CML

Thanks Kay

hallo
tonight is the jewish new years eve. i would like to wish all our jewish members
and friends happy holiday and "shana tova" (happy new year), a lot of health and
success.
shalom
giora

I too have experenced blisters/rashes. I was also sent to my
Dermotologist,and biopsied. For me they were caused as another side
effect of Gleevec,water pills,and the sun. It. turned out to be an
allergic reaction to hydoroclorithiazide. An ingredent in all water
pills, and when in the sun, even for several minutes it causes the
rash.It's on my back, and legs, they itch, and when I break them open
they are like pox sores. My Dr. perscribed a cream (Clobetasol
Propionate usp,0.05)and it has helped a lot.
I have also found something for the neasuea from Gleevec. They
are called Queasy-pops, they are all natural and ,drug free. you can
ck them out on (www.queasypop.com.)
Also I found a deoderant to use if any of you have had breast
cancer and can't use regular deodrants, or tell a friend.You can find
it at Walmart or drug stores.(Naturally Fresh Deodrant crystal)
(www.tccd.com).
Hope this helps a little it has helped me and I wanted to pass
this along.
Health to all
Eagledove(Kay)

Subject: This is very bueatiful and touching.
Short cut to:
http://i.euniverse.com/funpages/cms_content/2529/4candles.swf
Teresa T

Hi Jennifer,
I don't know if I can explain the blisters or not. Everyone I talk to has a
different
pattern with them. For me, 4 months after starting gleevec, I had a large patch
of
them on my shin. They were in a form of a cluster. They itched and hurt at the
same
time - just like chicken pox. They appeared to be bumps in the skin that held
water.
The blister would break and then they would scab over and then heal ---and then
flare
up again. This pattern kept up for quite a while. I also had individual ones
pop up
on my hand, shoulder and neck with an occasional one on my head
( in my hair). Once they popped, they would scab over and heal. Today, the ones
on my
shin rarely flare up but my leg looks like I have been burnt. It looks like a
red
scar. The area is from the ankle to the knee. On occasion I still get a few
single
ones that pop up, but go away. I have been on gleevec 400 mg since June of 2002.
The
longer I am on it, the less they appear. I know of some people who have had to
go off
of gleevec because their entire body was covered with them. One of my CML
friends in
Georgia is going on the BMS trial because he cannot tolerate gleevec and has
blisters
over 100% of his body. Mine have never been that bad.
I hope this helps.
Barb in AZ
Message: 3
Date: Fri, 30 Sep 2005 23:14:22 EDT
From: vegasrnjen@...
Subject: Re: Blister Sisters
Can someone explain the blisters? I am starting to have skin changes? 3
months into treatments. I have these tiny, clear looking things on my upper
chest/neck area. You almost cant see them but they are painful? I dont know if
this is the same as what you guys are talking about but I'd thought I'd see if
anyone ran into that as well?
Thanks for allowing me to ask.
Jennifer

I thought you would like to know that we had a situation here in
Quebec were a fellow CMLer was going to be charged more to switch to
the 400 Mg tabs. We checked it out with Novartis and found out that
it was the pharmacist that was taking advantage of the situation, not
Novartis. For the record, here in Canada, and I am pretty certain it
would be the same in the U.S., there should be absolutely no price
difference. Anyway, our fellow CMLer went back to the pharmacist,
who followed it up his supply chain and found out that the super
chain that he bought IM from just arbitrarily added extra charges.
She is now paying the same price as she was for the 100 mg capsules.
On the same note, with regards to price you might want to shop
around. I was purchasing IM from a large super chain drug store just
because it was easier for me to get to. However, they messed up
quite a bit on my Eprex scripts and having rotating pharmacists who
seemed to be always surprised at the cost of Gleevec and would ask
for a deposit before ordering it for me, just made me a bit
irritated. I found a family run and family friendly druggist.
Imagine my surprise when the total cost for the same amount of pills
was $500.00 less expensive then what I had been paying at the other
place. The druggist informed me that he "buy's" IM for about
$2,800.00 and was quite happy charging me $3,100.00 and not the
$3,600 I was being charged by the super chain. This is incredibly
important to me as I am covered through private insurance and worry
that high costs of drugs in general could exhaust the funds or cause
massive premium increases for the other members of the plan.
By the way, my new druggist orders IM from a distributor in Ontario.
In Canada we have the pharmaceutical marketing price review board and
in general they would not allow drug costs to be so varied from
province to province.
So, I was happy to learn that we can shop around. I was and continue
to be delighted to give my business to a family run, family and
patient friendly druggist. We have to take Gleevec anyway, why not
help the "Little guy"! Even if the government fully covers the cost
of your IM, they pay for it with our tax money ;
Cheers,
Cheryl-Anne

Hi Richard,
When they first popped up, my oncologist sent me to a dermatologist who did
biopsy them and cultured the fluid inside. It came back all okay, and he
rattled off a great, long name that essentially said it was a side effect of
drug use. So after multiple doctor visits, numerous checks and expense, I found
my own self -diagnosis was as accurate as theirs! ha ha
Thanks for the post.
The best
Barb in AZ
Message: 9
Date: Fri, 30 Sep 2005 10:05:59 -0400
From: rrockef1 <rrockef1@...
Subject: Re: Blisters - Adrienne and Barb
Hi Barb,
Blisters the size of chicken pox blisters seem suspicious for a recurrent
viral infection - which could very well be related to IM since it does
affect various aspects of the immune system. I recommend you consider going
to an infectious disease specialist next time this happens, and asking
him/her to culture the fluid inside to see what sort of viruses might be
lurking there. Or not; they probably won't be able to do much about it
anyway. But it would be interesting to know, and if others were
experiencing similar viruses, you might be able to publish it!
Regards,
Richard R

Hi Barb,
Blisters the size of chicken pox blisters seem suspicious for a recurrent
viral infection - which could very well be related to IM since it does
affect various aspects of the immune system. I recommend you consider going
to an infectious disease specialist next time this happens, and asking
him/her to culture the fluid inside to see what sort of viruses might be
lurking there. Or not; they probably won't be able to do much about it
anyway. But it would be interesting to know, and if others were
experiencing similar viruses, you might be able to publish it!
Regards,
Richard R

Hi Kristin,
It's not entirely a girl thing. I started this thread by asking about my
husband's blisters. Cheryl, I'd be interested in hearing the results of the
biopsy on your intranasal blisters. And my heart goes out to both of you; those
nasal ones must be very uncomfortable.
Adrienne
kisocean <kisocean@...

Hi all,
I was trying to do homework but the darn Web site I need to do some
practice stats calculations has been down, so here I am.
Thanks for your kind words. I'm sorry in advance for trying to address
everyone in one email, but you know how it goes.
Someone had asked me about the PCR tests that came back with different
results. They were run on the same sample, not different samples. Yet
the results were different. One, from what I can recall, was a several
log increase, while the other was negative. Yeah, that helps. (Not.)
Cheryl, I do think the technology is lagging. Or maybe it's good enough
but we want it to be better, as good enough isn't good enough anymore.
Lynne A., you probably don't remember this, but I have broken ribs
twice, coincidentally (?) since starting Gleevec. They still bother me
sometimes, and that was probably a good four years ago now.
Susan L., did you get your results yet? Isn't it amazing that the BMS
drug is in phase III trials already? We did have a "soft" frost last
night -- early even for Minnesota. Hard frost is expected this coming
week. I refuse to turn the dang heat on this early in the season!
Erin, what exciting news. We have several adoptions in my family from
around the world, and those children are pure joy.
Regardless of what happens, I don't think of my life as being on hold
anymore.
jennifer g.
www.cmlsupport.com
p.s. Cheryl, hey, you spelled "trouper" right in this use! Woo-hoo. No
one *ever* does that. :-) And my new dog is doing great.

On the subject of blisters!
Actually I have small intranasal ulcers which, you might describe as
these blisters. I will probably have them biopsied. But as most of
you know I "cycle" and when I have gone off of IM they go away
completly. I suspect they will turn out to be nothing, and all
though they are quite uncomfortable at times, I sure am glad that
they are not noticeable to anyone else but me!
Cheers,
Cheryl-Anne

Hi Skip,
Thank you for the post.
If you do tolerate at the 300 mg level, ask your doctor if you could try 350
mg next. No need to go to 400 mg.
Good luck,
Zavie

Dear Ana and Barb,
Thanks for your posts about the blisters. It's always nice to know that you're
not the only one out there with a particular side effect. I guess Jim will just
add blisters to his list of Gleevec "surprises".
Adrienne
Barb Stanley <barbarastanley@...
Adrienne:
I have had some blisters over the past three years since beginning gleevec.
They come on my right shin. I also had a cluster in my head, and a small cluster
on my neck. They come and go. They do not get worse. I had biopsies because my
oncologist was concerned but they showed nothing. It is definitely related to
Gleevec. They resemble chickenpox actually. And after they popped up - and
settled down, then they scarred. I now look like I have burn scars. On occasion
they flair up and then subside.
I hope your husbands clears up and know that you are not alone.
Healing wishes
Barb in AZ
From: Adrienne Davis

To all who asked me about test I send this to all to
avoid many eamil. I was to Hematology clinic
yesterday, My gleevec was increased to 300 from two
hundred my counts were plat=39,000 Hem=129,000 and
wBC=5,000. In the next week or so my platlets will
either go up or down. We will allow the Platlets to
go down to 20,000 before they make up their minds.
They would love to get me to the 400m mark. So again
I wait. Now I know how an elevator operator feels.
Thanks for your e-mail, I do appreciate your concern.
Skip
"It is only with the heart one sees rightly- What is
essential is invisible to the eyes"

Adrienne:
I have had some blisters over the past three years since beginning gleevec.
They come on my right shin. I also had a cluster in my head, and a small cluster
on my neck. They come and go. They do not get worse. I had biopsies because my
oncologist was concerned but they showed nothing. It is definitely related to
Gleevec. They resemble chickenpox actually. And after they popped up - and
settled down, then they scarred. I now look like I have burn scars. On occasion
they flair up and then subside.
I hope your husbands clears up and know that you are not alone.
Healing wishes
Barb in AZ
From: Adrienne Davis

By Amanda Gardner
HealthDay Reporter 2 hours, 3 minutes ago
WEDNESDAY, Sept. 28 (HealthDay News) -- A more focused
approach to bone marrow transplant in patients with
blood cancers dramatically lowered the incidence of
graft versus host disease (GVHD) -- a potentially
deadly complication of the procedure -- in a small
group of patients, researchers report.
The approach has the potential to provide an easier
alternative for people with leukemia, lymphoma and
other related cancers, especially people over the age
of 50, who typically have trouble withstanding
conventional bone marrow transplantation procedures.
The findings appear in the Sept. 29 issue of the
New England Journal of Medicine.
"We need replication in other studies but, if it is
verified, it means there would be another approach to
conditioning a patient that would greatly minimize
acute GVHD but lead to the same beneficial effects,"
said Dr. Marshall Lichtman, executive vice president
of research and medical programs for the Leukemia &
Lymphoma Society.
Bone marrow transplants can cure some cases of
leukemia, lymphoma and related blood cancers. The
procedure is a severe one, however, and involves
knocking out the patient's existing bone marrow with
chemotherapy and/or radiation, then replacing the
diseased blood stem cells with healthy stem cells from
a donor.
People over the age of 50, in particular, have a hard
time tolerating the standard form of transplantation,
which can cause GVHD in about 50 percent of cases. In
GVHD, the donor's immune cells attack the patient's
body, causing intense diarrhea and severe rashes,
among other things.
Recently, researchers have managed to show that, in
mice, a less severe procedure had good results with
fewer side effects.
Instead of receiving the blanket chemotherapy and
radiation typical before bone marrow transplantation,
the mice received radiation only to the
lymph-node-bearing areas. They also received
antithymocyte globulin, an immunosuppressive agent
that destroys immune T-cells.
However, instead of destroying all of the patient's
immune T-cells, this treatment selectively depleted
just certain subsets of T-cells and allowed others,
namely regulatory T-cells, to survive. The researchers
explain that regulatory T-cells can hold attacking
immune cells at bay.
"The regulatory T-cells are there in a high enough
ratio to be able to shape and modify the donor immune
cells to protect against GVHD, but still allow donor
T-cells to mediate a graft anti-tumor effect," said
study author Dr. Robert Lowsky, an assistant professor
of medicine at Stanford University School of Medicine.
In other words, the donor T-cells attacked the tumor,
but nothing else.
In the mouse study, regulatory T-cells went from a
comprising 1 percent of total T-cells to more than 90
percent. The mice also had a significant reduction in
acute GVHD.
The current study replicated that procedure in humans.
Thirty-seven patients with lymphoid malignant diseases
or acute leukemia underwent an experimental
conditioning regimen starting with radiation to the
lymph nodes only plus antithymocyte globulin, followed
by a bone marrow transplant.
Only two of the patients developed acute GVHD and only
one of those had "clinically significant" disease. In
addition, patients with lymphoid malignant diseases
who were in partial remission went into a complete
remission.
Rates of chronic GVHD, a less serious form of the
disorder, were no different, the researchers note.
"What these folks are saying is that if you use this
conditioning regimen, you can get very good results
and you eliminate or you greatly minimize acute GVHD,"
Lichtman said. "You keep the good effects while
reducing the bad."
An accompanying editorial pointed out some caveats,
however, including the small number of patients
involved in the study and the inability to discern
exactly what was responsible for the low incidence of
GVHD.
The follow-up time was also not particularly long
(seven months to three years), Lichtman added.
Lowsky and colleagues say they are making plans to
study the procedure in a larger number of patients.
"The findings were pretty striking," Lichtman. "It
would be a step forward in making transplant more
accessible to more people, especially older people,
and reducing the morbidity and mortality from acute
GVHD."

Doctors Make Safer Bone Marrow Transplants
By MARILYNN MARCHIONE, AP Medical Writer
Doctors seem to have found a way to make bone marrow transplants safer
and more effective against blood cancers like leukemia, an achievement
that offers new hope for people over 50 in particular.
The advance by Stanford University doctors could make such
transplants, which have dramatically improved cancer survival among
children and young adults, more widely available to older people who
typically don't fare as well.
It also brings the field closer to its Holy Grail training a
recipient's body to accept tissue from another person and live a
"blended" life without heavy reliance on anti-rejection drugs.
Scientists already had achieved this in mice; Stanford researchers now
have extended it to people. Their study is published in Thursday's
New England Journal of Medicine and was funded by the
National Institutes of Health.
Specialists said the study was small and preliminary, but very
promising.
"If it works, we would be able to do transplants in a lot more
people," said Dr. Mary Horowitz, scientific director of the Center for
International Blood and Marrow Transplant Research, based at the
Medical College of Wisconsin, which had no role in the research.
Ideally, a leukemia or lymphoma patient would be given radiation or
high doses of chemotherapy to destroy the cancerous bone marrow before
receiving healthy marrow or blood stem cells from a donor. However,
many patients, especially those over 50, die of infections they are
unable to fight off before the new marrow takes hold and grows.
To avoid this problem, doctors usually destroy only part of the
patient's original marrow. That brings other dilemmas: some cancerous
blood cells remain, and the new marrow frequently attacks the old
an
often-fatal problem called graft-versus-host disease.
Stanford researchers developed a way to condition the recipient to
accept the new marrow and to inactivate the parts of the patient's
immune system that would attack it. They used a combination of
low-dose radiation over two weeks and short courses of
immune-suppressing drugs.
Only 2 of the 37 patients given the experimental treatment developed
severe graft-versus-host disease. Ordinarily, more than half of them
would have.
An average of one year later, 27 of the 37 were still alive, and
cancer was in complete remission in 24 of them better results
than
usual. The average age of the patients was 52.
"It can achieve the cure of the tumor without the high likelihood that
you will come down with the dreaded side effect," said the lead
researcher, Dr. Samuel Strober.
The results need to be repeated in larger studies, but are
"impressive" and "open a new era in the field," Dr. Gerard Socie, a
transplant expert from several universities in Paris, wrote in an
accompanying editorial.
Patients also need to be followed for longer than a year to see if
they remain cancer-free, Horowitz said.
Bone marrow and blood cell transplants are one reason the death rate
from childhood cancers has dropped roughly 50 percent since the 1970s.
Leukemia is the most common cancer that children face, but it is
diagnosed 10 times more often in older adults the very group for
whom transplants have been most dangerous.
With the new treatment, "the side effects are being markedly reduced,
which is good news for elderly patients with leukemia and lymphoma,"
Strober said.
The approach also might help people receiving organ transplants if
they are "conditioned" with marrow or blood cells from the donor
before receiving a kidney or other organ, Strober said.
New England Journal: http://www.nejm.org

Cancer Drug Might Fight Lethal Lung Hypertension
By E.J. Mundell
HealthDay Reporter
WEDNESDAY, Sept. 28 (HealthDay News) -- Gleevec, a medication experts have
hailed as a wonder drug in the fight against certain cancers, may also come
to the rescue of patients battling lethal pulmonary hypertension.
According to a case study in the Sept. 29 issue of the New England Journal
of Medicine, a 61-year-old man suffering from an advanced case of the
disease saw his condition improve and stabilize after taking Gleevec
(imatinib) -- even though all other medications had failed.
"Only the addition of Gleevec was able to prevent further deterioration, and
even improved his condition," said co-researcher Dr. Hossein A. Ghofrani, of
University Hospital Giessen, in Germany.
Although a single case report does not warrant widespread use of Gleevec for
pulmonary hypertension, the German researchers who wrote the report said
they are now planning a large clinical trial.
"I think a trial is a wonderful idea," said Dr. Richard Stein, a professor
of clinical cardiology at Albert Einstein Medical College in New York City,
and a spokesman for the American Heart Association. "Hopefully, we'll be
able to make a real difference for these people."
According to Stein, pulmonary hypertension occurs when blood pressure mounts
to dangerously high levels in the pulmonary artery, which carries blood from
the right side of the heart to the lungs. The relatively common condition
can occur for many reasons, but most often arises as a byproduct of other
pathologies, such as heart disease and various lung ailments. Under the
strain of these conditions, the pulmonary artery thickens and stiffens,
causing blood pressure to rise.
"Right now, we have two classes of drugs that seem to be improving
outcomes," Stein said. These include prostaglandin-linked compounds such as
prostacyclin, and, more recently, another potent vasodilator -- Viagra
(sildenafil). Both drugs work by relaxing and opening narrowed vessels.
"None of these medications cure the disease or give the patient a normal
life back," Stein noted. "But most can prolong quality-of-life time before
they get very sick." Patients with very high pulmonary blood pressures
usually don't live past a year, he said.
In the German case report, the patient was diagnosed with just such a case
of advanced pulmonary hypertension, this time a rarer, "primary" form of
unknown origin. Standard therapies such as prostacyclin and Viagra proved
useless, and the man's condition continued to deteriorate.
"In this desperate situation, we decided to initiate compassionate treatment
with daily administration of 200 milligrams of oral imatinib mesylate
(Gleevec)," given on top of the other medications, the researchers
explained.
The change in the man's condition was dramatic.
By three months, his condition had improved "impressively," the researchers
said, allowing him to become much stronger and more mobile than before
Gleevec. That improvement has continued to the six-month point, they add.
The therapy appears to be working in other patients, too. "We have
[successfully] treated more than 20 patients so far, all of which had no
other therapeutic options or who were waiting on the transplant list for a
new organ but appeared to run out of time," noted co-researcher Dr.
Friedrich Grimminger, also of Univerity Hospital Giessen.
How did a drug best known for curing chronic myelogenous leukemia beat back
hypertension?
Unlike the other drugs, Gleevec does not appear to work by dilating blood
vessels, according to the researchers. Instead, the key to its effect lies
in a phenomenon shared by both cancer and pulmonary hypertension.
"In cancer, tissue proliferation is uncontrolled and leads to the spreading
of the tumor," Grimminger explained. "In pulmonary hypertension, also,
uncontrolled growth of the vascular wall is the underlying mechanism of the
disease."
"Gleevec is a drug which suppresses uncontrolled growth of tissue by
specific blockade of the so-called tyrosine kinase pathway," he added. "We
have proven that this pathway also plays an important role in the course of
pulmonary hypertension. Due to these similarities, the anticancer drug
Gleevec also works in progressive pulmonary hypertension."
This mechanism made sense to Dr. Norman Edelman, chief medical officer at
the American Lung Association.
"What happens in response to hypertension is that vessels get thicker," he
said. "The assumption is that [Gleevec] reverses that. So this treatment
does have biologic validity, it's plausible."
In fact, because tissue proliferation is a hallmark of other serious
illness, Gleevec's uses might expand even further, according to researcher
Ghofrani. "Our current findings might open the door to a completely new
therapeutic field of targeted treatment for chronic proliferative diseases
such as atherosclerosis, COPD, lung emphysema or lung fibrosis," he said.
Right now, the emphasis is on pulmonary hypertension, however. "A large
worldwide clinical trial is about to be conducted under our scientific
lead," Ghofrani said. Besides testing Gleevec's safety and effectiveness,
"we also hope to answer the question [of] whether the drug also works in
earlier stages of the disease," he noted.
Stein stressed that, right now, experts have "just one report of the drug
being effective." But he's hopeful that the results seen in this patient
will be repeated in the upcoming trial. If that's the case, "Gleevec may
turn out to be a valuable third product that we can use for these people,"
he said.

yes, my mum has those kind of blisters in her legs

Amy,
I am so sorry to hear about your problems with Kidney stones. I have
not seen an increase in kidney stones. I can only report that I
suffered through one episode last spring and that hadn't happened sinc
my early twenties (so long ago...).
Have they been able to analyze the stones and tell you what might be
happening? Are you taking in lots of calcium? Other than the stones
are you having any other kidney problems?
I hope you'll be spared from future "special deliveries"
Love,
Cheryl-Anne

Erin,
It is always so good to hear from you. Congratulations on all your
good news. Wow, house, growing family and your lovely daughter
Elizabeth growing up before our very eyes it seems!
Yes, your doctor does have a controversial view of things. Many
doctors have thought about stopping FISH all together. It would
force the absolute need for standardization of PCR testing. However,
I think there will always be different "camps" for everything. Those
who wish to embrace the challenging and new, with those who like to
take things on a steady easier route. We should all be lucky that
there are so many options for us all to chose from. I'm very happy
having my QPCR's done on a regular basis by the same tech's and
equipment. More than 17% of the "normal" population will test
positive for the BCR ABL transcripts, this tells me that there is so
much to learn from QPCR's however frustrating they are.
All this to say, I hope you can tell us how it goes for your doctor
in Italy. I hear it is quite a well attended meeting - the debate
will be interesting.
All the best to you,
Cheers and love,
Cheryl-Anne

Hello Everyone,
Recently my husband has noticed a number of small blisters on his hands. They
don't seem to be associated with any irritation to the skin in those areas and
they pop quite easily. When they pop they then form a small sore typical of any
blister that pops. His skin is quite fragile and he's had his share of rashes
from Gleevec but he's never had these little blisters before. They don't itch,
but they are rather annoying all the same. We were curious whether anyone else
has had something similar.
Also, a few weeks ago there was a discussion thread about blood clots and I had
mentioned that my husband had noticed something hard and string-like running
from his arm pit down the inside of his right arm. One doctor thought it was a
thrombosed vein. Well he got a sonogram and apparently he's got excellent blood
flow through all the veins in that arm. He never had any swelling or redness in
this area. The vascular surgeon doesn't think it's a blood clot but he thinks
that for some reason the vein got irritated and inflamed and it's hard as a
result. Jim takes aranesp for his anemia but none of the doctors involved in
this think that aranesp is the cause of this problem. They all think that it's
going to get better on its own, but he's had this now for about 4 or 5 months.
His arm is sore but other than that there's no problem with it. It is
disconcerting, though, not knowing exactly what the problem is or why it
happened. Has anyone else experienced anything like this or
have any ideas about what's going on? Thanks for your input.
Adrienne

Hi Cheryl-Anne,
I saw your question and will get back to you (and the list) with some
information in the next day or two. Also have the info from the talk by
the OHSU oncology pharmacist to organize. Right now the days are
perfect and I am outside a lot working on my yard. I will be seeing my
naturopath tomorrow and can firm up some information.
Nancy C.

Hi Erin -- So good to see your post! And I'm so pleased to read how
well you are doing with your busy life. Good for you! Elizabeth is
blessed to have you -- and I wish you all the best in your decision to
add to your family. I'll be looking forward to updates on family and
home. love, Kathy (dx 5/03)

Hi Erin,
You do have lots of exciting things going on. I always love the way you
describe your daughter....you can tell she is the light of your life....and
the next baby will be lucky to join your family. I have upgraded rental
houses (mostly the cosmetics) and it is a lot of fun....actually I like doing
the landscaping. Best wishes for all your ventures and your goals for the
next year.
Nancy C.

Hello friends,
Good to read up and hear from old friends. I have been out of touch a
while too, mostly because I have also put the CML on the backburner in
order to focus on the busy-ness of life (a wonderful luxury that I
don't take for granted). I am almost 4 years since being dx'd with my
then 3-month old Elizabeth in my arms. She just turned four last month
and has the most incredible imagination I have ever witnessed. I know
I have said this about every age, but this one is really the best!
This weekend we are off to Seattle where she will be the flower girl
in my cousin's wedding. I am sure I'll cry.
I am still PCRU (since 9/02). My Dr. still insists that being CCR (in
Zavie's Zero Club) is really all we need to worry about though. He
thinks that because PCR's so often bounce around, the tests cause more
worry than necessary. He is going to Italy to discuss this unpopular
point of view with the experts there. I wanted to mention that for
those of you who are concerned about the ups and downs of the PCR
tests.
I am still working from home in international sales and may eventually
have an opportunity to start my own business. That has been put on the
backburner too though, in the interest of maintaining a steady salary.
My husband and I bought a little old ugly (understatement) house on a
beautiful lot in a great school district. We are working with a
builder to gut it, revamp it, and add a second story to it. Should be
done in about 6 months. It is a very exciting project! We'll be
settled into it by the time Elizabeth starts kindergarten.
And..last but not least, our biggest news of all. We have made the
decision to pursue adoption to expand our family. We have always
wanted multiple children. A few weeks from now, we will have completed
our profile and home study and will be waiting for a birthmother to
choose us for her child. It will probably take a year or more, but you
never know! Incidentally, my oncologist wrote a very emphatic letter
about the state of my health - using stats on Gleevec, etc., making it
clear that he supports our belief that we are more than capable of
parenting again. That felt good to read!
So we have lots of exciting news that four years ago seemed
impossible. I miss being in constant touch with you all, and wish you
the very best of everything.
xoxo-
Erin in MI
dx'd Hodgkins 1994
Radiation treatment
dx'd CML 12/01
400mg Gleevec
CCR 05/02
PCRU since 09/02

This drug is mainly being tested for Breast cancer, but the NCI is now
opening up phase I DRUG ESCALATION trials for this drug for patients with
AML, CML and advanced Myelodysplastic syndromes. So, there's even more
hope.
Good reading!
Cheryl-Anne
Cytokinetics Provides Clinical Trials Update for Ispinesib (SB-715992)
-- Drug Candidate Demonstrates Sufficient Anti-Tumor Activity to Proceed in
Its Phase II Locally Advanced or Metastatic Breast Cancer Clinical Trial
-- Drug Candidate Does Not Demonstrate Sufficient Anti-Tumor Activity to
Proceed in the Platinum-Refractory Arm of Its Phase II Non-Small Cell Lung
Cancer Clinical Trial
<http://ad.doubleclick.net/jump/PharmaLive/catid40;sz=300x250;abr=!ie4;abr=!
ie5;ord=[timestamp]?
SOUTH SAN FRANCISCO, Calif.--(BUSINESS WIRE)--Sep 27, 2005--Cytokinetics,
Incorporated (Nasdaq: CYTK) announced the results from planned interim
analyses of two Phase II clinical trials of ispinesib administered as
monotherapy in the treatment of patients with locally advanced or metastatic
breast cancer and the treatment of patients with platinum-refractory
non-small cell lung cancer, both Phase II clinical trials being conducted by
its alliance partner, GlaxoSmithKline (GSK).
In the treatment of locally advanced or metastatic breast cancer patients,
ispinesib has demonstrated sufficient clinical activity to proceed to the
next stage of the Phase II clinical trial. In the platinum-refractory
treatment arm of the non-small cell lung cancer trial, ispinesib did not
demonstrate sufficient clinical activity to proceed to the next stage of the
Phase II clinical trial for this stratum. A second platinum-sensitive
patient treatment arm in that trial continues. Both clinical trials employ a
conventional Green-Dahlberg design which specifies that the advancement to
the second stage requires the satisfaction of pre-defined efficacy criteria.
These clinical trials are the first to reach the stage of interim data
analysis from a broad Phase II program of ispinesib that is designed to
determine potential anti-cancer activity and relevant clinical effect in
nine Phase II clinical trials encompassing multiple tumor types under the
sponsorship of GSK or the National Cancer Institute (NCI).
In an ongoing Phase II clinical trial designed to evaluate the safety and
efficacy of ispinesib in the second- or third-line treatment of patients
with locally advanced or metastatic breast cancer whose disease has recurred
or progressed despite treatment with anthracyclines and taxanes, the drug
candidate has satisfied the criteria for advancement to the next stage. This
clinical trial is now planned to proceed to full enrollment of 55 evaluable
patients. This clinical trial is designed to require a minimum of 3
confirmed partial or complete responses out of 30 evaluable patients to
proceed to stage 2. The trial's primary endpoint is response rate as
determined using RECIST criteria. The best overall responses observed to
date have been partial responses observed in 3 patients. All patients
enrolled to date in this clinical trial have had metastatic disease. Interim
results from this clinical trial have been accepted for presentation at the
28th San Antonio Breast Cancer Symposium to be held from December 7-10,
2005.
In a Phase II clinical trial designed to evaluate the safety and efficacy of
ispinesib in the second-line treatment of patients with either
platinum-sensitive or platinum-refractory non-small cell lung cancer, the
drug candidate has not satisfied the criteria for advancement to the next
stage in the platinum-refractory treatment arm. The platinum-sensitive
treatment arm continues to treat patients but has not yet reached the
interim analysis stage. This clinical trial is designed to require a minimum
of 1 confirmed partial or complete response out of 20 evaluable patients in
a treatment arm to proceed to stage 2 in that treatment arm. The trial's
primary endpoint is response rate as determined using RECIST criteria. The
best overall responses observed to date in the platinum-refractory treatment
arm of this clinical trial have been disease stabilization observed in 5 of
20 evaluable patients. Overall, median time to disease progression was 6
weeks; in the 5 patients whose best response was stable disease, median time
to progression was 12 weeks. The safety and pharmacokinetics of ispinesib in
the platinum-refractory arm of this clinical trial appear comparable to that
observed from its Phase I clinical trial at equivalent doses. Data from the
platinum-sensitive treatment arm of this clinical trial are expected to be
announced by the end of 2005.
"We are pleased to share the data recently emerging from our ongoing Phase
II clinical trials program with ispinesib," stated James Sabry, M.D., Ph.D.,
President and Chief Executive Officer. "Today's announcements are
encouraging as we have now observed measurable anti-cancer activity with
this mechanism in the second-line and third-line treatment of locally
advanced or metastatic breast cancer patients and the first evidence of
confirmed tumor shrinkage due to treatment of cancer patients with
ispinesib."
"We are now seeing evidence of potential clinical benefit of ispinesib
demonstrated in the form of tumor shrinkage in locally advanced or
metastatic breast cancer patients," said Dr Allen Oliff, Senior Vice
President of the Microbial, Musculoskeletal and Proliferative Diseases
Center for Excellence in Drug Discovery at GlaxoSmithKline. "We look forward
to further data arising out of our broad clinical trials program designed to
evaluate the full potential of this novel drug candidate."
Conference Call / Webcast
Cytokinetics will host a conference call on Tuesday, September 27, 2005 at
6:00 p.m. Eastern Time. The conference call will be simultaneously webcast
and will be accessible in the Investor Relations section of Cytokinetics'
website at www.cytokinetics.com. The live audio of the conference call will
also be accessible via telephone to investors, members of the news media and
the general public by dialing either (866) 999-CYTK (2985) (United States
and Canada) or (706) 679-3078 (International) and typing in the passcode
9953889. An archived replay of the webcast will be available via
Cytokinetics' website until October 4, 2005. The replay will also be
available via telephone by dialing (800) 642-1687 (United States and Canada)
or (706) 645-9291 (International) and typing in the passcode 9953889 from
September 27, 2005 at 7:00 p.m. Eastern Time until October 4, 2005.
Background on KSP Inhibitors
Since their introduction over 40 years ago, anti-mitotic drugs (taxanes and
vinca alkaloids) have advanced the treatment of cancer and are commonly used
for the treatment of several tumor types. However, these drugs have
demonstrated limited treatment benefit against certain cancers. In addition,
these drugs target tubulin, a cytoskeletal protein involved not only in
mitosis and cell proliferation, but also in other important cellular
functions. Inhibition of these other cellular functions produces
dose-limiting toxicities such as peripheral neuropathy, an impairment of the
peripheral nervous system. Neuropathies result when these drugs interfere
with the dynamics of microtubule filaments that are responsible for the
long-distance transport of important cellular components within nerve cells.
The strategic alliance between Cytokinetics and GSK has yielded two novel
drug candidates, ispinesib (SB-715992) and SB-743921. Ispinesib and
SB-743921 are structurally distinct small molecule compounds that modulate
cell proliferation and promote cancer cell death by specifically inhibiting
kinesin spindle protein (KSP). KSP is a mitotic kinesin that is essential
for cell proliferation, a process which when unregulated, results in tumor
growth. Mitotic kinesins are essential to mitosis, and, unlike tubulin,
appear to have no role in unrelated cellular functions. We believe that
drugs that inhibit KSP and other mitotic kinesins may represent the next
generation of anti-mitotic cancer drugs by arresting mitosis and cell
proliferation without impacting unrelated, normal cellular functions,
avoiding many of the toxicities commonly experienced by patients treated
with existing anti-mitotic drugs.
Clinical Trials Status for Ispinesib
Ispinesib is the subject of a broad clinical trials program under the
sponsorship of GSK and the NCI. GSK is conducting three Phase II clinical
trials, one evaluating ispinesib as second- or third-line treatment for
patients with locally advanced or metastatic breast cancer, one evaluating
ispinesib as second-line treatment for patients with platinum-sensitive
non-small cell lung cancer and one evaluating ispinesib as second-line
treatment for patients with advanced ovarian cancer. In addition, GSK is
continuing three dose-escalating Phase Ib clinical trials. Each of these
clinical trials is designed to evaluate the safety, tolerability, and
pharmacokinetics of ispinesib in combination with a leading anti-cancer
therapeutic, one in combination with carboplatin, the second in combination
with capecitabine, and the third in combination with docetaxel. The NCI, in
collaboration with GSK, continues patient enrollment in five additional
Phase II clinical trials evaluating the potential efficacy of ispinesib in
the second-line treatment of patients with colorectal cancer, in the
first-line treatment of patients with hepatocellular cancer, in the
first-line treatment of patients with melanoma, in the first-line or
second-line treatment of patients with head and neck cancers, and in the
second-line treatment of patients with hormone-refractory prostate cancer.
In addition, the NCI plans to initiate an additional Phase II clinical trial
to evaluate the potential efficacy of ispinesib as second-line treatment of
patients with renal cell cancer. The NCI also continues patient enrollment
in two additional Phase I clinical trials designed to evaluate the safety,
tolerability and pharmacokinetics of ispinesib on an alternative dosing
schedule. One clinical trial is enrolling patients with advanced solid
tumors that have failed to respond to all standard therapies and the other
clinical trial is enrolling patients with acute leukemia, chronic
myelogenous leukemia or advanced myelodysplastic syndromes.
About Cytokinetics
Cytokinetics is a leading biopharmaceutical company focused on the
discovery, development and commercialization of novel small molecule drugs
that specifically target the cytoskeleton. The cytoskeleton is a complex
biological infrastructure that plays a fundamental role within every human
cell. Cytokinetics' focus on the cytoskeleton enables it to develop novel
and potentially safer and more effective classes of drugs directed at
treatments for cancer, cardiovascular disease and other diseases.
Cytokinetics has developed a cell biology driven approach and proprietary
technologies to evaluate the function of many interacting proteins in the
complex environment of the intact human cell. Cytokinetics employs the
PUMA(TM) system and Cytometrix(TM) technologies to enable early
identification and automated prioritization of compounds that are highly
selective for their intended protein targets without other cellular effects,
and may therefore be less likely to give rise to clinical side effects.
Cytokinetics and GlaxoSmithKline have entered into a strategic alliance to
discover, develop and commercialize small molecule therapeutics targeting
human mitotic kinesins for applications in the treatment of cancer and other
diseases. GlaxoSmithKline is conducting Phase II and Phase Ib clinical
trials for ispinesib (SB-715992) and a Phase I clinical trial for SB-743921,
each a drug candidate that has emerged from the strategic alliance.
Cytokinetics' heart failure program is the second program to leverage the
company's expertise in cytoskeletal pharmacology. Cytokinetics recently
initiated a Phase I clinical trial with CK-1827452, a novel small molecule
cardiac myosin activator, for the treatment of heart failure. Additional
information about Cytokinetics can be obtained at www.cytokinetics.com.

Hey guys, I just wanna know if I am the only one on the list that has
had an abundance of kidney stones since starting Gleevec. I've
probably asked before but my Gleevec Memory fails me. I have been
named the "World Champ" of KIDney stones as I passed "5" this morning
at one time w/o the help of any physcian. I have always wanted kids,
but this is not quite what I had in mind. One of the "quints" was the
size of a black eyed pea, doesn't that just make you giddy, I've named
her Katrina, seems fitting. And those of you that love me, no shower
needed, I have all that taken care of <wink
have had this problem!
Thanks
Amy B.

Hey Group:
As nausea Queen, Compazine didn't work for me at all. I had to take my gold
(Gleevec) with the largest meal of the day; sandwiching it in my food as RRocker
suggested. When this didn't work, Zofran ODT, is the only medication that works
for my nausea and vomitting.
Take care. . . all are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hello Nancy C. and Everyone,
I warn you, this is going to be a long post.
Nancy, I wanted to write to the entire list as I thought this would be a
good thread for us to follow together. As I had previously posted, I am
having a hard time keeping my Hgb in the near normal range - I know it is
too much to hope that I can enjoy normal Hgb while on IM. Procrit (Eprex)
hasn't been much of a help. I also don't mind mentioning that I cycle, and
much like Richard stated, I too do not usually talk about this much as it is
something I would not accept responsibility for anyone else to try. In all
things we have to research ask the right questions then decide what is the
right thing for us to do. When I cycle off IM, of course my Hgb goes back
into the normal range. However, I had stopped cycling from last December to
June (2005) as my Doctor asked me to stop and to be part of a control group
for a study he is doing. This was the longest time since starting IM that I
stayed on the drug and by June, in spite of Eprex and oral iron pills, my
Hgb was down to 95. In June I took a break and enjoyed the re-bound of Hgb.
Within 10 days my Hgb went up to 105, which is quite interesting because I
do not think it should have recovered so quickly and my doctor was as
surprised as I was. I am PCRU and have been so for over 2 years and 3
actually if you count the PCRU from IFN.
The point of the post is that I have been researching supplements that might
help me keep a steady Hgb level either on or off of IM. I've read a lot
about Spirulina and actually just started taking it (with IM) over the
weekend. It is still too early to tell if there are any benefits, but I
will be keeping track of this and let you all know what happens. Nancy, I
appreciate and value your knowledge about alternative therapies that we can
try while on IM treatment. Can you please share with us any information you
have on Spirulina and I would be interested in knowing if you have discussed
this supplement with Dr. Druker. If I am not mistaken, Spirulina is also in
the "greens" supplement that you (and Christine) take each day.
Below is some of the information that I have been reading through about
Spirulina and I post it here in case anyone is interested.
Looking forward for input on this subject,
Cheers,
Cheryl-Anne
Anti-Cancer Effects
Several studies show Spirulina or its extracts can prevent or inhibit
cancers in humans and animals. Some common forms of cancer are thought to be
a result of damaged cell DNA running amok, causing uncontrolled cell growth.
Cellular biologists have defined a system of special enzymes called
Endonuclease which repair damaged DNA to keep cells alive and healthy. When
these enzymes are deactivated by radiation or toxins, errors in DNA go
unrepaired and, cancer may develop. In vitro studies suggest the unique
polysaccharides of Spirulina enhance cell nucleus enzyme activity and DNA
repair synthesis. This may be why several scientific studies, observing
human tobacco users and experimental cancers in animals, report high levels
of suppression of several important types of cancer. The subjects were fed
either whole Spirulina or treated with its water extracts 3,12,13.
Strengthens Immune System
Spirulina is a powerful tonic for the immune system. In scientific studies
of mice, hamsters, chickens, turkeys, cats and fish, Spirulina consistently
improves immune system function. Medical scientists find Spirulina not only
stimulates the immune system, it actually enhances the body's ability to
generate new blood cells.
Important parts of the immune system, the Bone Marrow Stem Cells,
Macrophages, T-cells and Natural Killer cells, exhibit enhanced activity.
The Spleen and Thymus glands show enhanced function. Scientists also observe
Spirulina causing macrophages to increase in number, become "activated" and
more effective at killing germs.
Feeding studies show that even small amounts of Spirulina build up both the
humoral and cellular arms of the immune system 16. Spirulina accelerates
production of the humoral system, (antibodies and cytokines), allowing it to
better protect against invading germs. The cellular immune system includes
T-cells, Macrophages, B-cells and the anti-cancer Natural Killer cells.
These cells circulate in the blood and are especially rich in body organs
like the liver, spleen, thymus, lymph nodes, adenoids, tonsils and bone
marrow. Spirulina up-regulates these key cells and organs, improving their
ability to function in spite of stresses from environmental toxins and
infectious agents 2,10,12,14,15,16.
Spirulina Phycocyanin Builds Blood
Spirulina has a dark blue-green color, because it is rich in a brilliant
blue polypeptide called Phycocyanin. Studies show that Phycocyanin affects
the stem cells found in bone marrow. Stem cells are "Grandmother" to both
the white blood cells that make up the cellular immune system and red blood
cells that oxygenate the body.
Chinese scientists document Phycocyanin stimulating hematopoiesis, (the
creation of blood), emulating the affect of the hormone erythropoetin,
(EPO). EPO is produced by healthy kidneys and regulates bone marrow stem
cell production of red blood cells. Chinese scientists claim Phycocyanin
also regulates production of white blood cells, even when bone marrow stem
cells are damaged by toxic chemicals or radiation 17.
Based on this effect, Spirulina is approved in Russia as a "medicine food"
for treating radiation sickness. The Children of Chernobyl suffer radiation
poisoning from eating food grown on radioactive soil. Their bone marrow is
damaged, rendering them immunodeficient. Radiation damaged bone marrow
cannot produce normal red or white blood cells. The children are anemic and
suffer from terrible allergic reactions. Children fed just five grams of
Spirulina in tablets each day make dramatic recoveries within six weeks.
Children not given Spirulina remain ill 6.
Other Potential Health Benefits
Spirulina is one of the most concentrated natural sources of nutrition
known. It contains all the essential amino acids, rich in chlorophyll,
beta-carotene and its co-factors, and other natural phytochemicals.
Spirulina is the only green food rich in GLA essential fatty acid. GLA
stimulates growth in some animals and makes skin and hair shiny and soft yet
more durable. GLA also acts as an anti-inflammatory, sometimes alleviating
symptoms of arthritic conditions.
Spirulina acts as a functional food, feeding beneficial intestinal flora,
especially Lactobacillus and Bifidus. Maintaining a healthy population of
these bacteria in the intestine reduces potential problems from
opportunistic pathogens like E. coli and Candida albicans. Studies show when
Spirulina is added to the diet, beneficial intestinal flora increase.
Conclusion
Based on this preliminary research, scientists hope the use of Spirulina and
its extracts may reduce or prevent cancers and viral diseases. Bacterial or
parasitic infections may be prevented or respond better to treatment and
wound healing may improve. Symptoms of anemia, poisoning and
immunodeficiency may be alleviated. Scientists in the USA, Japan, China,
Russia, India and other countries are studying this remarkable food to
unlock its potential. More research is needed to determine its usefulness
against AIDS and other killer diseases. However, it is already clear this
safe and natural food provides concentrated nutritional support for optimum
health and wellness.

She posted it earlier, it's aimesc31@...

I need to get in touch with our website owner. What is her email address,
please? Anyone?
Susan L

Johns Hopkins Geneticist Discovers Mutations in Cancer Cells That Suggest
New Forms of Treatment
BALTIMORE, Sept. 26 (AScribe Newswire) -- Researchers at Johns
Hopkins have identified three new genetic mutations in brain tumors, a
discovery that could pave the way for more effective cancer treatments. The
Hopkins team, in conjunction with researchers at the J. Craig Venter
Institute in Rockville, Md., discovered DNA abnormalities in two tyrosine
kinase proteins already known to disrupt normal cell activity and contribute
to tumor formation.
The discovery of these mutations is especially significant, the
researchers say, because tyrosine kinases can be targeted using
pharmaceuticals.
"We picked these proteins to sequence because receptor tyrosine
kinases sit on the cell surface where anticancer drugs can get at them,"
said Gregory J. Riggins, M.D., co-lead author of the study and an associate
professor in the Department of Neurosurgery at The Johns Hopkins University
School of Medicine.
In the study, the researchers identified two of the previously
unknown mutations in fibroblast growth receptor 1 (FGFR1) and one in
platelet derived growth factor receptor alpha (PDGFRA).
FGFR1 and PDGFRA, said Riggins, have been implicated in several other
cancers such as colorectal, breast and ovarian cancer, as well as chronic
myelogenous leukemia, gastrointestinal stromal tumors and lymphoma.
Riggins and colleagues analyzed a catalog of 518 protein kinase
sequences taken from the Human Genome Project. Using high-throughput gene
sequencing equipment based at the Venter Institute's Joint Technology
Center, they resequenced 20 targeted proteins from tissue samples of brain
tumor cells from Hopkins. The cells came from 19 glioblastoma tumors from
eight females and 11 males ranging in age from 7 to 77 years. Glioblastomas
are malignant tumors of the central nervous system usually found in the
cortex of the brain.
Researchers discovered the mutations after comparing the resequenced
genes with corresponding genes from the human genome sequence.
A previous study by Hopkins researchers, led by Victor Velculescu,
M.D., Ph.D., used high-throughput gene sequencing to identify 14 mutated
genes that have potential links to the growth of colon cancer cells,
according to Riggins. These discoveries suggest potential future therapies
that might use small molecules and antibodies to regulate the function of
the mutated genes.
The success of that study prompted researchers to take the same
approach to search for new drug targets for glioblastoma, a brain tumor for
which current therapies are weak.
According the Riggins, the recent advances in genomic information and
technology have set the stage for the assembling of a complete catalog of
molecular alterations that contribute to cancers. Genes involved in the
tyrosine kinase family will be important in these future studies because
they play a significant role in signaling between cancer cells and what's
around them. Combined with the remarkable clinical success doctors have had
with the molecular targeting of this family of genes, Riggins said, these
new findings could result in effective new treatments for cancer.
"The next step," he added, "is to find inhibitors of these mutations
and find out how we can reverse the effects of these mutations in the cancer
cell. Our hope is that we can target enough of these mutations to treat the
cancer."

aimesc31@...

Interesting article that reminds me that as time goes on and I am still here
and healthy I am mindful to be thankful for Gleevec...
Have a lovely Monday!
Cheers,
Cheryl-Anne
Targeted medicines are far off
September 26, 2005
Personalized medicines targeted according to a patient's genetic profile
have been over-hyped and their widespread use is still 15 to 20 years away,
leading scientists said last week.
The field, known as pharmacogenetics, has made strides in the battle against
certain cancers and shows great promise in improving efficacy, reducing
adverse reactions of drugs and limiting medical costs.
However, a report by the Royal Society, an independent academy of leading
scientists, said more research into the genetics of complex diseases, DNA
testing, international guidelines, and investment were needed before
targeted therapies would be widely available.
''Personalized medicines show promise but they have undoubtedly been
over-hyped," said David Weatherall, who chairs the working group that
produced the report.
''This is a long-term goal and it will take many years to come to fruition."
The sequencing of the human genome paved the way for scientists and drug
firms to match drugs and doses to particular patients and sparked
predictions it could occur quickly.
For some cancer patients, it already has.
Novartis's Gleevec for leukemia and Genentech's Herceptin for breast cancer
are so-called smart drugs that target molecular abnormalities or altered
genes that promote tumor growth.
''The cancer field has led the way in the most remarkable way," Weatherall
told a news conference.
A shortage of researchers, lack of knowledge about the genetics of diseases
and funding have hampered progress against other illnesses. The report
recommends introducing financial incentives at the national and European
level to encourage pharmaceutical companies to develop pharmacogenetic drugs
with smaller potential markets than blockbuster medicines.
The report said the onus would be on governments to fund or provide
incentives for carrying out tests on off-patent drugs.
Weatherall said it represented a major problem because the tests would need
to be done on a drug-by-drug basis.

Amy, what is your private email address, please?
Susan Loewenkamp

Nancy
Thank you for the suggestion. I used to get massages monthly and after
diagnosis, I just didn't. I may try it again, as I have a few friends who are in
the business. I will take this advice serious...
Thanks again.
Barb in AZ
Hi Barb,
I have a suggestion that might be helpful if it is not something that you
have tried. There is a special type of message (actually a couple
varieties) called lymphatic message. I did this maybe 6 months
ago.....because I was doing some heavy metal detoxification and wanted to
move the toxins more to get them out of my body. It was quite unusual
feeling......I was told that my lymphatic system was indeed sluggish. This
made me think that this might actually be where some of the fluid
retention/edema is with Gleevec. My lymphatics were especially sluggish
where I seemed to notice some IM swelling, like the insides my thighs just
above the knees. I really felt significantly different after the session.
Often my legs feel tight.....which I notice when I squat down....like very
tight pants,
only it is skin! and this helped.
This type of massage is done with folks who have lymphedema post
mastectomy, etc. If you want to try this, call an LMT and ask if they are
trained specifically to do lymphatic massage....or you might ask at a
breast cancer group, etc for a recommendation. Anyway, wanted to share this
info with you
as it might be helpful.
Nancy C.

Hi Glorie - I think I remember you, but not with this email address; didn't
you used to have a different one? In any case, glad to see your post and
know that you're doing relatively well a year out from transplant.
I'm afraid I'm not expert on the many and various complications
post-transplant, nor are many of us on the various CML lists. You'd
probably do better checking in at ACOR's "BMT-Talk," one of the oldest
cancer listservs in the country and still one of the best. They have a
wealth of knowledge there and I'm sure they'll be able to help you.
Best of luck to you.
Richard R

Hello Bill,
For reasons that are not well understood, two types of fibrous tissue,
collagen and reticulin, tend to build up in the bone marrow as CML
progresses, replacing normal blood forming cells. The amount of fibrosis is
graded from 0 to 4+, 4+ being complete replacement by fibrous tissue; hence
"2+ out of 4+" means that your marrow is about 1/2 way there.
Untreated, fibrosis can permanently harm the marrow as a blood producing
organ, but fortunately the process is reversed in most patients soon after
they start taking Gleevec (not so with Interferon, which is one of the
reasons Gleevec is preferred to this older drug).
Just out of interest, how long since your diagnosis? I believe it takes
about a year on Gleevec for the fibrosis to resolve in most folks. It's not
something we worry much about anymore.
Regards,
Richard R

I also should have added that it does not seem right that you do not
feel that you are getting good aftercare from this BMT center. I would
request a meeting with someone in charge, and maybe have other family
with you for support, and express your concerns....and ask just what
you can expect from them. You are barely one year post BMT and having
some problems.....many who have had a BMT are followed for several
years. Maybe there is a social worker there that you can talk to first
who can be an advocate for you. Good luck with this.
Nancy C.

Since the BMT topic has come up a couple times lately, I would suggest
joining the BMT list to anyone who is interested in finding out about
BMTs and BMT issues. There are a lot of very helpful and compassionate
people on that list. I will outline the steps for joining this list:
Go to this site-
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=bmt-talk&A=1
Type in your Email address and the name you would like to use in the
blanks provided
Click on what kind of mail you would like to receive - digest form
(summary), or regular (a copy of every post)
Leave the bottom two choices as they are
Go back to toward the top and click on the button that says "join the
list"
Shortly thereafter you will receive an email to which you must reply to
to confirm that you really want to join the list.
Hope this helps.
Barb Neddo
http://www.caringbridge.org/wi/tomneddo

In a message dated 9/25/2005 10:14:24 A.M. Eastern Daylight Time,
big_gee_64@... writes:
My hands are stiff and I cannot
move them in the mornings upon waking, nor can I fully open and
close my hands. Cramping arms, my white count is creeping up it is
now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3
times what they should be? I went for my 1 year post bmt check up
on thursday and got rushed out the door! I could SCREAM!!!
Dear Gloria, I have not had a transplant, but I can tell you that I have
cramping hands and feet in the mornings also. I keep Tonic Water next to my bed
at all times, since the quinine in it helps control this problem.
Also, my last WBC was 9,000 which is high for me, but it was up to 11,000
last year and I was still in remission! So, although you are on the high side,
don't get too scared. Of course, our situations are very different; I commend
you for having the transplant. That must have taken a lot of courage.
So, don't despair! Your HGB and Platelet count is great! - Lynne A.

In a message dated 9/24/2005 4:55:01 P.M. Eastern Daylight Time,
rrockef1@... writes:
find that I have to eat a little, then
take the drug, then eat a little more - pretty much sandwiching it inside
food inside my stomach - or else I get pretty nauseated. Maybe
Richard, sorry I did not put your name in the previous post's subject line.
That was meant for you.-Lynne

In a message dated 9/24/2005 4:55:01 P.M. Eastern Daylight Time,
rrockef1@... writes:
find that I have to eat a little, then
take the drug, then eat a little more - pretty much sandwiching it inside
food inside my stomach - or else I get pretty nauseated. Maybe
Richard, Hello! Long time no see! This "sandwiching" seems to be the
consensus with the group. I have tried it and it is working beautifully! See?
I
don't know what I'd do without all of you.
I am o.k., I think. I have been breaking with the IM off/on for months, and
hoping I'm still in MR. I don't know if you heard that while in BZ I lost my
remission, only to gain it back later with a higher dose.
Then I got pneumonia and a broken rib, so I spent my summer recuperating
from that. It is a trip! You know that, though.
We are going to the Fryeburg Fair next week (hopefully) and I also was
thinking of going to Canada, but I am not sure what we are doing, since my step
mom fell ill this weekend, and may have to postpone our plans. Have you ever
been to the Fair? All the time I lived in Maine I never ventured that far
West.
Thanks for the information....once again in your debt! - Lynne A.

I finally found everyone at this site! Don't know if you all
remember me? I had a bone marrow transplant this time last year on
September 30th, 2004. I've been doing really very well and just
encountered my first set back at the end of July and it's
continuing. Hope maybe someone can give me some feedback on this.
My oncs started tapering me off Prograf 0n May 18th. The taper
started out slow, I went from taking (2) 1 mg Prograf every day
since I'd gotten home from Transplant in October (so that's 8 months
on this dose) and was first tapered down to (1) 1 mg one day and
then (2) 1 mg the next. Alternating doses. This drop lasted for 13
days then when I went to clinic on May 31st, I was dropped again to
(1) mg everyday.
Looking back at my notes, I slipped on this...because I don't think
that 13 days was enough time for my body to regulate this lower dose.
I stayed on this dose for 49 days and then on July 20th, I was
tapered down again to (1) 1 mg every other day. I started getting
sick around July 23rd, 3 days later and was put on 1000 mg of ceftin
a day.
By August 3rd, my left ear was causing me problems, By August 5th at
midnight my lower abdomen and stomach had swollen so terribly that I
called the bmt clinic at Karmanos and went in that following Monday.
Well they ruled out venous occlusive disease. My liver panel is
great (bilirubin is 0.3, ALT (GPT) is 31, AST (GOT) is 42, creatine
is 0.8, and urea nitrogen (BUN) is 14. They did however find that
I'm spilling protein into my urine on a small scale. What concerns
me most is for the past month, I've been retaining 8-10 pounds of
fluid that only is relieved by aldactone (non potassium depleting
diuretic). I have fluid behind my eardrums which my ct scan now
shows opacity in the mastoid area. My hands are stiff and I cannot
move them in the mornings upon waking, nor can I fully open and
close my hands. Cramping arms, my white count is creeping up it is
now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3
times what they should be? I went for my 1 year post bmt check up
on thursday and got rushed out the door! I could SCREAM!!!
When I saw the chief of blood and stem cell at karmanos he asked me
who changed my doses of Prograf? Oh My God...He's asking me WHO?
Why the hell doesn't he know?...It's terrible to be this far out of
transplant and to feel this insecure. I feel like they are letting
me slip through the cracks here. By the way, although my wbc are
elevated, my rbc's are 4.26 and my hemoglobin is 13.2, platelets
are 331. Are elevated wbc's an indicator that somethings going in
reverse?
HELP!!!...Love Gloria

I posted the message below on another message board and I didnt not
get any feedback. I thought I might try here.
From reading the results of our first bone marrow reports I am curios
of what the Retuculin stain results mean.
If anyone understands what is meant by "Bone marrow demonstrates
slight to mderately increased reticulin fibrosis (2+ out of 4+), I
would appreciate knowing the if this is normal in most cml patients.
Thank you, Bill

Hi Jennifer,
There's no harm in splitting the dose, and it helps some people with the
nausea. It's easy to do with the old 100mg formulation, but a lot harder if
you're getting the 400mg tabs.
Best,
Richard R

Hi Jennifer - nice to see you back on the list. I've been something of a
slacker myself for quite a while. Well, not really; I'm just too busy with
other stuff and I also don't think about CML that much anymore. I'm not
naive enough to consider it over any done with, but I guess I've just gotten
used to it.
I'm sorry your DVT is still causing you trouble. Are you still taking
Coumadin, and if so, do you know how long you'll have to stay on?
Stimulated by your check in, here's a bit of follow up on myself.
Despite the problems you and a couple of others had after long breaks from
IM, I continue to cycle one month off and two months on. I've been doing
this for nearly 3 years now, though not always on that schedule. With the
exception of Tessa Holyoake, who thinks the approach is promising and who
has gotten phase I of her cycling trial underway, most of the CML docs I've
spoken to think this a dreadful idea, but I remain happy with it for now. My
qPCR fallen from 0.003 to 0.0002 to undetectable since I started, and
cycling has relieved my side effects a good deal. You'll recall that I was
hoarse due to IM-induced laryngeal edema for years. Well during my most
recent break starting in late July, this symptom went away and hasn't come
after more than 5 weeks back on IM. The hoarseness will probably return at
some point, but it's felt great to be able to sing again after croaking like
a frog for so long!
I'm also able to get out in the sun a bit while I'm off IM, which puts a bit
of color back in my skin, and hence some vitamin D into my system (now
there's this recent evidence that Vit D may be a good cancer-fighter - I
plan to track that literature). This feels good and makes me seem less like
a ghost all the time.
The loose stools have also been less of a problem, and my hematocrit
rebounds during the breaks so I have to use Procrit less often.
Perhaps most significantly, the Gleevec-brain is reduced much of the time as
well - though you also might argue that it's Gleevec-brain which is deluding
me into the cycling approach in the first place!
In telling about my experience with cycling, I want to reiterate that I'm
still not recommending it to anyone. It's based on assumptions which are
not shared by most researchers. These assumptions are 1) that since my
quiescent CML cells are not killed by continuous therapy, the sub-lethal
dose of IM that they're receiving might actually promote mutations; 2) that
every time I'm off the drug a few of the stem cells might wake up and cycle,
thus rendering them vulnerable to IM when I restart it; and 3) that approach
might defer or obviate any (as yet unknown) long-term adverse effects which
could be caused by continuous IM use, by giving my system time to recover
from time to time.
Who knows whether I'm right or not. I could be way off base and end up
getting resistant and accelerated disease. In that case I'll be really,
really sorry of course - but for now I'm happy with my approach.
Btw, I plan to switch to a heme/onc who's closer to home and who, though
skeptical of what I'm doing is also impressed by the amount of thought I've
given to this approach and interested to follow along. His lab has developed
a new PCR test that can sample for all the known BCR-ABL mutations at once.
If he can find any of my phillies (he believes his test to be much more
sensitive than most qPCRs in general use), he'll be able to tell whether any
of them have mutated. Of course even if he finds any mutations it won't be
possible to know whether these were caused by cycling, by IM itself (there's
some evidence that IM is actually mutagenic, as you probably know), by the
mutagenic effect of the quiescent cells' bcr-abl kinase, or whether the
mutations are just random events. Still, it will be interesting to know
whether they're there or not!
I realize that this has all been about CML, and not about what's going on in
the rest of my life, as yours was. I guess that will have to wait for
another post!
Cheers,
Richard R

Hi Lynne,
With some meds vomiting 45 after taking them (I assume that's what you mean)
might be a problem, but probably not with IM because it's so rapidly
absorbed. So unless you actually see bits of IM tabs, you're probably ok.
You say you take IM AFTER eating. I find that I have to eat a little, then
take the drug, then eat a little more - pretty much sandwiching it inside
food inside my stomach - or else I get pretty nauseated. Maybe give this a
try?
How are you otherwise? Haven't heard from you in a while (though I know you
haven't heard much from me either!).
Warm regards,
Richard R

Hi Barb,
I have a suggestion that might be helpful if it is not something that you
have tried. There is a special type of message (actually a couple
varieties) called lymphatic message. I did this maybe 6 months
ago.....because I was doing some heavy metal detoxification and wanted to
move the toxins more to get them out of my body. It was quite unusual
feeling......I was told that my lymphatic system was indeed sluggish. This
made me think that this might actually be where some of the fluid
retention/edema is with Gleevec. My lymphatics were especially sluggish
where I seemed to notice some IM swelling, like the insides my thighs just
above the knees. I really felt significantly different after the session.
Often my legs feel tight.....which I notice when I squat down....like very
tight pants,
only it is skin! and this helped.
This type of massage is done with folks who have lymphedema post
mastectomy, etc. If you want to try this, call an LMT and ask if they are
trained specifically to do lymphatic massage....or you might ask at a
breast cancer group, etc for a recommendation. Anyway, wanted to share this
info with you
as it might be helpful.
Nancy C.

Hello Jennifer G.
Good to see you post - I don't post much but I do read them all. I saw yours and
was anxious to see how you are. I also read with great interest, your tentative
plans to be in AZ in January. If you need a place to stay you are welcome I
want you to know. And if not, we could at least plan for a lunch again?
Grad school? My goodness. We in CMLand get ambitious don't we? I was in the
middle of a master program when diagnosed. I found the work to be the best thing
for my spirit. I hope you are finding great satisfaction in the study...
On your PCR- often times are they not a false positive or false negative? I
think it happens on occasion. I hope that is your case and you continue to be in
remission.
I remember our lunch and visit in Scottsdale. I remember thinking that you were
someone who was in charge of their own health and brave to do so. I also
remember wondering what would cause someone to want to take a gleevec break? I
would have been scared to do so. Well, most recently, I have developed
lymphedema and great water retention that causes a loss of mobility and great
pain. It has gone on for six months now and I went through a barrage of tests,
CAT scans and such that turned up a liver lesion and a 'vague nodularity' in my
right lung but nothing that would cause the water retention. Thus I am sure it
is Gleevec. My patience is just very thin at this point and my temper is close
to the surface. The constant pain really wears away my patience. I get so tired
of it I cry. I am visiting with my oncologist Oct. 3 to see what we might be
able to do... lasix just doesn't do it.
At any rate, I need to stop whining.
I wish you well and I would love to see you again.
Study hard. Rest well and be sure to take good care of yourself.
Peace
Barb
PS: Can't do the marathon I am sure, but am doing a 3 mile light the night
walk Oct. 15. I have 40 team members walking with me.... providing I can make -
-
Message: 2
Date: Wed, 21 Sep 2005 23:03:13 -0500
From: "jennifer g" <jenniferg@...
Subject: Quick Check In
Hi all,
I am sorry that I don't keep in better touch with my CML friends. I
don't remember there being a day yet that I forget about having CML, but
I guess I'm just putting it on the back burner right now.
I started graduate school part time after Labor Day, and it's turning
out to be a big challenge while also working full time. I'm probably
spending about 15 to 18 hours a week on studying and homework, which is
typical for taking 6 credits (estimate 3 hours of work per credit per
week). Biostatistics is a tough one! But I like having those "ah-ha"
moments where something actually crosses the Gleevec-brain barrier. I do
find that I have to re-read my texts a lot and take my practice tests a
lot to remember things, which only adds to the workload.
I recently adopted a shelter dog again. Some of you may remember that I
had to euthanize my last dog last summer at age 14 and a half. This new
one is part lab perhaps mixed with greyhound, as she's got very long
legs (making her very tall) and an enormously deep chest. She's 70
pounds and underweight. She's a sweetheart but needs some work on
housetraining and separation anxiety!
I also continue to work with Team In Training. I am scheduled to head to
Phoenix in January for the marathon/half-marathon, but I'm not sure I
can get the time off to do that. Are any of you going out there for the
races? If so, that may be incentive for me to go.
As for CML, I guess I am doing OK. My last PCR test was positive and the
FISH was ever so slightly positive. But they re-ran the PCR and it was
negative the next time. I don't understand that. Any thoughts? So we've
just decided to watch and wait for now, with another bone marrow likely
in December or January and some bloods in the meantime.
I am still having some trouble in my leg from the DVT (blood clot) I had
in late May. But my breathing problems have essentially gone away in the
wake of the clots to my lungs. I have a host of new side effects to
contend with thanks to the addition of warfarin (Coumadin) to the
medication mix. I am a naughty patient and totally disregard my warfarin
diet, which means I need to just get my blood checked more often and my
meds adjusted more frequently. But it's less stress for me. :-)

Hi Lynn,
When I went up to 800 I had a tough time keeping it down. I took two
or even one at a time with a little food for a couple of weeks until my
body adjusted. I'm fine most of the time now, but every so often I
have a day or two when my stomach rebels and I cut back to 200 at a
time. Hope you feel better.
Ellen

I have actually, and he was ok, last time we wrote about a week ago. He was
spending a lot of time with his children, and is still taking pictures. He
gave me some words of support, and is doing well with his treatment, but still
trying to get feeling 100%. Sorry, that's all I know. - Lynne

Has anyone ever gone through a period of days where they cannot keep Gleevec
in their stomachs? I am having a rough time and have tried taking Compazine
but even that is not effective. I have a doctor's appointment next week and I
will try to work it out with my new doctor (my former one has just left!!)
but was wondering if this is unusual. I eat a good sized meal, take my IM,
and then about 45 mins. later it leaves rather violently. But, am wondering if
it is in my system for at least a half an hour, am I getting any benefit
from it, or does it take a longer period of time?
Any help or info is appreciated. - Lynne A.

Hi Teresa,
Yes, patients can attend ASH. While I would certainly encourage anyone who
can attend to attend you should know that all the sessions are very
technical as this conference is really designed for doctors and scientist
involved in treating, researching or caring for patients. Most of the
sessions are presented rather quickly as the agenda is usually very tight.
This conference covers all disorders of the blood and not just specifically
CML. Even though I have over 15 years of experience covering medical
conferences and writing articles about them, I still find it difficult to
get all the information and I am so glad when there are people who can help
me.
Here is the website: http://www.hematology.org/
Keep me posted if you decide to attend so we can be sure to meet up.
Cheers,
Cheryl-Anne

Hello All,
On the subject thread of Myelosuppression, I should tell you that I have
been having a very difficult time with anemia. My Hgb hovers between 95 and
105 (normal values are 120-140) Procrit (or Eprex as it is known here in
Canada) hasn't helped nor has iron pills. I have gone through every test
imaginable and hopefully will have the final results next week. B12,
Folates, Ferritin, and TSH are all normal. A colonoscopy turned up negative
for intestinal bleeding. I had another bone marrow biopsy last Friday,
which will give us results on the iron stain as well as the usual
cytogenetics. Other than being more tired than usual, all is well. The
good news is that my peripheral Q-PCR done in August came back once again
PCRU. It is now just over 2 years of PCRU on Gleevec and a total of 3 years
PCRU in general if we take into account my days on IFN.
Hard to imagine that I will celebrate my 5th CML anniversary this fall -
where does time go?
Cheers to all,
Cheryl-Anne

Kay here, I Havn't posted in a while, havn't been feeling too
great. Just wanted to know if anyone has heard from Dane in a while?
Checking the messages I see he hasn't posted since Aug 17th. I really
appreciated his daily digital moments. They were always so uplifting.
I know he's been through a lot this year and hope he's doing ok.
Thanks
Eagledove (Kay)

Hey Jennifer,
Nice to hear from you. Sorry to read you are still having problems
with the DVT and clotting issues. It is quite amazing that in spite
of all this you still keep a busy routine going!. You are quite a
trouper!
Congratulations on the new addition to your family. It is always so
nice to hear that people rescued animals from shelters. My french
poodle, Napoleon Bonnaparte (well after all he is quite small and
dictatorial)was rescued from a horrible puppy mill just about nine
years ago. He means a great deal to me and has been a great source
of comfort on this CML journey. May you have many wonderful moments
with your new friend.
Sorry you're PCR is bouncing around a bit. Suzan McNamara had a bit
of a scare recently, but all additional tests including mutation
testing came back negative. As time goes by I hope we will find our
experience with PCR testing to be less frustrating. The problem is of
course that much like INR testing for the coumadin you are on, PCR
testing isn't standardized either. Additionally, I like to believe
that a majority of us are pushing the limites of detection with PCR.
I am looking forward to when the testing technology catches up to the
drugs!
Good luck with your studies.
Cheers and best wishes,
Cheryl-Anne

Cheryl, please keep me update with the conference as I would like to attend. Do
you know if Patients are allowed to register. Please e-mail me their web side.
Thanks.

Jennifer,
Welcome and I'm sorry but It could be a lot worse. As to your location, I have
family in St. Louis but I would say to check w/your provider list. It's going to
be trial by feel. I found, and I hope you don't, that a few doctors are not up
on the new protocols (simply because there new) and they don't read much due to
schedules (many patients, family, etc.,). This is still so very new to you and I
applaude you for coming to grips with it so suddenly (it took me some time to
get out of denial). I found that many doctors deal in gloom and doom so I had to
shop around to find a young energetic doctor that shared (or appeared to share)
my enthusisium. So, hang in there and keep checking even if someone suggests a
doctor in your area, he/she may be good for them but not for you.
Again, sorry for your diagnosis but you got it early and hopefully you can
eradicate it. I'm a firm believer that if it goes away, it 'won't' come back.
Key
jenniferabosse <jenniferabosse@...
Hello!
My name is Jennifer and I was diagnosed on May 2, 2005. I am currently
on 300 mg of Gleevec, hoping to get to 400 mg. I have not had a BMB
yet, and will have another FISH in early Nov. I have chatted with a
few of you from the group already....thanks for all of your input so
far. I am still learning all of the lingo and what everything means.
Just when I think I get it figured out, I learn something new.
Question though? Does anyone know any good dr.'s in the st. louis
area. This is where I live close to and am needing to find a new dr.
I don't know if my current dr. is up on all the current research and
have been doubting a little of what he is doing. Also, does anyone
know much about myelosupression? Supposedly, I have that. Anyway,
just wanted to introduce myself. Hope to get to know everyone better.
Jennifer
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Hi there!
So happy to get an update from you. You're really pushing it. No one would
believe you have CML PLUS blood clots. Other than enjoying the learning
experience, what are your goals in grad school? I know I may have to wait a few
months for an answer!
I'm waiting results of a BMB/FISH/PCR combo from the same marrow to see if I get
in to the BMS Phase III trial here at Georgetown University next week. The last
results of about two months ago were 3% FISH and 20% marrow (4 positive out of
20 cells). Definite slippage after being in CCR since 2002. PCRs really are
baffling. My PCR has remained at 2% positive (a smidge more) throughout.
I'm still job searching and working half time at an HIV/AIDS Clinic where I've
applied for a permanent job.
Make sure to take time to go out and buy all those winter storm clothes before
you need them!
Best wishes,
Susan L

Hello!
My name is Jennifer and I was diagnosed on May 2, 2005. I am currently
on 300 mg of Gleevec, hoping to get to 400 mg. I have not had a BMB
yet, and will have another FISH in early Nov. I have chatted with a
few of you from the group already....thanks for all of your input so
far. I am still learning all of the lingo and what everything means.
Just when I think I get it figured out, I learn something new.
Question though? Does anyone know any good dr.'s in the st. louis
area. This is where I live close to and am needing to find a new dr.
I don't know if my current dr. is up on all the current research and
have been doubting a little of what he is doing. Also, does anyone
know much about myelosupression? Supposedly, I have that. Anyway,
just wanted to introduce myself. Hope to get to know everyone better.
Jennifer

Hey Group:
Of the original names on the "0" list, only 3 names are familiar to me. Yes, It
would be nice to know how they are doing 4 years later.
Zavie, as you know. . . I am still "0". . . #811.
Take care, all are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Hi Mary Jean,
Gleevec definitely contributes to this. I take Coumadin (a blood thinner)
daily. When I first started using Gleevec, I had to reduce the amount of
Coumadin I took to achieve the INR (a test that measures the clotting time)
level needed in my case.
Zavie

Hi Jennifer,
I had to go take a nap after reading about your busy life! Good for
you. Glad you have a new pooch friend to keep you company -- the
greyhound part will be needed to keep up with you.
Sorry your leg is still troublesome & that you have more side effects
with the additional medication -- hopefully, the leg will continue to
improve and the side effects will subside some in time.
Good to hear from you!
love,
Kathy

Hi Jennifer,
Thanks for the update.....it is nice to know how our 'old friends and companion
warriors' are doing. Maybe others will also do a check in......including me
when I
get some more recent test results.
You are always a BUSY lady.....are you sure you have CML? You have more
things on your plate than anyone else I know. What have you decided to
study? are you doing this to enhance your field
of work in some way.....or change work directions?
Glad to hear that most of your clot issues are resolving........sorry about
the diet issues to deal with with the additional drug.
Take care..........and enjoy your new dog pal!
Nancy C.

Hi all,
I am sorry that I don't keep in better touch with my CML friends. I
don't remember there being a day yet that I forget about having CML, but
I guess I'm just putting it on the back burner right now.
I started graduate school part time after Labor Day, and it's turning
out to be a big challenge while also working full time. I'm probably
spending about 15 to 18 hours a week on studying and homework, which is
typical for taking 6 credits (estimate 3 hours of work per credit per
week). Biostatistics is a tough one! But I like having those "ah-ha"
moments where something actually crosses the Gleevec-brain barrier. I do
find that I have to re-read my texts a lot and take my practice tests a
lot to remember things, which only adds to the workload.
I recently adopted a shelter dog again. Some of you may remember that I
had to euthanize my last dog last summer at age 14 and a half. This new
one is part lab perhaps mixed with greyhound, as she's got very long
legs (making her very tall) and an enormously deep chest. She's 70
pounds and underweight. She's a sweetheart but needs some work on
housetraining and separation anxiety!
I also continue to work with Team In Training. I am scheduled to head to
Phoenix in January for the marathon/half-marathon, but I'm not sure I
can get the time off to do that. Are any of you going out there for the
races? If so, that may be incentive for me to go.
As for CML, I guess I am doing OK. My last PCR test was positive and the
FIS