Re: sudden partial blindness

2007-02-28 12:09:09

Tracy I actually have that all the time, or I used to. I have occular
migraines and that what causes mine. The first time was when I was 15,
out on a skating rink, and suddenly......NOTHING. It usually only
lasts about 15-30 mins then I get the headache. I actually haven't had
it in about 5 years though. I know this probably doesn't help since it
isn't related to the Gleevec. But maybe you had a headache and didn't
know it?
Amy <smile

sudden partial blindness

2007-02-28 11:27:08

I'm curious to know if anyone has ever experienced sudden partial
blindness in their visual field?
Out of no where, I became completely blind in part of my visual field
(about the size of an orange). It wasn't black, just nothing there.
It lasted about 30 mins then came back.
I had my eyes checked the next day and everything looked good so it
was suggested that maybe it was either a transient side effect of the
Gleevec (which I highly doubt and never heard of) or maybe a TIA.
Anyone experience something similliar?
Tracey

Thank you all

2007-02-28 08:50:22

Dear Rob, Barb Neddo, Penny M and all who pray for us,
Thank you so much for your encouraging words and prayerful thoughts. All of
your support means so much to me. Don't know where I would be without all of
you and the rest of the groups.
Visited Connie yesterday and she is saying her goodbyes to all her friends,
mostly by phone. Some of her longtime friends have come to visit and that bouys
her spirits. We're just praying for an easy path for her to God.
Bob's blood draw yesterday looked really good......HGB was 11!!!! Hasn't been
that high in forever! HCT 34.7, still low but so much better. And the platelets
were down to 545! WOW!! So things are looking good for surgery. I'm sure
he'll be just fine!
Thank you seems like such a lame thing to say, but I just have no words for the
way I feel about you all and the help you have been to me. Words are just
inadequate to express my feelings. If only some day we could all meet and have
one great big fantastic HUG!!!!!
blessed be love and hugs nancy w

Computer Problems

2007-02-27 19:38:26

Hi everyone,
I have been off line for the past couple of days due to communication
problems (I will change ISP if they don't resolve them). Not to worry. I am
just fine and enjoying the Dog Days of summer. I will get back to those whom
I owe emails to ASAP.
Chat will happen this evening at 9:00 PM. Plan is to use a friends computer
if mine is not up and running.
Zavie

Re: Trouble Galore

2007-02-27 16:41:11

Hi Amy -- I'm sorry to read of all the increased side effects that you
are having. Glad the stones were removed, though. I hope you are
more comfortable soon. love, Kathy

Trouble Galore

2007-02-27 14:44:53

I survived the Kidney stone removal! And thats the good news! I have
since had an increase in lower extremity edema that my diuretics won't
get rid of. I have such bad pain in my legs and feet I'm barely able
to walk. Not to mention nausea, dizziness, coughing. My legs feel
like they did when I first started Gleevec, but magnified 100%. Has
anyone cycled off the Gleevec and then back on with an increase in side
effects? I was off Gleevec for 5 days, due to nausea and the surgery,
but started right back as soon as I could. Ever since it has been
total misery! HELP!!!!!!!!!
Amy B.

Re: [cml 2] Digest Number 139

2007-02-27 07:28:04

Lynn,
Hi, I goofed. The book by Betty Crocker is Living with Cancer not Cooking
with Cancer as I had told you earlier. Sorry for the mix up.
Michael Herring

CML and losing weight-Any suggestions? Chris

2007-02-26 23:16:49

Hi Chris,
Yes, those snack foods called "Quakes" are good, but are full of
salt, and I'm trying to get off of the salt because of edema issues.
It's hard to do. I've always been a salty over sweets kind of girl!
I'm getting better at it. It's just hard to look at every label for
the sodium content. It's never been a problem until now.
Thanks, Lynn

Re: Bob W's update..........long

2007-02-26 12:56:57

Dear Nancy,
So sorry that all this has gone on in your lives. Good luck with the
heart surgery. I will keep your family in my prayers.
Warmest Regards,
Kristin

Healthcare Resources

2007-02-26 10:55:35

Hello!
Look at this healthcare information directory.
URL : http://www.hi-fiweb.com/users/anusha/
Cheers!
Amitha

Bob W's update..........long

2007-02-26 05:37:04

Hello dear friends,
Sorry I have been remiss in posting....too much happening in our lives.
Bob will be having open heart surgery on Thur 7/28, to replace the aortic heart
valve. I'm sure he'll be fine. Should be in the hospital for 5-6 days, I'm
told. His son and my two daughters will be there with us, so I am thankful for
that.
Bob is still having to have transfusions. He was in the hospital last week
overnight and was given 3 units of blood. His HGB was at 4.2 and HCT was 13.3!
The transfusions put him up to 10 and 33.1. The dr said this is being caused by
the meds he takes for the high platelets. Since they suppress the platelets,
they also suppress other blood making factors. He is currently on 8 mg
Anagrylide and 1000 mg Hydroxyurea. When he was at UCLA on 7/11, his platelets
were 1381, so that's when Dr Sawyers added the HU. He also had 2 units
transfused on 7/6, when he was hospitalized because of another small stroke. So
our hope is that once his heart is fixed and there is enough oxygen getting to
his brain these small strokes will cease. They last about 24-30 hrs, and he
cannot remember his name or mine and has difficulty walking, etc. Not really
full blown strokes, but all the symptoms are there. So that's where we are at
this point. All prayers welcome!! And we do know that they
help.
Another thing going on in our lives is his daughter, Connie, who has colon
cancer metastasized to the liver. We took her to UCLA and they admitted her for
10 days and tried everything to help her, but nothing could be done. The tumors
are too great in the liver, so they cannot do surgery or anything. She has a
drainage tube in her stomach and another one in the abdominal cavity, because
her liver is non functioning, and she is very swollen. She cannot eat anything
except liquids, ice and popcicles. She is home now (at her brother's) and is on
Hospice Care, which has been fantastic. Our daughter-in-law, Mary, has been
Connie's caregiver and I'm going to recommend her for saint hood. She has given
her all to take care of Connie. I'm kind of glad that Bob's mind is in the
condition it is because maybe it won't hurt so much when Connie is gone. She is
his little baby girl. I tell him everything that is going on but I'm not sure
how much is getting through.
So that's how it is with us. I will try to let you know how the surgery goes
when we get back home. It's taking place in Bakersfield, about 2 hrs from here,
so I'll be staying in a hotel near the hospital with no internet!
So congratulations to all who have had good news lately and hang in there to all
the others! I'm sorry that I don't have time to respond to all the emails that
I would like to.
blessed be love and hugs to all nancy w inyokern ca
temp 116 deg!!!
============================================================

Stem Cell Harvest Trial

2007-02-25 23:26:33

Trial Information
Summary: Peripheral Blood Stem Cell Mobilization and Storage in Patients
with Chronic Myelogenous Leukemia in Complete Cytogenetic Remission on
Imatinib.
This is a study to see the safety and feasibility of harvesting peripheral
blood stem cells from patients with CML in complete cytogenetic remission on
Imatinib. Peripheral blood stem cells in remission can be collected, frozen
and stored for future use for autologous transplantation, should the CML
become resistant to Imatinib, or show signs of acceleration. Imatinib will
be temporarily discontinued. Filgrastim (G-CSF) will be given to stimulate
stem cells, and an apheresis catheter inserted. Up to five days of pheresis
will be undertaken to get adequate numbers of stem cells. Percentage of
Philadelphia chromosome will be checked pre- and post-harvest. After
harvesting patients will resume Imatinib and return to the care of their
primary oncologist.
Study Criteria:
* CML in complete cytogenetic remission as measured by bone marrow
evaluation within 1 month.
* On Imatinib greater than 3 months.
* Age
* Adequate organ function for transplantation.
* HIV negative.
* Patients must either not be eligible or currently refusing allogeneic
stem cell transplantation.
* Marrow myelofibrosis < 3+.
For more information,
Contact:
Gwen L. Nichols, M.D., Principal Investigator
Columbia University Medical Center
650 W. 168th St., BB 20-08
New York, NY 10032
Telephone: 212-305-5705
Fax: 212-305-7348
Email: nichols@...
Profile Page: Columbia University Medical Center, New York, NY

Are you watching your lab reports?

2007-02-25 15:41:31

Dear Group,
I have had an experience that I would like to share with you all,
and suggest you begin to watch your lab work. I have been living
with CML since 5-5-02. I began gleevec 6-11-02 and reached PCRU 3-17-
02 and have maintained that remission since. You all know the
standard operating procedures of weekly, monthly and yearly testing.
I had BMB,FISH and PCRs done periodically. I currently see my
Oncologist every 12 weeks with a PCR two weeks prior to my
appointment. I used LabCorp for two years until I couldn't stand
the incompetence with their techs, labs and offices. That is a
story that would take too long and too much space to write about,
but I will tell you, I ended up reporting them to the Department of
Health for the State of Arizona as well as my insurance company,
LabCorp headquarters and the Medical Society. I do believe the
office I used has been investigated.
I now go to Sonora Quest and I am beginning to think there are NO
labs that are without incompetence.
July 5 I had blood work done. They drew 4 tubes. My standard order
is always for CBC with DIF/PLT; CMP; LDH; and at the bottom by the
Leukemia/Lymphoma panel, he writes PCR: BCR/ABL. When I got the
copies of the results, I saw the usual results for the basic blood
work and a FISH result instead of PCR, along with a HEPTIMAX test.
I had never had that one and wondered what it was for. Well, good
old Google revealed it was for Hepatitis C. There was no PCR. None
of these tests were available for my ONC when I visited him on the
12th. So they mailed me a copy that I received in the mail
yesterday. It was then I discovered that I had a FISH instead of
PCR, and the test for hepatitis. I called my doctor to ask why he
ordered the HEPTIMAX. Well, he didn't. His nurse is currently
checking into Sonora Quest to see what happened and why. I will
pursue it and see to it that my insurance does not pay for that
test.
My concern, is that we already struggle with our medical coverage,
co-pays and restrictions on our coverage. Having CML taxes our
benefits in a number of ways. Those of us lucky enough to have
insurance coverage already have large monthly bills for drugs ( My
gleevec costs my insurance $2700 a month and my two week attempt to
collect stem cells was $28,000)). I advocate for my insurance
company as well as myself and do not want them to pay for things I
did not have. ( Once when I was at City of Hope for stem cell
collection, my itemized bill had a $800 chemo treatment on it????
The code was one digit off of the actual test/procedure they did
for me). I am one of the lucky ones who does not have a 'cap' on
my insurance. Many of you do have a cap. If we don't watch what
is done and charged to our insurances, labs and doctors get free
reign on what they charge us for. In this case, I am furious that
they did not do the prescribed test for PCR and that they did a test
that was NOT ordered. I wonder how many people check these things
regularly?
Thanks for letting me vent.
Barb in AZ.

Re: [cml 2] Digest Number 136

2007-02-25 04:01:03

Lynn,
Hello. There is a great cookbook aout there by Betty Crocker. Its entiled
Cooking with Cancer and it has an entire section on healthy snacks. It's a
great book all around.
Look it up. You might be able to use the stuff.
Smile,
Michael Herring

Re: [cml 2] 6 month checkup at MDACC

2007-02-25 00:07:01

Congratulation Shari for your new blood test. What matter that you are
improving.
God Bless
Teresa T

6 month checkup at MDACC

2007-02-24 17:51:46

Hi everyone I just had my 6th month checkup at MDA. My appt was on
july 10, and yesterday Dr. Faderl called me and my pcr results were
back in one week. Last time my pcr was 0.09 and this time it was
0.06. He said he would like to see it below 0.05 and said I would
probably be there in 6 months. All of my bloodwork was good, I was a
little low on phosphorous but he said that it didn't matter. Will
have
a BMA at my next appt. in January. After my appt. we took a trip to
Galveston Island and stayed at Moody Gardens Hotel and Resort. We
had
a great time. We drove 12 hours back to Kansas in one day. I was
ready to get home I am somewhat of a homebody. I did have quite a
problem with water retention on the trip which I am getting used to.
It always happens when I travel. I have that problem at home too but
not as bad. I took 40mg of lasix daily. I spent alot of the evening
in
the bathroom. I hope everyone is doing well and getting great
results.
Shari from Kansas
dx feb 2003
gleevec 400mg
pcr 0.06

Disease Anonymous

2007-02-24 12:03:43

Disease Anonymous
This group saved my life.
Teleconferencing Callings to talk to other people battling diseases.
Call 1-714-678-2000
Access Code 32317
Tuesday 11 a.m. EST
Thursday 8 p.m. EST
Sunday 9:30 p.m. EST
Please feel free to share this number with others.
What is Disease Anonymous?
We help make the world healthy "one miracle at a time"
Disease Anonymous is a worldwide spiritual fellowship helping
chronically and terminally ill individuals back to health "one
miracle at a time".
Wholeness of body, spirit & soul is our goal. Study Pastor Henry
Wright's book "A More Excellent Way, God's Word, sharing personal
recovery experiences, loving and supporting each other
unconditionally are our methods. We embrace all individuals seaking
health.
Disease Anonymous is not a medical or psychiatric service, nor does
it provide personal or family counseling.

Enlarged White Cells and WBC

2007-02-24 10:38:47

Hi All,
Since the beginning of Gleevec treatment three years ago, my MCV has
been over 105. My MCH has been over 35. Both of these are incredibly
high. My Oncologist said this is typical of folks on Gleevec and
other
cheno medications. This has been my 'norm' and I have a copy of my
very first blood work three years ago. To speak to Luning on the
WBC,
my norm on Gleevec has always been 3.4-3.6 and never rose above those
counts. The last two blood work orders this past two months shows my
WBC to jumping to 6 and back to 4. These are well within the normal
range for someone without CML, but for me, it is high. I am not
worried about it as I suspect it is just my blood returning to
normal. I say this because the other blood counts were low ( anemia
and such) and they are returning to the norm once again.
Hope this helps.
Barb in AZ

WBC

2007-02-24 05:15:23

Dear Group,
I just cam back from my bi-weekly check. My onc has not got the results
of PCR that I did two weeks ago. At same time, my WBC jump from 3.7 to
6.2. My ANC jump from 1.6 to 3.0. He told me my count is good. I just
feel a little bit uncomportable to see my WBC jump so much. Do any of
you have similar situation before?
Love,
Luning

special report shows you how you can win the fight against cancer

2007-02-24 01:24:48

I am sharing with you this interesting report which I found very helpful.
DID YOU KNOW: Research shows that the immune system needs 9 1/2 hours of sleep
in total darkness to recharge completely -- the authors of the book Lights Out
explain.
http://www.cancer-prevention.net/?engine=adwords!800&keyword=%28cancer+treatment\
%29&match_type=content

FW: special report shows you how you can win the fight against cancer

2007-02-23 21:41:59

I am sorry I forget to sign my name
Teresa T
dxd 1/03

Re: [cml 2] enlarged red blood cells

2007-02-23 09:00:19

Hi Chris,
Do you keep old blood test results to compare with? good idea
if you don't.
I am on 800mg of IM.........and my RBC is suppressed........so I have
Gleevec induced anemia.
To compensate for this the red cells are larger....this is normal is this
situation. My MCV is almost always about 100-101...........vs 85-94 being the
normal range. Dr. D I think also said this happens if you were initially
treated
with hydrea. We were actually concerned when my dropped lower, but then it
came back up.
Look at your past results and see if this is something totally new?
Nancy C.

Re: [cml 2] Chat Tonight Using Pal Talk - Install and try it this evening

2007-02-23 02:59:46

I have a Mac. Can't install pal talk, but I rarely have a chance to
chat anyway.
Barb

$10 million award for OHSU from the NCI

2007-02-22 20:38:02

National Cancer Institute Approves $10 Million Award For Oregon Health &
Science Cancer Institute
PORTLAND, Oregon - A five-year, $10 million award recently approved by the
National Cancer Institute for the Oregon Health & Science University Cancer
Institute will result in broader access for Oregonians to the NCI's vast
national network of cancer expertise. The OHSU Cancer Institute is the first
and only cancer research and care center in Oregon to earn a place in the
prestigious NCI Cancer Centers Program.
"There is no reason for an Oregonian to leave the state to take advantage of
the most current cancer care," said Grover Bagby, Jr., M.D., director of the
OHSU Cancer Institute. "National and world leaders in cancer care and
research, and the clinical trials they lead, are available right here at the
OHSU Cancer Institute."
The NCI award is associated with the renewal of the university's membership
in the NCI Cancer Centers Program.
"The National Cancer Institute's cancer center program review process is
rigorous and thorough," said Peter Kohler, M.D., OHSU president. "Renewal of
this designation cements OHSU's role as a center of excellence for cancer
care and research in Oregon."
Membership in the NCI Cancer Centers Program means that OHSU patients get
cutting-edge cancer care. It is a national connection through which Oregon
patients benefit from the work of cancer experts throughout the country.
Also, clinical trials conducted by the OHSU Cancer Institute bring
life-saving techniques, drugs and treatments to Oregon patients. The
region's cancer patients have access to more than 200 open clinical trials
through the OHSU Cancer Institute.
The 60 institutions in NCI's Cancer Centers Program essentially are NCI's
research arm. OHSU and the other member institutions investigate the
potential causes of cancer and develop therapies aimed at ending cancer.
"Earning a place in the NCI cancer center program enhances our ability to
move the newest cancer science into patient care. No one else in the state
does that," said Craig Nichols, M.D., associate director for clinical
research in the OHSU Cancer Institute; and professor of medicine and head of
the Division of Hematology and Medical Oncology in the OHSU School of
Medicine.
Cancer is a complex array of different diseases, so the multidisciplinary
attention and treatment each OHSU patient receives is one unique feature of
care at the OHSU Cancer Institute. Its members are researchers and
physicians who are specialists in fields ranging from specific types of
cancer-such as leukemia, prostate cancer and pediatric cancers-to
epidemiology and bioinformatics.
The multidisciplinary approach also embraces the array of specialists
involved in treating cancer: radiologists, surgeons, anesthesiologists,
pathologists, nurses, nutritionists, statisticians and technicians, among
others. OHSU offers all of their services and expertise under one umbrella.
Bagby championed the creation of the OHSU Cancer Institute in the early
1990s to foster close collaboration between cancer researchers and
physicians in developing therapies. The OHSU Cancer Institute first received
NCI designation in 1997.
"The OHSU Cancer Institute was founded on the principle of developing less
toxic cancer treatments and new strategies for cancer prevention based on
the molecular causes of the disease," Bagby said. "The Institute assures
that the research evolves rapidly to benefit the patient and people at risk
for cancer."
Today, about 120 clinical researchers, population scientists and basic
scientists affiliated with the OHSU Cancer Institute are improving cancer
care by translating scientific understanding into better ways to prevent,
diagnose and treat the disease. Each year these researchers and scientists
attract about $50 million in competitive research grants to Oregon.
"If it weren't for the OHSU Cancer Institute, there would be no Gleevec,"
said Nichols, who also is well known for treating six-time Tour de France
winner Lance Armstrong for testicular cancer.
OHSU Cancer Institute researchers developed Gleevec, one of the most
celebrated advances in cancer medicine in a generation. In developing the
pill for chronic myelogenous leukemia, researchers used their knowledge of
the molecular defect at the heart of the disease to develop the first
anti-cancer therapy that targets only abnormal cells while leaving healthy
cells intact. Researchers then applied this model of molecular understanding
to another cancer, gastrointestinal stromal tumors, for which Gleevec also
proved effective.
"Through Gleevec, we have proved to the world that if you understand the
underlying molecular mechanism behind cancer, you can do something about
it," Bagby said. "Our goal now is to apply this model broadly across all
cancers and focus on the molecular defects common among malignant tumors and
molecular mechanisms that result in high risk for cancer. These molecular
principles will form the basis for new diagnostics, treatments, and
preventions so that our children and grandchildren can live without fear of
cancer."
To learn more about OHSU, visit their website at <http://www.ohsu.edu/
http://www.ohsu.edu/
OregonNewsOnLine offers 300+ news websites for cities and towns around
Oregon. Do you have a story you'd like to tell about your community? Try our
Citizen's Journalism feature. Signing up is free and the rest is easy. Here
is a list of over 300 communities with news websites, forums, free
classified ads which go to all websites around the state, event listings and
a Citizen's Journalism section:

Re: enlarged red blood cells

2007-02-22 17:12:10

Hi Christine,
Many people on Gleevec do have larger red cells. Do you know what
your RDW, MCV, MCH and MCHC were? For many of us these counts are
on the high side or slightly above the normal limits and there's
nothing to be concerned about. I guess what I would want to know in
your case is, how big is big?
Try not to worry (I know easier said than done),
Tracey

Accelerated clinical development plan for HHT

2007-02-22 08:11:45

Looks like they will be studying the effects of Ceflatonin against T315I -
interesting...
ChemGenex Announces Strategy for Registration-Directed Clinical Trials for
Ceflatonin(R)
ChemGenex Pharmaceuticals Limited (ASX:CXS) (NASDAQ:CXSP), based in
Melbourne, Australia and Menlo Park, Ca, USA, today announced its
accelerated clinical development plan for its lead anti-cancer therapeutic,
Ceflatonin(R) (homoharringtonine, HHT).
The initiation of the first of two registration-directed Phase 2/3 trials is
scheduled for the third quarter of 2005. The first trial will target chronic
myeloid leukemia (CML) accelerated phase patients who are resistant to
high-dose Gleevec(R). The single agent Phase 2/3 trial will initially be
conducted in six leading European cancer centers, and is expected to expand
to incorporate cancer centers in the U.S. in Q1, 2006. The trial
incorporates the benefits of the company's recent in-licensing agreement
with Stragen Pharma and builds on growing clinical evidence that
Ceflatonin(R) has significant potential as a treatment for CML patients who
are resistant to Gleevec(R) and other experimental bcr-abl kinase
inhibitors. It is anticipated that the enrollment in this trial of up to 85
patients will be completed in Q4, 2006.
A second single agent Phase 2/3 clinical trial with Ceflatonin(R) to treat
CML patients with a specific gene mutation that makes them resistant to
tyrosine kinase inhibitors such as Gleevec(R) (the T315I bcr-abl mutation)
is planned to commence in the U.S. and Europe in Q1, 2006, and will recruit
up to 85 patients. This study will be initiated based on evidence from
recent Phase 1/2 studies that HHT has activity in CML patients who have
developed bcr-abl point mutations associated with tyrosine kinase inhibitor
resistance.
ChemGenex has ongoing Phase 2 clinical trials under its U.S. IND at the M.D.
Anderson Cancer Center in Houston, Texas (Ceflatonin(R) in combination with
Gleevec(R) in CML and Ceflatonin(R) as a single agent in myelodysplastic
syndrome (MDS)).
"This is a major advance in our clinical development of Ceflatonin(R)," said
Dr. Greg Collier, chief executive officer and managing director of ChemGenex
Pharmaceuticals. "The new trial designs offer considerable advantages; we
have developed protocols for the sub-cutaneous, rather than intravenous
dosing of patients and we have new data demonstrating synergy when used
in-combination with Gleevec(R). As the number of CML patients developing
bcr-abl point mutations associated with resistance to tyrosine kinase
inhibitors such as Gleevec(R) increases, there will be considerable need for
treatments such as Ceflatonin(R) that combat the disease via a different
mechanism."
ChemGenex has updated its company overview presentation to include the new
clinical strategy for Ceflatonin(R). The presentation can be accessed from
the company's home page (www.chemgenex.com).
About ChemGenex Pharmaceuticals Limited (www.chemgenex.com)
ChemGenex Pharmaceuticals is a gene-based pharmaceutical company dedicated
to improving the lives of patients by developing therapeutics in the areas
of oncology, diabetes, obesity, and depression. ChemGenex currently has two
compounds in Phase 2 clinical trials, Ceflatonin(R) for leukemia and
Quinamed(R) for solid tumors, and has a significant portfolio of
anti-cancer, diabetes, obesity and depression programs. The company's
diabetes and obesity program is partnered with Merck KGaA and the depression
program is partnered with Vernalis plc. ChemGenex currently trades on the
Australian Stock Exchange under the symbol "CXS" and the NASDAQ exchange
under the symbol "CXSP."
Safe Harbor Statement
Certain statements made herein that use the words "estimate," "project,"
"intend," "expect," "believe," and similar expressions are intended to
identify forward-looking statements within the meaning of the US Private
Securities Litigation Reform Act of 1995. These forward-looking statements
involve known and unknown risks and uncertainties which could cause the
actual results, performance or achievements of the company to be materially
different from those which may be expressed or implied by such statements,
including, among others, risks or uncertainties associated with the
development of the company's technology, the ability to successfully market
products in the clinical pipeline, the ability to advance promising
therapeutics through clinical trials, the ability to establish our fully
integrated technologies, the ability to enter into additional collaborations
and strategic alliances and expand current collaborations and obtain
milestone payments, the suitability of internally discovered genes for drug
development, the ability of the company to meet its financial requirements,
the ability of the company to protect its proprietary technology, potential
limitations on the company's technology, the market for the company's
products, government regulation in Australia and the United States, changes
in tax and other laws, changes in competition and the loss of key personnel.
These statements are based on our management's current expectations and are
subject to a number of uncertainties that could change the results described
in the forward-looking statements. Investors should be aware that there are
no assurances that results will not differ from those projected.

enlarged red blood cells

2007-02-22 04:03:48

Hi everyone --
I was just in for my three-month check on the fish test and am still fish
negative. There was a change, however, in my red blood cells -- apparently they
are enlarged. They have taken a thyroid test and will be doing an abdominal
ultrasound on Thurs. Was wondering if anyone else has had anything like this.
The question they are rolling around in their heads is whether or not I may have
another myeloproliferative disease in addition to the cml.
I am quite concerned, altho, they did say it could just be bounce back from an
earlier bout of anemia, or perhaps caused by the gleevec. I am still worrying,
tho.
any thoughts on any of this? anyone??
thanks
chris in minn

Re: CML and losing weight-Any suggestions?

2007-02-21 18:22:59

Hi Lynn,
Like Shelley, I have joined Weight Watchers and find their "Core"
plan to be a good one. I don't eat processed foods, avoid sugar &
other "white" carbs, drink lots of water, eat yogurt (unsweetened)
each day, lots of veggies, fruits, tofu, whole wheat pasta, sweet
potatoes, lean meat occasionally, fish, chicken, etc. I also joined
Curves & I walk most days. The exercise really helps with the
fatigue. I'm down over 20 lbs and about 18+ inches at last
measure. I, too, was overweight at diagnosis and the gleevec and/or
stress eating caused me to gain more weight. I'm not setting any
records with the weight loss, but it is coming off -- and I feel
better physically & mentally.
I've also started taking Acid Defense as recommended by Nancy C. and
find it helps with cravings as it helps to create a more pH balanced
system. It's a powder that I mix with water & then chug down.
Avoiding sugar which drains my energy and excercising which helps my
energy level -- and trying to keep my system more alkaline/pH
balanced -- these are what help me most. I also remind myself that
if losing weight were easy, we'd all be thin. It isn't easy & I hug
myself every now and then for just trying.
Take good care & good luck.
peace,
Kathy
dx 5/03

the resistance to gliveec susan zavie nancy

2007-02-21 16:02:57

<DIV
<DIV
testes cbc were high .i toke 400 mg glivec every day
my dr decisioned to add glivec as 600 mg every day dr
salsi told me that frist i take 500 mg glivec every
day and take a test cbc every day after 4 week he dose
not tell me to add glivec to 600 mg and i taked 500 mg
glivec for 3 weekes last friday a hemotologist cam to
oure hospital i visited he and he told me that i must
take glivec 600 mg very soon and that days i take 600
mg glivec you knoe since 3 weekes my test cbc was not
fixed a week high a week low.right now they afaird
that my boday resistence to glivec and never glivec
help me and perhaps i have to chang drug and finsh
glivec.they are not sure that is a resistence to
glivec hencey they want to add glivec to 800 mg glivec
in this month now i take 600 mg glivec and i will have
a test cbc next week saturday and then add glivec to
700 mg then to 800 mg my last test cbc was</DIV
<DIV
<DIV
<DIV
a big center care medical of cancer and they are good
dr and i want to counsel with that dr i have hope to
god alot i fighter with cancer.</DIV
<DIV

CML and losing weight-Any suggestions?

2007-02-21 09:30:17

Hi everyone,
I wanted to post this question to see if any CML'ers taking Gleevec
have had good success losing a good amount of weight.
I've been on Gleevec for 1 1/2 years, and have put on 40 lbs. I'm on
400 mg Gleevec and Lasix for edema issues. I'm eating a lower salt
diet, but still struggle with fatigue issues that get in the way of
my exercise.
I had weight to lose before getting dx'd, but now, it's just that
much harder. I have 60 lbs to lose total. I know that maybe once
the weight starts coming off, the fatigue may improve.
So, I was just wondering if any Gleevec fatties have had success or
suggestions that helped.
I want to get myself back into peak condition. I realize that this
won't happen overnight, but I can keep trying!
Thanks!
Lynn (Snickersunny)
PCRU- 400 mg

Re: [cml 2] CML and losing weight-Any suggestions?

2007-02-21 05:01:34

Lynn,
I have been on Weight Watchers since the end of December and have lost 30
pounds. I also have NO diarrhea when I stick to the good eating habits that
they offer. I do feel less tired, and I am on 600mg.
Shelley
Lynn <petenlynn@...
Hi everyone,
I wanted to post this question to see if any CML'ers taking Gleevec
have had good success losing a good amount of weight.
I've been on Gleevec for 1 1/2 years, and have put on 40 lbs. I'm on
400 mg Gleevec and Lasix for edema issues. I'm eating a lower salt
diet, but still struggle with fatigue issues that get in the way of
my exercise.
I had weight to lose before getting dx'd, but now, it's just that
much harder. I have 60 lbs to lose total. I know that maybe once
the weight starts coming off, the fatigue may improve.
So, I was just wondering if any Gleevec fatties have had success or
suggestions that helped.
I want to get myself back into peak condition. I realize that this
won't happen overnight, but I can keep trying!
Thanks!
Lynn (Snickersunny)
PCRU- 400 mg

Re: Suzan &amp; Jennifer,

2007-02-20 20:25:01

Linda!
So nice to hear from you and so happy that you've been able to
achieve PCRU on 300mg. I remember you always had difficulty with the
rash, sorry to hear that its still around.
I've been at 400mg for 5 yrs and my PCR results have been hovering at
3 log for the longest time then suddenly jumped up 1 log in 3
months. Due to the sudden increase, a mutation analysis was
performed, its just part of the protocol. Of course this sent me into
a frenzy, although I felt positive you just never know what life has
in store for you. Thankfully the results came back negative. My
doctor and I still felt it was time to up my dose to try to achieve
PCRU (4 log reduction).
I've been at 800mg for a week now, the first few days I felt fine
but in the last few days I've felt a bit of nausea and bloating. I
think I just may have to adjust my lifestyle and eating habits a bit.
Great hearing from you and all the best.
Suzan

Suzan &amp; Jennifer,

2007-02-20 15:54:50

So good to see a post from you two. I don't post much anymore, but am
still out here. I am doing well for the most part and am still PCRU
on a lower dose than most. Dr. Sawyers has me on 300 mg. of gleevec
and says I respond to the 300 mg. like most respond to 600mg. I still
have fatigue, the rash, fluid retention, cramping, & a few other side
effects that pop up. Most of the side effects don't affect me at the
same time, altho' the fluid retention, rash and fatigue are with me
most of the time. I ignore them as much as possible and enjoy life at
a leisurely pace.
My best to everyone.
Hugs from Wyoming,
Linda Bartlett
diag. Oct. 97
Gleevec beginning Aug. 99, Phase one trial, 600 mg.
now PCRU on 300 mg.

Re: [cml 2] my test result BMB

2007-02-20 05:28:24

Hello Hassan,
Some of your description is unfamiliar to me. I dont know what you mean by 2
cell lines. Do you know how many cells they counted and how many were positive
for the Philadelphia Chromosome? Did they say you may be in an acute stage?
One thing you can do on your own before your dr makes a decision about a new
treatment is to start taking 800 mg glivec everyday. There's a huge diffference
between 600 mg and 800 mg.
Best wishes,
Susan L

BMT and Social Security Benefits.

2007-02-20 01:39:49

My wife and I heard that once you have a BMT, you almost automatically
qualify for disabled status Social Security benefits. We went to the Social
Security office and filed, just to see what would happen. Sure enough, I
qualified for myself and both my children. We got three checks for me and
my kids with retro benefits back to my diagnosis in 2000 (a substantial sum)
along with three monthly checks going forward. Just an FYI for the
transplant recipients out there.
Personal note: Doing OK...June tests identical to May tests: 80% donor
cells and 1.0 BCR-ABL by blood pcr. I was discouraged by this, but the oncs
say that not getting worse is a very good thing at this stage, so I am going
with that. Next test July 21st, blood PCR only.
Dane

my test result BMB

2007-02-19 22:52:24

hi to all
i am hassan from abadan city in iran .i since glivec from 1999 and take glivec
600 mgl every day
this is my frist test bmb after tak glivec.
this is report of test bmb:two cell lines were obeserved both with abnormal
karyotype.a tranclocation between chromsome 9 and 22 indicating philadelphia
chromosome was seen in both cell lines.however one of the cell lines in addition
to that philadelphia chromosome had another derivative 22.philadelphia chromsome
is acytogenetic eveidence fore cml diagnosis.
the presence of the seconed derrive chromosome 22 may also be a sign of acute
transformation.
so that was my bmb but in pass week and this week my test cbc is not good and is
not fixed mydr is sad and worry they told me i must becarfully and perhaps they
want to chang my treatment now i take 600 mgl glivec every day
i must weating and pray to only god

TIME FOR A LOUGH.

2007-02-19 13:20:47

hallo friends
after the unpleasent exprience 2 days ago its time to have fun. i usually dont
post funny emails so i appologize this time.i want to thank all my friends who
emailed me on and off the list.
the picture enclosed shows the result of a great invention by the ministery of
transportation in the usa who has devoted a lot of time and money to find a
solution to reduce car accidents. we will have to wait and see.....
shalom and enjoy
giora

Re: Onconova

2007-02-19 11:30:31

Hi Susan -- Thanks for the post. It's always good to know about new
drugs coming along. Helps keep my optimism in good form. Take
care. Kathy, dx 5/03

Re: [cml 2] Surgery Tomorrow 7-14

2007-02-18 23:42:14

Good Luck Amy.
Teresa T

Re: Surgery Tomorrow 7-14

2007-02-18 20:58:12

-
Well Amy, I hope you come through this easily. Please let us know ASAP
after the surgery, MJHodor

Surgery Tomorrow 7-14

2007-02-18 20:51:15

Hey everyone, It seems as though my Kidney stones decided to make
things hard and come back for the summer. Since I am not currently
listed as a summer resort, I have decided to have the enterlopers
removed. Much to my dismay the dreaded kidney stones have decided to
disregard the eviction notice and buckle down. So tomorrow I go in for
demolition and removal. I'm a bit nervous, as anesthesia and I are not
on good terms either. Gleevec and I have parted ways until after the
removal due to increased nausea and vomiting, let me tell you the
Kidney Stone Family is defintely not of the friendly lot. If I have it
my way, they will have no more family reunions at my place. Wish me
luck
Amy B.

Onconova

2007-02-18 05:30:59

Last night I had the pleasure of attending a presentation by Dr. John Goldman, a
British CML specialist now doing a year of CML research at NIH. The talk was
sponsored by the Leukemia and Lymphoma Society.
The presentation was a general history of the discovery of bcr abl and therapies
through the years with very interesting specifics charted out including the way
the disease progresses and the various drugs and how they control it and to what
degree they work.
At the end of his talk Dr. Goldman said that IM, AMN 107 and BMS are the hot new
drugs now but that there's a new one coming up that is of great interest -- ON
012380 by a company called Onconova in Delaware. Perhaps someone has written
about it before but I don't read every post. Anyway, you can read about it on
their website: www.onconova.com. It's active against the mutation T351i and
uses peptides produced by leukemia cells but that are not part of the leukemia
itself.
Susan L

Re: muscle cramps

2007-02-17 23:38:01

Hi Shelley,
I often suffer from leg cramps, mostly in the middle of the night. I
noticed that when I'm dehydrated I cramp up more. Maybe try
increasing your water intake, especially at night before bed. I tried
the calcium with D and other vitamins and only felt relief when I
started drinking more water.
Suzan

RE: [cml 2] muscle cramps

2007-02-17 21:10:57

Hi,
(I'm back!)
Shelley, I still get severe muscle cramps from Gleevec. Often now in my
lower legs, and they also wake me up at night in agony. At times I've
been ready to go to the ER, they're so bad, and nothing seems to help.
Supplements didn't help me, and my heme said he believes they're
ineffective for the most part. Finally he recommended a low dose of
Tegretol.
He said in low doses there are few side effects and that it's effective
at preventing cramps. And that has worked for me. I don't like adding
another medication to my mix, but I was literally desperate. If nothing
else is working for you, I recommend trying that. Oh, another thing I'd
tried was wearing those Therma-Care heat pads wrapped around my legs at
night. But that was too awkward and didn't seem that effective.
After taking several doses of the Tegretol, I haven't had any severe
cramps and have been able to cut back on the dosage already. This is the
first time in a long, long time that I haven't experienced these severe
cramps.
Best of luck.
I will have an update later but need to get to work right now. Thanks to
those of you inquiring about my whereabouts!
Jennifer G.

muscle cramps

2007-02-17 20:54:39

Help! I have been experiencing an increase of muscle cramps the past few weeks.
I take 1200mg of calcium with D every morning along with a Centrum Silver that
has 200mg of Calcium.The muscle cramping has been so bad for the past few weeks,
waking me up at night and lasting for hours. Every time I walk them off, the
second that I move my legs or toes the slightest, it starts again. This is
becoming more than just annoying.
Shelley

Re: [cml 2] pure luck

2007-02-17 09:05:56

Giora,
I am so glad that you and your family are safe. It is still amazing to me that
after all these years, there still is no peace in the Middle East. I was there
in 1969 for three months, and we had scares then.
Shalom my friend.
Shelley

Re: Lowering Cholestrol

2007-02-17 01:06:46

Teresa,
I was in the process of trying this product just before my CML
diagnosis. My family medicine doctor was taking it for weight loss and
high cholesterol. Unfortunately, I took about 3 days worth - then my
focus changed to my CML, so I didn't have time to follow up on it.
Of course, the interferon lowered everything for me, so I haven't had
to worry about the cholesterol until this year.
My doctor did NOT want me to take Lipitor, (not sure why) so I'm now
taking Zetia (for high triglycerides and cholesterol).
Hope this helps, Gale Bacon

Re: pure luck

2007-02-17 00:06:24

Hello Giora,
I am so glad that you and your family are OK. What a frightening
experience! God is looking after you. I will pray for you and your
family. May you find peace amidst all that is happening.
Shalom,
Gale Bacon

Drug Plan May Hurt Some It's Meant to Help

2007-02-16 19:52:31

Drug Plan May Hurt Some It's Meant to Help
By Ricardo Alonso-Zaldivar
WASHINGTON Although she was partially paralyzed in a car crash 22
years ago, suffers from lung disease and has only a meager income,
64-year-old Margaret Dowling is able to live independently in her own
home, thanks to a motorized wheelchair and nine prescription drugs
that she takes every day.
But now, Dowling fears that her hard-won independence may be in danger
not from the ravages of injury or disease, but from an effort by the
federal government to improve healthcare for older Americans while
putting the brakes on rising costs.
Dowling is not alone. About 6 million people with severe medical
problems and low incomes face similar threats from the same source.
Nobody wants it to happen, but so far at least, no one has come up
with a solution.
And Dowling's plight is an early sign of an even larger problem: The
healthcare needs of the disabled, the elderly and the poor are complex
and the systems serving them huge 90 million people, $600 billion in
annual expenditures.
As Washington struggles to maintain the programs while dealing with
seemingly unsustainable cost increases, the law of unintended
consequences is likely to strike again and again.
Dowling and others like her fall into a netherworld where Medicare and
Medicaid overlap. They are what the government calls "dual eligibles"
and, because of their financial situation, receive benefits under both
programs drug coverage from Medicaid, which primarily serves the
poor, and hospital and doctors' care from Medicare, which primarily
serves the elderly.
In January, for the first time, Medicare will offer a drug plan that
is to operate quite differently from Medicaid's system, which provides
comprehensive, virtually cost-free prescription coverage. Medicare's
plan will rest on competition among private insurance companies and,
hoping to save money and streamline the system, Washington has decided
that patients such as Dowling will automatically be switched to the
Medicare drug system.
The new program was not created with people like Dowling in mind, however.
The private plans that patients will be required to use under Medicare
will emphasize reliance on generic drugs and other measures designed
to cut costs. Medicaid gave doctors virtually free rein when it came
to choosing drugs.
Advocacy groups and experts say that after the switch to private
plans, there's no guarantee that Dowling and other "dual eligibles"
will be able to keep exactly the same combinations of drugs they now
receive under Medicaid. That could upset the delicate balance among
the drugs upon which Dowling and others depend.
"My biggest concern is making sure that people with specialized
medical problems are not shortchanged," said Sen. Gordon H. Smith
(R-Ore.), a supporter of the new drug benefit. "It's really the most
vulnerable population we have."
No part of the country faces a more challenging transition to the new
coverage than California, with nearly 1 million dual-eligible Medicaid
beneficiaries, more than any other state. Medicaid, a federal-state
partnership, is called Medi-Cal in California.
Even California's ethnic diversity could become an obstacle in the
switch. Just communicating will be difficult since Medi-Cal
beneficiaries speak at least a dozen major languages, including
Spanish, Farsi, Cantonese and Armenian.
For Dowling's multiple problems, doctors spent months making
trial-and-error adjustments before they got the combination of drugs
that seems to work for her.
She takes a painkiller to help her get out of bed in the morning. She
uses a combination of asthma drugs for breathing. Another drug helps
the circulation in her legs.
Together, the drugs make it possible for Dowling to live on her own in
the San Francisco Bay Area with a service dog named Little Maggie,
four cats and a van equipped with hand controls, in addition to her
motorized wheelchair.
Even a small setback unexpected new side effects, for example, or a
lower level of effectiveness could render her unable to function and
force her into a nursing home.
That would cost the system more money, and Dowling is horrified at the
possibility of losing her freedom. "I have fought many years to live
independently, and I'd rather be dead than go into a nursing home,"
she said.
Under the new Medicare program, instead of simply picking up her
prescriptions at the pharmacy, Dowling would be asked to choose from a
number of private insurance plans, which would offer differing
benefits, including different lists of drugs. They would be free to
change the list of covered drugs.The idea is that Medicare patients
would get help with their drug bills, and competition among the
insurance companies would act as a brake on prices a boon to
overstretched federal and state healthcare budgets.
Some of the hoped-for savings are expected to come from the greater
use of generic drugs and cheaper drugs that are similar to the most
costly versions.
That may work for most patients. But Dowling and others like her fear
that they will not be able to find plans willing to assure them of
receiving exactly the same combinations of drugs that work for them now.
For some who depend on multiple drugs to manage complex problems, the
subtle differences in formulations of nominally similar drugs can make
significant differences.
Some advocates have urged the federal government to slow the
transition to the Medicare drug benefit for the poor and disabled,
instead of switching all of them on Jan. 1 as planned. Several
advocacy groups have called for guaranteeing Medicaid for a year as a
backstop.
Yet the Bush administration and many supporters of the Medicare
benefit are loath to reopen the issue, fearing that the fragile
political coalition that approved outpatient drug coverage for all
senior citizens could unravel.
Instead, the federal Centers for Medicare and Medicaid Services has
encouraged states to authorize a three-month supply of drugs as a
bridge for poor and disabled "duals." Smith is urging that it be
extended to six months.
The Medicare agency says it is doing all it can to avoid problems.
Poor and disabled Medicaid beneficiaries will be automatically signed
up in one of the new drug plans to prevent anyone from losing
benefits. Every private plan will have to have a written transition
strategy for Medicaid patients, including a way for them to appeal
coverage denials.
Moreover, plans will be required to cover "all or substantially all"
drugs in six critical categories, such as anti-cancer agents,
HIV-
AIDS drugs and anti-psychotic medications. And the government will pay
more to drug plans covering sicker patients.
That still may not be enough.
"Even if [Medicare] is 99% successful, with 6 million people, you
could still have more than 60,000 losing their medications," said
Robert M. Hayes, president of the Medicare Rights Center in New York.
"To us, that is why it is immoral to let political fears block a
Medicaid transition safety net."
Such rhetoric solves nothing, said Mark McClellan, a physician who
once practiced in California and now runs Medicare and Medicaid.
"I want to be very clear," McClellan said. "I am not focused on any
political fears here. I am focused on how to get effective Medicare
coverage to people of limited means. We haven't spent a lot of time
focusing on would've, could've and should've with the law. We are
focusing on how to implement it as smoothly as possible."
McClellan said those with the least ability to pay have the most to
gain from the new Medicare benefit. As an additional safeguard, they
will be able to switch drug plans at any time, he said.
California officials say they are guardedly optimistic.
"Right now, [Medicare] is addressing all of my concerns regarding the
transition," said Stan Rosenstein, the state's deputy director of
medical care services. "That said, this is a massive change, and we
all have to be vigilant to do everything we can to avoid breaks in
coverage."
California will continue covering some tranquilizers that Medicare
will not pay for. And to ease the change, the state will keep in place
a policy that allows patients to receive a 100-day supply of most
drugs, Rosenstein said.
But advocates are unlikely to get the commitment they're seeking for
the state to cover any drug that the private plans won't.
"The state claims it's broke," said Jeanne Finberg, an attorney for
the National Senior Citizens Law Center in Oakland. "But I don't think
the Legislature is aware how big a change this will be, and how their
constituents will be affected."
Frail patients now covered under Medicaid should not be required to
change medications because of cost, pharmacology experts say.
"Economics is not a medically appropriate reason to switch a patient
from a drug if they are doing well on it, especially if it's a patient
with a chronic condition," said Larry Sasich, a pharmacist who teaches
drug policy at the Lake Erie College of Osteopathic Medicine's School
of Pharmacy in Erie, Pa. Drug plans say they will handle the disabled
with care.
"If you have a chronic condition and you're stabilized we're not
going to cut people off," said Howard Phanstiel, CEO of PacifiCare
Health Systems Inc., which is bidding to provide Medicare drug
coverage in all 50 states.
In some cases, a plan pharmacist might call a doctor using high-cost
drugs to treat a patient when cheaper alternatives are available. If
the doctor doesn't want to change, "end of story," Phanstiel said.
That's doesn't sound so reassuring to Marta Russell.
A Medi-Cal beneficiary from Van Nuys, Russell is disabled because of
cerebral palsy.
"What I get through Medi-Cal in California is because of years of
advocacy by various groups to see that the benefit is generous,"
Russell said. "Private companies are going to be looking to make a
profit off me, and that is a whole different structure."

Re: [cml 2] MDAnderson Results . . .

2007-02-16 07:14:26

Good Luck Barb.
Teresa T

Re: [cml 2] Niacin

2007-02-16 04:09:19

I just wanted people to know that Niacin can have unwanted side
effects. My husband was on the time-release tablets and his reaction was
much, much more than flushing -- it was hives and unbearable itching for days.
Hope this helps someone understand that this reaction is possible, maybe
not probable.
Tanya
Husband George dx 7/04
Hematologic normal 10/04
Not yet PCRU
400 mg Gleevec
At 11:16 AM 7/12/2005, Margot M intelligently penned

pure luck

2007-02-15 21:54:45

hallo my friend
first and most importantly me and my family are all ok. the truth is that i was
quite lucky this time. the suicide bomber hit in my home town where i live,
natanya. it was in a central junction in the city. i was in my car with 2 of my
kids, roee and zvi. we have passed this junction 1 minute before the bomb went
off. actually i was 200 meters away from the place. we have heard the bomb
extremly loud and our car was shaken. i knew immediately it is a terror act and
after 1 minute we have heard the sirens of all the ambulances rushing to the
place. it is a terifying to think ...what if ...only 1 minute away...
but this is life and it goes on. it is stronger than any terorist can do. i have
just returned home few hours after the bombing, passed the junction again and
the shopping mall is open, people are in the street and we keep living. sad
story
shalom (peace???)
giora

Re: [cml 2] Cancer Drugs Offer Hope, but Expense Worries Doctors and Patients

2007-02-15 12:10:12

Cheryl,
Thanks for that article. I have been saying the same thing for a few years now.
The only difference between some of the other cancer drugs and Gleevec, is that
they are only given for about 6 months, with some exceptions. Gleevec is for
life. They have now extended our lives by up to 25 years, and we must pay these
high prices the entire time. What happens to those of us that do not have
socialized medicine, or insurance that will refuse to pay once we have reached
our limit.
Shelley

Niacin

2007-02-15 06:49:12

The way to avoid the flushing of Niacin is to only purchase the time-release
tablets. They take care of most of the flushing, though sometimes not
completely.
Margot

Cancer Drugs Offer Hope, but Expense Worries Doctors and Patients

2007-02-14 23:07:32

Cancer Drugs Offer Hope, but Expense Worries Doctors and Patients
New York Times
Ten thousand dollars once seemed a lot to pay for a few months' supply of a
drug.
No more. Avastin. Erbitux. Gleevec. Herceptin. Rituxan. Tarceva. These are
among the first in a wave of new drugs giving hope to millions of cancer
patients by treating the disease in new ways, like blocking the blood
vessels that feed tumors.
But they are all highly expensive, up to $100,000 for a course of treatment
that lasts a few months. That is hundreds of times the cost of older, more
toxic cancer drugs, and several times the annual cost of AIDS drugs, whose
prices caused widespread anger during the 1990's.
And except for Gleevec, a leukemia drug from Novartis that has produced
spectacular results, the new cancer drugs help most patients only
marginally, prolonging life by a few weeks or months.
For now, the high-priced cancer drugs are a relatively small part of overall
medical spending. But some doctors warn that with more new drugs coming, the
use of superexpensive therapies may further fuel the runaway costs of the
health care system.
Dr. Leonard Saltz, a colon cancer specialist at Memorial Sloan-Kettering
Cancer Center in New York, said patients might face rationing of care if
costs continued to rise.
"I don't know how much money there is in the till to pay for all this, but I
have to be worried there isn't enough," Dr. Saltz said. "There is a limit as
a society to how much we'll be able to spend on each patient."
Health care economists say the rising costs of the new cancer treatments and
other drugs will force difficult questions on doctors and policy makers.
Should patients be guaranteed access to drugs no matter what their cost? And
should physicians be encouraged to consider cost when they decide on
treatment - something most doctors in this country now say they do not do?
Drug companies say many factors drive the pricing of their drugs, including
the high cost of research and development, complex and expensive
manufacturing processes and the value the drugs provide for patients.
As doctors learn how to use combinations of new drugs in treatment, the
therapies will extend the lives of more and more patients, said Dr. Susan
Desmond-Hellmann, president for product development at Genentech, a
biotechnology company in South San Francisco, Calif. The company makes
several of the new drugs, including Avastin, that are widely considered the
most promising. A year's supply of the drug for an average colon cancer
patient costs $54,000.
"It's a very reasonable thing to ask about the cost of therapies," Dr.
Hellmann said. "But I just don't want people to lose sight of how meaningful
the changes in treatment are."
For now, most patients are able to obtain the new drugs, either through
insurance coverage or assistance programs. Lung cancer was diagnosed in
Shawnette Treat, 37, early last year and she was told her life expectancy
was less than two years. She now takes Tarceva, which costs almost $90 a
day, or $31,000 a year.
Ms. Treat, who lives with her husband and two children in Melbourne, Ark.,
has private insurance, which covers 80 percent of Tarceva's cost. But she
stopped working in March after undergoing a double mastectomy when the
cancer spread. She said she could not afford her insurer's $500 monthly
co-payment for Tarceva.
"My husband's the only one working, and we have bills and stuff that we have
to pay, and it takes all he makes for us to make it," Ms. Treat said. "Five
hundred dollars is a lot to us a month."
The Patient Advocate Foundation, a nonprofit group based in Newport News,
Va., that helps people obtain medical care, is covering the monthly payment,
Ms. Treat said. "I wouldn't be able to take it if they didn't pay my
co-pay."
But the foundation covers only a few kinds of cancer and does not directly
assist people who are uninsured, said Beth Darnley, the foundation's chief
program officer. Those patients must apply to Medicaid or to the companies
for discounted drugs.
In some cases, patients are discontinuing treatments or taking other drastic
steps, doctors say.
Dr. Angela Dispenzieri, an oncologist at the Mayo Clinic who specializes in
treating a blood cancer called multiple myeloma, said she avoided discussing
a drug called Thalomid with patients who could not afford it. The drug costs
$25,000 a year and will not be covered by Medicare until next year.
"I don't want them to feel bad," she said.
If history is any guide, health care professionals say, patients, doctors
and lawmakers will not want to confront questions about how the medical
system should deal with the cost of the new drugs.
"There's not really any incentive in the system to be more rational," said
Dr. John Hornberger, an adjunct clinical professor of medicine at Stanford
University and a practicing physician who studies drug costs.
Policy makers in the United States, unlike those in Britain and some other
countries, do not measure the cost-effectiveness of new drugs, Dr.
Hornberger said. The government does not control drug prices, and Medicare
is prohibited from making coverage decisions based on cost; it must base its
decisions solely on the drugs' performance.
In terms of the cost per life saved, cholesterol-lowering drugs like
Lipitor, which reduce heart attacks and strokes, are probably far more
effective than cancer drugs, Dr. Hornberger said. But cancer is a uniquely
frightening disease, and people will pay almost any price for treatments.
Also, most cancer drugs do not have good substitutes; if a drug works - even
marginally - patients and doctors clamor for it, and insurers have little
choice but to cover it, Dr. Hornberger said.
While some of the new drugs are difficult to make, their prices are
unrelated to their manufacturing costs, said Geoffrey Porges, a
biotechnology analyst at Sanford C. Bernstein & Company. Drug makers charge
what they think the market will accept, he said.
"It's sort of one of those things where everyone looks over their shoulder
at everyone else, says, 'He started it, it wasn't me,' and it builds," Mr.
Porges said.
Advocacy groups for cancer patients have been mostly silent on drug prices
because pressing drug makers might discourage them from making the
billion-dollar investments necessary to find new drugs.
Doctors also do not want to consider cost, said Dr. Eric Nadler, a
researcher at Harvard Medical School who has studied the attitudes of
oncologists on the issue. In his study, about 80 percent of cancer doctors
said they would prescribe a drug costing up to $70,000 if it would extend a
patient's life just two months longer than the standard treatment.
In fact, the way doctors are reimbursed for cancer drugs gives them an
incentive to prescribe the most expensive treatments. The drugs are
generally given intravenously in a hospital or doctors' office, and Medicare
pays doctors for the cost of the drug plus a slight extra fee to help cover
their overhead. The higher the price of the drug, the greater the extra fee.
As a result of these forces, drug makers have faced only scattered
opposition to the rising prices of new cancer treatments. The upward spiral
started in 1992, when Bristol-Myers Squibb began charging $4,000 a year for
Taxol, a breast cancer treatment that was among the first so-called targeted
drugs, which are aimed at destroying tumors without the side effects of
traditional chemotherapy.
At the time, some lawmakers and patient advocates complained, noting that
Taxol had been invented at taxpayer expense at the National Cancer
Institute. But Bristol held firm.
Then in 1998, Genentech began charging $20,000 a year for Herceptin, another
targeted therapy for breast cancer. The price attracted notice, but little
criticism.
Four years later, Bristol and ImClone Systems began charging as much as
$100,000 a year for Erbitux, a drug for advanced colon cancer. (Because
different patients have different treatment cycles, these prices are
averages, as computed by the companies or financial analysts.)
For drug makers, the high prices have been a boon. Shares of Genentech have
quadrupled in the last two years. Dr. Hellman of Genentech noted that the
company began researching Avastin in 1989, at a time when many scientists
doubted it could work. Genentech spent hundreds of millions of dollars
researching the drug, and decided to build a plant to manufacture it years
before receiving approval to sell Avastin in 2004.
Considering the expense and risk Genentech incurred - as well as the costs
of similar treatment - Avastin is fairly priced, Dr. Hellman said.
"It's a giant breakthrough therapy," she said. "The value to patients is
very high."
Cancer drugs will be the fastest-growing part of the drug market for the
next five years, with costs rising 20 percent a year, more than double
overall drug spending, analysts say. Every major drug maker is now investing
heavily in oncology, rushing to capitalize on new research about the way
cancer cells reproduce. Most of the new drugs attack the proteins that help
tumors grow, and most are produced by specially engineered bacteria, unlike
the older drugs which can be chemically synthesized.
Cancer drugs are not the only expensive new treatments; some drugs for
rheumatoid arthritis cost more than $10,000 a year. But the gap between
performance and cost is especially pronounced for the cancer treatments. A
Genentech study of colon cancer patients showed that a combination of
Avastin and standard drug therapy extended the life of the average patient
less than 5 months - to 20.3 months from 15.6 months - compared with the
standard treatment. With the notable exception of Gleevec, from Novartis,
which has been widely praised for prolonging the lives of leukemia patients,
most other drugs show even smaller improvements in survival.
Some oncologists are beginning to question cancer drug prices publicly. Dr.
Saltz of Memorial Sloan-Kettering Cancer Center said doctors must consider
drug cost when they discuss treatments with patients.
"We'd like to feel that it's wrong to put a value on human life and that we
as a society won't do it," he said, "but we do it every day."

Re: [cml 2] Lowering Cholestrol

2007-02-14 22:25:33

Teresa,
I have not taken that, (or any other medication for choloesterol), but it is my
understanding that high doses of Niacin may be useful to reduce cholesterol. If
you google it you should be able to come up with dosafes.
Shelley
mtadros9@... wrote:
Did any one have try the following supplement BIOS2LIFE for lowering cholestrol
while taking gleevec? I have high Cholestrol and have been experienced severe
bone and muscle pain after taking lipitor to lower my bad cholestrol level. I
stopped this medication and I am looking for other alternatives. I was advised
by a phrmacist to try the BIOS2LIFE product. Please let me know if you are
familiar with this product.
Thanks
Teresa T
dxd 1/03
CCR 7/03
PCRU pending
#764 Zero club

Re: brain freeze

2007-02-14 17:37:01

Yes, I experienced something like that for the
first 2-3 months on Gleevec. They were usually not
painful but irritating and distracting. I still get
them from time to time, but they are of lower
intensity now.
ho

MDAnderson Results . . .

2007-02-14 09:30:19

Hi all. I was waiting with 'baited breath' on my cyto and pcr
results from MDA. As you all know I am going for my stem cell
harvest and was hopeful that the results would be good enough to go
ahead with the harvest in August.
I am pleased to share that I am still holding steady with a negative
cyto report and a pcr value of 0.02. I give up on being pcr
negative on MDA's sensitive quantitative pcr testing so 0.02 is fine
for me and I am doing Snoopy's Happy Dance.
For anyone interested, I'll be at MDAnderson beginning on August 2nd
through the 11th. If anyone is going to be there, we'd love to meet
you for lunch, breakfast, dinner or even a quick cup of coffee. You
can email me privately.
I am headed for a 'girl's week away' in Dallas to meet up with some
gal pals so I won't be online for the next few days.
Hoping this finds everyone doing well.
Love,
Barb

Lowering Cholestrol

2007-02-14 02:57:41

Did any one have try the following supplement BIOS2LIFE for lowering cholestrol
while taking gleevec? I have high Cholestrol and have been experienced severe
bone and muscle pain after taking lipitor to lower my bad cholestrol level. I
stopped this medication and I am looking for other alternatives. I was advised
by a phrmacist to try the BIOS2LIFE product. Please let me know if you are
familiar with this product.
Thanks
Teresa T
dxd 1/03
CCR 7/03
PCRU pending
#764 Zero club

Re: [cml 2] brain freeze

2007-02-13 22:25:55

Yes Tracy. I did experience the same when not eating something cold and took
iboprofen and advil which seems to help relief the stress.
Best
Teresa T

brain freeze

2007-02-13 17:14:34

Hi Everyone,
You know how you can sometimes get a sharp pain in your head (usually
right behind an eye) when you eat something really cold too fast?
Well has anyone else gotten these temporary brain freezes when not
eating something cold?
I've noticed that I've been getting them here and there without
provocation (when I'm not eating or drinking anything cold) and I
wonder if the Gleevec is causing the blood vessels to swell like what
happens when you eat something very cold.
Just wondering,
Tracey

Re: [cml 2] Anyone heard from Jennifer G?

2007-02-13 15:35:27

Gale,
I read your note and decided to write to Jen. You can send her a message on her
website (at the end) www.cmlsupport.com.
Glad you brought this up. There are so many of us that it's easy to lose track.
Susan L

Interesting post from UK group (Long)--Discontinuing IM

2007-02-13 09:33:21

Elizabeth is a friend of mine from the Connecticut vaccine trial of
2002. She is on day 50 after having had a transplant of heer
mother's stem cells and is doing well. I thought this would be of
interest to some.
Outcome of four patients with chronic myeloid leuk
by Elizabeth Rees, 09/07/2005
Makes interesting reading.
I should really put this under Articles and when I can remember how
to do it, I shall !
Elizabeth
haematologica 2005;90:979-981[medline][PDF][index] [prev][next]
?Outcome of four patients with chronic myeloid leukemia after
imatinib mesylate discontinuation
?Serena Merante, Ester Orlandi, Paolo Bernasconi, Silvia Calatroni,
Marina Boni, Mario Lazzarino
?Division of Hematology, IRCCS Policlinico San Matteo, University of
Pavia, Viale Golgi 19, 27100 Pavia, Italy
Correspondence:
??Serena Merante, MD, Division of Hematology, IRCCS Policlinico San
Matteo, Viale Golgi 19, University of Pavia, 27100 Pavia, Italy
Phone: international +39. 0382.503595. Fax: international
+39.0382.502250.
E-mail: s.merante@...
MENU
Abstract
Text
Table1
Table2
Funding
References
Abstract
?Imatinib mesylate (IM) therapy is effective in patients with
chronic myeloid leukemia (CML). However, whether it should be
discontinued in patients who achieve sustained molecular response is
debated. We describe 4 patients with undetectable levels of BCR-ABL
transcripts in whom IM therapy was discontinued. Two patients
relapsed after 7 and 10 months and promptly responded after
restarting therapy; 2 patients are off therapy at the last follow-up
visit after 14 and 15 months and are still in complete molecular
remission.
Key words: ?chronic myeloid leukemia, imatinib, therapy
discontinuation.
?Imatinib mesylate (IM) therapy leads to a complete cytogenetic
response (CCyR) in the majority of patients with chronic myeloid
leukemia (CML) in chronic phase. A few patients achieve complete
molecular remission, defined by a four log-reduction of BCR-ABL
transcripts. The negative quantitative real time polymerase chain
reaction (Q-RT-PCR) is confirmed by nested PCR negativity.
Although IM therapy is effective in CML patients, some unanswered
questions remain. In particular, it is unclear whether IM can
actually cure CML and whether this therapy can be safely stopped in
patients with complete cytogenetic and molecular responses.1 In
these patients, it is unknown whether and for how long continued
therapy is required to maintain clinical, cytogenetic and molecular
responses. Between 2000 and 2004, we treated 88 CML patients with
IM: 62 were interferon-a (IFN) pre-treated patients in late chronic
phase and 26 were newly- diagnosed patients in early chronic phase.
Sixty-three patients (71.5%) achieved a CCyR and in 15 of them (24%)
BCR-ABL transcripts became undetectable.
Here we describe the cytogenetic and molecular outcome of 4 patients
with CML in whom IM therapy was discontinued after the achievement
of a complete molecular response in the bone marrow and peripheral
blood. In all cases, IM was discontinued because of the patients'
requests and not because of toxic effects. The patients'
characteristics are shown in Table 1. All patients were pre-treated
with IFN; only patient #2 was in CCyR and was switched to IM because
of IFN-intolerance. No patient had a family donor for allotransplant
or was a candidate for an unrelated transplant. During IM therapy at
400 mg/day, no patient required dose reduction or discontinuation
due to hematologic or non-hematologic toxicity. At the time of IM
withdrawal, all patients had been in sustained CCyR for 17 to 30
months and in complete molecular response for 13 to 19 months. All
patients showed normal cell morphology on bone marrow examination
and none of them had additional cytogenetic abnormalities.
The relative quantification of BCR-ABL transcripts was performed by
Q-RT-PCR using 1 µg of total RNA, isolated by an RNeasy mini kit
(Qiagen) from 107 Ficoll-hypaque separated mononucleated cells,
reverse-transcribed as previously described.2 Relative
quantification of the BCL-ABL fusion transcript was performed with
GeneAmp 5700 SDS (Applied Biosystems) in a reaction volume of 25 µL,
using 1/10 cDNA volume, SYBR Green PCR Master Mix and the primers
already reported.3 The dissociation curves were analyzed to assess
amplification specificity. A standard curve was obtained through
serial dilutions (5x105 5 BCR-ABL copies) of K562 RNA into normal
control RNA. BCR-ABL expression levels were calculated by the DDCt
method, using ABL as the normalizing gene and K562 as a calibrator
sample. Nested RT-PCR assay was used to confirm the negative results
of quantitative RT-PCR2. After IM discontinuation, Q-RT-PCR was
performed every 3 months on bone marrow and peripheral blood samples.
As shown in Table 2, patients #2 and #3 experienced molecular
relapse 7 and 10 months, respectively, after IM discontinuation. The
cytogenetic Philadelphia marker was negative and the karyotype was
normal. Both patients resumed IM at 400 mg/day and both achieved a
second complete molecular response. They are currently receiving IM
therapy. Patients #1 and #4 are still in complete molecular response
(15+ and 14+ months, respectively) and both are off therapy. Our
experience suggests that withdrawal of IM therapy in chronic phase
CML patients after achievement of a complete molecular response may
result in different molecular outcomes. It is likely that the
absence of detectable BCR-ABL transcript by Q-RT-PCR does not equate
with cure. To our knowledge, there are 6 other reported cases of IM
discontinuation due to intolerance or patients' request: 5 had
undetectable levels of BCR-ABL transcript4,5 and 1 was in sustained
cytogenetic response.6 Overall, in 4 of the literature cases a
molecular and cytogenetic relapse occurred rapidly, whereas our 2
cases only had molecular relapse. Moreover, patients who restarted
IM had prompt cytogenetic and molecular responses. There is evidence
that CML patients have a leukemic population of non-cycling Go
quiescent stem cells that are not sensitive to IM.7,8 This
subclinical reservoir can be a source for disease relapse. On the
other hand, the prompt improvement seen after restarting therapy
argues against the development of resistance. However, the selection
of resistant clones after IM exposure and the emergence of
Philadelphia-negative clones with secondary cytogenetic
abnormalities are matter of concern, particularly in patients
receiving IM for a long time.5-7 Although the follow-up of our
patients is short, the improved quality of life while off therapy
and the prompt response to resumed IM therapy suggest that the
subset of patients who have sustained complete molecular response
may be candidates for intermittent therapy. Future studies should
determine the optimal duration of BCR-ABL negativity before IM
therapy can be safely discontinued.

Dr. Goff to receive award - first to clone v-ABL oncogene and C-ABL protooncogne

2007-02-13 00:13:24

His important work contributed to the development of Gleevec.
I-Newswire) - The Retrovirology prize, which will be granted annually,
recognises a mid-career retrovirologist aged 45 to 60. The inaugural prize,
named the M. Jeang Retrovirology prize, is supported through a donation from
the Ming K. Jeang Foundation, an educational foundation based in Houston,
Texas.
Stephen Goff, 53, is a prolific and highly accomplished scientist. He has
published over 250 scientific articles. He was one of the first
investigators to clone a functional copy of a retroviral genome, and to use
recombinant DNA methods to study viral replication. Over the last two
decades Dr. Goff has developed and exploited the Moloney murine leukemia
virus as a genetic system. One of his most important results was the
definition of the functional domains of the viral pol gene, and the seminal
discovery of a viral function, now termed integrase, used to insert viral
DNA into the host genome. Goff was also the first to clone the v-abl
oncogene and c-abl protooncogene; two important findings which contributed
to the development of the antitumor drug Gleevec.
Goff was a PhD student at Stanford in Nobel laureate Paul Berg's lab. He did
his post-doc with David Baltimore, another Nobel prize winner. He is active
in many professional organizations and serves on numerous editorial boards
including the Open Access journal BMC Microbiology.
In choosing the prize winner, the Retrovirology Editors "considered more
than just scientific excellence, and sought to identify the rare individual
who is both an outstanding researcher and a selfless mentor". Indeed, Goff
speaks on mentoring as an important aspect of science, "I hope that I will
be remembered as someone who trained a large number of active and productive
scientists -- at last count I have graduated 25 students and trained about
the same number of fellows. I try to give my students considerable freedom
to explore new avenues, to fail and succeed, and so to learn by experience
what is worthwhile and what is too risky. I try to encourage optimism,
self-motivation, and give some sense of the excitement we all have in what
we do."
The Retrovirology prize was launched in an editorial published in April
calling for nominations, submitted via the Editorial Board of the journal to
a selection committee composed of the editors of Retrovirology: Kuan-Teh
Jeang, Monsef Benkirane, Ben Berkhout, Masahiro Fujii, Michael Lairmore,
Andrew Lever, and Mark Wainberg.

Re: Anyone heard from Jennifer G?

2007-02-12 15:12:24

Yes, I have been wondering about Jennifer, too. I'm glad you posted
this message, Gale, and hopefully we'll hear from her -- and hear
that she's doing well.
peace,
Kathy
dx 5/03

Agrylin vs Hydrea

2007-02-12 13:03:51

Thank you, Kris and Cheryl,
That information is very interesting. Bob has ET along with CML, takes
8 mg of Agrylin daily and has suffered strokes. He also needs a heart
valve replacement which is a cause of insufficient oxygen to his brain
at times. But perhaps the Agrylin was part of the cause of the initial
strokes last year. I will discuss this with Dr Sawyers on Monday and
also bring copies of what you both have posted. Thank you so very much.
If it weren't for sites like this and folks like you, so many of us
would still be in the "dark ages" when it comes to these diseases. Dr
Sawyers is always appreciative of the information I bring him from the
various sites and on various subjects. I also go to the MPD site and
it has a great deal of info on ET, which is very helpful. In fact,
UCLA is testing Bob for the JAK2 gene which is mentioned in your
articles.
Again, thank you....................blessed be nancy w

Re: [cml 2] BMS Project--Shelley, et. al.

2007-02-12 03:16:48

I went to that web site and couldn't find a post
At 01:50 PM 5/30/2005, lwnkmp intelligently penned

Anyone heard from Jennifer G?

2007-02-12 00:40:33

Hello All,
I'm curious if anyone has heard from Jennifer?
Last post, she mentions taking a vacation to Alaska, just after finding
out she had some lung AVM's.
Jennifer, if you're out there, let us know if you are OK.
Thinking of you,
Gale Bacon

Re: IM cycling -Lisa

2007-02-11 20:07:12

Lisa,
Hi Lisa,
I cycle occasionally also. I do it for all the reasons mentioned and
only started after I was PCRU for quite a long time. I do not think
I would have been brave enough to try it with only a 2 log
reduction. This is primarily owing to the fact that we know that
even when we reach zero FISH we still have a huge amount of leukemic
cells which could cause lots of problems in the absence of IM. Oh,
by the way here is my standard disclaimer: I am not a doctor and do
not play one on T.V. But I would like to comment on your cycling
habit. We know from various studies that it takes 7 to 10 days (and
sometimes longer) for IM to clear our system. If you are only off
for 5 days each month, then I would worry that your total serum
plasma level of IM would be in the range that would be equal to a
suboptimal dose of IM. Without trying to scare you and certainly with
only your best interest at heart, I would worry that you might be
flirting with creating a resistance to IM.
As much as Richard mentioned that he is unwilling to recommend
cycling to anyone, neither am I, and I do not cycle nearly as much as
you do. I took a break last November and one just one month ago. I
always break for 10 days or more, but when I re-start I start at a
higher dose, sometimes 600mg a day for at least a week or 2 then
taper down to my usual 400mg. My thinking was to build up my plasma
levels quickly to overwhelm any resistance clones that may have
manifested in the absence of IM. There is nothing to substantiate my
approach and it is just my own logic and thinking, and I am not a
scientist.
In my case when I do take a break it is really because I have such
low Hgb and general fatigue that walking up a small flight of stairs
and I start breathing like Darth Vader, I am not over weight, and I
am very physically fit. Just prior to a break I feel like a walking
toxic time bomb -exasperated by the low Hgb and fatigue. On the
other hand once the break is finished and I am back to my "normal"
self I stay fully energized and in a general feeling of well being
for at least a month after re-starting. So, it is all worth it to
me.
Glad to see you are doing well and remain mostly PCRU. It is also
pretty likely that the fluctuations you notice with PCR negative to
positive from time to time is the usual fluctuations that we will all
see. But it does remind us that their are leukemic cells lurking and
we must stay vigilant.
Cheers and all the best to you,
Cheryl-Anne
But I'm off about 5 days a month...My breaks are about every 3 1/2 to
4 weeks apart.

New Approach Works Against Leukemia, Lymphoma

2007-02-11 14:38:48

New Approach Works Against Leukemia, Lymphoma
By E.J. Mundell
HealthDay Reporter
FRIDAY, July 8 (HealthDay News) -- Experts have long known that blood
stem cells extracted from umbilical cords can help beat back deadly
lymphomas and leukemias. Unfortunately, there's always been one
roadblock: the average umbilicus contains only enough stem cells to
help the smallest patients, mainly children.
That's why the early results of a new study are so encouraging.
Researchers at the Dana-Farber Cancer Institute in Boston say they
have successfully treated adult blood cancer patients using stem cells
extracted from two separate cords.
"The remarkable thing about it is that there are no apparent adverse
consequences of using two cords, and the new blood cells seem to come
in faster, with more rapid engraftment," explained Dr. Robert Soiffer,
chief of hematologic malignancies at Dana-Farber.
He said the majority of patients receiving the double-cord stem cell
transplant are still alive and doing well one year after treatment.
Researchers led by Dr. Karen Ballen are still tabulating their data
and the full results of the study will probably not be announced until
December, Soiffer said. However, he gave reporters a preliminary
sketch of the findings at a recent
National Cancer Institute-sponsored seminar held at Dana-Farber.
Another expert called the results "very promising."
Because the majority of leukemia and lymphoma patients are older
adults, "this opens up the possibility of treating the primary patient
set" with cord blood-derived stem cells, explained Louis DeGennaro,
vice president of research at the Leukemia & Lymphoma Society.
"This combining of cord blood collections has such great promise," he
said. "It's exactly what you need -- more cells."
The umbilicus is a rich source of stem cells destined to become blood
cells. Soiffer also pointed out that cord blood has a relatively low
number of immune T cells -- key players in a dangerous post-transplant
immune response called graft-versus-host disease that can threaten
patients' lives.
For those two reasons, transplanting stem cells from the umbilicus
means the threshold for a proper "match" between donor and patient is
much lower than if cells were sourced from adult bone marrow.
"That means more patients can be treated," DeGennaro said, "especially
patients who are older than what's currently considered the age
cut-off for transplant."
Another advantage of umbilical cord transplant: no risk whatsoever to
the donor.
And yet doctors began realizing early on that a single cord simply
does not contain enough stem cells to quickly repopulate the
devastated immune systems of adult patients.
"You ended up having slower engraftment," DeGennaro explained. For
patients with blood cancer, that kind of delay can be deadly, he said.
"It opens the patient up to infection because their immune system is
compromised, and there's also the risk of disease recurrence."
But Ballen's team at Dana-Farber may have come up with an obvious
solution. Working with 27 patients suffering from a range of leukemias
or lymphomas, they obtained blood stem cells sourced from two separate
cords for each patient. These stem cells were then infused into the
respective patient in a simple intravenous procedure.
Although exact numbers aren't yet available, Soiffer said that, one
year later, "we have seen a relatively fast engraftment and the
graft-versus-host rate has been tolerable."
Furthermore, "the initial survival over one year has been very
encouraging -- the large majority of patients are still alive," he said.
Soiffer said that, so far, there seem to be no extra complications in
using two cords instead of one. One interesting finding: Although stem
cells from both cords contribute to a new, healthy blood supply over
the first few months, Soiffer said that, "ultimately, it appears that
cells from one cord predominate and end up taking over. And right now
we can't predict which cord that will be."
DeGennaro applauded the effort, but cautioned that the demand for
usable cords -- which parents donate to public cord blood banks -- may
soon outstrip supply.
"Availability is an issue," he said. He and Soiffer agreed that most
U.S. hospitals are simply not equipped to extract and properly store
cord blood stem cells. That means that parents at many centers may not
be able to donate the lifesaving cells.
"There are some new initiatives under way, however," DeGennaro said.
"Right now, Senator Chuck Schumer (D-N.Y.) is co-sponsoring the Cord
Blood Stem Cell Act, which hopes to create -- if and when it is passed
-- a network of qualified cord blood banking centers nationwide."
"Those would be centers for preparing and distributing cord blood
cells for treatment. Something like that would really fill the
availability gap," he said.
More information
For more about using stem cells transplants to fight blood cancer,
head to the Leukemia & Lymphoma Society.

Novartis takes rare road to cures

2007-02-10 22:25:04

Novartis takes rare road to cures
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By Tom Wright International Herald Tribune
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FRIDAY, JULY 8, 2005
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<http://www.iht.com/cgi-bin/search.cgi?query=BASEL,
Switzerland&sort=swishrank
companies compete to develop the next blockbuster drug for diseases that
affect large numbers of people.
So, when Novartis in May trumpeted an advance in tackling Muckle-Wells
syndrome, a rare inflammatory disease which causes skin rashes, it took some
industry analysts by surprise.
The excitement at Novartis was not driven purely by altruism, however.
From its headquarters nestled on the Rhine in the Swiss town of Basel,
Novartis is pioneering the use of rare diseases, like Muckle-Wells, as a
testing ground to help find cures for larger - and more profitable - areas.
It's a strategy, that Daniel Vasella, Novartis' chief executive, hopes will
make it quicker, and possibly cheaper, to develop innovative new drugs.
"It's a change in focus," Vasella said in an interview. "In the optimum case
it will take out one year or two years" from a drug's development time.
Like Novartis, most drug companies are scrambling to find cheaper ways to
make drugs. Costs have soared in recent years - to about $1 billion for a
single compound - as safety concerns pushed regulators to demand more
rigorous tests, which can take up to a decade.
Driving Novartis's new focus are recent advances in genetics, which have
allowed scientists to better understand the molecular similarities, or
"pathways," between different diseases.
Traditionally, pharmaceutical companies have tested drugs by targeting a
single gene or protein.
What Novartis wants to do, Vasella said, is understand how a chain of genes
may be at the root of several diseases.
"If you know that there's a common pathway between two diseases, then of
course the chance that a medicine works in both is very, very high," he
said.
Novartis is certainly not the only company focusing on genetics. But it has
been at the forefront of using new science, analysts say.
Pascal Franc, an analyst with Pictet, a private bank in Geneva, said it was
too early to evaluate the results. "It will take a few years for these
compounds to reach late-stage development, he said.
The drug development strategy is the brainchild of Mark Fishman, a former
Harvard professor whom Novartis hired in 2002 as its hea