Please share your knowledge as this can save someone's life

2008-06-30 10:57:47

Hi All,
My brother-in-law ( aged 29 ) is suffering from Chronic myelogenous leukemia
(CML).
Doctors detected this on 17th of this month.
I have following queries CML.
1. Is there any way to cure CML completely?
2 If yes,
a. What are the possible ways?
b. Risk-factor involved?
c. Cost of the treatment?
d. Time-period needed to recover?
3. If No,
a. What are the other possible treatment available?
b. The best know treatment procedure among them?
c. Time-period of recovery?
d. How long one can survive?
Please do reply if u know something about these.
Thanks and Regards
Kuldeep

Re: [cml 2] Gleevec and LASIK

2008-06-30 05:53:36

Hello
We I had cataract surgery a while back, I had to
have additional platelet infusion before the procedure
but all went well I had one eye done
and the following week the other eye done. I had not
be able to see without glasses for well over 35 years
and now I can see like a teenager all except for small
print which I bought the dollar store glasses and they
work fine..I have low ANC but no infections at all so
I am more than happy..
SkipD
DX'ed 29 years and counting
http://easyskip.tripod.ca
(my story)

Re: [cml 2] Chat Reminder - Saturday 9:00 AM Eastern

2008-06-30 04:59:17

Can you explain about chat reminder.Paul TN.

Gleevec and LASIK

2008-06-29 22:34:28

Hi All,
Its been a long time since I posted and I am just catching up on some
of the posts. All has been going well and I have a question.
Has anyone or is anyone aware of someone who has had LASIK (eye
correction surgery) while on Gleevec?
I am trying to find out if there are any additional risks or known
adverse reactions. I know there has been some discussion lately about
eye issues but I have never had any issue eye or otherwise while on IM.
My primary onc was not sure and he's one concern was around any impact
to the healing of the cornea. He suggested I ask another Dr. we
consult with at DF which I have send an inquiry and check with NVS as
to any reported adverse effects (I did call NVS but they said they
could only give that info to my doctor and not to me).
If anyone has any information that would be much appreciated.
Thanks, Sharon

Re: capillary burst

2008-06-29 21:21:49

Hi Paul,
Unfortunately you can't attach pictures (or any attachments) to the
posts but you can upload your picture to the "photo" section of the
website. If you have problems with that, you can always send me the
picture and I'll upload it for you.
Tracey

Re: [cml 2] Newbies - "give it time" pans out

2008-06-29 07:58:04

Brenda:
I am sure you will do just fine. You body will adjust to Gleevec and
mentally you will adjust to your new life. Give it time and think of all the
hope
you have with other drugs available and in the pipeline.
You are going to be just fine.
Matt
In a message dated 2/22/2007 4:49:15 P.M. Eastern Standard Time,
barndt@... writes:
Matt; I am on 400 mg., and lucky for me it appears to be doing its
job...but next month will be the tell tale 3 month marker. Brenda
<BR
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capillary burst

2008-06-29 05:19:24

I thought I would share a pic of my red eye[capillary burst].If it happens,not
to worry looks bad ,no vision loss,goes away in a few weeks.This is in the front
and white of the eye.A direct link to Gleevec.I will be on it 15 months,second
red eye. Paul Tn.

Re: Thank you

2008-06-29 03:39:25

Dear Iris
Your message brought tears to my eyes. You put it so well, it is
definately an extra dimension and depth that these groups have given
me too. Its my son who has cml, but I could not have stayed sane
without everyone out there that has helped me so much.
Yes, every story, every cyber hand that has been held out has kept
me 'level' and therefore helped Steven too.
Cancer is in our lives, and always will be - I am just so
tremendously fortunate to be able to say that my life, and Steven's,
has actually improved dramatically since it came into our family.
And yes, strength to both you and Ilana as well as bunches of
smiles, lots of joy and a depth of happiness that comes from facing
something like cml. I have this very clear picture of a "Cure
Party" happening - I hold on to that firmly and just know it will
happen! :-)
Love, light and health to you both, Iris
Annie
Steven's mom
www.livingwithcml.blogspot.com
dimension that you
group 2 months ago when my twin
about how, apart from the incredible
regarding the disease, treatment and
courage and survival are a true inspiration. I
and my sister are ill and pray with all of my heart
thank you so

Re: [cml 2] Newbies - "give it time" pans out

2008-06-28 17:08:20

Matt; I am on 400 mg., and lucky for me it appears to be doing its
job...but next month will be the tell tale 3 month marker. Brenda

Eye pressure-Nancy C.

2008-06-28 10:33:43

In a message dated 2/22/2007 2:19:00 P.M. Eastern Standard Time,
ncogan@... writes:
Just in general, the thinking now is that it is probably a bit better to
eat the actual food than to take the same ingredients in
supplements.supplemensupplements.<WBR
don'
that is probably synergetic in them. Sometimes you can't do this because
you can't consume enough of the item. Also, there are a lot of food that
are natural diuretics...are natural diuretics...<WBR
helpful
of what you ingest....put into your body.....for the benefit it gives
you!......which rules out junk food!!
Nice to see you on the list Lynne.
Nancy C.
Dear Nancy, thanks for the info...I agree that sometimes eating the real
thing is better than supplements, because who knows exactly what we are missing
in the supplement? But, I can say with all honesty, that your help when I
had the eye hemorrhaging was invaluable. The newbies on the list can take that
to the bank. It really worked. You know about a lot of natural ways to treat
ailments and to keep the body healthy, and I hope you can educate the newer
members as you did those of us in the "older days," haha!
I talked with Norma, she is excited to meet you. Wish I could be there too.
She invited me but just now I cannot go anywhere until I can figure out what I
am going to do : They are taking me off of Gleevec due to bone pain. I
researched Lyme Disease and am following up with a doctor who specializes in
Lyme
from U of New Haven in CT. All of my symptoms which I have blamed
consistently on Gleevec, could be Lyme.
The Western Blot test is NOT definitive, even though the doctors say they
are. I need a specialist to read my results. They came back negative but 95% of
Lyme positive patients have tests that come back false-negative.
It would be a relief to find out that it has not been Gleevec causing all of
my problems. Lyme disease has the exact symptoms I have had: bone pain,
neuropathy, head pressure, visual disturbances, fatigue, etc.
So, I have been writing to the Lyme list support group moderator and she, as
well as my counselor, and her husband who is and MD, all think I should not
drop this issue. My HMO docs all think I'm nuts to pursue Lyme, but let's face
it, can Gleevec really cause all those horrid symptoms I deal with daily? In
most cases, NOT. You can have Lyme for months, years and it can be
dormant. Then, you can wake up with bone crushing pain, headaches, nausea, etc.
It
takes antibiotics to treat it.
So, after being so sick for over 2 1/2 months now, I decided to do an
experiment. I took Doxycycline for five days. My problems resolved. I have tried
to
convince the doctors to take the Western Blot test and fax it to University
of New Haven, but they won't do it.
My oncologist said to me, it is conclusive. You do not have Lyme. I said,
NO! I was bitten, had the bull's eye ring in 2003 and that is when the bone pain
and all the symptoms appeared. I believe the test is not definitive.
He said: and I quote , "Lynne, I went to Yale. I should know."
Well, I found out that my friend said that there is a faction of Yale grads
in the med field that disagree with Dr. Phillips, a Lyme specialist. Why Yale?
I ask. What has THAT to do with anything? Strange. Or was he just trying to
tell me that my personal research was bull when he spent years earning his
PHD at Yale and I am stupid? God Nanc, what a mess.
Now they want me off of Gleevec within a month, even though I had a 2 log
reduction on 400mgs. That was before the BMT speech. Yesterday, I almost took a
swing at the doctor when he mentioned BMT again.
I said, "IF I am in MR on 400mgs. why in heck did you give me the BMT spiel,
and why on earth did you up my dose to 600mgs." No answer, all he said
was, "Lynne, you are going on Bosatinib, SKI 606. We will find a trial center
for you."
Then he walked out, ignoring a week's worth of notes I took both on SKI, and
Lyme disease. I felt deflated. I had worked so hard to research. I want an
END to bone pain. I do not believe Gleevec is to blame, but then again, 30% of
Gleevec patients do experience severe bone pain.
And, for the newbies, if there is a high leukemic load, when Gleevec starts
working and they experience pain, I found out that there is something called
Herxheimer Syndrome. When a disease load is great and the patient is treated,
the meds kill off the load so fast that they experience pain or side effects.
That is why some people with CML who first take Gleevec experience some
pain. Same thing with Lyme.
It happened to me, I took the first two weeks of Doxy for the tick bite, and
then stopped because I felt sicker. So I may have not killed off the
bacteria.
Ok, I am rambling so I am going to sign off, but I just wanted to let you
know what was going on and how I am trying to find some answers. Thanks again,
Nanc, and have a great cruise, Love, Lynne
<BR
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.

Eye pressure-Nancy C.

2008-06-28 02:54:51

Hi Lynne,
First, Bilberry is another kind of berry I think....but similar to
blueberry. Most of the berries are great anti-oxidants, esp. those with a
darker color (blueberry, blackberry, raspberry, cranberry.....and concord
grapes)..........so that is helpful in general for health. But blueberry
also helps the integrity of cell membranes........so that is why it might
decrease the hemorrhages. I keep blueberries in my freezer, I pick them at
organic farms in the summer........and I put blueberries in my (medicated)
smoothie every morning.....yum! So it is something that is good.....and
good for you.
Just in general, the thinking now is that it is probably a bit better to
eat the actual food than to take the same ingredients in
supplements..........because the supplements don't have all the extra stuff
that is probably synergetic in them. Sometimes you can't do this because
you can't consume enough of the item. Also, there are a lot of food that
are natural diuretics......so they can be helpful too. It is good to think
of what you ingest....put into your body.....for the benefit it gives
you!......which rules out junk food!!
Nice to see you on the list Lynne.
Nancy C.

Eye pressure-Nancy C.

2008-06-28 02:41:30

Dear Nancy, do you still think Bilberry is a good thing to use for the eye
problems associated with Gleevec?
Remember when we used to talk about eating tons of blueberries...what is the
active ingredient in it that helps the eyes? Is it because it is a strong
antioxidant or is it something else? I remember using the Bilberry pills a
couple of years ago and within a few days my eye problems resolved. I was hoping
you would remember.....thanks, Lynne A.
<BR
email to everyone. Find out more about what's free from AOL at
http://www.aol.com.

Thank you

2008-06-27 21:53:23

Hi to all,
I lay awake till late last night thinking about the extra dimension that you
have all added to my life since joining this group 2 months ago when my twin
sister was diagnosed. I thought about how, apart from the incredible
information I am learning regarding the disease, treatment and
management, your stories of courage and survival are a true inspiration. I
am so sorry that you and my sister are ill and pray with all of my heart
that one of these days soon there will be a way to actually cure CML.
In the mean time, I wish everyone strength, hope and light and thank you so
much for the privilege of your discussions. My life is deeper and broader
thanks to you.
Iris Vancouver BC
Twin of Ilana, Johannesburg South Africa

Re: [cml 2] CMLVAX trial

2008-06-27 13:26:36

Hi Kristin,
This is the first I've heard of this trial or anything like it but I get way
behind reading the posts, too. What prompted you to get into the trial? Are
you living in Houston? Must be with that kind of schedule. I hopeyou're doing
okay. It seems those of us in trials are there because we lost response to
Gleevec. I'm doing well on Sprycel.
Please keep us informed. I've heard so many people (including docs) say that a
vaccine will ultimately be the cure for CML.
Love,
Susan L.

CMLVAX trial

2008-06-27 07:24:28

Hi Group,
I am hopelessly behind all the posts, but I wanted to check in and let
you all know that I entered the CMLVAX trial at MDACC. The vaccine
trial requires a leukine injection 2 days before each vaccination. The
day the vaccine is injected, another injection of leukine is also given.
So far I've had some local tenderness and redness, and a little more
fatigue and loss of appetite. Not a big deal. I go to MDACC once every
two weeks until the end of April, then once every three weeks,
becoming once a month in the summer for the balance of the year.
Hope all is well,
Kristin

Rash - Pam

2008-06-27 01:49:09

Hi Pam,
The typical local oncologist sees so few CML patients that they don't have
a handle on the side effects. Some of the side effects only happen in 1-2%
of patients.....or even 10%........so a onc. who is seeing 4 or 5 CMLers
won't see these side effects. This is why we get more reliable information
from a large group of CMLers like this one. And I agree, Tracey puts out a
lot of good information to this group.
Nancy C.

Re: Eye side effects

2008-06-26 10:48:30

Hi Tracey (and all),
Just wanted to put my 2 cents worth in--A retinal hemorrhage is a
hemorrhage in the back (inside) of the eye, and can be very serious
and should be seen by ophthalmologist immediately. What Paul had
sounds like a conjunctival or scleral hemorrhage (of the white part
of the eye) which is much less serious and usually goes away on its
own. My work as a medical transcriptionist for 30+ years comes in
handy sometimes--I have a pretty good understanding of anatomy and
physiology.
Vicki

Eye pressure-Wendy

2008-06-26 06:45:07

In a message dated 2/20/2007 8:19:39 P.M. Eastern Standard Time,
paulorkay@... writes:
it
Friday to
Dear Wendy, caught your post this morning regarding eye pressure. Here is
what I personally experienced:
Gleevec caused "eye bleeds" a few times for me. I took Bilberry (blueberry)
extract pills and they went away. This was recommended to me by a listmember
years ago.
I also had a build up of cells in my optic nerve, according to an
opthalmologist I saw when I first got on Gleevec 6 years ago, which caused
pressure to
my eyes. I had blurred vision and pressure in the lower part of the back of
my head. I still get it from time to time. My eyesight has worsened in the
past few years, but it could be because I am getting older (50 this October)
and because I read constantly and have eye strain.
Every morning I wake up with slight swelling around my eyes, and some
crusting, but it goes away after a while during the day. Gleevec does cause
this,
and there also could be swelling of the optic nerve, as in my case.
Just wanted to tell you of my own experience with Gleevec. You'll laugh at
this one, but early on the list, someone used Preparation H to take down the
swelling.
Pressure from inside the eye is different than outer swelling, so seeing and
ophthalmologist is the best thing to do. Edema is not fun, but it is
something that can be controlled.
I took Lasix to help bring down some of the other edema-related problems
with my body. Others on the list can help you with their own stories as well. I
hope this helps somewhat, but always check with a doctor when something does
not seem right......Lynne A.
<BR
http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free
safety and security tools, millions of free high-quality videos from across the
web, free AOL Mail and much more.

Eye side effects

2008-06-25 23:44:40

Hi Everyone,
With the recent talk about side effects that effect the eyes, I
thought I'd post this abstract:
http://www.liebertonline.com/doi/abs/10.1089/108076803322279426
It basically lists all of the occular side effects that have been
documented with Gleevec (and there's no shortage).
They include:
periorbital edema,
epiphora (excessive tear production),
extraocular muscle palsy (paralysis of the muscles in the eye),
ptosis (droopy eye lid),
blepharoconjunctivitis (infection),
glaucoma,
papilledema (optic nerve swelling),
retinal hemorrhage (sounds like what you had Paul),
photosensitivity,
abnormal vision, and
increased intraocular pressure.
Wendy, maybe one of these things could explain what your husband has
been experiencing. You might want to print the abstract and bring it
with you when you go to the ophthalmologist.
Tracey

Re: [cml 2] Newbies - "give it time" pans out

2008-06-25 22:46:13

Brenda:
What dosage are you taking?
But yes, it took me three months to allow my body to adapt to it and each
time that I increased the dosage, it took a few weeks to adjust to it as well.
Sincerely,
Matt
Jacksonville, Florida
Dx January of 2005
Gleevec since March of 2005
Treated at MD Anderson
Father of 3
In a message dated 2/20/2007 7:49:28 P.M. Eastern Standard Time,
barndt@... writes:
Hi everyone.
I have been on gleevec since December 21 2006 and have had a nasty time
of it. I have dubbed this drug "the dragon". I keep hearing people
say "give it time", and I must say at times it was hard to believe
those words. GOOD NEWS...the last three days I have not been sick
after taking gleevec. In fact, I felt better during the last three days
than I have in the last 3 months. Hooray...finally, I believe my
system is getting accustomed to it.
So all you other newbies out there who are having troubles with feeling
ill take heart....and "give it time".
Good health to all,
Brenda
<BR
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safety and security tools, millions of free high-quality videos from across the
web, free AOL Mail and much more.

Re: Newbies - "give it time" pans out

2008-06-25 21:37:45

Hello All,
I have been on Gleevec 2 years this month
I would have to say that I went through hell for a long while with it.
All of the side effects that can be expected came visiting and my and
my families life were made hell.
I finally got the right "drug cocktail" and the world became a little
brighter.
The main problem was diarrhea, I had to spend hours on the "throne".
The drug that saved me was Sandostatin, I was on the verge of giving
up and stopping the drugs and letting nature take its course.
My Dr. prescribed it and I have been basically free from diarrhea, by
luck Novartis makes both.
I can't tell you what a life saver this has been.
I have just had to go to 600 mg of Gleevec and am now using 3 needles
100mg of Sandostatin and still doing well.
I hope this helps some of you.
Regards,
Terry

Re: Newbies - "give it time" pans out

2008-06-25 10:39:31

Hi, Brenda-
I agree--I have been on Gleevec now about 5 months--and I am finally
starting to have some return of energy. I also changed to a
different antidepressant than I had been on for my diabetic
neuropathy, from Cymbalta to Effexor), and I think that really helped
lift the clouds a bit, too. I can't emphasize enough how important
it has been for me to be aware that depression was playing a role in
my feeling downright awful for a good solid 3 months. That is not to
say that I didn't have physical symptoms too--I definitely did--but
the depression really made them that much worse! So, talk to your
physician about meds, consider the possibility of depression, and
hang in there! Actually, I am not responding all that well to Gleevec
right now, so am seeing Dr Druker on 03/01 to see what he might
suggest.
I have been working full-time, but for the first three months on
Gleevec, was barely able to get out of bed because I was feeling so
awful. I had severe fatigue, nausea, chills, fevers, diarrhea, bone
aches, joint aches, muscle cramps, you name it! But all are doing
better now (knock wood!) I have occasional tummy upsets and some
general achiness but either I am just learning to deal with
everything better, or it is really getting less and less as times
passes...hopefully it is the latter!
Good health and best wishes to all. This group is fabulous. It has
gotten me through some tough times.
Vicki

Re: Eye pressure - I can relate

2008-06-25 05:05:03

Wow Wendy, can I ever relate to the eye pressure. Just like your
husband I get a weird feeling in my eye from time to time, and it
started since I began taking gleevec. It is always the right eye...I
can't exactly call it pain and I have not been able to give the
sensation a label. "Pressure" is not exactly right either,but it is
close. It also sort of feels as if there is a constant breeze
blowing into it.....very strange indeed. I have not noticed any
relation to the daily eye edema and this phenomenom.
I have never tried to take anything for it as I have read that
tylenol and aspirin are not good choices for gleevec users.
Evidently they are metabolized using the same enzymes as the gleevec
and can therefore interfere with its efficacy.
I do find it almost impossible to ignore it and find myself rubbing
it and holding it closed a fair bit. Eventually it passes only to
return a day or two later. I find it very interesting how the
gleevec side-effects are cyclical. I have never seen the likes of it
in my life and have a hard time wrapping my mind around it. Does
anyone know WHY the side-effects cycle....what is the mechanism
behind that??????
Brenda

Newbies - "give it time" pans out

2008-06-25 03:03:18

Hi everyone.
I have been on gleevec since December 21 2006 and have had a nasty time
of it. I have dubbed this drug "the dragon". I keep hearing people
say "give it time", and I must say at times it was hard to believe
those words. GOOD NEWS...the last three days I have not been sick
after taking gleevec. In fact, I felt better during the last three days
than I have in the last 3 months. Hooray...finally, I believe my
system is getting accustomed to it.
So all you other newbies out there who are having troubles with feeling
ill take heart....and "give it time".
Good health to all,
Brenda

Re: Eye pressure

2008-06-24 14:05:16

Hi Wendy,
I don't know what's causing your husband's eye pressure but it
doesn't sound like it could be from the edema (to me).
Most of us find that the periorbital edema (eye edema) gets worse
after lying down. That's why it's always worse when we wake up in
the morning and subsides after we've been upright for a while. So if
your husband's problem is improving after lying down, it doesn't
sound like edema would be the cause.
I hope the ophthalmologist can help him.
Take care,
Tracey

Re: Rash

2008-06-24 06:13:01

Hi Esther,
Try not to worry about the rash. Many people have had a rash from
Gleevec and they were able to continue to take it anyway. There are
a variety of ways to deal with a rash, depending on its severity but
I just wanted to reassure you that the vast majority of the time, a
rash can be managed and Gleevec can be continued.
I'm not sure you'll see any improvement after missing just a day of
Gleevec, as the drug will still be in your system but I also don't
see how missing a day will hurt you either.
I hope the Benadryl helps.
Let us know how you are.
Tracey

Eye pressure

2008-06-24 05:48:06

Hi all--
My husband has had some eye pressure lately---he says he cant really
classify it as a headache, it is more localized to the eye area. And it
always seems to be on his left eye--the eye that he usually does have edema
in (on?). Does anyone else experience this? He thinks it may be due to the
edema that is due to the Gleevec. He is seeing a opthamologist Friday to
have his eye checked out, we just thought we'd ask the forum to see if
anyone experiences this. Often, when he has it, Tylenol does not help the
pain (though he said he cant really call it "pain", more of an "ache")...the
only thing that seems to help is for him to lay down for about 30 minutes
and close his eyes.
Anyone else experience this?
Wendy

Re: [cml 2] Rash

2008-06-24 03:22:07

Hi Esther,
Sounds like an allergy rash.....and they can pop up after being on Gleevec
for a while. Benedryl will help with the itch.......also oatmeal bath
product, like Aveno. The doc might give you some cortisone to help get rid
of the rash. Some people can then go back on the drug after a break without
a problem, some stay on prednisone for awhile. Many people have take
breaks from Gleevec for different medical reasons, and it is OK.
Nancy C.

Rash

2008-06-23 12:27:06

Hi everyone
I woke up this morning with a couple of dots on my upper chest,in
a couple of hours i had a rash all over my face ,scalp,chest,and
back.It really scared me. I went to my onc. office i saw the nurse
there and another onc {mine wasn't there} She said she thought if it
was from the Gleevec it would have started a while ago I have been on
Gleevec for 3 months. The doc. told me to take benadryll and call them
in the morning. He also told me to skip the Gleevec today,Is that safe?
Other than a little nausea once in a while and a little swelling around
my eyes i don't have any other side affects.I'm worried that I might
have to go off the Gleevec since I've been doing so well on it.Can
someone give me some insight on rashes caused by Gleevec,[I didn,t eat
anything different than i usually do.] I am really worried.
Thanks
Esther

Re: bone fractures

2008-06-23 05:18:20

Hi Margaret,
I don't recall any articles specifically saying that Gleevec causes
more bone fractures but there are a number of them that discuss how
Gleevec interacts with bone metabolism.
Here's one that suggests that Gleevec could actually prevent joint
distruction:
http://www.springerlink.com/content/j26005q85j002815/
Here's one that talks about how Gleevec may interact with bone
metabolism in patients with low phosphorus levels:
http://www.oncolink.upenn.edu/resources/article.cfm?
c=3&s=8&ss=23&id=13140&month=05&year=2006
And here's one that suggests that Gleevec could cause joint effusions:
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1600-
0609.2006.00649.x
If the links don't work, please copy and paste them to your browser.
I find that links often get broken up when posted to the group so
they aren't clickable but if you copy and paste them, they should
work.
Hope this information is helpful,
Tracey
dx Jan 2002

Re: [cml 2] bone fractures

2008-06-22 23:23:13

Hi Margaret,I'm sure you will here from those more in on the subject.When you
are cancer ridden with a high wc your bones will not heal to good,toofew good
cells .So I figure the better you get towards0 the better the healing Paul Tn.

bone fractures

2008-06-22 18:56:40

Doesn't anyone have a medical article about how CML/gleevec affect bone and
frequency of fractures?
I remember reading something about it and told my orthopaedic surgeon who is
interested in the article.
I've had extensive orthopadic surgery on my right hip and he is ruling out
that there is no problems with the prosthesis. I'm scheduled for a bone scan
later in the week.
So if you can refer me to something suitable to share with my physician, I'd
much appreciate it.
Thanks,
Margaret Raymond
Margaret Raymond,
mpraymond@...
margaret-raymond@...

Re: [cml 2] WORK: fatigue, weight gain, DVT, Pulmonary Embolism

2008-06-22 16:35:42

Hi Cammy,
I am not sure it is realistic for you to go back to work??? You don't
mention how your fatigue is presently......and also if you are still on
Procrit for anemia? Fire fighting is a physically demanding job and not
something that you can do well unless you are in good shape. Also, I am
assuming that it is not a job that you can ease back into, like starting
back 1/2 time? I was off work early in my CML for a bit over a year, and
then went back to work (as a physical therapist) 1/2 time and stayed at
that level. I would assume that your dept. would require you to 'pass' a
new physical exam after being off work for so long? Maybe you have already
discussed this with your dept? Is there a desk job that your dept. can give
you to ease back in and reassess?
About losing weight.....for many/most of us it has been difficult to lose
the weight we have gained with CML and our meds. In Jan. I started a daily
treadmill program.....I am getting stronger and have more endurance, but
there has not been the kind of weight loss I was expecting. It would seem
that your level of fitness for this work would be more important than the
weight loss?....but maybe they have height and weight standards that you
have to meet? All of this sounds like things to discuss with someone in
your dept (human resouces or ??) if you have not already.
Nancy C.

Re: Am I a Big Zero?

2008-06-22 08:29:08

Congratulations Bonnie! That's news we all love to hear.
Tracey

WORK: fatigue, weight gain, DVT, Pulmonary Embolism

2008-06-22 05:08:30

Hi,
I need HELPPPPPPP!!!
DX 03-I am on 400 gleevic, 60 protonix, iron, procrit (anemic) and
150 mg of lovenox (DVT & PE 3/06). I should be off the lovenox next
month after a lung scan. The DVT (deep vein thrombosis-blod clots)
are gone, had a scan already for that.
My problem is work. I have been out of work since 1/06 due to first
extreme fatigue then the DVT& PE. I am deperately trying to go back
to work. I am too young (in my book) at 42 to retire. I am trying to
find out if anyone here has a physically demanding job that they have
kept since being diagnosed.
I am a fulltime career firefighter on a pretty busy department. I
gained 50 pounds since diagnosis(had just lost 30 pounds before dx),
and have taken almost 15 off now(and down 2 sizes)...trying for at
least 10 more in the next 5 weeks. It is just NOT coming off. I am on
a schedule: working out, keep my food intake, fat intake, sugar and
simple carbs in check...this is driving me CRAZY!!! any advice???
thanx,
Camille in frigid MA
dx 10/20/03
and flippin FAT!!!
last PCR in 11/06- 0.04
Life is a cookie and friends are the chocolate chips

Am I a Big Zero?

2008-06-21 18:29:09

Hello Everyone,
Introduction time... Bonnie from Takoma Park, MD--a suburb of Wash DC.
Diagnosed March 06. In June 06 I became an ordained Interfaith Minister. I
certainly had a lot to give thanks and praise about! I post my sermons on my
web site _www.ringinlove.com_ (http://www.ringinlove.com) if anyone is
interested. Overall my CML/Gleevec experience has been fairly smooth. And, I
know
there is a lesson and a blessing in all that happens in my life.
I think I might be a member of the zero club (the only time in my life I
look forward to being a zero). In 7/06 I was 123% positive for BCR/ABL. In
10/06 I was 0.163%. On 1/10/07 I was negative for BCR/ABL.
So, am I a zero?
Blessings and smooth sailing to all,
Rev. Bonnie

CML and new love - Dear Lynn

2008-06-21 17:38:32

Dear Lynn
My heart truly goes out to you for the experience you had with
the "frying pan man". I do love that handle by the way. Sadly it is
not an isolated story. When I was being treated for breast cancer and
the man I was living with bailed on me right after my third chemo
therapy I was devasted. I sought councelling at the cancer clinic and
learned that approximately 70% of relationships break up during cancer
treatment. Surprisingly, often times it is the patient who ends it.
This is a trying time for all, and we often make decisions based on raw
emotions instead of logical thought. Truly sad. There is always a
double edged sword though and I was better off without the spineless
fool and now find myself deeply in love with a fabulous strong man.
I am so happy to hear that you have found love post CML. I would love
to hear more love stories as it brings such hope to those of us who are
alone at this time.
best wishes
Brenda

Re: [cml 2] Clarification on 3-log and PCRU

2008-06-21 12:09:06

Hi Emile,
When you are PCRU, it means that they did not detect ANY ph+ cells in the
test. One important thing to know is what is the sensitivity of the test,
it could be only 10,000.......or more typically 100,000 cells and then also
1 million cells.
When they say you have a certain log reduction, it means you must still
have some detectable cells. And the truth is.....even when you are PCRU,
you still have some leukemia cells (they just were not picked up on the
test that was run). This is why you will relapse if you stop taking the
drug you are on....because there are still leukemia cells.
Nancy C.

Clarification on 3-log and PCRU

2008-06-20 23:35:24

What is the difference betwen PCRU and 3-log reduction .
Is it means then when you are at -3.7 log , you are not completely undetectable
.
Thanks .
Emile
# 527 Zavie's List

Re: Seeking for Job

2008-06-20 21:23:59

Funny! Had to check it out of course! Spellcheck is a wonderful(and
apparently underused thing)

Seeking for Job

2008-06-20 16:09:08

Hello!
I have found website where Doctor jobs are available. If any one
is interested then apply online.
http://www.thecertifications.com/doctorjobs
Regards,
Jeffrey

CML and new love - Dear Iris

2008-06-20 14:17:49

Dear Brenda,
Thank you so much for sharing your story of love! What an inspiration! I
will send it on to my sister. It is sure to lift her spirits!
What a blessing to meet and fall in love with an exceptional person-healthy
or ill-and I wish you many more joyful Christmases and Valentines together!
All the best,
Iris

--
Iris Colyn
Mobile: 778-317-1515

Re: [cml 2] CML and new love

2008-06-19 23:04:35

Love is a drug and like a drug it cares not who it affects. I've loved before
the diagnosis and lost that one to other things not related to my illness. This
happened again after the diagnosis which the relationship lasted 3 years and
just before I was about to pop the question we realized that we had some
differences, again not related to my illness. Now I've been so fortunate to have
found another woman who is falling in Love as am I. You see, Love is a Drug and
Drugs do not discriminate...Drugs love you if you love it...So to all those
folks that say forget about it, I submit they've never been in love for to have
been, you want it again, and again, and again, and again...Like a Drug.....
Ikidunot
Iris Colyn <iris.colyn@...
Valentine's Day has just passed and I have a related question that has
been
troubling my twin sister (dx Dec 2006, living in Johannesburg South
Africa): Is it possible that a gorgeously beautiful, intelligent 46 year old
woman with CML could have a chance to love again? A 'friend' recently told
her that she should face reality and forget about any man wanting to get
involved with her now that she is ill.
Reading your postings, it is clear that many of the people in this group are
blessed with incredible, strong, loving, supportive spouses. I am just
wondering whether anyone had the experience of falling in love after being
diagnosed....
Wishing everyone much love,
Iris

Remember to smile at people, someone may see you and return the favor!
Keyon

Re: CML and new love - Dear Iris

2008-06-19 20:33:53

Dear Iris;
Your sisters friend who said she should give up is merely showing how
shallow she herself is. It is very sad for her that she does not
have the capacity to fall in love with someone who is ill, and is
assuming that all others are like her.
I was dx'd in December 2006 with CML. I had been not well for some
time and am a breast cancer survivor so I was thinking it had a lot
to do with my previous chemo therapy. I started to feel especially
ill in September and that is when all the testing started looking for
leukemia. In October, I met the most wonderful man and we have
fallen in love right smack dab in the middle of this chaos. I gave
him a "get out of jail free card" very early in the relationship and
he being a real man and a worthy man would have nothing to do with
it. He stands beside me everyday and we celebrated our first
Christmas and our first Valentines together with gusto. There is
nothing like a serious illness to show a person just how valuable
life and love is.
So, you tell your sister that I said "You go girl".
Wishing you much love and happiness
Brenda

nausua

2008-06-19 14:53:23

Has anyone found a herbal tea remedy to deal with nausua? I use Promethazine 25
mg and Metoclopram 10 mg but they only work for a few hours and make me sleepy.
I have bouts (4-6 days) of nausua when I'm too nausuated to eat anthing other
than yougart and then take gleevec which makes me more nausuated...it becomes a
vicious circle.
Thanks for any suggestions.
Margaret
Margaret Raymond,
mpraymond@...
margaret-raymond@...

Re: [cml 2] nausua

2008-06-19 13:59:40

Margaret-
I have been very successful with Zofran for nausea. I started on 4mg and when
they moved my Gleevec up to 800mg, I seemed to need the 8mg of Zofran. Works
quickly and I have noted NO other side effects. I have severe nausea, vominting
and diarrhrea so it has been a god send to me.
Jennifer
Jennifer S. Smith RN

Re: CML and new love

2008-06-19 05:57:38

Hello
I didnt fall in love after being DX, but I did get married 2
years after. She needs to keep the faith and not worry that she is
ill.
Andrea

Re: Gleevec and Fathering a Child

2008-06-18 19:28:12

Hello
I have not done in research on fathering a child while on Gleevec.
I know that I have been warned not to get pregnant while on Gleevec
due to the fact that I cant take the medication whie I am pregant. You
might want to ask Erin she is 28 years has lots of information. She is
pregant and got off Gleevec until the baby is born. Check out her
blog. I hope this helps.
http://www.glamour.com/lifestyle/blogs/editor
Andrea
Age 25
Dx 2003
Gleevec 400

bone infarct

2008-06-18 12:30:48

I cross posted this message on the Asian CML support group
Hi all
I needed to have a followup m.r.i.on my hip and leg because the first m.r.i.
showed a shadow on the upper leg. The report is as follows
Abnormality is seen in the upper aspect of the left femoral diaphysis. There is
an ovoid area of intermediate
T1 and bright T2 signal is seen within the upper femoral diaphysis. This
measures 3cm in length and exhibits patchy enhancement post administration of
contrast. Distal to this there is patchy abnormal signal and enhancement
involving the upper third of the femoral diaphysis. There is no cortical breech
or adjacent soft tissue mass. The remainder of the left femoral diaphysis
appears normal. No other lesions are identified.
It is difficult to ascertain whether the lesion has changed since the prior
examination as it was only partially imaged previously.
IMPRESSION
Non-specific area of marrow signal abnormality and enhancement in the upper left
femoral diaphysis.
This may represent an evolving bone infarct but this is not definitely the case.
Follow up imaging could be performed in 2 - 3 months time to ensure that this is
not a progressive abnormality.
Just wondered if anyone else has had problems with bones. My oncologist thinks
it probably stems from bone marrow transplant and is referring me to a leg
specialist. I'm interested in any natural therapies that might improve bone
strength.
I had a transplant in 1993, and after relapsing 2 years ago am now taking 600mg
glivec. My left hip has been giving me pain for some time, which is why I had
the m.r.i.
Judy T

CML and new love

2008-06-18 10:47:51

Valentine's Day has just passed and I have a related question that has been
troubling my twin sister (dx Dec 2006, living in Johannesburg South
Africa): Is it possible that a gorgeously beautiful, intelligent 46 year old
woman with CML could have a chance to love again? A 'friend' recently told
her that she should face reality and forget about any man wanting to get
involved with her now that she is ill.
Reading your postings, it is clear that many of the people in this group are
blessed with incredible, strong, loving, supportive spouses. I am just
wondering whether anyone had the experience of falling in love after being
diagnosed....
Wishing everyone much love,
Iris

Gleevec and Fathering a Child

2008-06-17 22:04:33

Has anyone collected research on the issue having children while taking Gleevec?
The best I could find is that they warn against fathering a child or becoming
pregnant because we do not know yet the effects of Gleevec on this issue.

Re: Clarification on 3-log reduction terminology

2008-06-17 17:13:34

Here's another way to look at it-how it was explained to me by my
oncologist:
Say you started out with 1,000 000(million) cells. For every 1 log
reduction you take off 1 zero, so for a 3 log reduction you would go
from that 1 million cells down to 1000. I hope that makes a bit more
sense-sometimes the terminology just makes things more confusing,
than straight laymans terms. And yes everyone starts out with a
different number unique to them.

Clarification on 3-log reduction terminology

2008-06-17 15:59:41

Hi Tracy--
My husband, Joel, goes in for his first PCR test this Friday, so we are
trying to get everything straight in our heads, in terms of terminology,
what to expect, etc! I think we pretty much understand it all (thanks to you
and many others on this forum!).....but when we read this part of one of
your recent emails, we had a question. You said:
"The ultimate goal in CML is to achieve a "3 log reduction" which is a 1000
fold decrease in cancer cells."
When you say a "1000 fold decrease in cancer cells", does that mean it will
be different for everyone? Meaning, his hope is to achieve a 1000-fold
decrease from he was first diagnosed at? For example, wont Joel have started
his CML journey with a different "amount" of cancer cells than others, so
that his 3-log reduction will be specific and unique to him?
I feel like I am not making sense! Sorry--worked an 12-hour day today!!
But--do you understand my question?
Thanks as always!
Wendy

Happy Valentine's Day

2008-06-17 15:15:25

Happy Valentine's Day everyone. I truly hope the day
is happy for you, but we know that isn't always the
case for many reasons.
This little verse was just sent to me and I think it's
very appropriate to share with everyone:
'Be kinder than necessary ,
Hugs to all,
Hugs,
Judy P. in Calgary

RE: [cml 2] for Esther

2008-06-17 01:53:24

Hi Nancy--
I have searched back through emails, and I am so sorry for asking this again
(I know you have said it already): how much Vitamin D do you take? And, it
sounds like this is not something my husband (CML patient) should just start
taking on his own, rather--he should get his levels tested, talk to his doc,
and then start taking it? Meaning--it should be monitored?
Thanks!
Wendy

Re: international group

2008-06-16 22:51:24

I think its great to be involved in such an international group. I'm from
Melbourne Australia. I was diagnosed in 1992, had a bone marrow transplant in
1993, relapsed in 2003 and have been on glivec ever since. At the moment my pcr
is 0.07 and I have recently increased dose from 400 to 600 mg. The reason for
this is to see if I can become pcru and maybe trial off glivec (the aussie way
of spelling it). I have 100% donor marrow again, but still have some residue
cml. We are experiencing the hottest summer on record at the moment and are on
stage 3 water restrictions, otherwise Melbourne is a beautiful place to live. I
am 54 and have recently retired from teaching. I am married with 4 children, 2
grand children and expecting 2 more this year. Fortunately I have very few
glivec side effects and am able to play golf twice a week (not very well). I
think groups like this are so helpful, there was nothing like this available in
1992, and I felt very alone. The
community here has been very helpful for me, I have learned so much about my
disease and feel I have the understanding of many other fellow cmlers. I am 699
in Zavie's zero club and love catching up with people in the chat room when I
can.
Judy T
Melbourne Australia

Re: [cml 2] The Magic Cancer Bullet- Efrem

2008-06-16 19:17:36

Hi Efrem,
Yes I read The Magic Cancer Bullet years ago when it first came out
and found it to be very good. It's writen in such a way that anyone
can read it, you don't need to know anything fancy about CML to enjoy
the book. Infact, my daughter even read it when she was just 12
years old and she found it to be a good read as well.
Take care,
Tracey

for Esther

2008-06-16 09:09:02

Hi Esther,
That is a smart GP, to also do the testing. I just saw Dr. Oz on Oprah
today, and he referred to Vit D as the anti-cancer vitamin. He also said
that most people will not get/manufacture enough Vit D during the winter
months from the sun and need to supplement it.
We all need to remember that just because we have cml, that does not mean
that we can't have other medical issues.
Nancy C.

Re: [cml 2] Postings from around the world, my basic info-Esther

2008-06-16 00:05:53

Hi Esther,
I believe that the test numbers you posted, refer to a PCR test. You
will most likely always register a number on a PCR test because they
are very sensitive (usually they can look at 100,000 cells). This
does not mean that you aren't doing well and it also doesn't mean
that you don't belong to the zero club. I'm sure Zavie will be
contacting you to give you your number because with a PCR value like
you've posted, you surely qualify for the zero club.
Although labs vary across the country (and across the world), most
labs would consider a PCR value of 0.001% to be very good. You need
to find out what this particular lab considers to be their base line
value and from that, you will be able to calculate your log
reduction. I would hazard a guess that 0.001% is a 3 log reduction
but only your lab will be able to confirm that.
The majority of us are still positive on a PCR test because they are
just that sensitive. The one's who are negative on the PCR test, are
not cured by any means, it just means that the test they took, didn't
find any leukemic cells but that doesn't mean that there aren't any
leukemic cells there.
It's like if you took a swimming pool and filled it with a trillion
white ping pong balls (which represent your healthy blood cells),
then you added 1000 blue ping pong balls (which represent the
leukemic cells). Then if you mixed them in real good and took a
fishing net and scooped out 100,000 ping pong balls, you may, or may
not catch some of those blue ones. That's sort of how a PCR works.
In one scoop, you might find some blue ping pong balls and in another
scoop you might not. The more ping pong balls you scoop out, the
better your chance is of getting a blue one but since you can't scoop
out every single ping pong ball, you never really know how many blue
ones you have.
In the end, your goal should be to reach a 3 log reduction as
reaching a complete zero is just not realistic. Some of the experts
even caution those who have gotten zero results on a PCR because it
brings into question just how sensitive the test was and how good the
sample of blood was (in terms of its quality). If the blood sits
around for longer than a day or two, the quality downgrades rapidly
and the results aren't going to be as accurate.
All in all, it looks like you're doing very well.
Take care,
Tracey

Re: [cml 2] "an extraordinary book will be indispensable to anyone dealing with cancer"

2008-06-15 21:08:38

I look forward to reading this book.
I would also recommend "The Magic Cancer Bullet" by Dr. Vassella of Novartis.
It is all about the history of Gleevec. It's a great story.
Has anyone here read it yet ? What are your thoughts?
awishart <awishart@...
Dear All,
I've written a book about cancer which has had wonderful reviews,("genius",
"riveting",
"amazing" and "extraordinary") and would be of particular interest to the CML
community.
Its being published this week in the US.
Thanks to Tracy for allowing me to share some information about it, I'm
grateful.
The book aims to be a very general introduction to the science of cancer, how
cancers
work, the new frontiers of genes and the history of cancer treatments over two
hundred
years. The book is structured around ten stories of scientific discovery,
intertwined with a
memoir about my father.
The reason that the CML community would be interested is that the penultimate
chapter of the book is about Brian Druker, and the first clinical trial of
Gleevec. I
interviewed Brian, various Gleevec patients and various people from Novartis.
Indeed, the
story of how the CML internet list campaigned for the drug is laid out.
The story of the first identified case of Leukemia, which I'm told was probably
CML, is also
in one of the earlier chapters. Back in 1845.
So far the book has had some lovely reviews.
Last week, Andrew Leonard, wrote in Salon: "Wishart's genius is in combining the
wrenching story of his father's cancer with the broader medical history of
humanity's
struggle to understand and treat the hydra-headed disease. And this latter
story, he
persuasively argues, is a happier tale, a narrative defined by steady progress;
an
enthralling tribute to the remarkable doctors and scientists who have unraveled
the
mysteries of how our bodies work and devised ways to fight their
deterioration..... To
provide hope to others in the midst of his own sorrow is a marvelous
achievement: "One in
Three" is a fine piece of work."
http://www.salon.com/tech/htww/2007/02/05/adam_wishart/index.html
And Andrew Solomon, the author of the Noonday Demon, said, 'Adam Wishart's
extraordinary book will be indispensable to anyone dealing with cancer, because
it is so
clear-eyed, so measured, so informative, and so quietly moving. He elegantly
integrates
the history of cancer research with the story of his father's illness. In doing
so, he makes
abstract science accessible and dignifies a human story with the insights of
medicine.
After reading this book, you have not only more knowledge, but also more insight
and
compassion.'
There are a whole other set of reviews from the UK are at my blog.
http://www.adamwishart.info/book_blog/index.html
You could read the introduction here
http://www.adamwishart.info/2006/06/the_books_intro.html
The amazon link to it is here.
http://www.amazon.com/gp/product/0802118402/
ref=pd_ecc_rvi_2/002-7314795-7304823?ie=UTF8
You can read the Gleevec chapter by typing in "targeting genes" into the search
inside bit.
It starts on page 190.
The first diagnosis of leukemia can be found by searching inside for "marie
straide"
Thanks very much for allowing me to post this. I am grateful. And thanks to all
the
patients who told me their stories. I'm grateful for that also.
Best wishes
Adam Wishart

"an extraordinary book will be indispensable to anyone dealing with cancer"

2008-06-15 18:58:25

Dear All,
I've written a book about cancer which has had wonderful reviews,("genius",
"riveting",
"amazing" and "extraordinary") and would be of particular interest to the CML
community.
Its being published this week in the US.
Thanks to Tracy for allowing me to share some information about it, I'm
grateful.
The book aims to be a very general introduction to the science of cancer, how
cancers
work, the new frontiers of genes and the history of cancer treatments over two
hundred
years. The book is structured around ten stories of scientific discovery,
intertwined with a
memoir about my father.
The reason that the CML community would be interested is that the penultimate
chapter of the book is about Brian Druker, and the first clinical trial of
Gleevec. I
interviewed Brian, various Gleevec patients and various people from Novartis.
Indeed, the
story of how the CML internet list campaigned for the drug is laid out.
The story of the first identified case of Leukemia, which I'm told was probably
CML, is also
in one of the earlier chapters. Back in 1845.
So far the book has had some lovely reviews.
Last week, Andrew Leonard, wrote in Salon: "Wishart's genius is in combining the
wrenching story of his father's cancer with the broader medical history of
humanity's
struggle to understand and treat the hydra-headed disease. And this latter
story, he
persuasively argues, is a happier tale, a narrative defined by steady progress;
an
enthralling tribute to the remarkable doctors and scientists who have unraveled
the
mysteries of how our bodies work and devised ways to fight their
deterioration..... To
provide hope to others in the midst of his own sorrow is a marvelous
achievement: "One in
Three" is a fine piece of work."
http://www.salon.com/tech/htww/2007/02/05/adam_wishart/index.html
And Andrew Solomon, the author of the Noonday Demon, said, 'Adam Wishart's
extraordinary book will be indispensable to anyone dealing with cancer, because
it is so
clear-eyed, so measured, so informative, and so quietly moving. He elegantly
integrates
the history of cancer research with the story of his father's illness. In doing
so, he makes
abstract science accessible and dignifies a human story with the insights of
medicine.
After reading this book, you have not only more knowledge, but also more insight
and
compassion.'
There are a whole other set of reviews from the UK are at my blog.
http://www.adamwishart.info/book_blog/index.html
You could read the introduction here
http://www.adamwishart.info/2006/06/the_books_intro.html
The amazon link to it is here.
http://www.amazon.com/gp/product/0802118402/
ref=pd_ecc_rvi_2/002-7314795-7304823?ie=UTF8
You can read the Gleevec chapter by typing in "targeting genes" into the search
inside bit.
It starts on page 190.
The first diagnosis of leukemia can be found by searching inside for "marie
straide"
Thanks very much for allowing me to post this. I am grateful. And thanks to all
the
patients who told me their stories. I'm grateful for that also.
Best wishes
Adam Wishart

Sprycel Side Effect--cognitive problems

2008-06-15 09:05:30

Hi Everyone,
For the last10 days or so, I have had some symptoms that were new and scary for
someone who is usually verbally agile and a writer to boot.
I would lose my train of thought during conversations, couldn't think of even
the simplest words and was very forgetful. I really thought it might be
Alzheimer's. But, remembering that Gleevec patients often complained about
foggy thinking and forgetfulness, I posted a question about it in the Sprycel
Discussion group on newcmldrug.com. Sure enough, four other people had exactly
the same symptoms. They come and go. Anyone here have this apparent side
effect? I have a BMA scheduled for tomorrow (Happy Valentine's Day!) and will
talk to my doctor. Would like to hear from anyone else with these wymptoms who
is on Sprycel. I'm on 100 mg per day.
Thanks!
Susan L

Re: [cml 2] Re:Postings from around the world

2008-06-15 06:24:10

Hi David,
If you had very high platelets (like a million or more) at the time of
diagnosis, I wonder if you had a stroke. As a physical therapist, I worked
quite a bit with MS in the past and it is NOT usual to be a one-sided
problem. It sounds like a neurologist needs to do a work up on you.
Your attorney should get you easily qualified for SS disability. I hope get
some answers and see some improvement soon. Let us know how it goes for you.
My best to you,
Nancy C. (Eugene, Oregon)

uploading photos

2008-06-15 00:29:19

Hi Paul and everyone else,
Yes, anyone can upload a photo of themselves in the photo section of
the main page (on the left side of the page). I would encourage
everyone who feels comfortable with having their picture up, to do
so. It's always nice to put a face to a name.
Tracey

Re:Postings from around the world

2008-06-14 19:40:41

Hi ya'll i live in Wichita Falls Tx,i'm 41 moved furniture for 17 years and now
pretty much sleep most of the time lol. I was diagnosed on fathers day 06 [what
a great present] my Dr. did have me on Gleevec to start with, but thought i was
having unusal side effects from it.I lost 70 pounds in 3 weeks and my left side
[to incude vocal cords] became partialy paralized As it turns out i may also
have MS....[great] I have been back on Gleevec for about 1 and 1/2 months now
with just the normal side effects haha.
I have been turned down twice now by SSI, i do have an attorey.It is very
frustrating not to be able to contribute to our finances as my left side still
doesnt work well. I used to move sofas by myself now i'm lucky if i can pick up
my 3 year old daughter. does anyone have suggestions.

Re: Postings from around the world, my basic info

2008-06-14 14:24:37

Nancy,
Where do you go to get tested for vitamin deficiencies? My Chiro is
also a naturopath and a big proponent of toxicity and hormone level
testing. He feels that hormone imbalance is the biggest cause for
health issues. He promotes compounding pharmacies where they make
custom creams rich in the components that offset your personal
hormonal imbalances. You just rub the cream on your skin and the
nutrients are absorbed. I was really fascinated by the conversation
and have always been meaning to research more.
James

my story-Skip

2008-06-14 02:54:28

I have added to the web site my counts as of Monday
htt://easyskip.tripod.com
thanks to those who signed the guest book with such
encouragement I keep you all in my prayers..
Kay and Lynne I am no hero I had no part in my long
battle with CML. The hero is or should be everyones
hero I am just along for the ride. The powers that
be are looking out for me.
SkipD

Re: [cml 2] Postings from around the world, my basic info -- Maui Nanc

2008-06-14 00:12:24

Dear Nancy,
I just assumed (with envy) that you lived in Maui! What a surprise
to learn you're in Oregon. How did you earn the moniker "Maui
Nanc?"
Warm regards.
David

Re: my story-Skip

2008-06-13 19:18:21

Hey "My HERO". . .Aha Skip, Lynne has added you as her 'Hero' also; you've
always been mine. . ."K"
"K"
"I AIN'T FINISHED YET"!!!

Re: [cml 2] Postings from around the world

2008-06-13 12:19:13

Wayne good idea,I was dx dec 06 did 800 for a about 10 days with hydrea stuff
.My fish test in Dec 07was 0,howerer the doc said it was a mistake lastest test
aGeno trace report was 2.63% I'm on 400 G ever since weigh 174 age 65 reside &
retired in Crossville TN.Lived and worked in Brandywine Md.I guess that is where
I got whatever that gave me the big L

Postings from around the world - dyana

2008-06-13 07:04:49

Hi Margaret,
A couple things about your post concern me.........there was no reason to
drop your dose because you white count dropped to 8,000..............or
maybe you were saying because you got a normal white count and the side
effects were bad, that is why you dropped the dose (with MD approval of
course).
Early in treatment it is even considered desirable to see the white count
drop down to 3 or 4 (1000 that is). It looks like the 400mg dose was not
controlling your disease?
I know this is just a typo.....but you will have a bmb (not a BMT) in
April. Easy to mix all the letter of this disease up. The blurry vision is
usually from excess tear formation in the eyes.....my eye specialist told
me to use Visine AC (a decongestant) every day. Also, almost all of the
Medicare Part D insurance companies will cover Gleevec. Did you look at
AARP or Humana Part D. Go to the Medicare site and plug in the drug and it
will come up with all the drug companies that cover Gleevec. It will not be
cheap with the donut hole.........might cost about $6K a year, but you
could also qualify for extra assistance. I would look on the Medicare site
and then call and speak with a Medicare person.
Nancy C.

Re: [cml 2] Postings from around the world, my basic info

2008-06-12 23:46:28

First, my brief introduction....I am an old timer (dx in 1998) and a slow
responder to the cml drugs (was on Gleevec for over 5 years, now on Sprycel
just over a year). I have been Dr. Druker's patient since Feb. 2000 (an
early Gleevec trial).....so I have had the privilege and opportunity to
'pick his brain' almost every 3 months for years! When I post, usually in
response to someone, that is the information that I pass along.....plus the
fact that I worked in the medical field as a physical therapist with lots
of doctor contact for about 30 years..........and that fact that I have the
opportunity in my community (Eugene, Oregon) to work with a naturopath
trained in oncology. I feel like I have the 'best of both
worlds".....western and alternative/complementary medicine and try to share
what I learn.
Other than that I am single, just turned 60 and will be going on my first
cruise next month! It is a Disney Cruise with family.
Now about Vit D......it was named a vitamin, but it actually acts like a
hormone....and it has to do with cell differentiation. My oncology
naturopath has always felt it was important, and right from the start we
tested my vitamin D level, which was 'in the basement'.
Normal range on testing used to be about 20-57 ng/mL. Natuopaths have
always felt this was too low.....mine wanted it to be 80-100 for a cancer
patient. Now the labs have increased this normal range to 32-80 ng/mL.
I have been taking a daily supplement of 2000 iu of Vit D3 (it needs to be
D3 which is not what they have fortified milk and other products
with).........but we do periodic testing for me. My lab results for the
Vitamin D, 25-Hydroxy test started at 9.4 and have only slowly increased to
62.5 (over 2 years).
To take the 2,000 iu dose you should do the blood test to see where you are
starting....it will depend on where you live (how much sun), skin color,
etc. Hopefully Richard R. will respond with a suggested dose.
One last comment is that this is frequently now referred to as the
anti-cancer vitamin.....and that OHSU is doing some research trials with
megadoses of Vit D in certain cancers (like prostate). Goggle Vit D and you
will come up with some great information.
And Vicki, I am so happy that you will be seeing Dr. Druker
soon.......anyone who is not having a 'typical' response to Gleevec needs
to see a CML specialist for the best care.
Nancy C.
also go by Maui Nanc (my turtle, slow responder name)

Postings from around the world - dyana

2008-06-12 17:35:59

I'm from the Cherokee Nation, located in what is now 16 counties of northeastern
Oklahoma. I work as the Development Director fpr my tribe. See www.cherokee.org
for more information about CHeroees.
I was diagnosed 10-1-06 and was on 600 mg Gleevec until mid Dec when my wbc
was down to 8,000. So went on 400 mg but last week found that my wbc is back up
to 18,000 so I'm on 600 mg again. Will have a BMT in April to see what's really
going on. The side effects have been numerous and sometimes difficult, blurry
vision is the problem which may drive me to retirement as soon as I can find an
insurance for Part D Medicare that'll pay for gleevec? Any suggestions?
I enjoy the information from the group. It's been very helpful to me however
you can see from my recent post I am tiring of the "bickering" as I have to work
hard to keep positive about facing this diseaase.
Margaret
Margaret Raymond,
mpraymond@...
margaret-raymond@...

Postings from around the world, my basic info

2008-06-12 12:11:28

Hi all, I too love the fact that the group is so international. I am
a bit boring--I am from a suburb in the Seattle area--Lynnwood, WA,
and work in downtown Seattle at Swedish Medical Center, as a medical
transcriptionist (for 35 years now!). I have four children, two
daughters, 28 and 22, and two boys, ages 11 and 8. I was diagnosed
with CML on 10/04/06. I am on Gleevec 400 mg, and have not had a good
response to it--WBCs still too high and lots of side effects. I am
going to see Dr Brian Druker on 03/01/07, on the advice of a member
of this group! I am so thankful to have found such a great source of
information and support and camaraderie. It helps to know we are not
alone when dealing with scary diseases like CML.
A side note--I absolutely loved the article posted about vitamin D--I
would encourage all to read it if you haven't already. We should all
be taking supplemental D, I think! I have read other articles about
it being hailed as one of the more important vitamins for good
health, and for those of us who live in the rainy parts of the world
where it is dark all winter and lots of bugs floating around for us
to catch, it makes sense to take extra D to keep us healthy. I wonder
what the ideal dosage of this would be?
Best to all,
Vicki

Postings from around the world - dyana

2008-06-12 05:03:34

I am from Warren, OH...1 hour southeast of Cleveland.
Pam
dyana lindsay <dyana123_2000@...
I am from Pocatello Idaho. I am just a lurker, but my 28 year old
daughter is a cancer survivor
(liposarcoma in thigh) for 3 years and I have 2 close friends with Leukemia so I
joined this group for new info. thanks To all, Dyana
dyana

Postings from around the world - dyana

2008-06-12 02:24:51

I am from Pocatello Idaho. I am just a lurker, but my 28 year old daughter is a
cancer survivor
(liposarcoma in thigh) for 3 years and I have 2 close friends with Leukemia so
I joined this group for new info. thanks To all, Dyana
dyana

Re: [Spam?] Nancy C

2008-06-11 14:04:44

In a message dated 2/11/2007 2:01:37 P.M. Eastern Standard Time,
ncogan@... writes:
I have known you for years and it seems like you have always had a doc
pushing you for a BMT. I think that is a bad idea (and a last resort for
you) because you are so drug sensitive...you) because you are so drug s
involves, months and years of necessary drugs!!! I would love to see you
find a doc (within your health care system) that has more experience
dealing with the cml drugs.......dealing with the cml drugs.......<WBR
ma
doesn't do well with this medication. Anyway, best of luck to you.
Maui Nanc
PS I am going to be in Florida in March and we see and meet Dawn and Capt.
Bob and Norma Bidleman for the first time!!
Dear Nancy, WOW, no one here told me about DF having AMN trials, wonder why.
I'll call them.
Yes, I believe the docs I have here are all part of the "old school" in
their thinking.
What you wrote, about all the problems involved with a BMT, I wrote out to
my doctors with pen and paper, pleading my case. I literally screamed in his
office, "What do you think all those drugs would do to my body,(?) given my
problems, my age, the fact I have a 8/10 donor match. I read the BMT Talk
Digest a lot, so don't tell me it is a CURE. And if you think I am in and out
of
the hospital for every little thing NOW, wait til AFTER my bmt. I'll be living
there." etc, etc.
Oh, lucky YOU, going to FL to meet Dawn, Bobby and Norma. I love those guys,
give 'em all hugs for me. Love, Lynne

Postings from around the world - Alicia

2008-06-11 11:32:33

Just posting in regard to the 'where you're from' question. I'm from Braintree,
MA in the US.
:}
Alicia

Re: Postings from around the world

2008-06-11 07:12:46

Hi Wayne,
Thanks for your kind words :)
When people join our group, they don't have to provide any personal
information so there's no way we could know where everyone is from
unless they make a point to post about it. I agree with you though,
that's it's fascinating to know that we're connecting with people
from around the world.
There are many members who don't post or don't post often, so I'd
like to take this opportunity to encourage anyone who feels so
inclined, to post a brief message about themselves, perhaps just an
introduction and if they don't mind, it would be nice to know what
country they're from.
If I had to guess though, I would think that the vast majority of our
members are from the US. It seems to me that there are only a
handful of Canadians but we do appear to be more "chatty" so it
probably looks like there are more of us than there really is :)
Looking forward to hearing from others,
Tracey (from Canada)

Re: Vitamin D and Common Cold

2008-06-11 02:35:42

Hi Richard,
Thanks a bunch for sending this article. I found it very
interesting. I haven't checked the links that it references yet but
I was wondering if you wouldn't mind telling us how much Vit D you
take daily? The article didn't seem to mention a specific amount
that is recommended?
Tracey

Postings from around the world

2008-06-10 20:05:31

Greetings All!
I continue to be profoundly affected by the postings to this board from group
members who live aound the world (I am a U.S. citizen).
Most notably, I regularly "save" postings from Tracey (in Canada), whose
insights are quite valuable.
Often times, such as just recently, we'll see a post from South Africa or
other countries.
Just curious - can the group leaders provide a quick, general summary of where
members reside (e.g., 20 percent of group members are from Canada; 30 percent
from the U.S., etc.)
Thanks in advance.
Wayne
(diagnosed with CML in November 2006; on 400 mg. of Gleevec since December)

Vitamin D and Common Cold

2008-06-10 13:06:49

Hi Folks - a while back I mentioned this article, about Vitamin D possibly
protecting against the common cold (and being generally good at helping us
ward off infection). Someone wrote back that I posted the wrong URL for the
article, so I'm attaching the whole thing here. Hope you find it
interesting, as I did.
Best,
Richard R
==========
The Antibiotic Vitamin
Deficiency in vitamin D may predispose people to infection
Janet Raloff
In April 2005, a virulent strain of influenza hit a maximum-security
forensic psychiatric hospital for men that's midway between San Francisco
and Los Angeles. John J. Cannell, a psychiatrist there, observed with
increasing curiosity as one infected ward after another was quarantined to
limit the outbreak. Although 10 percent of the facility's 1,200 patients
ultimately developed the flu's fever and debilitating muscle aches, none did
in the ward that he supervised.
WINTER WOES. Cold-weather wear and the sun's angle in the winter sky limit
how much ultraviolet light reaches the skin. This can add up to a deficiency
in production of vitamin D, which might explain why respiratory infections
are common and severe in winter.
"First, the ward below mine was quarantined, then the wards on my right,
left, and across the hall," Cannell recalls. However, although the 32 men on
his ward at Atascadero (Calif.) State Hospital had mingled with patients
from infected wards before their quarantine, none developed the illness.
Cannell's ward was the only heavily exposed ward left unaffected. Was it by
mere chance, Cannell wondered, that his patients dodged the sickness?
A few months later, Cannell ran across a possible answer in the scientific
literature. In the July 2005 FASEB Journal, Adrian F. Gombart of the
University of California, Los Angeles (UCLA) and his colleagues reported
that vitamin D boosts production in white blood cells of one of the
antimicrobial compounds that defends the body against germs.
Immediately, Cannell says, the proverbial lightbulb went on in his head:
Maybe the high doses of vitamin D that he had been prescribing to virtually
all the men on his ward had boosted their natural arsenal of the
antimicrobial, called cathelicidin, and protected them from flu. Cannell had
been administering the vitamin D because his patients, like many other
people in the industrial world, had shown a deficiency.
The FASEB Journal article also triggered Cannell's recollection that
children with rickets, a hallmark of vitamin D deficiency, tend to
experience more infections than do kids without the bone disease. He shared
his flu data with some well-known vitamin D researchers, and they urged him
to investigate further.
On the basis of more than 100 articles that he collected, Cannell and seven
other researchers now propose that vitamin D deficiency may underlie a
vulnerability to infections by the microbes that cathelicidin targets. These
include bacteria, viruses, and fungi, the group notes in a report available
online <http://dx.doi.org/10.1017/S0950268806007175
Epidemiology and Infection.
This is only a hypothesis, "but a very credible one" that deserves testing,
says immunologist Michael Zasloff of Georgetown University in Washington,
D.C.
Behind the hypothesis are recent studies that link vitamin D intake to
revved-up cathelicidin production. These investigations point to an
infection-fighting role for vitamin D, which is produced in skin exposed to
sunlight but is present in few foods.
A study published earlier this year that investigated the relationship
between vitamin D and susceptibility to tuberculosis also bolsters the idea
proposed by Cannell's team. Scientists have already planned a handful of
clinical trials to evaluate the antimicrobial benefits of vitamin D
supplementation.
Zasloff argues that if studies support the hypothesis, "we can imagine one
day treating infections not by giving somebody a drug, but by giving them
safe and simple substanceslike a vitamin."
Innate protection
Legions of germs come into contact with our bodies every day. Each microbe
seeks a host in which it can multiply. Most would-be invaders, however,
don't succeed; if not barred entry outright, they're destroyed by cellular
recruits called up to participate in local immune militias.
Scientists hadn't been sure what serves as the call to arms for these immune
cells and what triggers the production of their antibiotic arsenal, which
includes several chemical weapons.
Over the past 5 years, a spate of studies began to shed light on the rollout
of one of those munitionscathelicidin. Dermatologist and immunologist
Richard L. Gallo of the University of California, San Diego, a coauthor of
many of these studies, explains that cathelicidin "targets the bad guys." It
kills invaders by punching holes in the external membrane of a microbe,
permitting its innards to leak out.
Molecular geneticist John H. White of McGill University in Montreal and his
colleagues were the first to observe that cathelicidin production is ramped
up by vitamin Dor, more specifically, by the hormone 1,25-D, the vitamin's
active form (SN: 10/9/04, p. 232:
http://www.sciencenews.org/articles/20041009/bob8.asp
<http://www.sciencenews.org/articles/20041009/bob8.asp
of events, vitamin D transforms into a compound, called a prehormone, that
circulates in blood and then is converted locally, as needed, into 1,25-D.
In the nucleus of cells, 1,25-D binds to short sequences of DNA. Known as
response elements, these sequences switch on the activity of adjacent genes.
"We wanted to find out what genes were next to the vitamin D response
elements," White recalls.
Two of these response elements proved to be neighbors of genes that make
antimicrobial peptides, cathelicidin and beta-defensin 2, the researchers
reported in 2004. When the researchers administered 1,25-D to a variety of
cells, production of beta-defensin 2 increased "modestly," White told
Science News. In contrast, he says, the gene for making cathelicidin "went
boom! Its induction was very, very strong."
Almost a year later, while hunting for triggers for cathelicidin production,
Gombart confirmed the McGill finding. His group had been administering
various natural signaling agents to white blood cells, which the immune
system sends out to vanquish germs.
In these cells, "nothing turned on the cathelicidin gene to any degree
except vitamin D. And it really turned that gene onjust cranked it up,"
Gombart says. "I was completely surprised."
Independently, dermatologist Mona Ståhle of the Karolinska Institute in
Stockholm reached a similar conclusion when she realized that both vitamin D
and several antimicrobials, including cathelicidin, are produced in the
skin. She says, "It just came to mean intuitive thoughtthat maybe the sun,
through vitamin D production, might help regulate the skin's antimicrobial
response."
So, her team administered an ointment containing a drug mimic of 1,25-D to
the skin of four healthy people. The salve hit "the jackpot, right away,"
Ståhle says. In the May 2005 Journal of Investigative Dermatology, her team
reported that where the ointment had been applied, cathelicidin-gene
activity skyrocketed as much as 100-fold. The team also found evidence of a
localized increase in the concentration of cathelicidin.
Tackling TB and more
Those studies, though suggestive, didn't reveal whether vitamin D directly
reduced infection risk in people. Together with Gallo, microbial
immunologist Robert Modlin of UCLA and his colleagues moved closer to that
goal: They evaluated the vitamin's role in fending off the tuberculosis (TB)
germ Mycobacterium tuberculosis.
This group, working independently of Gombart's team, had been focusing on
macrophages, a type of white blood cell deployed by the immune system to
gobble up and destroy germs. These defense cells have features, called
toll-like receptors, that identify biochemical patterns characteristic of
invading microbes. If the receptors sense an invader, they can trigger
cathelicidin production.
Modlin's team showed that before making that antibiotic, those cells briefly
boosted their production of vitamin D receptors and of an enzyme that
converts the vitamin D prehormone into 1,25-D. However, the data suggested
that significant concentrations of 1,25-D would develop only in the presence
of the TB bacteria. This indicated that the microbe, and perhaps other
germs, must be present for the enzyme to maximize its production of 1,25-D,
Modlin says.
His group then tested whether people's blood concentrations of the
prehormone are high enough to drive the production of germ-killing
concentrations of cathelicidin. Black people, because of the sun-filtering
effect of dark pigments in their skin, are far more likely than whites to be
vitamin D deficient (SN: 10/16/04, p. 248:
http://www.sciencenews.org/articles/20041016/bob9.asp
<http://www.sciencenews.org/articles/20041016/bob9.asp
blacks tend to be more susceptible to TB than whites and to develop a more
severe illness when infected.
The team collected blood serum from white people and from blacks. When the
researchers added TB bacteria, macrophages in the serum from black
participants produced 63 percent less cathelicidinand were less likely to
kill the germsthan were macrophages incubated in serum from whites.
The scientists then added vitamin D to the serum from blacks until
concentrations of the prehormone matched those in the serum from whites.
This boosted the macrophages' cathelicidin production and rates of
TB-microbe killing to those seen when such cells were incubated in serum
from whites. Modlin's group reported its findings in the March 24 Science.
The new data may explain the difference between blacks and whites in TB
susceptibility. Modlin says, "We showed that serum from African American
individuals did not support the production of the antibiotic by immune
cells, until the serum received supplemental vitamin D."
"We're now planning to do a clinical trial and treat African Americans who
are deficient with vitamin D to correct their serum levels [of the
prehormone] and see if this will change their antimicrobial response,"
Modlin says.
Gallo is also planning a new trial. His group will compare the effectiveness
of supplemental vitamin D in elevating cathelicidin concentrations when
administered as oral supplements or as a skin treatment.
The team expects to see the biggest benefit in skin wounds. However, Gallo
predicts that even healthy skin will exhibit somewhat elevated antimicrobial
concentrations, signaling an improved resistance to infection.
Sun exposurein moderationmight also prove therapeutic, Ståhle's team
suggested in the November 2005 Journal of Investigative Dermatology. The
scientists showed that in eight fair-skinned people, a single dose of
ultraviolet-B radiationjust enough to evoke some skin reddening the next
dayactivated the vitamin D receptor and the cathelicidin gene in the
exposed skin.
Ståhle is now beginning a trial of people with skin infections. A drug
analog of 1,25-D will be applied to see whether it speeds wound healing.
Flu too?
Many other findings also suggested to Cannell's team that flu vulnerability
might be tempered by adequate vitamin D intake. The researchers have
marshaled data, gleaned from 120 or so reports over the past 70 years,
suggesting a link between vitamin D and resistance to infections.
For instance, the researchers point to studies showing that in winter,
colds, flu, and other respiratory diseases are more common and more likely
to be deadly than they are in summer. During winter, ultraviolet-light
exposure tends to be low because people spend more time indoors and the
atmosphere filters out more of the sun's rays, especially at mid and high
latitudes.
Cannell's group cites a 1997 study showing that the rate of pneumonia in
Ethiopian children with rickets, and therefore a likely vitamin D
deficiency, was 13 times as high as in children without that disease. The
researchers also point to five studies since the 1930s that have linked
reduced risks of infectious disease to dietary supplementation with cod
liver oil, a rich source of vitamin D.
Although the arguments in the paper by Cannell's group "are provocative,"
White says, "I find them believable."
So does Gallo. "There are many microbes out there that rarely-to-never cause
disease in immunocompetent individuals. It's not because the microbes don't
choose to infect us," he notes. "It's because the body's immune defense
against the microbes is sufficient to control their proliferation."
It's possible, he says, that a shortfall in vitamin D might seriously
compromise that defense.
Gombart's group is developing rodents in which vitamin D modulates
cathelicidin.
Until such lab animals are available, vitamin D's impacteven on flu
risk"should be explored in clinical trials," Zasloff says, because the
treatment poses little risk to people.
Moreover, he argues, the payoff from any positive finding "would be amazing.
Imagine being able to block the spread of epidemic flu with appropriate
doses of this vitamin."

my story-Skip-Zavie

2008-06-10 00:39:14

In a message dated 2/10/2007 8:19:10 P.M. Eastern Standard Time,
zmiller@... writes:
Hi Lynne,
If you need to inform your doctors about the AMN drug, you are going to the
wrong doctors. They should be informing you about the new drugs that are out
there. You need to be seen by a doctor who specializes in CML.
Skip didn't have to tell his doctor about AMN107.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
Dear Zavie, I believe you. However, my doctor told me that the onus is on me
to find out what is out there!!! Yes, I could not believe it either. Another
trip to see Dr. Mauro may be just what I need. I am getting so fed up. The
doctor I am seeing is a sweet, sweet guy, and I love being his patient, but he
is very pro-bmt. I am not. I think I pushed some buttons while I was there
he did not like. He is only at the hospital one day a week, and that is to
see just 3 patients and I one of them. Looks like Boston may be another option,
as he says it should be, if I don't go see Mauro. But, as usual, you are
correct when you say I have the wrong doctor. Yeah, I feel the egg on my face,
hahaha!
I just received some VERY good advice.....to meditate on the answer. Pray
for it and reach for it.
Thanks for being there...Lynne A.

my story-Skip

2008-06-10 00:14:58

In a message dated 2/10/2007 4:10:02 P.M. Eastern Standard Time,
skipd_2002@... writes:
Dear Lynne
I sent you a private email, please let me know if it
all arrives ok, not sure about AOL..
Dear Skip, your email arrived fine and I wrote to you just a minute ago
privately. You are my hero!! - Lynne A.

[cml 2]Coralee

2008-06-09 17:21:37

Hi Lynne,
There were AMN trials done at Dana Farber, so you should have tons of info
from those docs right in Boston area. Jerry's list has an AMN board....it
is not real active but you might get some info there.
www.newcmldrug.com
click on AMN Talk
I think maybe you are saying No to Sprycel because of the pleural
effusion....which only happens in something like 15 - 30% of patients. You
could still try this drug, which is available now, and then discontinue it
if it caused you problems.
I have known you for years and it seems like you have always had a doc
pushing you for a BMT. I think that is a bad idea (and a last resort for
you) because you are so drug sensitive.....what do you think a BMT
involves, months and years of necessary drugs!!! I would love to see you
find a doc (within your health care system) that has more experience
dealing with the cml drugs.........but maybe you are one of those who just
doesn't do well with this medication. Anyway, best of luck to you.
Maui Nanc
PS I am