability to self-renew on certain progenitor cells.
Steady Pursuit
Over the past decade, evidence that stem cells could become malignant
and that only certain cancer cells shared a variety of traits with
stem cells strengthened the idea that the driving force underlying
tumor growth might be a subpopulation of stem like cancer cells. The
theory has a longer history, but in the past the technology to prove
it was lacking. By the 1960s a few scientists were already beginning
to note that groups of cells within the same tumor differed in their
ability to produce new tumor tissue. In 1971 C. H. Park and his
colleagues at the University of Toronto showed that within a culture
of cells taken from an original, or "primary," myeloma (a cancer
affecting plasma cells in bone marrow), the cells displayed
significant differences in their ability to proliferate. At the time,
Park's group could not interpret this phenomenon decisively, because
at least two explanations were possible: all the cells might have had
the ability to multiply in culture but by chance only some of them
did, or else a hierarchy of cells was present in the tumor and cancer
stem cells were giving rise to cells that were nontumorigenic, or
incapable of proliferation.
Destroy the engine driving the disease, leaving nontumorigenic cells
to die off.
Philip J. Fialkow of the University of Washington had already
demonstrated in 1967 that the stem cell model was probably the
correct one for leukemia. Using a cell-surface protein marker called
G-6-PD, which can identify a cell's lineage, Fialkow showed that in
some women with leukemia, both the tumorigenic cells as well as their
more differentiated nontumorigenic progeny had all arisen from the
same parent cell. These early studies were critical in the
development of the stem cell model for cancer, but they were still
limited by researchers' inability to isolate and examine different
cell populations within a tumor. A key event in stem cell biology,
therefore, was the commercial availability, beginning in the 1970s,
of an instrument called a flow cytometer, which can automatically
sort different living cell populations based on the unique surface
markers they bear. A second crucial event in the evolution of cancer
stem cell studies was the advent during the 1990s of conclusive tests
for self-renewal.
Assays to establish self-renewal in human cells did not exist until
Weissman of Stanford and John E. Dick of the University of Toronto
developed methods that allowed normal human stem cells to grow in
mice. Using flow cytometry and this new mouse model, Dick began in
1994 to publish a series of seminal reports identifying cancer stem
cells in leukemia. In 2003 Richard Jones of Johns Hopkins University
identified a cancer stem cell population in multiple myeloma. Earlier
the same year our own laboratory group at the University of Michigan
at Ann Arbor had published the first evidence of cancer stem cells in
solid tumors. By transplanting sorted populations of cells from human
breast tumors into mice, we were able to confirm that not all human
breast cancer cells have the same capacity to generate new tumor
tissue. Only one subpopulation of the cells was able to re-create the
original tumor in the new environment. We then compared the
phenotype, or physical traits, of those new tumors with that of the
patient samples and found that the profile of the new tumors
recapitulated the original. This finding indicated that the
transplanted tumorigenic cells could both self-renew and give rise to
all the different cell populations present in the original tumor,
including the nontumorigenic cells. Our study attested to the
presence of a hierarchy of cells within a breast cancer similar to
those identified in blood malignancies.
Since then, the investigation of cancer stem cell biology has
exploded, as labs across the world continue to find similar
subpopulations of tumorigenic cells in other forms of cancer. In
2004, for example, the laboratory of Peter Dirks of the University of
Toronto identified cells from primary human central nervous system
tumors with the capacity to regenerate the entire tumor in mice. In
addition, he found a high number of the purported cancer stem cells
present in one of the fastest-growing forms of human brain cancer,
medulloblastoma, compared with far fewer tumorigenic cells found in
less aggressive brain tumor types.
A related area of recent intensive investigation is also providing
support for the cancer stem cell model. The signaling environment, or
niche, in which tumors reside appears to strongly influence the
initiation and maintenance of malignancy. Studies of normal body
cells as well as of stem cells have already established the essential
role of signals emanating from surrounding tissue and the supportive
extracellular matrix in sustaining a given cell's identity and in
directing its behavior. Normal cells removed from their usual context
in the body and placed in a dish have a tendency to lose some of
their differentiated functional characteristics, for example. Stem
cells, in contrast, must be cultured on a medium that provides
signals telling them to remain undifferentiated, or they will quickly
begin proliferating and differentiating--seemingly as though that is
their default programmed -behavior, and only the niche signals hold
it in check.
In the body, stem cell niches are literal enclaves surrounded by
specific cell types, such as stromal cells that form connective
tissue in the bone marrow. With a few exceptions, stem cells always
remain in their niche and are sometimes physically attached to it by
adhesion molecules. Progenitor cells, on the other hand, move away
from the niche, often under escort by guardian cells, as they become
increasingly differentiated. The importance of niche signaling in
maintaining stem cells' undifferentiated state and in keeping them
quiescent until they are called on to produce new cells suggests that
these local environmental signals could exert similar regulatory
control over cancer stem cells. Intriguing experiments have shown,
for example, that when transplanted into a new niche, stem cells
predisposed to malignancy because of oncogenic mutations will
nonetheless fail to produce a tumor. Conversely, normal stem cells
transplanted into a tissue environment that has been previously
damaged by radiation do give rise to tumors.
Many of the same genetic pathways identified with signaling between
stem cells and their niche have been associated with cancer, which
also suggests a role for the niche in the final transition to
malignancy. For example, if malignant stem cells were being held in
check by the niche but the niche was somehow altered and expanded,
the malignant stem cell pool would have room to grow as well. Another
possibility is that certain oncogenic mutations within cancer stem
cells could permit them to adapt to a different niche, again letting
them increase their numbers and expand their territory. Still a third
alternative is that mutations might allow the cancer stem cells to
become independent of niche signals altogether, lifting environmental
controls on both self-renewal and proliferation.
Closing In
The implications of a stem cell model of cancer for the way we
understand as well as treat malignancies are clear and dramatic.
Current therapies take aim against all tumor cells, but our studies
and others have shown that only a minor fraction of cancer cells have
the ability to reconstitute and perpetuate the malignancy. If
traditional therapies shrink a tumor but miss these cells, the cancer
is likely to return. Treatments that specifically target the cancer
stem cells could destroy the engine driving the disease, leaving any
remaining nontumorigenic cells to eventually die off on their own.
Circumstantial evidence supporting this approach already exists in
medical practice. Following chemotherapy for testicular cancer, for
example, a patient's tumor is examined to assess the effects of
treatment. If the tumor contains only mature cells, the cancer
usually does not recur and no further treatment is necessary. But if
a large number of immature-looking--that is, not fully
differentiated--cells are present in the tumor sample, the cancer is
likely to return, and standard protocol calls for further chemotherapy.
Whether those immature cells are recent offspring that indicate the
presence of cancer stem cells remains to be proved, but their
association with the disease prognosis is compelling. Stem cells
cannot be identified based solely on their appearance, however, so
developing a better understanding of the unique properties of cancer
stem cells will first require improved techniques for isolating and
studying these rare cells. Once we learn their distinguishing
characteristics, we can use that information to target cancer stem
cells with tailored treatments. If scientists were to discover the
mutation or environmental cue responsible for conferring the ability
to self-renew on a particular type of cancer stem cell, for instance,
that would be an obvious target for disabling those tumorigenic
cells. Encouraging examples of this strategy's promise have been
demonstrated by Craig T. Jordan and Monica L. Guzman of the
University of Rochester. In 2002 they identified unique molecular
features of malignant stem cells believed to cause acute myeloid
leukemia (AML) and showed that the cancer stem cells could be
preferentially targeted by specific drugs. Last year they reported
their discovery that a compound derived from the feverfew plant
induces AML stem cells to commit suicide while leaving normal stem
cells unaffected.
Some research groups are hoping to train immune cells to recognize
and go after cancer stem cells. Still others are exploring the use of
existing drugs to alter niche signaling in the hope of depriving
cancer stem cells of the environmental cues that help them thrive.
Yet another idea under investigation is that drugs could be developed
to force cancer stem cells to differentiate, which should take away
their ability to self-renew. Most important is that cancer
investigators are now on the suspects' trail. With a combination of
approaches, aimed at both targeting genetic pathways unique to the
maintenance of cancer stem cells and disrupting the cross talk
between tumor cells and their environment, we hope to be able soon to
find and arrest the real culprits in cancer.

Bit of a heart tugger.........read with a kleenex handy!

2007-12-19 15:58:39

THE FIREMAN
In Phoenix, Arizona, a 26-year-old mother stared
down at her 6 year old son, who was dying of
terminal leukemia. Although her heart was filled
with sadness, she also had a strong feeling of
determination. Like any parent, she wanted her
son to grow up and fulfill all his dreams. Now
that was no longer possible..
The leukemia would see to that. But she still
wanted her son's dreams to come true. She took
her son's hand and asked, "Billy, did you ever
think about what you wanted to be once you grew
up? Did you ever dream and wish what you would do
with your life?"
Mommy, "I always wanted to be a fireman when I grew up."
Mom smiled back and said, "Let's see if we can
make your wish come true."
Later that day she went to her local fire
department in Phoenix, Arizona, where she met
Fireman Bob, who had a heart as big as Phoenix.
She explained her son's final wish and asked if
it might be possible to give her six-year-old son
a ride around the block on a fire engine.
Fireman Bob said, "Look, we can do better than
that. If you'll have your son ready at seven
o'clock Wednesday morning, we'll make him an
honorary fireman for the whole day. He can come
down to the fire station, eat with us, go out on
all the fire calls, the whole nine yards! And if
you'll give us ! his sizes, we'll get a real fire
uniform for him, with a real fire hat-not a toy
one-with the emblem of the Phoenix Fire
Department on it, a yellow slicker like we wear
and rubber boots. They're all manufactured right
here in Phoenix, so we can get them fast."
Three days later Fireman Bob picked up Billy,
dressed him in his fire uniform and escorted him
from his hospital bed to the waiting hook and
ladder truck. Billy got to sit on the back of the
truck and help steer it back to the fire station.
He was in heaven. There were three fire calls in
Phoenix that day and Billy got to go out on all
three calls. He rode in the different fire
engines, the paramedic's van, and even the fire chief's car.
He was also videotaped for the local news
program. Having his dream come true, with all the
love and attention that was lavished upon him, so
deeply touched Billy that he lived three months
longer than any doctor thought possible.
One night all of his vital signs began to drop
dramatically and the head nurse, who believed in
the hospice concept that no one should die alone,
began to call the family members to the hospital.
Then she remembered the day Billy had spent as a
fireman, so she called the Fire Chief and asked
if it would be possible to send a fireman in
uniform to the hospital to be wi