CML

This is the book that I referred to in my last post..
It's called,
"Cereal for Dinner: Strategies, shortcuts, and sanity for Mom's
battling illess"
By Kristine Breese
PS: No, you don't have to eat cereal for dinner, but people wouldn't
die if they did on occasion. It's meant to be like a joke.
Sincerely, Lynn

Hi Kathie,
I was reading your post, and started thinking about what Moms and
women do when dealing with illness. I was sad to hear about all the
expectations that you put on yourself, when you are not feeling
good.
While it's great that your family wants to come and visit you, why
put so much pressure on yourself to "perform", and put on the nice
dinner and entertain? I realize that "Moms" are most often the hub
of the family. Families rely on Mom doing the "stuff" ie,, cooking,
cleaning, entertainment, etc. Taking into consideration how bad you
feel, and what you have going on in your life right now, I think that
your family should be taking care of YOU. Period.
Is there any way that you can suggest that you are not feeling up to
having visitors at the present time? It's not that you don't love
them. It's that you are sick, and need to get well. Wellness should
be the priority. Why put yourself through that, when you are not even
looking forward to it? Remember the saying,, "When Momma's not
happy, nobody is happy?" Well, Mom's need to stop being everything
to everyone, and let someone else take care of you for a change.
I read a really interesting book lately, and I'm trying to remember
the name,, something like, "Cereal for Dinner".. It's about women
dealing with chronic illnesses and their families, and shares the
stories of many women who have faced and still face chronic
illnesses, and how they coped with family and the expectations that
are put them. They learn how to reevaluate their roll as a mother,
wife, and caretaker and learn how to readjust priorities when the
illness takes over.
I got this book from the library, but I'm going to look up the
offical name and author and re-post it. It's very good reading for
Moms with CML or any life-altering trauma/surgery.
Please don't think I'm lecturing you. I just feel like you are
trying to do too much, and not taking care of #1. I wish you health
and wellness!
Sincerely, Lynn
DX 12/10/03
305,000 white count at DX
PCRU -400 mg
Zavie #692

Hello Nancy,
Glad to know that your qPCR is going down with every test. It is more
than likely that it will continue this way. I would guess that your
doctor relies more on the cytogenetics from your BMB every three
months than the results of the qPCR. In you case it would probably
be interesting to compare your quarterly cytogenetics with the
results of your qpcr, I and I am sure others would like to know what
they were. I am not aware of many places who take such regular BMB
and PCR's. Perhaps if you feel like it and have the data we could
have a discussion. I am assuming that when you have a BMB you not
only get your cytogentics, but also qPCR on the same speciment.
Would be nice to see if there is any correlation, particularly since
you are MMR.
You are right, we cannot be complacent, once we stop IM, the disease
will continue on with its progression. IM is just a way of stopping
the clock at the moment. However, while the clock is stopped, other
drugs are being researched that just might offer us the
elusive "cure" and for that we are all very grateful.
The cost of my qpcrs are covered here under our medical system.
However, I was worried about the quality and experience much the same
that you reported so I chose to go to MSKCC as a follow up. I am an
American, and members of my family have been quite successfully
treated at MSKCC. So, it was natural for me to go there. I would
hate to think the money is not being well spent and that the
informaiton I am getting is less than optimal.
On the other hand, I am alsways still "homesick" for NYC, Cape Code
and Martha's Vineyard as these are all places that I have so many
special memories of since my childhood. So, why not take a bad
situation (such as getting CML) and turn it into a good way of re-
connecting with all the things I really love to do? Makes the
experience so much more comforting for me. I am very satisfied with
my results from MSKCC, I am concerend though to see that the
techniques or lab results might just be questionable.
I might call them myself since it costs so much. Maybe they can
explain the situation to me.
I hope to see you this summer when I go visit my friend Margaret.
Cheers,
Cheryl-Anne

Hi Cheryl,
Thanks for your thoughts. My qpcr has been going down with every test.
There is no concern that I am not PCRU because it continues to be lower each
time so far. I hope that continues. Do you know how much your dr. relies on
the qpcr? My dr. at Sloan says she barely looks at it and never makes any
treatment decisions based on it. Her reason is that even if someone is PCRU we
know there are still cells present, we know that if they stop Gleevec the ph+
cells will return, so they are not really ever without any ph+ cells. It's
just another test. I'm sorry to hear how expensive it is for you to have it.
Will your new trial cover the cost of the qpcr for you in Canada?
Nancy in NY
400 mg.
dx. 1/04
Zero Club #756

Jennifer and Dr. Richard,
Thank you for your replies to my post. It does make me wonder how much the
medical profession appreciates patient knowledge or empowerment. I feel
uncomfortable asking knowledgeable questions because I'm "not supposed" to have
all this information learned through the listserve groups. I must remember to
be stronger and even if I have to make a nuisance of myself, to get all the
paperwork that I want copies of. I get tired of playing phone-tag when
asking for copies, then being ignored after being told they'll be mailed asap.
I
like to have my copies in hand before my next appointment, so I can formulate
questions. Their procedure is to give you copies when you are there in
person, right before you leave. Well, then you can't ask any questions based
on
the results. Nobody is refusing the copies, but they "forget" to include the
qpcr unless it's specifically asked for by name. What part of "I would
like copies of ALL my tests from my last appointment" do they not understand?
I didn't realize it was still pretty standard to do bma's the first 18 mos.
I'll follow the recommendation that I continue on the three month schedule
and hope to be still doing well enough after 18 mos. to lengthen the time in
between them. At lease the procedure is tolerable with little discomfort at
Sloan. I do like my dr. very much and want to continue to be treated at
MSKCC. My former local oncologist (who dumped me because he won't be second
fiddle to a specialist) had few cml patients. I'm more comfortable being seen
by
a dr. who sees many other cml patients. If I become a stronger advocate for
myself, I'm sure we can reach a compromise between my expectations and the
hospital's procedures.
Sometimes I think they may be so busy handling patients that are in much
worse shape than I am that I don't get the attention I'd like. If that's the
case, I'll be glad I'm doing well and hope if I ever need more of their time
that I'd be treated more carefully.
Thanks again, I appreciate the discussion on this topic.
Nancy in NY
dx. Jan. 04
Zero Club #756

Hello John,
Thank you very much for your kind words. I do hope we can do one
again and that it will have good content for everyone.
It was quite a lot of work. I have been working almost 7 days a week
since January 4th making this conference happen. Most of the work
was done solo as an associate had to back out just after Christmas.
However, in the last few weeks many good friends jumped in with
support and I am very grateful. This conference gave me a chance to
meet with some of the top cancer researchers here in Montreal and
from around the world, I feel quite priveledged. Every one of the
corportae sponsors were very happy with the results and the faculty
says there will definetly be a FACT (Future Approaches to Cancer
Treatment) II. We have lots of planning work to do as we still want
to include the patient workshops.
It was great to see the local CMLers attend and hear from those who
attended over the net. The archive will be available at the same URL
shortly, if anyone is interested. We will still be polling results
from some of the questions we wrote, so stay tuned, we will announce
the results.
Thanks John,
Cheers,
Cheryl-Anne

Hey Barb & Group:
Have added Tommy to my 'special' prayer list', and Group. . . you are all on my
list. Some individually by name and others as a group. . . but in my heart and
prayers constantly. Honey and my daughter talk to me sometime and get frustrated
with me because I don't answer. It is only because I am in my 'prayer mode'.
I met a lady and her daughter at the hospital the other day, her son has brain
cancer and we comforted one another. She had no idea about support groups, now
her daughter is going to do some research.
We finally got a blood support group in my area, everyone has lymphoma, and at
the annual dinner; the speaker had 2 sentences on our bug, related to our gold.
I was the only survivor there, hence my 'giddiness' at finding you guys.
Take care, you are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hey Lynne & Group:
Doc Richard and Jennifer have given you excellent information regarding chronic
sinus infections and pneumonia, but here's my 2 cents anyway. I've had numerous
bouts with the chronic diseases over the past 45 years; per my ' All About Me'
post.
After getting my bug I've had 2 cases, Ampicillin, Amoxicillin Bactrum & the
ZithroPak didn't work. I've tried Avelox, Vibramycin, and Levaquin, getting to
know all the 'cousins',(haha).
During the last hospitalization I was given Levaquin and Neopogen IV to
stabilize my ANC count. After the hospitalization my pharmacist told me that the
Neopogen is available for injection at home, thanx to my insurance, I have to be
given it as an inpatient. I was given an antibiotic by the ear, nose, and throat
doctor that I cannot get filed until Monday because the insurance won't pay for
the 'generic' and 3 pharmacies in my area don't carry the brand "go figure".
My 'great' news is that I don't have to see my Oncologist for 3 months. . . and
bloodwork for 6 weeks . . . YIPPEE!!! I am traveling.
"K"
"I AIN'T FINISHED YET"!!!

Hi Nancy,
You raise a couple of good issues here. First, why does the MSK lab seem so
disorganized? I'm afraid I've been unable to gain any special insight here;
it's been that way ever since I started going there in 11/00, and has gotten
neither better nor worse. Having been out of clinical practice since '96,
and never having practiced in NYC, I'm also not sure whether MSK's lab is
much different from other labs in NY or in New England. I do know that the
state of error control, hospital record keeping and communication with
patients is shockingly bad around the US in general, and my sense is that
this has gotten worse over the past few years, despite much increased
attention to the problem by the major medical societies and by the media.
Medical practices now give greater lip service to "patient empowerment," but
as far as I can tell, little is really done about it. Basically, in centers
where the culture has not swung decisively toward shared decision making by
patients and doctors, the most effective way of getting your information is
by making a nuisance of yourself - making your desire for complete
information clear whenever you see your doctor, and calling your doc's
office before and after each visit to reinforce this. This even holds true
in my case, and I'm a doc myself.
Of course, this just addresses the matter of communication of results. The
unreliability of MSK in even running the right tests in the first place is
another pet peeve of mine. Mostly I blame the lab, but there are times when
I sense that my doc and of his office staff may also be at fault. Much as I
like them personally, I'm thinking I may try a different center, as I wrote
previouslyh. It's true that New York City medicine is rather famous for
dysfunctional tensions between the professional and non-professional
hospital staff, which make hospital stays unpleasant as well as potentially
dangerous to patients. I thought it might be different in the MSK
outpatient departments, but I'm not so sure. I'm hoping that, say, DFC in
Boston, might be a bit better.
The other issue from your post is frequency of BMA's. I believe it's still
pretty standard to do BMA's on each visit for the first 12-18 months, and
this is probably the protocol your doc is following, but it's not at all
clear to me why they need to stick with that in your case, where you reached
PCRU so quickly. Again, this is something I'd ask your doc, and if he can't
give you a clearly reasoned explanation of the advantages to you, then you
might just ask them to stop. This is your right, after all - you can always
refuse any medical procedure.
I hope this longwinded answer is of some help to you.
Yours,
Richard R
PS - I see that Jennifer also addressed your questions - with some great
insights, as always. Hi Jennifer - nice to see you here!

http://www.fototime.com/D0FC207BABA7FB4/orig.jpg
Fun fountain...makes the greatest "plunking" sounds.
Wortham Park
Texas Medical Center
Houston
717

I just finished watching Cheryl-Anne's web cast on
CML.
It was very well done and informative. I wish all of
the LLS conferences were done this way, as it is nice
to see and hear the presenters.
Zavie also did a great job explaining the Zero Club
and it's importance to us all.
My heartfelt thanks go to Cheryl-Anne for making this
extremely well done web cast, which was part of her
three day conference, available to us all.
Thanks again,
John M
#425 Zavies zero club

Hi Nancy,
That sounds frustrating!
Keep in mind that most states, if not all now, have laws in place that
explain what rights patients have for getting copies of their medical
records. You may have to go through MSKCC's records department - give
them a ring and see what they require.
Usually you just write a letter with the dates of the records you want,
what kinds of records you want (I generally cover everything by stating
something like copies of all lab reports, doctors' notes, imaging
studies, bone marrow exams, blood work, etc.) and the purpose for which
you want them. Most institutions are allowed, by state law, to charge $X
amount per page they must copy. (Where I am, I get around this by
stating that the records are for use by a physician at another
institution, so I don't have to pay the copying fees.) I have also found
that simply requesting a copy of the blood work or exams when I see my
doctor also works just fine - the nurse or someone else can easily print
a copy. But you must request this. If you forget to request it, take a
notebook with you and write down everything you want to go over during
the visit, including requests for records. Just don't forget to look
over the notebook! :-)
As far as requiring bone marrow exams more frequently than you desire:
Talk to your doctor about this. It's your body, your decision. Also,
institutions must have in place rules regarding research. In some cases,
for instance, when you first become a patient somewhere, among all the
paperwork you fill out you might fill out a form about consenting or not
consenting to have samples of your "stuff" used in research. You should
find out if you did this. You can always change your mind one way or
another. They can't use your samples in research without your consent.
In any case, if you don't want something done to you (eg, bone marrow),
don't do it. A doctor cannot make you do something you don't want to do.
Still, I highly doubt any institution, no matter whether you've given
consent or not, is going to try to force you to have more frequent exams
than necessary simply so they can get research samples from you.
You really do need to be an advocate for yourself. If you directly ask
your doctors for copies of your records and they flat-out refuse, take
it up with the medical records department. They cannot, by law, refuse
you.
If you can't seem to get your doctor to take time to answer all of your
questions for you, schedule an additional appointment simply to discuss
these issues. Unfortunately, because of insurance and hospital
pressures, many doctors are allotted only a few minutes with their
patients, sometimes less than 15. But most will allow you to schedule an
extra appointment simply for discussion. They just aren't able to take
the time during their normal schedule because it would create a
tremendous backlog.
Hope this helps. Sorry it got so long-winded.
jennifer g.
=======================================
You can make a difference today in the life of a cancer patient
tomorrow.
Please support the Leukemia Society with your donation:
http://www.cmlsupport.com/seejenrun.htm
=======================================

Dr. Richard and others: I have some questions regarding the disorganization
of MSKCC's lab and their qpcr results. If you can give me further
information about your feelings in this matter, I'd appreciate it. I was at
Sloan
last week. I asked for all the paperwork of my results from my Feb. bma. When
I got home, I realized they failed to give me the qpcr. I have had a
difficult time getting the paperwork on that in the past. I feel like they
don't
want to give it and barely want to discuss it. I do know the results were
0.005% (because I asked) , but why can't I have the paperwork? I know, I
should
have carefully looked at the papers before I left. Unfortunately, I didn't
realize this until I got home. I'm also disappointed that they still want me
to have bma's every three months even though I'm at zero and was diagnosed
over 14 mos. ago. I wonder if they want me to go through this procedure every
three months for their own research or for my own benefit. What do you
think?
Thanks,
Nancy in NY

Thanks, Nancy.
Barb

Hello...my post transplant HGB has been hovering at about 9.7. I
can function, but I am much happier at 12 or so.
Before all this transplant stuff happened, I had tried a clinical
trial of Gleevec and Zarnestra combined. This was short lived as it
did not work, but it did take my HGB down to around 8.7.
My onc gave me a shot at a newer drug called Aranesp, which works
like Procrit but with a time release effect. I have this injection
4 times in the past 3 years and a single injection had worked
perfectly to get the HGB back up. It worked much better than Procrit
for me.
Here is a fact sheet I located on Aranesp:
Fact Sheet
Aranesp (darepoiten alfa)
Aranesp (also known as NESP) is the trademark name for the novel
erythropoiesis stimulating protein, darbepoiten alfa. This protein
stimulates red blood cell (RBC) production by the same mechanism as
human erythropoietin (EPO). An increase in RBCs improves the amount
of oxygen the blood can carry to the body's muscles. It may also
increase the body's capacity to buffer lactic acid. Aranesp has
legitimate clinical use in the treatment of anaemia in patients with
diseases such as kidney disease, HIV and some cancers.
Aranesp has a three fold longer half-life in the blood than EPO.
This does not mean it is more powerful, but rather it stays in the
blood longer. Athletes may feel that this is an advantage over EPO,
as they would need to inject less frequently and at a lesser
quantity. However staying in the blood longer also gives greater
opportunity for the substance to be detected.
Side Effects
Aranesp has similar side effects to EPO use. This includes causing
the blood to thicken excessively. The heart has to work harder to
pump the thicker blood and the blood is more prone to clot. Aranesp
could increase the risk of heart attack, stroke and clots in the
lung. This risk is exacerbated by dehydration, which often occurs
during endurance exercise.
Status in sport
Aranesp is prohibited both in competition and out of competition as
a method of enhancement of oxygen transfer under World Anti-Doping
Code 2005 Prohibited List (effective 1/1/05).

Richmar is a major manufacturer of elec stim equipment used in PT
Departments.....in our PT/Sports Medicine Dept. at the Uni. of Oregon
we had 4 of these work horses for a professional staff of 6. They have
many different treatment options......and I think the last unit cost about
$3500, but maybe more.
For continued use if needed, you could be switched to a small portable
TENS unit as others have mentioned. TENS stands for transcutaneous
(through the skin) neural (nerve) stimulation...........thought you might
need another acronym for your glossary.
I am now retired to deal with new medical options as available.....but I
sometimes think I might work again in the future....and I would like to do
home health (working mostly with elderly in their homes). PT was definitely
a very satisfying profession.
Maui Nanc

I found the website for the "Neuropathy Machine" that I have found
so effective. It is made by Richmar Corp. and is called a
Stimulator. The model I have been using is called the Winner ST4
Stimulator.
Here are the links:
Home page: http://www.richmarweb.com/
Winner ST4 Stimulator:
http://www.richmarweb.com/winner_st4_stimulator.htm
Just a followup on the brief discussion on this subject.
Regards and Prayers
dt

Hi Barb,
I think on the ACOR list the other day I saw you asking about a book
that I had also heard of before. I went on Google............
the book is The Human Side of Cancer
by Jimmie C. Holland, MD
"Jimmie C. Holland, M.D., author of The Human Side of Cancer, has been
central to the establishment of psycho-oncology as a subspecialty
within oncology dealing with the psychological, social, and
behavioral aspects of cancer. In the 1970s, she recognized the need
to treat the emotional trauma experienced by many cancer patients and
their families, and ultimately became the founder of the field of
psycho-oncology."
If you go on Google....you can see the table of contents, read the
first 2 chapters I think and some recommendations.
On ACOR, the poster had the first name wrong.
Maui Nanc

Hi Kathie,
It does sound like you need a GI work-up to rule out a bleed or deal with
one if found. I could not function with a hgb of 8.8....I will tell you
that. The
only time mine was that low was when I was on inf and ara-c.....and I passed
out in my kitchen one night and woke up on the floor. I was immediately put
on Procrit and also got a unit of red cells (my only transfusion to date). For
me, anything under 10 makes me feel like I am dragging a bit but with Procrit
I keep in the normal range. Procrit does not work for everyone...I don't know
about the other drug.
Hey......order out or get a big, yummy pizza and enjoy your family....esp.
those
grandkids. Moms don't have to do all the cooking you know!
Maui Nanc

Dear Friends,
Thanks for all of the responses to my Hello post. I had a CBC today
and my counts were further surpressed. WBC at 1.9, Hemoglobin 8.8
and Gran at .9. So my Fl. onc decided to take me off arnesp and but
me back on ProCrit. Then tonight the sharp pain I have occasionally
gotten in my stomach returned and then I read about the possiblity of
ulcers and the comments about lowering the Gleevec dose. So I think
I will call my onc on Monday and fess up to the stomach pain and see
if he thinks I might have an ulcer. In any case, something has to
give.
And I just get so mad. I do fine with a Hemo of 9.5 or so, but when
it gets this low I just feel like I am moving through jello. Today I
had to cancel a family dinner I was looking forward to cooking
because I just didn't have the energy to shop and then cook. We are
in the midst of having our kids visit. Our daughter and her husband
are here now, and our son, daughter-in-law and three grands are
scheduled week after next. At the moment I can't really fathom I
will get through that week (twins who are a year and a three year
old! And it just makes me so mad.
Excuse the pity party, I've been having it all day. I promise to get
off soon and to return to my usual up beat self. I really just
wanted to say that I really appreciate the help. Once again you all
have given me things to think about.
Cheers,
Kathie in Kentucky (Florida)

In a message dated 3/17/2005 9:03:57 P.M. Eastern Standard Time,
rrockef1@... writes:
How long were you off IM, and are you still off it? If so, are you taking
anything else to combat your CML, or planning to do so? If you are off it,
are you checking your CBC regularly, along with any other CML parameters
(FISH, qPCR)? It would seem a good idea to follow these at least. I'd
Richard, I was off IM for about 3 1/2 weeks. Then in Belize my CBC read
21,500 so I immediately started up on IM. I hit myself pretty hard. The bone
pain
now is awful but I have peace of mind that my counts should be going back
down (last checked 7,400) in spite of being ill. I am going for a FISH and the
bmb next Tues. if I feel up to it. I should be better by then, already I am
trying to venture outside to do an errand on my own, very shaky but managing.
I also am going to Boston the week after next for another consult, so I
should be ok. I know that my current onc. is NOT happy that I am taking Gleevec,
but he offered nothing else either. - Lynne A.

Had a bone marrow biopsy late this morning using concious sedation.
They must have took a bit more marrow than usual or possibly hit me
twice because this evening I am more sore than usual.
After 5 years of regular biopsies and aspirations, I again have to
laud the benefits of concious sedation. I am a big baby when it
comes to invasive procedures. Always have been and always will be.
I didn't even know about concious sedation until a couple of years
ago when I had to have a wisdom tooth removed. The dentist asked me
if I wanted sedation and I decided to try it. I sat in the chair, a
nurse put a needle in a vein in my hand, and the next thing I know,
my wife was walking me back to the house and to bed. I had no
recollection of the procedure, although I was concious the whole
time and was able to comply with instructions (turn your head, open
wider, etc.)
A month later I am scheduling a quartely BMB at MDACC and I
mentioned this dental experience and asked if they offer the same
thing. I was surprised to hear that it was offered. All I could
think of was "Why didn't you tell me this 3 year ago!". Now I
won't have a biopsy without the sedation. They always try to talk
me out of it...even this last one, but it is non-negotiable. No
sedation, no biopsy. It was even easier this time because I already
have a central line hooked up, which they used to administer the
sedative(s).
I know the pain is relatively brief, but as bad as the pain for me
is the buildup of anxiety waiting for the procedure. Now, because I
know that I won't remember a thing other than that first little IV
needle sting, I am completely relaxed about the entire thing. Makes
my life that much easier.
Some people don't mind having the process using a local only, but I
like to be far far away when that biopsy needle closes in. I can
find no reason to have any discomfort during the procedure as long
as this type of sedation is available.
Anyway, now I'm back in the apartment. I'm a little sore but I'm
glad the biopsy is behind me (pun intended!).
Just my two cents on the BMB/BMA thing.
Regards and prayers
dt

Hi Susan,
Can you please email me your address and phone number? My address
book is now in Ottawa!?! And I can't seem to find you on messenger
anymore...are still using MSN Messenger?
Love, Christine

Hi Richard, I see you too have decided that this little "possible" change is
not going to get you down.
I also read the post from Cheryl about picking one lab and sticking to it.
The problem is that I don't know which one to stick with right now.
I think my Onc will make that decision for us soon.
I am very fortunate that he is very thorough when to comes to testing, etc.
I had BMB's every 3 months just up until my 3 year anniversary. He then said
ok you're doing great so let's do them every year.
I have been PCRU .000 since August of 2001 after being on Gleevec for only 2
months. And that was always by BMBA.
Just last year the same lab that had always done my tests from BMBA
indicated the .1 then 2 weeks later it was 0 but from PB at the local center
here in Tampa.
(I went back to our major center here thinking it would be a good idea to be
an active patient in the event an upward trend occurred)
I cannot remember which breakpoints the most recent PCR showed an increase
in. I didn't ask for a copy of the test that day because I kind of reacted
quickly with a denial comment - "I am not worried about that" But honestly
as soon as I left his office, I was worried. BUT...only for a few minutes:)
I am going to pose your question about the breakpoints to my ONC and ask
that he compare to the original dx BMB.
He will be very interested in this suggestion since he thinks very highly of
this support group and now suggest that every one of his patients join an
online support group like this.
But, I don't really remember them doing a PCR at initial dx?
Some didn't even get a FISH back then in May 2000.
I had my first FISH done 90 days after dx during BMB and it was from the
advice I received from this group that prompted my ONC to do it.
Remember FISH was the big NEW test back then IN 2000.
Then qualitative PCR & Now Quantitative R-PCR
I will get a copy of all 3 reports once I get the results from my BMA I just
had and post them to the group.
Hopefully this will just lead us to figuring out which lab is the best to
use.
Thanks again,
Lisa
Hi Lisa,
Thanks for your concern regarding my PCR. I still don't know whether the
increase from a very low 0.0002 to 0.0018 was real or not, because the
repeat test had a sensitivity of only 0.002, as opposed to their usual
0.0001. I don't know why this is; I was told it's because my RNA might have
degraded, but this doesn't really make much sense to me. In any case, I've
stopped worrying about it because the chances that I'm actually relapsing
arre very low, and I've got much better things to think about. I am,
however, considering switching centers for future PCR's. Boston is much
closer to me than NYC, and MSKCC's lab has been just a bit too disorganized
for my taste. I'd appreciate recommendations from any of you regarding Dana
Farber heme-oncs.
I agree, this is all pretty confusing, Lisa. It's a common dilemma -
getting second or third opinions, or backup lab tests, then not knowing
which to believe among the differing results. It doesn't help that qPCR's
for BCR-ABL haven't yet been standardized nationwide. This pertains to the
problems I'm facing as well.
A couple of questions about your post. First, I'm unclear on whether the
breakpoint that was noted in your test was the same as the one you were
diagnosed with, or a new one. That is, was the 0.1 a ratio of one breakpoint
to another, or is that the actual qPCR result? I'm a bit rusty on the
subject of breakpoints, but as I recall, a couple of them carry normal
prognostic significance, where others are not so favorable.
Then there's the matter of PB vs BMA. With respect to breakpoints, I don't
think it should matter which one you use because within a short time of
being produced in the marrow, all white cells show up in the blood. It's
only when the Phillies are reproducing rapidly, such as in accelerated or
blast phase disease, that there's likely to be much of a discrepancy. There
are other reasons to have BMA's done from time to time though, and if you
haven't had one for over a year and have still not reached a 3 log reduction
by qPCR, then I'd consider it a good idea.
I look forward to seeing your next test results.
Warmly,
Richard R
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.859 / Virus Database: 585 - Release Date: 2/14/2005

Hi Barb,
I am glad that you get to squeeze in a nice family vacation before you all
start this part of Tom's cml journey. I am sure he will do very well and look
forward to following him on a caringbridge site.
Maui Nanc

It's good to see the names I recognize. I don't post much anymore,
but still read on a regular basis and was sad to see the old group
just wasn't the same anymore.
I go back to L.A. for my 6th month appointment with Dr. Sawyers on
April 18. We're leaving home on the day before Easter and will have
our RV down in the Southwest. I'm always nervous, but my PCR
remains clear at the last test. I still have the rash, FATIGUE,
fluid retention & a few other things, but they are all all things I
will gladly live with to keep enjoy life.
Any questions will gladly be answered.
Hugs from Wyoming,
Linda B.
dxed Oct. 97
Gleevec since Aug. 99
PCRU

Hi Tracey,
No, it's odd isn't it? No stomach or throat pain at all! That's one reason I
brought it up. It wasn't on my radar screen at all.
Be well,
Susan L

Barb,
Tommy and all of your family will be in my prayers. Please do keep
us updated on his progress.
Hugs,
~Dana

The transplant coordinator for Fairview Medical Center in Minneapolis
called yesterday. Tommy will start his pre-transplant work up on April
18-22. Then we will be home for a few days. Then we will be back in
Minneapolis on April 26, with his line being put in on the 27th and the
chemo/radiation protocol starting on the 28th. He will be receiving the
marrow on May 4th. I will set up a caring bridge site and will post the
address when I am done working on it. We are off to Florida (Fort Myers
Beach) for a vacation until March 27. I would appreciate any prayers
you could send our way.
Barb Neddo,
Eagle River, WI,
Mom to Tom, 16, dx CML 8/04,
BMT 5/04/05

Dane,
The gadget is called a TENS unit and it is used for pain in any part of the
body that those electrode pads can be attached.
If you still have the pain when you get to day 100 (and I hope you do not!)
ask to get a portable one to take with you. My husband has one for back pain.
Tanya
husband Georg, dx 7/04
hematologic remission
Gleevec 400 mg
working on PCRU
At 02:36 PM 03/17/2005, dane714@... intelligently penned

Hi Lynne,
Just wanted to say hello and wish you well. Sorry about the pneumonia and the
accompanying stress.
Feel better soon!
Best,
Susan L

Hi Susan,
I was just wondering, did you have any abdominal pain or other
symptoms when you were found to be bleeding? It certainly sounds
painful.
Take care,
Tracey

Hi Kathie,
In regards to your low counts and especially the Hgb that you're prodding upward
with Procrit:
I've been on and off Procrit since 2002 when I was on 800 mg IM. Then, last
September my Hgb tanked to 5.9 and my Hcrt to 18. I hadn't had Procrit for 3
months and, though I blame myself for this as well as the doc, hadn't had a
blood draw during that time either. I should have known better given my history
and so should have the doc. I no longer see her, btw.
Now, I'm with an excellent heme/onc and on 600 mg IM. I've had to have Procrit
-- sometimes the usual 40,000 units and other times 60,000 units. During this
time (last Nov.) we discovered that I was having internal bleeding and I had a
colonoscopy and a scope dropped down my throat, too. I had two stomach bleeds
and redness throughout the stomach and around the esophagus which everyone
assumed (there's that WORD) was caused by Gleevec. Today, my doc asked me to
take stool samples again to see if I'm bleeding again. The treatment for that
at this point has been to take a double dose of Prilosec daily (anti-acid
reflux) and three iron pills a day.Today my Hgb was 9.3 whereas it was over 12 a
month ago.
You might want to check to see if you have some internal bleeding since you say
your Hgb is steadily going downhill. It's worth a check. If I am bleeding
again, I'll report here what treatment I'm prescribed. It's silly to pump
Procrit in if it's just bleeding out.
Be well. Glad you're here.
Warmly,
Susan L

Dear Lynne,
How long were you off IM, and are you still off it? If so, are you taking
anything else to combat your CML, or planning to do so? If you are off it,
are you checking your CBC regularly, along with any other CML parameters
(FISH, qPCR)? It would seem a good idea to follow these at least. I'd
expect your white count to be up from your pneumonia anyway, but it would be
good to know what baseline you were starting from.
When did you get back from Belize? I haven't been reading the lists all
that much, or I'm sure I'd know.
That depends on the extent of your relapse. By the time leukemia has
reinhabited your bone marrow, spleen and especially your lymph nodes, then,
yes, I expect it would interfere with immune function. But at a WBC of,
say, 20-40,000, it shouldn't make much difference.
Walking pneumonia is so called because you feel well enough to walk around.
You have a fever, but a pretty low grade one, usually without shaking
chills. The cough is usually hacking though over time it becomes productive
of sputum - though not as much as with bacterial pneumonia. Most "walking
pneumonia" is caused by organisms which are neither bacteria nor viruses,
such as chlamydia, Legionella and mycoplasma.
By contrast, bacterial pneumonia makes you much sicker, usually with shaking
chills, high fever, and a cough productive of darkly colored sputum. The
two are also distinguishable by xray.
Get better soon, Lynne.
Richard R

Hi Kathie,
It's nice to see you here and get a recap of your story. It sounds
like you're doing great!
I was just wondering since your white count is on the low end, what
is your ANC usually? Also, do you know if your marrow is
hypocellular (you would see this on your BMB report). I would imagin
that it is since your counts are low.
I just had a BMB last week and it was hypocellular so I'm curious to
see how many others are in the same boat and if it's correlated to
the low counts. My reds are OK but my whites have been sliding for
the last few months.
Take care,
Tracey
dx Jan 2002

Dear CML Brothers and Sisters:
I want to thank Amy for creating this group and I hope that it will
function as the old site did before all the problems which I didn't
follow and still don't understand. What I know is that most of the
people whose technical expertise I have come to trust and to value
are now putting their energies into this group and so I am happy to
be able to be a member and to contribute when I have something to add.
Let me reintroduce myself. I am a 55 year old happily married woman
who is a textbook author and was a college professor. I was
diagnosed with CML in Dec 03 when a routine CBC done as part of an
annual physical revealed a WBC of 78,000. I began taking Gleevec on
Dec. 26 of that year and thanks to the Internet I insisted on 800 mg
dosage as I had read that M.D. Anderson was now using that as the
standard dosage for all new CML patients (I now know that this dosage
is controversial, but it's working for me). I am blessed to have
experience very minor side effects except for losing my pigment and
having a HGB that continues to tank even with Arnesp shots at max
dosage. I have yet to need a transfusion, but there is definately a
slow downward trend. My WBC runs between 2.1 and 2.4. So because of
these counts I have routine CBC's every other week. At some point I
know that my dose may have to be lowered or I may have to take
a "Gleevec vacation" but I am thankful that I have been able to
tolerate the higher dose and I have been fortunate to have responded
well to the Gleevec on a molacular level and was delighted to be able
to apply to Zavie for a Zero Club number several months after
beginning treatment (#767). My most recent BMB was in January and my
PCR continues to improve, it is now at .0048. I have health
insurance through the university from which I retired which has been
excellent. I see Dr. Giles at M.D. Anderson on a consulting basis
(this is where my BMB is done) and am attended by two local hemo-
oncs, one in Florida where we are now residents, and one in Kentucky
where we have recently moved from but still maintain a residence so
we can visit our kids and grandkids.
I can't tell you how grateful I have been for the CML warriors who
have graciously answered my questions and let me learn through their
responses to others. I am so sad that the larger group is no longer
tenable, and I will do what I can to help to make this place a safe
haven of support for all of us who are currently fighting this
disease, and those unfortunate souls who will join our ranks.
I continue to beleive that CML will become a real CHRONIC disease
which is manageable with drugs and I continue to pray that this will
happen within all of our lifetime.
Sincerely,
Kathie in Kentucky

Thanks Amy for making a clear statement and clearing up some
misrepresentation that has been going on in another group.
We all appreciate what you have done in giving us a new place
to meet up and share our CML concerns and interests.
Maui Nanc

One of the unfortunate side effects of the chemo I had was
neuropathy of the feet. This can range from a feeling of numbness
or tingling to considerably intense pain. I got the pain part. It
was very uncomfortable to walk anywhere, and putting on socks and
shoes felt like someone was holding a hot iron to my skin.
I tried the drug Neurontin for it, but it just made me feel worse
and the side effects of the drug scared me off it.
I found great relief by soaking my feet in cold water and taking
Darvon at night when they really started throbbing.
The folks down at Physical Therapy hooked my feet up to this gizmo.
After every workout, I lie down for 30 minutes with all these wires
hooked to my upper legs and feet.
I had my doubts about this thing, mainly because I could not feel
any of the microelectric currents it sends to my nerves, but low and
behold, after about 4 sessions...the pain started subsiding. Now I
do this twice a week and the pain is completely gone.
Just an FYI for any chemo patients that have this side effect in the
future. This gadget works.
http://www.fototime.com/4BCE1064E32AB7E/orig.jpg
http://www.fototime.com/3E73EDAA26F8C9F/orig.jpg

Just a quick note about the group!
History 101: This group was started on March 9, 2005 after all the
bickering and junk in the other group. Started so that there was a
space free for SUPPORTING CMLers! I, AMY, started this group, no one
asked me to, no one encouraged me. The support I received in the
other CML group was invaluable to me and my family when I was
diagnosed and remained so until a few months ago. My feelings were
that everyone needed that place again SO HERE WE ARE.
Support: Everyone has opinions regarding different subjects, or this
would be a boring world. Please respect that and just remember why
we are all in the group to begin with. SUPPORT! KNOWLEDGE! A place
where we know we aren't alone, and that someone out there understands.
Sensorship: There is no actual sensorship in this group. Everyone
is free to post about CML, or the support of people with CML,
caregivers, friends and anything that falls in between. There have
been no members banned, no one stopped from posting, nothing of the
sort. I have placed Rob on moderate due to his differences with a
few of the people in the group, and only so that none of the HOOPLA
that was in the other group is carried over, when two messages were
received regarding all that business they were left out of the
group. Anything he might wish to post regarding CML will be approved
happily. Everyone and ANYONE can join this group. CML is not
selective, so this group is not!
Email: Email is just that EMAIL, nothing to do with the group! If
someone emails you and its not a wanted or favorable email, please
just delete it, or handle it personally. The group is not
responsible for what is sent out via a members personal email. There
is a disclaimer and I want to reinforce that now. E-mail messages or
postings are not intended as medical advice, and should not be relied
upon as a substitute for consultations with qualified health
professionals who are familiar with your individual medical needs<TY
Dane
There are two moderators in the group as well as myself, control is
not the function of the moderators, just trying to get things to run
smoothly. All ideas and suggestions for the betterment of the group
are always welcome!
Please enjoy the group. Again, it is not MY group it is everyones
group, make it what you will.

Thanks for lifting my spirits yesterday with your replies. Feeling
much better.
Today was a great day so far. I am really starting to appreciate
the benefits of Physical Therapy!
http://www.fototime.com/8AF8A32B04407BC/orig.jpg

Hi Lisa,
Thanks for your concern regarding my PCR. I still don't know whether the
increase from a very low 0.0002 to 0.0018 was real or not, because the
repeat test had a sensitivity of only 0.002, as opposed to their usual
0.0001. I don't know why this is; I was told it's because my RNA might have
degraded, but this doesn't really make much sense to me. In any case, I've
stopped worrying about it because the chances that I'm actually relapsing
arre very low, and I've got much better things to think about. I am,
however, considering switching centers for future PCR's. Boston is much
closer to me than NYC, and MSKCC's lab has been just a bit too disorganized
for my taste. I'd appreciate recommendations from any of you regarding Dana
Farber heme-oncs.
I agree, this is all pretty confusing, Lisa. It's a common dilemma -
getting second or third opinions, or backup lab tests, then not knowing
which to believe among the differing results. It doesn't help that qPCR's
for BCR-ABL haven't yet been standardized nationwide. This pertains to the
problems I'm facing as well.
A couple of questions about your post. First, I'm unclear on whether the
breakpoint that was noted in your test was the same as the one you were
diagnosed with, or a new one. That is, was the 0.1 a ratio of one breakpoint
to another, or is that the actual qPCR result? I'm a bit rusty on the
subject of breakpoints, but as I recall, a couple of them carry normal
prognostic significance, where others are not so favorable.
Then there's the matter of PB vs BMA. With respect to breakpoints, I don't
think it should matter which one you use because within a short time of
being produced in the marrow, all white cells show up in the blood. It's
only when the Phillies are reproducing rapidly, such as in accelerated or
blast phase disease, that there's likely to be much of a discrepancy. There
are other reasons to have BMA's done from time to time though, and if you
haven't had one for over a year and have still not reached a 3 log reduction
by qPCR, then I'd consider it a good idea.
I look forward to seeing your next test results.
Warmly,
Richard R

In a message dated 3/17/2005 1:22:13 A.M. Eastern Standard Time,
ncogan@... writes:
The onc there said absolutely
Debra, I wish I could help you, because I am facing some of the same
decisions as you are, although it is not the liver that is causing my problems
with
Gleevec. My current oncologist is pushing me towards BMT and I tried to
redirect his thinking when I realized BMS drug might be an option. BMT takes an
incredible leap of faith in my mind. But then I talk to people who have had
parents/brothers/friends go through one and they just shrug and say,"He's
doing great now, it's been 5 years and he never misses a days' work," things
like
that and I ask myself if I am being overly pessimistic when it comes to
making that decision.
I don't know. I do know that when my doctor said "NO MORE GLEEVEC" a month
ago, in one way I was elated to be able to put aside the worsening side
effects, but on the other hand, I read what he wrote in my medical records,
"Told
patient that relapse could be possible within 6 weeks to 13 months after
discontinuing IM therapy." and freaked out. I am aware that he is covering
himself by writing that and it is really such an individual thing as to when
and
how a patient would relapse if left untreated. So, I back on Gleevec of my own
volition and in the meantime scrambling to find alternative treatment. I
have one problem. Two years ago I was biopsied for a lump in my left breast and
a marker (chip) was left in to follow the progress of said lump. I neglected
to get a mammogram last year (my own choice) and now I have a little problem.
The lump has grown and is now causing problems. I have testing set up within
a few weeks, but it just so happens to be around the time I go to see about
BMS trial. I am hoping this lump is nothing..wishful thinking, positive
thinking (which is why I have ignored it thus far.)
My purpose in writing to you is regarding the history of breast cancer you
wrote about. You had a lumpectomy? This is what I am looking at in terms of
possible participation in future trials. I want to have as much information as
I can. I know I'll get it on April 5 when I meet at Dana Farber with Dr.
Stone about the BMS trial protocol and qualifications, but in the meantime I
would like to know why this would prevent your participation in the trial. I did
not see the whole email only an excerpt of it that you wrote ... your onc.
was unsure if you would qualify. If you have any further information regarding
this would you be so kind as to share it with me when and if you hear from
your oncologist?
I know I may be premature but just want to get ready for anything/everything.
I do hope your liver problem can be resolved, and as Nancy C. wrote, we have
a member who went through all of that and was successful. She fought a long
time to get it under control but she did it.
You are not alone in having to make these decisions. There are so many of us
out here in limbo.....I know I probably have not helped you any but wanted to
let you know that I am in similar straights. Praying for you, Lynne A.

In a message dated 3/16/2005 11:58:37 P.M. Eastern Standard Time,
rrockef1@... writes:
but if not, I want to reassure you that getting an
infection such as this isn't likely to indicate loss of your cytogenetic
and/or hematologic response. It takes quite a lot of progression (or
relapse) of CML for the immune system to be much disrupted; and conversely,
anyone can get pneumonia, especially if they have a history of asthma (which
I'm inferring, with you being on albuteral?).
Thank you Richard for commenting on my post expressing my fears about my
latest setback. That is exactly what I wanted to know, and was going to ask my
ever-elusive oncologist this question today if I could track him down. I
don't have asthma, but since I was so "tightly congested" as my primary doctor
put it, he sent me home with this machine and some albuteral to inhale every 3
hours, along with guafinex with codeine. Finally, today I got up without the
dull pain in my back, and am so glad I made the call not to have the bone
marrow biopsy done yesterday. I cannot imagine it could have been done, one
huge COUGH and the needle would have slipped anyway, haha!
My fears were founded on the fact that someone's son went into the hospital
with the same symptoms I have, and it was there he was found to be in blast
phase and died. And then Marque passed away due to pneumonia complications and
his CML was not stable. I guess my fears are irrational when one would assume
I am still in chronic phase. I just think that going off of Gleevec for as
long as I did surely compromised my remission status. But it is all an unknown
at the moment, for I have had no blood draws since the day I returned from
BZ, and no FISH nor bone marrow results to view.
I will not be surprised if I have lost my remission. Saddened, yes, but by
my own stupidity and unwillingness to continue living with the side effects of
Gleevec. I am glad that you think this would have nothing to do with the
sudden onset of my illness, though.
I was just wondering that if my counts are high, wouldn't it make it harder
for me to heal from this illness quicker? While getting pneumonia would not
indicate loss of remission, would loss of remission make the body weaker and
more prone to infection?
As I said earlier, this will be my 6th bout with pneumonia over 25 years.
Someone mentioned that if the doctors thought this would be life-threatening
then I would be in the hospital, but in two cases of pneumonia that I had
previously, this was not the case. It was only until I was near death that
they
finally admitted me, and then I was hospitalized for 2 weeks.
Can you tell me what the difference is between "walking pneumonia" and
pneumonia? I know that there are viral and bacterial forms of both. Perhaps
that
is why antibiotics would not work in the case of a viral infection. Rather,
the medicine would only "clean up" the by products of the pneumonia, and not
take care of the raging virus.
In any case, if I am not better by tomorrow, I am going to insist on taking
more drastic measures. Is it normal to have pain in your lower back on both
sides when you breath? It feels awfully heavy. Of course I worry, worry,
thinking CML is taking this opportunity to do something sneaky while the body
is trying to fight off this thing. thanks....glad to be here, also. Hope this
group works well for all of us. Oh, by the way, on the plane ride home I sat
with a doctor who did the doctor without border thing...very interesting
stories he had. - Lynne A.

Hi, I just joined this group and am looking for the directory. Who is
the moderator, are there many or just one? How many members are there
as of March 4, and is there a member directory? thanks, Lynne

Hi Zavie,
Thank you for your response. Yes 111 is my number!
I do recall reading a lot about the plan to standardize the testing but
For now I cannot help but wonder how many of us could actually have false
negatives. I am not trying to rain on anyone's parade - I have a very
positive attitude even now with what could be a possible threat?
What I am thinking is our cancer center here in Fl uses a lab that
Is owned by physicians- I forget the name right now.
My Onc sends my BMBA to Genzyme Genetics
My regular lab is Lab Corp.
If I were a Doctor what results would I rely on? Would it be right to assume
a false positive? That doesn't make sense. Does it? Why would it detect
something that isn't there?
A false negative would seem more likely due to the error margin. Do you
agree?
Are you concerned about your different results?
How high would the numbers need to be where it would be considered a loss of
PCRU?
Sorry for so many questions but as much as I feel I know there's always more
I want to know.
Any ones help in understanding this would be greatly appreciated.
Thanks,
Lisa -
Tampa Fl
Message: 9
Date: Wed, 16 Mar 2005 21:15:53 -0500
From: "Zavie Miller" <zmiller@...
Subject: RE: Richard R & the rest of the group
Hi Lisa,
I have the same dilemma. It appears to be a total crapshoot when it comes to
PCR testing. I know that Dr. Hochhaus' lab in Mannheim does the most
sensitive and most consistent PCR testing. There is an international effort
underway to standardize PCR testing, but progress is slow.
From my own personal experience ... A PCR test done at the Royal Victoria
Hospital in Montreal was PCRU while a PCR test done in Mannheim was 0.55.
How far apart can you get.
Novartis Canada is now doing free PCR testing for all patients who request
it. There are 7 labs (independent) across Canada doing the testing and they
are standardized according to Novartis' guidelines. I was 0.021 on November
25, 2004 and just had a blood draw last week. It will be interesting to see
the results.
My local haematologist thinks it is safe to go a year (even longer) without
a BMB as long as you are at Zero.
Zavie
Lisa is number 111 in the Zero Club
<snip
My question is how the heck do we know which darn lab has accurate results?
And is it really safe to go a whole year without a BMB? I dunno??? As soon
as I get my BMBA results I will post it all here so we can all try to figure
out what's going on. Thanks
Lisa Martinez
Tampa Fl

I am lifted in mind and spirit by your reply, Judy. Thank you so
much.

Hi Dane
I have been following your transplant with great interest . You have done so
well, it must be hard to be away from family for so long. When I had my
transplant we lived close to the hospital and my husband could bring my children
in regularly. I understand what you mean about having times when you feel blue,
just remember little steps. Your energy will return so slowly that at first you
won't even notice, then one day you will realise you are able to do so much more
than you could before. I pray for you often and hope you continue to do well.
Take care of your mind, keep it in check., don't let it drift away from your
target, it can play tricks on you when you least expect it. Know that you are
in my prayers. It will take time before you feel your old self again, in fact I
don't think you will ever be that person you were, it is like a rebirth. I
thank God for each day now, and my transplant was 12 years ago on the 26th of
March, two days before my birthday. I celebrate 26th
much more than my birthday. I so enjoy your photos, and thankyou for sharing
your journey with us, I look at your web sites often and marvel at your
strength. I don't think I would have been able to keep up with these the way
you did. I tried to write a journal, but managed only a few entries.
I wrote an account later when I was feeling better, but it doesn't have the
impact something like you are doing has. Your journey will help others facing
the decision to go to transplant.
Judy Telford Melbourne Australia

Hey Debra....
You sound much stronger and much more clear about your situation
that when we spoke on the phone last week. Very glad to see that.
As far as your options are concerned, I think that Nancy C is right
on about getting all the facts first. I particularly agree with the
second opinion suggestion. A second opinion saved my life in the
past.
When we spoke, you wanted to know all about my BMT experience. I
stressed to you that I chose this route because both my research onc
and my transplant onc at MDACC concurred that my particular
situation: age, health, strength, sibling match, and a new BMT
protocol...made me an excellent candidate. I thought long and hard
about it while pressing both oncs about the new drugs coming down
the pike. After being assured that my chances of a good graft where
extremely high, and that the new drugs would still be available if
the BMT was to fail, I made my decision. It was a tough one to
make, but I felt and still do feel it was the right one for me in my
specific situation.
Get your options lined up, and please consider getting a second
opinion before making your decision.
Regards and Prayers
dt

Hi Group,
I have posted an article that mentions Gleevec and other drug companes who
are developing like drugs. I hope that is an "allowed" post, because I think
that information sharing about pertinent topics are a function of support
groups.
Warm Regards,
Kristin
Drug Cos. Intensify Cancer Treatment Push
Wed Mar 16, 2:33 PM ET
By THERESA AGOVINO, AP Business Writer
NEW YORK - The war on cancer has some fortified soldiers. Some of the
nation's biggest drug companies are investing an increasing amount of
resources toward finding treatments for the disease.
Cancer research has been a hallmark of companies such as Bristol-Myers
Squibb Co. and AstraZeneca PLC. But over the last few years, others
including Wyeth, Schering-Plough Corp., GlaxoSmithKline PLC and most notably
Merck & Co. have been intensifying their work on cancer medicines. They've
purchased smaller, cancer-focused drug makers; formed licensing
arrangements; added staff and created specialized research centers.
The increasing commitment to cancer treatments grows out of a confluence of
economic and scientific factors. Company executives say the odds of finding
suitable drug candidates have risen significantly in the last few years with
the mapping of the human genome and other technological advances. And new
cancer treatments can command very high prices and generate substantial
revenue, since there is little competition in the field.
Novartis SA's Gleevec, introduced in 2001, treats a form of leukemia as well
as rare tumors of the gastrointestinal tract. It costs about $2,450 a month
wholesale per patient, and brought in $1.6 billion in sales last year.
Erbitux, a treatment for colorectal cancer introduced last year by
Bristol-Myers and ImClone Systems Inc., carries a wholesale cost of between
$18,000 to $40,000 a month per patient. Analysts predict Erbitux will also
be a blockbuster.
Insurance typically covers the cost of treatment, but there's still been
controversy over some cancer drugs' cost. Companies have programs for
patients who lack insurance and can't afford the drugs. Still, those prices
create an attractive market.
"Drug companies are seeing that cancer can be lucrative," said David
Moskowitz, an analyst with Friedman, Billings, Ramsey. "Look at Erbitux and
Gleevec. They may be for small markets, but the prices will let the
companies make money."
Whether the increased investment will lead to a rash of new cancer products
remains to be seen. Drug development is still a risky business; cancer
accounts for the second-largest part of Pfizer Inc.'s research budget but
that hasn't transformed the company into a powerhouse in that area.
Pfizer does have a promising product for patients with the same rare tumors
treated by Gleevec but who have become resistant to that drug. The company
may file for federal approval of the drug later this year. Bert Hazlett, an
analyst with Suntrust Robinson Humphrey, said the drug's sales potential
could reach $800 million to $1 billion if it is approved for other types of
cancer.
Wyeth has a product for kidney cancer it intends to seek approval for next
year. Meanwhile, Novartis SA plans to seek approval for a drug for
colorectal cancer either late this year or in early 2005. Merck, always a
force in the vaccine industry, has an inoculation for cervical cancer that
it plans to seek approval of this year.
"There has just been an explosion of our understanding of cancer since human
genome," said Dr. Lee F. Allen, vice president of oncology clinical research
at Wyeth, which currently sells two cancer drugs.
Two and a half years ago, Wyeth created a center of excellence to research
cancer, placing everyone working on the disease in Cambridge, Mass. This
allowed the group to streamline its approach and work with the academic
community in the area. It currently has 13 cancer drugs in clinical
development, triple the amount from three years ago.
When GlaxoSmithKline was formed through a merger in 2000, the company had
two cancer drugs. Now, with a new focus and additional spending, the company
is developing eight drugs for cancer treatment, plus three for the treatment
of side effects, one vaccine and three therapeutic vaccines.
Perhaps the most pronounced efforts are at Merck, which doesn't sell any
cancer treatments although it does have Emend, a product for nausea caused
by chemotherapy. In the last 18 months, Merck purchased Aton Pharma Inc., a
privately held biotech company focused on cancer treatments, and it has
signed deals with two smaller companies to develop oncology drugs.
A deeper understanding of cancer and advances in technology have contributed
to the shift in drug companies' focus, said Dr. Stephen H. Friend, Merck's
executive vice president of advanced technology and oncology.
"Now we have the tools that allow us to see what is going in cancer cells,"
Friend said. "We've gone from uncertainty about the disease to having more
clues about what we can do."
Friend says it is possible to scan an entire cancer cell to look for
specific mutations that provide researches an idea of which compounds might
be most effective in treating the disease. Such tools mean it can take just
two to five years to bring a compound into clinical development, down from 5
years to 10 years just a few years ago.
Such improvement brings business benefits. Industry experts say it costs
over $800 million to develop a drug. Hastening the development process will
reduce costs. That's especially important for cancer drugs because they have
smaller markets than other diseases; there are many more people who suffer
from high blood pressure, for example, than there are people with most types
of cancer.
Cancer drug development already has some economic advantages - trials are
usually shorter and require fewer patients than drugs to treat other
conditions. For example, Pfizer's Phase III trial for its promising cancer
drug contained less than 400 patients. A typical Phase III study has between
1,000 and 5,000 patients.
The Food and Drug Administration (news - web sites) also has expedited
approval of drugs for cancer and other diseases life-threatening with less
clinical testing than typically required. The companies do have to continue
to study the drugs after approval.
Another advantage to selling cancer drugs is that the smaller patient
populations allows for more targeted marketing, "The marketing is less
expensive because it is more focused," said Dr. Joerg Reinhardt, head of
development at Novartis.

Hi Nick,
You got it. PCRU is all zeros. 0.00000
However, not all labs are created equal.
You can be PCRU in one lab, but not in another lab. Until we have a standard
in place for PCR testing we will be comparing apples to oranges when it
comes to PCR results.
It wouldn't be so bad if it was only a 1 log difference between labs, but
often it is much bigger.
Zavie

Hello, time to reintroduce myself. Debra here, following the crowd
from Rob's group. Dx Feb.'03 with CML. Luckily found it in the very
earliest of possible stages. 3 mos of 400 Gleevec, then 3 mos of
600. Reached pcru. Stayed there for 6mos, had 1 yr anniversary BMB
which showed still PCRU. 2 weeks later end up in hospital for 9 days
with liver enzymes dangerously elevated. . Of course they yanked the
Gleevec and liver enzyme numbers proceeded to come back down. I go
to Siteman Cancer Center in ST Louis. The onc there said absolutely
no more Gleevec. And that my choices are maybe to get on the BMS
study. Which will start mid april in St Louis. Or have a BMT which
they are presently testing my siblings for a match. The Onc was
unsure if i would qualify for the study because of a history of
Breast Cancer 3 yrs ago. (lumpectomy only, no chemo or radiation).I
am presently taking NOTHING . Which makes me nervous. But Onc seems
to think i'll hold remission on my own, for awhile. I am sceduled
for a Fish test April 1st. And go back to StLouis to see Onc April
15th. He said we would decide our plan of action then. Based on the
numbers. I have studied and prayed for the correct decision. Any
suggestions, thoughts or prayers would be appreciated. Thanks Debra

Hi Debra,
This is one of those questions that no one can really answer for you....
partly because there is no 'right' answer. But you want to keep collecting
all the pieces of the puzzle, and keep assessing.
You don't mention how old you are....and that factors in. Also, you don't
know yet if you have a sibling match and this makes a pretty big difference
in a BMT. You are still collecting data for this decision....and there should
not be a rush to make a quick decision. Can't you be put on hydrea for the
present time?
I would consult at the BMT center when you know if you have a sibling match
or not....if you don't have a match, they can do a preliminary search to see
how many potential donors you might have. Sometimes finding an unrelated
match can take several months. Also the BMT center should have statistics
for your age and type of donor.....to give you some idea of success rate.
Regarding the liver problem, did you get a second opinion about this....from
another CML specialist. Maybe, depending on how high your liver enzymes
went (and were you being routinely monitored by a blood chemistry for this
problem? did it develop slowly over time or suddenly?)......maybe other
specialists would feel the same about never taking Gleevec again but I
would want to know. Dr. Druker would be a good 2nd opinion that your doctor
could get about this....I personally know a patient of his that went off IM
several times for elevated liver enzymes, eventually was treated with
prednisone and able to resume taking a therapeutic dose of IM.
And the next piece of the puzzle is to find out if you would qualify for a BMS
trial. Now that the trials are just starting up.....this should be pretty
easy to
determine from a BMS trial center....they have the protocols and patient
criteria.
When you truly know your options and circumstances (like the type of donor
for a BMT).......then you can assess the choices....but it does not seem
that you have the information that you need quite yet. Keep researching
to get this information.......I think that then you will be able to feel
that you
made a well informed and best choice. I hope others will also give you
some ideas.......most of us might have an idea what we would do ourselves
but that is not the same as saying what someone else should do.
Maui Nanc

Hi Dane,
Joe looks like he's close to the tallest in the family now. I'm glad you're
doing so well..
Hugs,

Would someone please explain what the numbers need to be to be PCRU?
All zeroes?

Just wanted to say I'm glad to join this group. I passed my two year
mark on Gleevec in January. Last PCR was 0.026 I dropped back to 600
mg at that time from 800. I have felt better and all blood work
normal. Next BMB in April. Really anxious to see results. Best wishes
to all. Nick

.
Darlin' Dane,
I wish there was some way that I could color you happy today!! We
can all kinda understand how you are feeling, but don't know for
sure until we actually go through it ourselves. I am sure that your
daughter will brighten things up greatly!!! Hope you have a great
time with her and that you try and find something that you can laugh
about (if I was there, I would do some of my famous "faces" for you.
I can always get my friends to laugh at them....or are they just
laughing AT ME??)
Big HUGS to you and the family!
Trisha-age 41
Parsons, KS
dx 9/99

Hi Susan,
No you did not say anything negative about Dr. Druker......
Scott had a doctor that he did not like (and just fired I believe)
and mentioned that he does not live that far away from Portland
and could see Dr. Druker.........and like you, I was telling Scott
that Dr. D is one of the best.
Susan and I go way back because I met her when she was first
getting diagnosed at MDACC and I was there for a consult. Then
she sought a 2nd opinion with Dr. Druker and decided to stay with
him.
Maui Nanc

Hi Lisa,
I have the same dilemma. It appears to be a total crapshoot when it comes to
PCR testing. I know that Dr. Hochhaus' lab in Mannheim does the most
sensitive and most consistent PCR testing. There is an international effort
underway to standardize PCR testing, but progress is slow.
From my own personal experience ... A PCR test done at the Royal Victoria
Hospital in Montreal was PCRU while a PCR test done in Mannheim was 0.55.
How far apart can you get.
Novartis Canada is now doing free PCR testing for all patients who request
it. There are 7 labs (independent) across Canada doing the testing and they
are standardized according to Novartis' guidelines. I was 0.021 on November
25, 2004 and just had a blood draw last week. It will be interesting to see
the results.
My local haematologist thinks it is safe to go a year (even longer) without
a BMB as long as you are at Zero.
Zavie
Lisa is number 111 in the Zero Club
<snip
My question is how the heck do we know which darn lab has accurate results?
And is it really safe to go a whole year without a BMB? I dunno???
As soon as I get my BMBA results I will post it all here so we can all try
to figure out what's going on.
Thanks
Lisa Martinez
Tampa Fl

I am sorry about my mistake in the year I was diagnosed. I was
diagnosed on January 8, 2003 (not 2008)
Undetectable means the same thing as Nancy pointed out!
Dr. Brian Druker (correct spelling) is a wonderful doctor. He would
have to be excellent since I travel NINE hours to see hime!!! I do
not think I mention anything in my post to indicate otherwise so I am
not sure what Nancy and the young man were referring too! Guess I
will have to wait and see by your responses.
It is healthy to have disagreements, I believe. I do not feel that
people have to warn each other to press the delete key before
sending. Sometimes, we need to vent and it is healthy as long as it
is constructive and not distructive.
Have a wonderful week/weekend ahead.
I WISH that this had it's own spellchecker besides putting this into
Word!!!
Sincerely,
Susan R
Miami, Florida

Hi Pt,
Hypocellular is when there are few blood cells and more fat cells in
the marrow whereas normocellular is when there is an adequate amount
of blood cells. Hypercellular is when there are too many blood
cells in the marrow (like when we were first diagnosed).
Hypo=not enough,
Hyper=too many,
Normo=normal.
Hope that helps,
Tracey

In a message dated 3/16/2005 7:59:14 P.M. Eastern Standard Time,
jenniferg@... writes:
pneumonia twice since being diagnosed 5+ years ago. But
neither time was severe and antibiotics worked well. Could be purely
coincidental; I don't know. I do have chronic sinus infections
I remember in June 1982 I was backpacking in Ireland and I came down with a
cough. By September I still had the cough and it turned into the flu. Then on
Halloween that year, I ended up in the hospital because I could not breathe
and felt like my back hurt. I was dxd with pneumonia at age 23. My life
literally hung in the balance for over a week. It took me months to recover,
and I
even lost a job because I could not gain back my strength to put in a full
day. It left permanent scarring in my left lung. Now this lung is the one
killing me. My back hurts and I cannot cough because when I do my head is
sore. I know the signs of pneumonia and I hope and pray that, as in your case,
the antibiotics will work this time. I have a question about antibiotics
though. I usually use Zithromax - Zpack. This time, it had no effect upon me.
I
got worse. They put me on Levaquin. Once upon a time, when I first got my
computer, I remember seeing a Quinalone website, where people who had once been
treated with this antibiotic ended up with side effects that lasted. I am
not feeling like researching this right now, but just wondered if anyone has
had any of the quinalone family, Levaquin, Tequin, etc. prescribed for them?
I had my 5 bouts with pneumonia before CML, and not once have had it since
dx. This is the first scare I've had with my lungs since CML. My husband was
coughing all over me for days when I first came home from BZ, and he was in
bed for 2 so I figure whatever I have I caught from him. I thought the
pneumonia shot was good for a few years....I had that 2 years ago. The flu
shot
I've had, but apparently did not work here. I am just keeping my fingers
crossed it goes away. I don't want to do battle with pneumonia ever again like
that. What scares me is that each time I fall ill with CML, it takes longer
and
longer to heal. And while fighting one of these life-threatening infections,
does the CML take advantage and mutate while you are down and out? - Lynne
A.

Hi Tracey,
I always come around with the terms such as normocellular or hypocellular when
reading the literature, but can't seem to really understand its representation.
Could you help to enlighten me on this?
Thanks, pt

Kinda hit me hard today....been here 35 days since transplant and at
least 30 days pre-transplant.
I'm glad that things are going so well physically, but I am
homesick.
I miss my neighborhood, my house, my kids, my dog, I just miss my
life.
This 100 day living in a fishbowl thing is wearing thin on both me
and my wife.
Good thing my daughter is coming up on Friday and staying for Spring
Break....I'm sure she will bring some sunshine back into my heart.
But right now, as I write this...I am blue.
Just venting, I guess.

Greetings, TO ALL
Here I am ready or not....You guys move so fast..It took me a few
days to catch up. Special Hi to Maui Nancy...the CML Turtle. I am

Hi Richard & everyone,
Saw your post the other day about some changes in your PCR test and hope you
are doing well. I also figured it would be a good time to share SOME of my
results with you and the rest of the group.
I am 39 (40 next month) was Diagnosed in May 2000 - Interferon & ARC until
Gleevec was FDA approved.
On Gleevec since June 2001 and August 2001 PCRU
Had my biopsies almost every 90 days until 2003 when my oncologist finally
said he felt comfortable doing them every year, but I still had to do the
PCR by PB every 90 days.
In February 2004 my BMA indicated that there was a very small amount
detected In one of the 3 major break points. .1 very low. But with that my
doctor insisted I go and get another PB PCR and see if it was the same or if
it differed. So I went back to my local Cancer center here after almost 4
years of not going there and their test was negative.
We decided to believe the best.
I was scheduled for this years BMBA just this Monday and prior to my visit
my Dr asked me to go get my PCR at a different lab (Labcorp)
My results from Labcorp indicate the same major breakpoint from last year
going from .1 to .5 and now another one of the 3 is .22
It is a small amount I know but again we are thinking about the possibility
of an upward trend.
We are now going to compare the PB PCR to the BMA but the results won't be
In until around the end of next week.
To go one step further my doctor has me going back to the local center here
to use their Lab so we can compare all 3.
I think he still believes that there is a difference in the PB PCR test and
The PCR from the BMA.
My question is how the heck do we know which darn lab has accurate results?
And is it really safe to go a whole year without a BMB? I dunno???
As soon as I get my BMBA results I will post it all here so we can all try
to figure out what's going on.
Thanks
Lisa Martinez
Tampa Fl
Message: 6
Date: Tue, 15 Mar 2005 19:37:43 -0000
From: "gilder52" <rrockef1@...
Subject: Thanks, Amy
Thank you for starting this listserv, Amy. I was timely.
It's nice to see many of the old "faces" here, as well as a number of new
ones.

Dear Lynne,
Sorry to hear about your pneumonia. I have heard of three other Non-
CML people struggling with varying degrees of pneumonia in recent
weeks. Strange! It can be quite scary. Does your Onc think that
there is a connection to the CML? I had not heard of it being more
common among CML'ers. You are in my thoughts and prayers. Take care
of yourself and get better soon!
~Erin in MI

Hi Chris, I am new too. Let's hope this group works well, too! Glad to see
you here. I don't know yet who is on here but I am still subscribed to all
lists. I just cannot read all of the posts right now...but until I can, just
wanted to say Hi and I am here too. - Lynne A.

Hi Richard,
I agree with Dane. The historical interest is reason enough to
import the file and it gives us a way to see how much CML treatment
has progressed. I had a class motto that said "Live in the present,
guided by the past, for the future" and I know in my case it works.
Thank you for your help in building this new group.
Take care,
John M

Hi everyone, i just unsubscribed from Rob's group(he did a good job,
but it's time to leave the past behind) and have joined this group.
I was a every-so-often poster before and have been helped a great
deal by many of you.
chris in Minn
dx 12-3-03
remission 6-04
some anemia problems
take procrit or aranesp
as needed
treatment at Mayo (Rochester)

salam alikom
this is a massage from hassan i have joined one the too iam with you alwys in
any list thanks love happy new year

Hi, Old CMLer new to this group. Lynne A. checking in here, thanks
to Nancy C.'s recommendation. I want to find a "quiet" forum because
I am not feeling my best lately and hope I can find some supportive
members to share with.
I have my first case of pneumonia since CML and am very worried. I
have been to doctor's but my oncologist never called til it was too
late in the day to get my counts done there, but I am on Levaquin, in
bed (5 days now) and inhaling Albuteral. I am very, very scared. I
remember asking group members to sign in when we are very sick on the
other sites, so I am doing the same.
I hope to see my oncologist tomorrow morning for blood counts.
I just wanted to ask out there if anyone else has recently lost their
hematological remission and then gotten pneumonia?
Is this cause for me to be worried? Thanks, Lynne

Well Folks,
I am busy "burning the midnight oil" putting the final touches on
the cancer conference here in Montreal. This project has been a bit
of a labor or love, I guess. I have been working on it for over a
year and it is a bit of a relief to know that it is finally coming
to fruition. I have actually done most of the work myself -phew
tired!
The conference covers all types of cancers from Brain, Prostate,
Breast, Hematological, and Colorectal to name a few. The faculty
will present the latest innovations for diagnosis and treatment. I
have to say that the area of colon cancer has significantly improved
in the past couple of years. There are four new drugs for this
area. Sadly none of these drugs were available when my mother was
dxed with colon cancer so many years ago.
The conference starts on Thursday morning and continues until
Saturday afternoon with the CML workshop - The First Canadian Forum
on CML being broadcast live on the web.
Needless to say, I'll be off list for the next few days and hope to
make it to Sunday with my sanity still in tact.
However, I do have a project in the making for September. It will
be a weekend retreat for cancer patients - free of charge. It will
cover meditation, nutrition, yoga and mindfulness training. I'll
keep you all posted when I have more news.
Much Metta to everyone!
Cheryl-Anne

I just imported the latest version (as of 4/03 - hardly current!) of the CML
Glossary. I couldn't bring myself to import the one called "CMLinfo.doc"
though, because the advice in it mostly pertains to newly diagnosed CML
patients the pre-IM era. Our concerns then were pretty different from now, and I
suppose for that reason it's of historical interest. I don't know, what do
others
think - worth bringing over anyway?
Richard R

Hi Tanya and George,
Have you been to Death Valley this year to see the wildflowers? I
understand it's the best show in 100 years! So much rain. We were
there a couple weeks ago and they were just beginning to bloom. Hope
to get there again before they are all gone. I know you live fairly
close to Death Valley, so thought you may visit there more often than
others who live farther away.
Bob and I will be at UCLA next Monday the 21th. Take care and be
well.
blessed be nancy w inyokern ca

Hi Trisha,
Yes, I'll be glad to copy some of that stuff here - though I'm afraid some of
it's a
bit out of date. I welcome any comments you all might make, and will be happy
to ammend them when I get the time.
Cheers,
Richard R

Hi Scott,
When people write that they are pcru......which is the most sensitive test,
the 'u' stands for undetectable. So if the sensitivity of the pcr test was
1,000,000 cells.....they did not find one cml cell in a million......
isn't there a song about that.
Also, I think maybe you are going to see a new doctor. Depending on
how that doctor treats you, you could easily become a patient of
Dr. Druker (if your insurance would allow it). Susan flies from Florida to
see Dr. Druker twice a year. He schedules an hour for his patients
and spends longer than that if needed with new patients. I have never
heard any complaints about Dr. D.
Maui Nanc
also an OHSU patient

Decided to check in. Have'nt had time to catch up on much as I have
been super busy with changes at my real job. Haven't caught on to
all that has been happening but decided I did not want to miss
anything important happening to anyone within the CML Family so will
check in here periodically.
Richard H.
dxd 2/03
Gleevec 3/03
PCR-U 6/03

Hi Susan,
It's great to see you here! I have a question for you. When you
had your last BMB, what kind of cellularity did you have? Do you
know if it was normocellular or hypocellular? I would assume if
your red cells are struggling, that it would be hypocellular so I'm
curious.
Anyone else have hypocellular marrow?
Take care,
Tracey

Dear Dane,
Your "boring" news continue to bring a smile to my face when ever I
read a post from you.
Prayers and thoughts that you and your family (special thoughts to
your marvelous caretaker, Elizabeth)continue to do so well.
Love,
Cheryl

Boy! I have heard a lot of stuff has been going on so I just decided
to pop onto this group to avoid the other "group". It is so sad when
we had such a wonderful group! I know that we will make this a
wonderful group too!
I have undetectable CML as of October 14. I see Dr. Druker in
Oregon. I need to have another BMB/BMA this month (March 24-anybody
going to be there?) to rule out mylodesplesia (sp). The reason is
that I have become "Transfusion dependent" on Gleevec-Dr. Druker has
never seen a case like mine before and thought he should begin ruling
other things out. I need a transfusion every 5-8 weeks. My
hemoglobin will not produce its own red blood cells. I am on Procrit
60,000 units every week!
Other than this, I am a full-time Kindergarten teach