Hi Everyone,
As most of you probably know, Bob Ash recently passed away. It's
always unfortunate when one of our own loses the battle. I don't
know Bob's family personally nor do I know what his cause of death
was but I did find this old post of his that was dated Nov 23, 2004.
It explains his history quite detailed which I thought you might be
interested to read.
My sincerest condolances to Bob's family and friends,
Tracey
Elderly Patients With Poor Prognosis Are Often Deemed Ineligible for
Treatment
with Imatinib Therapy, According to a New Study from Decision Resource
WALTHAM, Mass., May 19 /PRNewswire/ -- Decision Resources, Inc., one of
the world's leading research and advisory firms focusing on pharmaceutical
and health care issues, finds that longer treatment durations and the launch
of novel treatments will grow the drug market for chronic myelogenous
leukemia almost 12% annually between 2004 and 2009. Novel agents such as
those from Bristol-Myers Squibb and Novartis will increase patient drug
consumption by offering a viable, and likely durable, second-line
pharmacological approach to the treatment of chronic myelogenous leukemia.
The new Pharmacor study entitled Chronic Myelogenous Leukemia also found
that elderly patients with poor prognosis are most likely to be deemed
ineligible for treatment with imatinib therapy.
"In most markets, elderly patients with poor prognosis are deemed
ineligible for imatinib therapy because of the high cost of this treatment.
Instead, these patients are treated with less expensive drugs, such as
hydroxyurea," said Jude Nelson, analyst at Decision Resources, Inc. "Another
factor related to the use of imatinib is the prescription of inappropriately
low doses in an effort to mitigate cost and toxicity by some clinicians
practicing outside of academic centers. Oncologists and hematologists working
in private practice and in smaller hospitals need to be educated concerning
the dangers of selecting for imatinib-resistant clones."
About Chronic Myelogenous Leukemia
Chronic myelogenous leukemia is a form of chronic leukemia characterized
by increased production of myeloid cells in the bone marrow. It was
traditionally treated with chemotherapy, interferon, and bone marrow
transplantation, although Novartis's Gleevec/Glivec (imatinib mesylate) has
radically changed management of the disease. With the advent of
Gleevec/Glivec, the disease has become easy to treat, and the vast majority
of
patients opt for this well-tolerated oral therapy.
Hi Barb,
Glad it arrived and Tom enjoyed it....I thought it looked like a
little time capsule. Two 5-cent deposit liter bottles makes
inexpensive packaging.
Now, a Spanish lesson for the Gringo......
uno, dos, tres quatro, CINCO............
I think you are spelling it like a French person! :)
Glad that young Tom is doing so well.....just a bit more of
these tough days and he will be up and getting around. Right
now, sleep is good.....then all the energy goes to healing.
Hang in there......
Maui Nanc
Dear Nancy,
The Cinquo de Mayo (sp.?) poster was a hit! My husband is a beer
wholesaler and had given Tom autographed posters of swimsuit models
that he had collected from wholesaler conventions. The posters are
hanging in his hospital room. These posters are quite popular with some
of the residents, nurses and doctors. Your poster fit right in. Tom
will be replying to you personally, but I wanted you to know that he
received your poster. You do win the creative packaging award!
Tom is day +13 and doing "average" and is described as being "right
where he should be". Very comforting words. He has sores in his throat
and can't eat but started drinking water yesterday - a good sign! He
says the pain is less now. He has the occasional fever, but no big
deal. He is receiving wonderful care.
Barb Neddo,
Mom to Tom, dx CML 8/04, MUD BMT 5/05/05 Cinquo de Mayo!
http://www.caringbridge.org/wi/tomneddo
Good morning,
The new BMS drug is called dasatinib.
See this site for the complete report.
http://www.biomedicalproducts.com
Jim
Day 100 has arrived! I'm going in this morning for my 100 day biopsy and then
home tomorrow morning.
The anitrejection drugs are at still at the targeted reduced levels.
My dosage of Gleevec has been increased to 600mgs. per day.
Still no outward signs of GVHD.
I'll post the results when I get them.
This is going to be a long two weeks...but at least I get to spend them at home.
Regards and Prayers
dt
Good morning,
The new BMS drug is called dasatinib.
See this site for the complete report.
http://www.biomedicalproducts.com/ShowPR~PUBCODE~090~ACCT~9000000100~ISS
UE~0505~RELTYPE~RLSN~PRODCODE~00000000~PRODLETT~M.html
Jim
Hi Zavie,
Thanks for sending this along. I haven't had a chance yet to look
anything up from ASCO. (A friend of mine went and she is a cancer
researcher, so I may need to pick her brain.)
However, I'm confused. The press release is about GIST, not CML, and I
don't believe you can extrapolate. So what dosage difference are you
referring to? Are you referring to something different and not the press
release? There has been plenty of research indicating that higher doses,
in CML, are better.
How are you doing lately?
jennifer g.
www.cmlsupport.com
This evening.
.
ASCO: Most Oncologists Aren't Frank on Prognosis with Terminal Patients
By Peggy Peck , MedPage Today Staff Writer
Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University of
Pennsylvania School of Medicine.
MedPage Today Action Points
This survey suggests that oncologists often back away from giving a detailed
prognosis to patients. Review communication with patients to determine
whether
you are communicating clearly and in a fully useful way.
This study was published as an abstract and presented at a conference either
as an oral or poster presentation. These data and conclusions should be
considered to be preliminary as they have not yet been reviewed and
published in a
peer-reviewed publication.
Review
ORLANDO, May 15-Only 5% of oncologists always give their patients estimates
of survival time, researchers reported here today. But 75% of oncologists
say
they would want such estimates themselves if they had terminal cancer.
Asked about this "do as we say not as we do" approach, Christopher K.
Daugherty, M.D., of the University of Chicago, who presented the survey
results at
the American Society of Clinical Oncology meeting here today, said it may
reflect physicians' perception of patients' wishes.
He noted, for example, that 49% of oncologists surveyed said "they either
ask
patients if they want to know prognostic information or wait for the patient
to ask for the information."
And the oncologists uniformly rated themselves as good communicators, with
90% saying that they and their patients are "usually satisfied with their
communications." But Dr. Daughtery said that he had no patient satisfaction
data to
support the oncologists' self-views, which he said probably "overestimate"
the
oncologists communication skills.
Dr. Daugherty sent mail surveys to a national sample of 1,200 oncologists
asking specific questions about how the oncologists communicate with
patients
"where death is expected within six to 12 months." Sixty-four percent of
those
surveyed responded.
Bruce E. Johnson, M.D., director of the Lowe Center for Thoracic Oncology at
the Dana-Farber Cancer Institute in Boston and associate professor of
medicine
at Harvard Medical School, said he thinks the survey data are accurate "if
you look at the way they put it -- 'estimates of survival.' What I hear is
that
most oncologists, myself included, don't like to use specific numbers. What
is
more common is for an oncologist to give ranges because survival is a
bell-shaped curve: some patients fall in the middle but others are at either
end of
the curve."
Among the other findings of the survey:
Ninety seven percent said that communication teaching should be part of
cancer-care training, but only 27% said they had such training themselves
and 80%
said they either didn't receive communication training or that the training
was
inadequate.
While most oncologists rated themselves as good communicators, women
oncologists were less likely to give themselves high marks as communicators.
Older oncologists with more time in practice were more likely to report that
their communication practices had evolved, but Dr. Daugherty said that there
was no clear pattern. People who didn't give estimates decided to give
survival
estimates, while those who started out giving estimates, decided that was
too
much information.
The study was funded by the McCann Foundation, the National Cancer Institute
and the Soros Foundation's Project on Death in America.
Disclaimer
The information presented in this activity is that of the authors and does
not necessarily represent the views of the University of Pennsylvania School
of
Medicine, MedPage Today, and the commercial supporter. Specific medicines
discussed in this activity may not yet be approved by the FDA for the use as
indicated by the writer or reviewer. Before prescribing any medication, we
advise
you to review the complete prescribing information, including indications,
contraindications, warnings, precautions, and adverse effects. Specific
patient
care decisions are the responsibility of the healthcare professional caring
for
the patient. Please review our Terms of Use.
This press release is just out regarding Michael Heinrich's presentation at
the American Society of Clinical Oncology (ASCO):
http://www.ohsu.edu/ohsuedu/newspub/releases/051605Gleevec.cfm
At the talk, Dr. Heinrich stated that regarding the 400 mg versus 800 mg
dosage of Gleevec arms of the randomized phase III trial, there were no
differences in response rates.
PORTLAND, Ore. - Patients with gastrointestinal stromal tumors (GIST) who
have a particular genetic mutation are more likely to respond to Gleevec
(imatinib) than those without the mutation, according to OHSU study results
showcased at the 2005 annual meeting of the American Society of Clinical
Oncology (ASCO). The results confirm previous observations and provide a
foundation for molecular testing that can predict who will best respond to
treatment with Gleevec.
"Increasingly, there will be more drugs like Gleevec that are very
specific in their action, and patients' responses to them will be dictated
by their tumor biology," said Michael C. Heinrich, M.D., principal
investigator of the study. "Performing molecular tests on patients' tumors
will be useful for doctors in determining how patients should be treated."
Heinrich is a professor of medicine (hematology/medical oncology) in the
OHSU School of Medicine and the Portland Veteran Affairs Medical Center
(PVAMC) and a member of the OHSU Cancer Institute.
Gastrointestinal stromal tumors, which occur in the stomach and
intestines, are diagnosed in about 5,000 Americans annually. Surgery is the
treatment of choice for localized tumors, but in many patients the tumor
recurs and spreads elsewhere, particularly to the liver. Without Gleevec, at
this metastatic stage the disease is rapidly fatal because chemotherapy,
radiation and surgery are ineffective in advanced cases.
Gleevec works by inhibiting a protein called KIT, which is abnormally
expressed in GIST and fuels tumor growth by signaling cancer cells to keep
growing. The majority of GIST patients have dramatic clinical improvement in
their disease (tumor shrinkage) after beginning treatment with Gleevec.
However, more than half of patients develop resistance to the therapy and
experience disease progression after about two years.
In a previous study, Heinrich and colleagues identified differences in the
clinical response to Gleevec among patients with different mutant forms of
KIT protein, which is a type of tyrosine kinase. The purpose of this latest
study was to further examine the relationship between the more common
mutations and drug response in a much larger, dosage comparison Phase III
study.
"We are pleased that the findings in this study substantiate our earlier
observations," said Christopher L. Corless, M.D., Ph.D., who collaborated
with Heinrich on the study. "Molecular subtyping of GISTs is clearly
important to understanding how Gleevec - and other drugs in the pipeline -
affect growth signaling in these tumors." Corless is a professor of
pathology in the OHSU School of Medicine and PVAMC and a member of the OHSU
Cancer Institute.
Researchers analyzed tumor DNA samples from 324 GIST patients, obtained
before they began treatment with Gleevec, and correlated the findings with
subsequent patient outcome. Of 280 tumors with abnormalities of the KIT
gene, those with a mutation in a segment called "exon 11" were significantly
more likely to have a clinical response to Gleevec than patients whose tumor
had a KIT "exon 9" mutation or had no mutations. Patients with the KIT exon
11 mutation responded to Gleevec for a longer period (576 days) than those
with the KIT exon 9 mutation (308 days).
"However, there was no difference in the likelihood of clinical response
between the two doses used in the study," said Heinrich. "The presence of an
exon 11 type mutation was the single best predictor of clinical response to
Gleevec, irrespective of dose."
The study also confirmed that new drugs are urgently needed for patients
whose GIST genotype is less responsive to Gleevec. In response to this
clinical need, future studies planned by Heinrich and colleagues will
evaluate the use of Gleevec in combination with other agents to treat GIST
patients.
"We have a powerful tool in Gleevec," said Heinrich. "However, we need to
find ways to use the therapy so it doesn't just shrink tumors, but totally
eliminates the cancer cells, so the tumors don't come back."
The OHSU Cancer Institute is one of only about 60 National Cancer
Institute-designated cancer centers in the nation and remains the only such
center between Sacramento and Seattle. It comprises some 120 clinical
researchers and basic scientists who are working together to translate
scientific understanding into longer and better lives for cancer patients.
Dane,
Congratulations! It is wonderful to hear that you are doing so well.
Adrienne
Dane <dane714@...
Today is day 97 post transplant and I had my last meeting with my team. My
counts are still excellent and I have no signs of GVHD. They also agreed to
increase my Gleevec dosage to 600mgs a day. Then I got the green light to go
home! I just have to hang around until Wednesday so I can have my 100 day
biopsy taken. I go back in two weeks to discuss the results and any changes in
meds, and hopefully have the CVC removed.
I'm not out of the woods yet, but making it to the 100 day mark is definitely a
milestone!
.
Today, some of the nurses in the clinic came to say goodbye. These are truly
compassionate people, to do what they do.
http://www.fototime.com/12E535E242D55B7/orig.jpg
Hi,
I'm trying find some information regarding DLI, such as its
procedure/protocol and its side effects towards patients with bcr-abl
detected.
So far, I could not find specific information on DLI performed on
patient with CML post BMT with only molecular bcr-abl detected, while
cytogenetics and hematological remains negative.
FYI, I am CML post BMT with bcr-abl 0.182%
Appreciate if anyone outthere has the information I am looking for.
Thanks
regards, pt
Thank you, I will enjoy eating watermelon as long as I can control my other
Gleevec side effect ( bad diarrehea).
Thanks Nancy again for your help. I am enjoing being back to a such wonderful
group.
Love to you all
Teresa T
Today is day 97 post transplant and I had my last meeting with my team. My
counts are still excellent and I have no signs of GVHD. They also agreed to
increase my Gleevec dosage to 600mgs a day. Then I got the green light to go
home! I just have to hang around until Wednesday so I can have my 100 day
biopsy taken. I go back in two weeks to discuss the results and any changes in
meds, and hopefully have the CVC removed.
I'm not out of the woods yet, but making it to the 100 day mark is definitely a
milestone!
.
Today, some of the nurses in the clinic came to say goodbye. These are truly
compassionate people, to do what they do.
http://www.fototime.com/12E535E242D55B7/orig.jpg
Hello Teresa,
Watermelon does not interfere with the efficacy of Gleevec, but
Grapefruit does. Watermelon is a "natural" diuretic.
Hope this helps,
Cheers,
Cheryl-Anne
Thanks.
Hi Susan,
The link for this site is :
Hi Teresa,
I am not the real Cheryl......but I am a reasonable facsimile.
The only food item that is contra-indicated in grapefruit or it's
juice....which is because it can elevate the IM in you blood stream and
maybe cause havoc for you (like more side effects).
There are some supplements that you should avoid........but not other food
(that I am aware of).
I am a big promoter of watermelon.............
because it can act as a diuretic.........
but mostly because it is VERY alkaline, and this offsets the acidity of IM,
which causes some of the side effects......like acid reflux, some tummy
complaints, etc............
so, yes, eat the red stuff! I have been having it almost daily for a few
months now.
Maui Nanc
Biotech/Pharmaceuticals
Pfizer Positive on Sutent
By TSC Staff
5/14/2005 6:28 PM EDT
URL: http://www.thestreet.com/stocks/biotech/10223536.html
Pfizer's (PFE:NYSE) investigational drug Sutent more than doubled survival
and significantly reduced tumor growth and spread in a Phase III study in
patients with Gleevec-resistant gastrointestinal stromal tumors, the company
said.
The drugmaker said encouraging Phase II results also were observed in other
tumor types, including metastatic renal cell carcinoma, metastatic breast
cancer and neuroendocrine tumors, according to data presented at the annual
meeting
of the American Society of Clinical Oncology.
Sutent is designed to starve tumors of blood and nutrients needed for growth
and simultaneously kill cancer cells that make up tumors.
The results from a Phase III study of more than 300 GIST patients resistant
to or intolerant of the standard treatment Gleevec, showed Sutent prolonged
the
time to tumor progression (6.3 months on Sutent vs. 1.5 months for controls)
and reduced the risk of death by about 50% compared with a placebo, Pfizer
said in a press release.
In addition, long-term follow-up data from the Phase I/II GIST study
demonstrated that Sutent extended overall survival to nearly 20 months in
patients
whose cancer had progressed despite treatment with other standard therapies.
Also, the median time to tumor progression in this study was 7.8 months for
all
patients, with some patients benefiting even more.
Gleevec is made by Novartis (NVS:NYSE) .
Separate data were released from two Phase II studies of patients with
resistant renal cell, or kidney, tumors. In a 63-patient trial, 40% of
patients
responded to treatment with Sutent. Tumors didn't progress for more than
three
months in an additional 28% of patients, indicating that 68% of patients
benefited from the treatment, Pfizer said. The average time to tumor
progression for
patients in this study was 8.7 months, and the median overall survival was
16.4
months.
A second Phase II study of 106 patients demonstrated an objective response
rate of 39% in patients treated with Sutent, the company said. Among the
patients, 23% saw tumor stabilization. Taken together, a total of 62% of
patients
benefited from treatment with Sutent, Pfizer said.
Elsewhere, trial findings from Bayer (BAY:NYSE) and Onyx Pharmaceuticals
(ONXX:Nasdaq) for the experimental drug sorafenib confirmed interim Phase
III
results in progression-free survival of advanced renal cell carcinoma.
Hi Nancy!
What a lovely message. I had forgotten about that Jerry's Link to the World of
CML.. It's a very good long-short cut. Thanks for the lovely message. Have a
wonderful time at the concert.
Tra, la, la
Susan
Lynn do not forget the potassium supplement with your lasix.
Teresa T
Thanks to you, too, Tracey. It's that dratted extra dash I inserted.
Susan
Hi Susan,
It is CML2 not CML/2
The following address yields an Error Page. :(
Hi all,
First, I want to thank Cheryl Anne for sending me the address for our cml/2
website address which I had forgotten. I have subsequently had a request for it
from another friend on this list. I checked it but unfortunately it doesn't
work! So, if anyone else is wondering how to access the page itself instead of
just getting mail in your private mailbox, perhaps someone else has written it
down somewhere and can share it with the rest of us! The following address
yields an Error Page. :(
Susan, try this:
Dear Dane, Adrienne, Cheryl-Anne, and Bob S,
Thank you very much for the responses your gave regarding your Lasix
use. I really appreciate hearing from the experience of others. It
helps me so much in making good decisions regarding treatment.
I've started taking the 20 mg Lasix.. The first day, I was going and
going :-0 but now that has leveled out and I'm feeling much better.
Many thanks again for your input!
Lynn (Snickersunny)
Good stuff, indeed! Thanks for bringing this to CML2, Richard. The Holyoake
Project seems to be coming through in fine form.
All the best,
Susan
Roy on the Asian group posted this abstract from Leukemia by Tessa
Holyoake's group, which demonstrates activity of IM combined the FTI
Lornafarnib against quiescent CML cells. Good stuff. I've written to Tessa
to ask whether and when trials might begin. I'll let you know what I hear
Hi to all,
Richard R
My daughter had fifth disease. When you get it, your face gets red and
it looks like someone slapped you really hard. She also had a fever
with it.
Barb
Dear Lynn,
I've taken Lasix for years with no problems. As Dane
said, it's a good idea to take a potassium supplement
(actually I took Klor-Kon, a CHEAP potassium
prescription). Lately I've been taking
Spironolactone, 25 mg once per day, in addition to
Lasix. Spironolactone is 'potassium sparing' but not
as strong as Lasix (at least not in my opinion).
One other thing, when you're taking Lasix everyone
knows where they can find you!
Bob Stewart, Granger, Indiana
Zavie # 54
LYNN SAID:
"Hi Everyone,
I've been experiencing edema issues,(mainly legs,
ankles, and feet.) My kidney function tests are all
normal.
I've been using Triamterene w/HCTZ, but it doesn't
seem to do enough.
I've also been trying a low salt diet.
My Onc wrote me out a prescription for Lasix 20 mg.
Does anyone have experience using Lasix? Should I
only use it from time to time, or do you have to use
it daily for it to benefit? Should I be worried about
any kidney problems in the future from using it?
Also, should I be on any potassium and/or any other
supplements while using Lasix? I see my Onc every 3
months, and he didn't recommend using anything else.
He just wants to test my potassium levels the next
time I come in, but I wonder if that is too long to
wait.
Any/all advise would be greatly appreciated! Thanks!
Lynn (Snickersunny)
400 mg Gleevec
Zavie #692"
Hello Lynn,
I use Lasix regularly, edema has always been a problem for me with
IM and Interferon. I am on 400 mg of IM daily. I have used it
pretty much every day for the past year without consequence of any
kind. My potassium levels are fine, but I do supplement my diet
when necessary (i.e. when traveling and not eating right). In my
case I find if I stop using Lasix, I swell up again. I am also on a
low salt diet, but I do indulge every once in a while. However, if
I do eat anything particularly salty it shows right away!
Now that the better weather is here I do keep watermelon on hand.
I do not know your age, but for any woman of childbearing age on
this list who may also be taking birth control pills and using
diuretics, you should consult your package inserts. Some of the
newer BC's act as diuretics and are also potassium sparing, meaning
that you could be overdosing diuretics and taking in more potassium
than necessary.
Hope this helps,
Cheers,
Cheryl-Anne
Also, should I be on any potassium and/or any other supplements
while
Hi Lynn,
My husband has had pretty good success with Lasix. He has quite a bit of edema
and takes one Lasix twice a day--morning and afternoon. If he forgets the
afternoon Lasix, which happens from time to time, he'll see the edema
accumulating by nighttime. He didn't start out taking two a day. He
experimented-- taking one every three days, one every other day, one a day, two
a day two or three times a week. You get the picture. For him, the two a day
every day works best. He also takes potassium supplements every day. My
understanding of Lasix is that it is very efficient at stripping potassium out
of your system. His doctors were adamant that he either take the potassium
supplements or make sure he eats potassium rich foods like orange juice,
bananas, potatoes. If your doctor didn't prescribe potassium supplements, I
would make sure you include potassium rich foods in your diet every day. Hope
the Lasix works for you. Edema is annoying if there's not too much of it, but
it can
be really uncomfortable and debilitating when it gets out of control.
Adrienne
Lynn <petenlynn@...
Hi Everyone,
I've been experiencing edema issues,(mainly legs, ankles, and feet.)
My kidney function tests are all normal.
I've been using Triamterene w/HCTZ, but it doesn't seem to do enough.
I've also been trying a low salt diet.
My Onc wrote me out a prescription for Lasix 20 mg.
Does anyone have experience using Lasix? Should I only use it from
time to time, or do you have to use it daily for it to benefit?
Should I be worried about any kidney problems in the future from
using it?
Also, should I be on any potassium and/or any other supplements while
using Lasix? I see my Onc every 3 months, and he didn't recommend
using anything else. He just wants to test my potassium levels the
next time I come in, but I wonder if that is too long to wait.
Any/all advise would be greatly appreciated! Thanks!
Lynn (Snickersunny)
400 mg Gleevec
Zavie #692
Hi Shari,
Yes it has been recognized the Gleevec does lower cholesterol in at least
some people....I know that Dr. Druker has seen this with patients. My chol.
reading used to be about 160 (I don't eat red meat or dairy).......but now
it is something like 129! also with a good ratio.
Nancy C.
I posted earlier about being dx with a sinus tachycardia, which is
irregular heartbeat, and rapid pulse. The thyroid test and chest x-
rays came out normal. The surprise was my cholesterol. Total
cholesterol 158, he said the ratio of good/bad cholesterol was
excellent. Now I have never had high numbers, but I remember it being
around 180 and I had alot more bad than good. I have not changed
anything and I don't take any kind of medicine for it. Maybe gleevec
does lower a persons cholesterol.
My Dr. doesn't want to do anymore tests right now but if I have anymore
fluttering or rapid heartbeat I'm supposed to come in a get a monitor
to wear. I hope everyone in the group are doing well, and I want to
welcome any new members to the group.
Shari from Kansas
dx feb 03
400 mg gleevec
pcr 0.09
some strange spam, MJ
Good to hear you are still doing well Dane. i too hope the 100 day bmb returns
good results. I am taking gleevec after relapsing from a bmb with excellent
results. At last look I had 93% donor marrow and 1% bcr, this time I am hoping
for 100% donor cells, I have another bmb in June. I take 400mg og gleevec.
Judy T.
I have used Lasix for Gleevec induced edema with some success. When
my onc presribed it, he also prescribed a potassium supplement to go
with it and stressed the importance of taking the potassium with the
lasix. If your md did not give you the potassium supplement with
the lasix script, it may be wise to contact him.
Slightly off topic....I have had a few episodes of edema of the feet
and lower legs during my outpatient stay. Several times, I was
given intravenous lasix to solve the problem. IV lasix works and
works fast! You can tell the people on the ward who are taking
it...they are the ones running for the bathroom with their IV poles
in tow! It only took one session of IV lasix get rid all the edema
for weeks at a time. Again, I stress that I was receiving potassium
via IV as well each time the lasix was added.
A Duck with Green Balls
http://www.fototime.com/F45C306D7B9B82E/orig.jpg
Hi Everyone,
I've been experiencing edema issues,(mainly legs, ankles, and feet.)
My kidney function tests are all normal.
I've been using Triamterene w/HCTZ, but it doesn't seem to do enough.
I've also been trying a low salt diet.
My Onc wrote me out a prescription for Lasix 20 mg.
Does anyone have experience using Lasix? Should I only use it from
time to time, or do you have to use it daily for it to benefit?
Should I be worried about any kidney problems in the future from
using it?
Also, should I be on any potassium and/or any other supplements while
using Lasix? I see my Onc every 3 months, and he didn't recommend
using anything else. He just wants to test my potassium levels the
next time I come in, but I wonder if that is too long to wait.
Any/all advise would be greatly appreciated! Thanks!
Lynn (Snickersunny)
400 mg Gleevec
Zavie #692
You are such and inspiration to the rest of us.You go guy, were
all there with you cheering you on.
If you can't win the race, make the one in front of you run
harder! Looks like your pushing him to the finish line. G00000000000
Dane!!!!!!
Health and Prayers
Eagledove (Kay)
Hey Dane,
Good to hear things are going well. My fingers are crossed that your
100 day biopsy will turn out with excellent results.
Cheers, Love and all good things,
Cheryl-Anne
Hi Dane -- Glad you are feeling great & doing well. Let your mom
spoil you rotten -- you deserve it! all the best, Kathy
Day 90 and still feeling fine. Actually I feel great. Occasionally fatigued, but
that's about it.
Sorry for the infrequent updates, but there simply is not too much to tell.
After a full week of 200mgs of Gleevec per day, my counts are still fine, so we
increased the dosage to 400mgs a day.
I am still on the reduced dosage of tacrolimus (anti-rejection drug) and hoping
that GVL is occuring. I have had no outward symptoms of GVHD, but my oncologist
reminds that this does not mean that GVL is not being achieved.
In any case....increasing the dosage of Gleevec and continuing the reduced
dosage of tacrolimus is all that can be done for now.
I have my 100th day bone marrow biopsy on the 18th of this month, and then I get
to go home! I will return to Houston on June 2nd for the biopsy results and
hopefully have my central line removed. Until then I just play the waiting game.
I was allowed to drive home last weekend, so I got to see my family and even
caught one of Caroline's softball games.
I will probably get to go home again this coming weekend, then return for my
final clinic day and biopsy.
It's a lot of driving, but it beats sitting in this apartment between clinic
days...as it is getting hotter now which limits my outdoor activities. The
dressing around my CVC line has to be protected from excessive sweating.
The car we rented came with unlimited mileage...and we are taking advantage of
that! I think they are in for a surprise when we return it.
My mother is doing a great job as caregiver...in fact she is spoiling me rotten.
It's been many years since we have spent this much time together, and it has
brought us closer.
I don't want to forget to pass on information about this apartment I am renting
here in Houston, just in case anyone will be needing a place down here. Pictures
of the apartment can be viewed by going to www.danesweb.com and selecting the
"Houston Rental" album.
Here's the info:
Concierge & Lodging International LLC
Camden Vanderbilt Apartments
7171 Buffalo Speedway
Houston Texas 77025
Phone: 713 667 9667 Contact is Melinda.
That's all for now.....will update next week before leaving Houston!
Regards and Prayers
Dane
Hi Everyone,
Those of you with young children probably already know what fifth
disease is but for those of you who don't know, it's primarily a
childhood disease along the lines of chicken pox, measles and mumps.
Apparently the powers that be, ran out of names after naming chicken
pox, measles, mumps and rubella so when it came to fifth disease, they
named it just that, "fifth" because it was often the fifth childhood
illness to be contracted.
In any case, it is caused by a virus named "Parvovirus B19" (which
incidentally has nothing to do with the parvovirus that many of us
have our dogs vaccinated against). It seems this is the time of year
that fifth disease becomes rampant (at least at my kid's school it is)
so I thought I'd mention it. For normal healthy people, it's not a
big deal, you get a rash and a fever and it passes but it can cause
problems for people with leukemia because it can potentially halt red
cell production for a while so for those of us who are already anemic,
this could be a problem.
I think the majority of adults are already immune to it but if you're
not, you may want to avoid going into elementary schools and day cares
or if you know a child who has it, you may want to avoid that child
for a while.
Take care,
Tracey
This happens often at the busy, chaotic, big
academic medical centers. Try to speak to someone, a
nurse or your doctor, face to face, or at least on the
phone, when making the request. Call again to remind
them. Try not to get too frustrated. :)
ho
Hi Dane _
I loved your photo of Bobby Labonte's car on water.... I am a personal fan of
Kasey Kahne.... #9 would have been better....
I hope you are doing well and know that I think of you and send good thoughts
and wishes your way. I am cheering from the sidelines.....
Barb in AZ
Message: 1
Date: Sat, 7 May 2005 14:56:09 -0500
From: "Dane" <dane714@...
Subject: Dane's Digital Moments 5/7
http://www.fototime.com/61D4B9884BF6CD3/orig.jpg
Jesus goes Nascar....
Hello Shari
Good quote from Medicinenet.com on sinus tachycardia: "Sinus tachycardia is
usually due to stress, exercise, fever, pain, anxiety, high thyroid hormone
levels, caffeine, and stimulant drugs such as cocaine, amphetamines or
decongestants."
If the condition comes and goes abruptly you may have what's called
paroxysmal atrial tachycardia, or PAT: "bouts of rapid, regular heart beats
originating in the atrium (upper chamber of the heart). PAT consists of
periods of very rapid and regular heart beats that begin and end abruptly.
During the bouts of PAT, the heart rate typically speeds up to 160-to-200
beats per minute.
"PAT is due to abnormalities in the AV node "relay station" that lead to
rapid firing of electrical impulses from the atrium which bypass the AV node
under certain conditions. "Certain conditions" include alcohol excess, too
much stress, the intake of caffeine (including that in Coke and other
colas), the presence of hyperthyroidism (overactive thyroid) and excessive
thyroid hormone intake. Some drugs can also trigger PAT."
As you can see, there's overlap between sinus and paroxysmal atrial
tachycardia; the latter is more often a problem intrinsic to the heart
itself, but they both can be caused by external factors. In either case it's
well worth ruling out hyperthyroidism, since it's fairly common and
treatable, though other causes need to be considered as well. If it turns
out to be sinus tach, then excess coffee consumption is the most likely
culprit, followed by stress.
Though there's been a lot of concern about IM possibly affecting the thyroid
gland, I've seen no data to suggest that it does, so if this is a thyroid
problem, it's probably independent of your CML.
The good news is that neither sinus tach nor PAT tend to be life
threatening. Good luck figuring it out.
Yours,
Richard R
Hi my name is susie and I think this is my first time on this new cml
2. I was diagnosed nov 2002 and have been on Gleevec since jan 2003.
They first put me on 600mg and wasn't happy with results so they put
me on 800mg. After the two year trial they then put me on 600mg due to
the issue of money....since then my results have become stagnant...
They say its doing well but they always want better. But im tired of
all the side effects and I hate complaining as I feel I should be
happy that atleast we have something that keeps us alive. Gleevec
effects me everyday, even though ive been on it for two weeks. They
say it will get easier..WHEN..... (Gleevec is making my life hell, I'd
rather just have the leukemia...but know thats not gonna happend) i
still have nausia problems and I run to the loo too often for the
other problems ( I take 10 nausa tabs aday to prevent vomiting )as
well as servere achy joints ( I have between 6 - 10 pain killers aday)
and having to take pain killers for the pain. By afternoon i can
either have a ten minute nap or it might go into 3 hours....Can
someone give me advise, im not getting anywhere with my Onc...hes a
great man and a great doctor...
but I feel I have no conttol or even any life going on like
this...There is a new drug on trial here in australia...but not really
up and running...has some one got any suggestions...as im seeing my
Onc. in two weeks. Im suppose to take up to 4 tabs aday for fluid
retention but I don't. But with my 6 Gleevec, 10 nausa tabs and 6 -12
painkilers I sometimes could be taking between 20 to 30 tabs aday...I
can't keep going on like this...HELP...
Hi Kathy,
I am not presently a patient at MDACC but I have consulted there in
the past. I would say that they are notoriously bad about paperwork!
Getting results in writing, etc. Some people only get a phone call with
results from the PA.....some just a simple e-mail........but often not the ]
real interpretation from the pathologist, etc.
I expect that others will share their experience and you will not be alone
on this. But he is what I wanted to comment on.........a consult is usually
a one time visit, to see if they agree with your present treatment, which is
what I did in seeing Dr. Talpaz in Feb. 2003. If you are seen their on a
regular basis, whether it is every 3 months or 6 months.......you are seeing
them as a cml specialist and you are their patient! Especially if they are
running all the tests on you.....doing the bma, the FISH and/or PCR and
your local onc is not doing this..........they are the DOCTOR! and your local
needs a report of all of your visits and your test results, coming from them,
not from you.
Personally, I sometimes think that MDACC has too many patients to stay
on top of everything......too many trials running, etc........and the way
that you
get what you need and should be getting is to have high expectations and
make demands, or it falls through the cracks.
I hope I have not offended anyone....this is not to say that you don't get
good
care there........but they are weak with the paperwork end, and I have
heard this
before.
Good luck getting your situation straightened out.
PS. I never heard such a thing.....that you are not a patient if you are
not in a
trial.....that is a pretty ridiculous comment. If they are following you on
a regular
basis, you are a patient.......do they think this is part of your Houston
vacation!
Nancy C.
Hi All,
I have been catching up on about a months worth of posts, and wanted
to check in. Things have been very busy as I have been doing a lot
of traveling this year although I am hoping for it to slow down as
the whether gets warmer so I can spend more time hiking on the
weekend. (of course we are suffering through our 3rd rainy weekend
in a row here which doesn't make people very happy, especially when
monday's tend to be beautiful). I also just received a promotion as
work which adds to the crazinest as I am currently doing both my old
and new jobs until I can hire someone.
I had my quarterly PCR tests last week so I am patiently :-) waiting
for the results. I saw some discussion probably a few weeks back
about freq. of testing. I actually only have my cbc and chem done
every 3 months now, and have been since PCRU over a year ago. I am
actually comfortable about this as all of my counts have been good
and stable since about 2 months post dx.
I am really interested in the studies with INF and IM and the
possibility to stop IM at some point, but don't qualify as I am
already PCRU and most than 6 months post dx. I would also be very
concerned about taking INF as I tolerate IM very well and don't want
to risk the side effects impacting me day to day. I have also been
reading about the peptide vaccine and was wondering if that was
another option in combo with IM for possibly stopping at some point.
I hope to be able to join the chat again in a couple of weeks. I
have missed the conversations.
Sharon
Dear Listmates:
I would appreciate hearing from any of you who go to MDACC on a
consulting basis (not as part of a trial). Let me tell you what is
happening. I was diagnosed in 12/03 and went to MDACC in 1/04. They
intially thought they would enroll me in a study but it turns out
that I didn't meet some criteria, so I was told that I would be
followed "as if I were in a study" for the first 12 months. Well, I
went back in 4/04 and then was told that I should return in 7/04
which I did. All of this time I was being followed by a very able
local hemo onc in Florida where we live and by a hemo-onc in Kentucky
where we summer. At the 7/04 appointment I was told that I would be
seen only on a consulting basis and that my MDACC doc was not
my "primary onc" since I was not enrolled in a study.
OK so I regrouped, filled in my local Kentucy onc about this
change and went forward. All of this time the local oncs were not
receiving any test results or dictation from the MDACC onc and the
only written material I received were e-mails from the Physicians
assist. that briefly told me my BMB results. I returned to MDACC in
1/05, had a BMB, met with the doc and was told all was well and to
come back in July. At the end of February I received e-mail copies
of the results of the PCR, FISH and CYTO studies. No interpretation,
no Doctors notes.
Well Two weeks ago I had my three month appointment with my Florida
onc who "hit the ceiling" because in all of the time I have been
under his care he has never received any "consulting notes, test
results, or interpretations" from the MDACC doc. So he told me to
rectify the situation, stat.
Each time I go to MDACC I fill out the paper work to have these
results sent to the local oncs. WHen I called the Leukemia Center at
MDACC I was told that sending these results was the responsibility of
the doctor and his team. SO over a week ago I e-mailed the doc. I
have not heard anything from them.
Are there any of you who go to MDACC on a consulting basis, and do
you have these types of problems? How about recommendations for next
steps. I don't want to become a persona non gratis at MDACC, but I
am really frustrated.And I wonder what does it mean to be seen on a
consulting basis if there is no "consulting going on?"
Help.
Kathie in Florida (and occasionally, Kentucky)
http://www.fototime.com/61D4B9884BF6CD3/orig.jpg
Jesus goes Nascar....
I know the subject of thyroid testing has come up before in the
group. I will be tested for a thyroid problem on Monday. I went to
my regular Dr. who is an internist on Friday because off and on for a
while now I have been having irregular heart beats and the feeling
that my heart is fluttering. I had mentioned it to my local
oncologist and to Dr. Faderl at MDACC and neither one really said
anything. When I called my Dr. he said come in right now. When I
got there they listened and he could hear it and they also did an EKG
which it also showed up on. He said it was a Sinus Tachycardia. He
said something else he felt was causing this to happen. Also my
pulse was a little high, and I also feel out of breath. I went to
bed Friday night with it still happening and when I woke up on
Saturday morning it was gone. He said if the thyroid test doesn't
show anything he will order an echocardiagram, and if that doesn't
show anything I might need to wear a monitor for a while. Has anyone
every heard of a sinus tachycardia? I can't remember exactly when
this problem started but it could be on and off for a year now. This
last episode lasted 2 days. If anyone has any input on this I would
appreciate it.
Shari from Kansas
dx feb 03
gleevec 400mg
pcr 0.09
In a message dated 5/6/2005 7:10:14 P.M. Eastern Standard Time,
rrockef1@... writes:
Jennifer, I am so sorry about Ryan. We have a similar thing going on here
too. A young friend of my daughters who just turned 16 had cancer in her
shoulder the same time I was diagnosed and she was in remission. We just found
out
she has hours to live. It has spread to her heart. We are in shock....it is
awful when someone is so young to have this happen. We will add Ryan to our
prayer list!
I hope your injections work. I had cortisone injected into the base of each
side of my skull a few years ago and it took care of the pain for a long time
in the neck and upper spine area. It is probably time for another one,
although I don't know how many times one can be injected with cortisone?
Do you attribute your pain to Gleevec, and are you interested in the new BMS
drug? - Lynne A.
Hi Barb,
There were actually several posts about this trial of IM and inf, and maybe
Richard R. pointed out that you had to be within a year of dx???
but you could do what Shelley did, consult with Dr. Druker or Dr. Mauro at
OHSU and have them be in charge of a one-on-one trial for you. You would
probably only have to make 2 trips a year for consult, then fax them all
your blood test results, etc. I know that you did quite well for a long
time on inf....so this might be the ticket for you.
Also, when you are in Portland for a consult you could see the Maui Turtle
in person!!!
Maui Nanc
In a message dated 5/6/2005 7:58:46 P.M. Eastern Standard Time,
bheath@... writes:
I had hoped that my
local onc would give it a while locally and let me take 3 - 4 units
weekly of IFN along with my 800 mg of Gleevec but he feels that doing
something like this is out of his league. Anyway - he is going to
email Druker and I'll let you all know the results.
Barb, GOOD. I am hoping to hear soon about this trial. It is my thought,
even though I do not like IFN and did not do that well on it, that if I could
just add on 3million units or so during the summer months that I could get my
PCR down. I think you are right, and I like this idea now much better than
BMS trial right now. I wondered, Barb, when you wrote the above, that your onc.
says this is out of his league, why he said that?
Weren't you on IFN/Gleevec combo for a long, long time? I thought you were?
Well, let me know. Also, North Carolina is now back ON for me since my counts
came down so well. I am doing a bmb in a few weeks because I want to go ahead
and nail this thing now rather than later. I just hope on their end they
don't lose my results or something...this is getting to be more the norm now.
You'd think if your counts went up or something moved they'd call you and tell
you. Nope. I had to call them so now the "no news is good news" theory is out
the window, haha.
Thanks for piping up here, I need to get more info on this idea, and I just
might go this route. Like I said, it is summer time and I probably would do
better this time of year to work on this rather than in the cold months and flu
season. Thanks, Lynne A.
Hi all. I just saw the thread that Lynne A send to Maui Nanc and
wanted to jump in on this.
My local oncologist is going to e-mail Dr. Druker to learn more about
the interferon trial. I'd like to be in line to try this two
pronged approach and have felt for years that this is the way to go
to bring the disease level down to it's lowest possible burden since
the interferon mechanism works so differently from IM. Almost like
attacking it from two different directions. I had hoped that my
local onc would give it a while locally and let me take 3 - 4 units
weekly of IFN along with my 800 mg of Gleevec but he feels that doing
something like this is out of his league. Anyway - he is going to
email Druker and I'll let you all know the results.
I will be at MDACC on the 14th of June. Let me know if any of you
will be there at the same time. Maybe we can head to the Saltgrass
Steak House for the "Mayfield famous cheese cake"!!!!
Talk to you all soon.
Love,
Barb
Dane / Gregg - not sure if you read this list regularly but I wanted to
let you know that my local oncology group has a 'Tree of Life' each
May. It looks like a May pole with circular outriggings on it.
Anyone can write a special name in honor of someone who is a cancer
survivor or in memory of someone on a bright neon colored ribbon. The
ribbon is then attached to the 'tree'. It's a beautiful spectacle to
see neon blue, pink, yellow and green ribbons fluttering gently in the
breeze - each with someone special's name on it. Your names are
fluttering in the gentle breeze here in Raleigh. : - )
I did this in honor of all of you to let you know your CML Family is
thinking of you as you head to the 'cure'!
Sending my best regards,
Love,
Barb Heathcote
It's nice to hear from you, Jennifer. I had wondered what had become of you
and whether you were ok. I'm really sorry about the back pain and hope you
do get it under control. There's almost nothing worse.
Love,
Richard
Hello Kristin,
Sorry for your concerns and worries. My only perspective at the
moment is that this is the difficulty we all face when we have two
different PCR's from two different places, with different variables,
such as houskeeping gene, different tech's and different
sensitivities. It gets pretty frustrating to say the least. I can
understand why Dr. T. would think about this as being a fluctuation
in the values. Mutation testing is done on PB and not necessarily on
the BMA. At ASH there were several studies showing that, when it
came to PCR, PB and BMA pretty much showed the same result. As for
your question about mutation testing, a larger majority respond to
higher doses of IM, but the increase seems so slight in your case,
that I don't think you have to increase your dose at the moment. I
think if the jump would have been higher, then if it were me I would
consider a dose increase.
I think I'd wait this out and go for another PCR at MDACC in a month
and maybe do that for a few months if necessary. It might yield
better data from which to make a decision; if there is one to make;
Warm healing thoughts to you,
Cheers,
Cheryl-Anne
http://www.mavican.nu/phpbb/viewtopic.php?t=51093
Historic Galveston Homes
In a message dated 5/5/2005 10:20:58 P.M. Eastern Standard Time,
ncogan@... writes:
Hi Kristin,
Dr. Druker also only performs PCR on peripheral blood now.....even when
also doing a bma/bmb because he thinks it is more accurate (I think because
they have a greater volume of blood to work with).
Nancy, I agree with this but yesterday I talked with my oncologist and he
said that he wants me to come in now for a bone marrow biopsy because the PCR
testing I had done in March is not accurate enough for him to tell whether I am
in Chronic phase or not! Also, my PCR results went from .262 in fall of last
year to 1.21 this spring. I asked about FISH and he said I am still
undectable BCR/ABL but that test is not very good either. So he wants a
BMB/BMA
now. I tried so hard to escape, haha.
I wondered if you have heard much about the IFN/Gleevec trial that Dr.
Druker is doing? I am wondering whether I should put an add/on (even though I
hate
IFN) right now for the summer months to see if I cannot reduce my PCR?
Anyway, as far as the BMS trial goes, it went. I don't know what is going on
with
that. I called Dana Farber a couple of times and no one called me back, and I
was waiting for these results (PCR from March) to make up my mind and I only
just got them this week! Anyway, I just found it interesting that my onc.
is making me come in for a biopsy now. I would have though 12-14 vials of blood
were enough!
- Take care and email me sometime! - Lynne A.
Hi Kristin,
Going from .04 to .30 is almost a 1 log increase in the PCR value. Nothing
to be concerned about, but worth watching. I assume that the test was done
in the same lab and under the same conditions.
The COH value 8.3 x 10-5 is 0.000083. This is 1000 times better than the
MDA result. So clearly there is something amiss and he just wants to make
sure by doing a BMB. This is a good idea if indeed something is happening in
the marrow.
My attitude is very simple. First I want to find a lab that does very
sensitive and consistent PCR testing. You want to be able to compare apples
with apples.
If you are at 3 log reduction when it comes to your PCR test (i.e at . 0.01
or better) then I would not increase the dose of Gleevec to try and improve
the result. There is no evidence that you will do better in the long term if
you are less than a 3 log reduction.
My best example to justify this is Giora's experiment with Dr. Hochhaus.
Giora was in the deepest remission of anyone and the moment he went off
Gleevec, the Phillies started to come back. So what is the point of enduring
the increased side effects just to get to PCRU. There doesn't seem to be an
advantage .
On a personal note, I am still trying to get 2 consistent PCR tests back to
back so I can reliably measure any difference. I have tried, but have not
been successful.
In your shoes, I would insist on a PCR test monthly in order to track the
changes in your PCR level before asking to increase the dose.
I hope this helps,.
Zavie
Hey Susan,
I hope you guys can help me out with this one. I had a PB-PCR
performed at MDACC which increased in six months from .04 to .3. The
PB-PCR was repeated at COH last week and the result was 8.3 x 10-5.
(By the way, I have no idea what that equation means...Is that more or
less than .3? Not that they can be compared realistically...) Dr.
Talpaz seems content to treat this as a possible fluctuation in
values. My doctor at COH (where I am followed locally)wants to repeat
my bone marrow and do a marrow PCR. Why would he want to do this? For
mutations testing? He only recently told me that they do perform some
mutations tests at COH but do not release the data to patients, nor do
they base any clinical treatment on the results of the tests.
I am on protocol since 4-01 at MDACC with 400 mg Gleevec. I have
prescription drug coverage and I would just as soon increase to 600mg,
but I assume that would take me off protocol. I have prescription drug
coverage, so free drug is not really an issue at this time.
So I am concerned about how I should handle this...What would you guys do?
Kristin
Hi Cindy:
Welcome to the group- sorry you had the reason to join like the rest of
us. There is a ton of information and support here. Who is your
doctor and what part of the country are you in? I am in New York State
in the Syracuse area, see Dr. Jonathan Wright and Dr. Druker out at
OHSU. Gleevec has been great for me- I just had my 3 year anniversary
and have been in molecular remission for over 2 years. I hope it works
as well for you. In my case, side effects were few and decreased over
time and almost vanished entirely except for a little peripheral edema
in the ankles.
It is great to have a supportive family, as you say you have. It
definitely irons out the wrinkles.
Fred
Welcome! this has been a wonderful source of strength for me.
Hi Jennifer -- sorry you're having back trouble & I hope the injections
help. Painful backs are no fun at all. I'm also sorry to learn of
your young friend Ryan and he's in my prayers.
love,
Kathy
Thu May 5, 2005 02:45 PM ET
ROCKVILLE, Md., May 5 (Reuters) - A U.S. advisory panel on Thursday rejected
Johnson & Johnson's (JNJ.N: Quote, Profile, Research) pill Zarnestra for
treating elderly leukemia patients who have only months to live and are poor
candidates for chemotherapy.
The Food and Drug Administration panel voted 7-4 that Zarnestra should not
be sold for treating older patients newly diagnosed with acute myeloid
leukemia, or AML, who are too frail for chemotherapy and unlikely to benefit
from it. The FDA usually follows its panels' advice.
This is fabulous information. Thank you Zavie or Louis, or whoever first
introduced the article. I have lots of thoughts about it which I'll be
happy to share if I get the time.
Richard R
In a message dated 5/3/2005 4:07:08 P.M. Eastern Standard Time,
bob-stewart@... writes:
hell of a researcher who devoted a lot of
time to CML. I miss his e-mails and hope he's doing
well.
Oh me too!!! Without a doubt, Peter lent us quite a bit of time and
knowledge. Wish he would drop in once in a while.....have wondered about him for
a
very long time! - Lynne A.
Dear Nancy and MJ,
Thank you so much for replying to my question. I am considering trying
out his lab, and want to get all the ducks in a row before having my
next PCR test performed.
Thanks Again! Lynn (Snickersunny)
Dear Barb,
You, Tommy, your family and your generous donor are in my prayers.
Best wishes,
Adrienne
Barb Neddo <barb.neddo@...
Hi, all. Tomorrow is the big day - transplant day. Actually it is
pretty anticlimatic as the marrow is couriered (like an organ
transplant) from the donor to Minneapolis and then hung in an IV bag.
Then it travels through Tommy's hickman catheter into his bloodstream.
There will be a little blessing ceremony when he gets his transplant.
Then the waiting begins. Engraftment is when the marrow finds its way
to where it is supposed to go and "engrafts" and starts taking over as
the new immune system. This is the long part and the "bad days" for
Tommy (from what I understand).
I am asking that you say a special prayer tomorrow for Tommy and for
that most generous, anonymous 41 year old male donor who will truly be
"giving of himself". Thanks from the bottom of my heart to that person.
Barb Neddo
http://www.caringbridge.org/wi/tomneddo
Hi Lynn,
Here is the info you wanted:
You could always contact Dr. Druker's research nurse Carolyn, listed below,
but this was the info she sent me recently. The kit has all the
instructions for the lab.....and in your case, you would have it sent by
courier same day to OHSU.
I just went for a PCR blood draw on Monday.....it is 4 tubes of blood.
Nancy C.
If you need a kit shipped for the PCR sample, please contact Heather Leon
leonh@... re when you need it with date, shipping info etc. Then email
me also so I will know to watch for the results.
Carolyn Blasdel, RN, MA, OCN
Clinical Research Nurse for Dr. Brian Druker
Center for Hematologic Malignancies
Oregon Health & Science University
3181 SW Sam Jackson Park Rd., UHN-73C
Portland, Oregon 97239-3098
Phone: 503-494-1036
Fax: 503-494-3623
Email: blasdelc@...
Hey Susann,
You bring up a very good point, and I certainly understand wanting to
keep a low profile about your CML. However, one day out of sheer
boredom I happened to google my own name and Voila! Showing up under
Quitting Cancer Drugs
Doctors Test Whether Patients Can Safely Stop
Taking Targeted Therapies After Years of Use
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
May 3, 2005; Page D1
In a debate that has far-ranging implications for the most promising
new "smart drugs" in treating cancer, some doctors are now starting to
ask: Can patients ever stop taking them?
This is a question that rarely came up with standard chemotherapy
treatments, which often were so toxic that they either killed the
cancer or were stopped because of the potential harm to the patients.
The newer "smart drugs," such as Avastin, Gleevec and Tarceva, which
target only cancerous cells and leave normal ones unharmed, have
milder side effects. They often keep a tumor from growing but don't
completely eradicate it, raising the possibility that they may be
taken for years, possibly for the rest of someone's life, transforming
cancer into a chronic illness.
Many patients who have been on the drugs for years are starting to ask
their doctors when, if ever, they can stop. Some complain that even
the so-called mild side effects, such as fatigue, nausea, swollen eyes
and legs, among other issues, are difficult to endure on a chronic
basis. The drugs often are expensive. Novartis's Gleevec, for leukemia
and gastro-intestinal stromal tumors (GIST), and OSI Pharmaceuticals
Inc. and Genentech Inc.'s Tarceva, approved to treat nonsmall-cell
lung cancer, cost around $2,400 and $2,100 a month, respectively, at
wholesale prices. Genentech's Avastin, which is approved for
colo-rectal cancer, runs around $4,400 a month. Even people with
insurance can end up with large monthly co-payments.
Also, there is only scant data on the potential effects on a fetus, so
both women and men taking the drugs are advised not to have children,
a challenging issue for patients in their reproductive years.
Now, academic centers such as M.D. Anderson Cancer Center in Houston;
the French Sarcoma Group, an organization of 36 cancer institutions in
France and Switzerland; and the Australasian Leukaemia & Lymphoma
Group, a consortium of centers in Australia and New Zealand, are
launching clinical trials that will do something that once was
unthinkable. They will enroll patients with chronic myelogenous
leukemia (CML) or GIST whose cancer is either undetectable by blood
tests or hasn't grown for the past two to three years and see what
happens when some of them stop taking Gleevec.
REASONS TO STOP
Why some cancer patients quit taking so-called smart drugs:
Side effects: The drugs can cause fatigue, swollen eyes and
legs,
nausea and vomiting.
Fertility issues: Both women and men often are advised to
refrain
from having children while taking these drugs.
Cost: Even patients with insurance can have significant
co-payments,
which add up.
Drug resistance: Some tumors develop mutations that become
resistant
to the drug and require new therapy.
The current trials involve Gleevec in part because it was one of the
first smart drugs to win Food and Drug Administration approval, in
2001, and has a group of patients who have taken it for more than
three years. The questions raised in the trials go far beyond Gleevec
users and have implications for all such drugs. Many patients
eventually become "resistant" to cancer drugs -- GIST patients on
Gleevec have a particularly high rate but it's an issue for other
targeted therapies, too. One notion that researchers are exploring is
whether taking patients off a drug for a time will extend the life of
the drug's efficacy and perhaps delay resistance. Doctors who treat
patients with breast cancer also are looking into whether longer or
shorter durations of drugs such as Herceptin or Femara help prevent
the cancer from coming back.
"Every targeted therapy is facing the same key issue: How long do we
treat patients? Two years, five years, indefinitely?" says Brian
Druker, professor of medicine at Oregon Health & Science University
Cancer Institute in Portland and one of the developers of Gleevec.
Cases of Relapse
The trials raise ethical concerns because of data that have emerged
recently involving small numbers of patients from Oregon Health &
Science University in Portland, the French Sarcoma Group's
institutions and M.D. Anderson that indicated the vast majority of
those who stopped taking the drug quickly relapsed. All of these
patients restarted the drug and doctors say there is no evidence that
their overall survival odds are any worse than someone who never
stopped taking the drug. But two GIST patients in one study weren't
able to get their cancer back in control after restarting the drug and
saw their disease worsen; one has died.
Two years ago, Andreas Hochhaus of the University of Heidelberg in
Manheim started collecting cases of patients who, for various reasons,
had stopped taking Gleevec. The Registry on Patients Who Stop Gleevec
After Remission now contains 20 patients in the U.S. and in Europe.
"Almost all" relapsed, Dr. Hochhaus said. "I do not think people can
stop taking Gleevec at any point."
Diane Young, vice president of clinical development at Novartis
Oncology, says the company's position is that "right now we don't
really feel there is sufficient data to support that the drug can be
stopped safely in patients" who are doing well on it. Dr. Young said
the limited evidence that exists suggests that even patients whose
disease is undetectable using current tests may still have some
residual disease that can grow if the drug is stopped.
Intriguing Reports
The doctors setting up the current trials are being driven by the
small yet intriguing reports being published that showed some patients
were able to go off the drug and not relapse for extended periods of
time. Jean-Yves Blay, president of the French Sarcoma Group, presented
data at the American Society of Clinical Oncology annual meeting last
year involving 259 patients with GIST who were taking Gleevec. In an
interim report, Dr. Blay said 32 patients were taken off Gleevec to
see how they responded, and 24 of them saw their tumors start to grow
again. The median time to relapse was six months. Dr. Blay said he and
the other doctors recommended that everyone go back on the drug, but
as of February 2005, four patients refused to do so and still hadn't
relapsed after having been off for 12 to 14 months. Eventually, they
all started taking Gleevec again, because of encouragement from their
families. The group's doctors are studying the patients' tumors to see
if there is some kind of mutation in the proteins targeted by the
tumor that can be tied to the likelihood of relapse after stopping the
drug.
Dr. Blay said one question that remains is whether the patients would
have fared better if they had stopped after being on the drug for a
longer period of time. The patients in the first trial had been in
remission only for a median of two years. Later this year, he said the
French Sarcoma Group will start a new trial involving GIST patients
who have been taking Gleevec for three years with no sign of cancer
progression, to see if some of these patients no longer need the drug.
At M.D. Anderson, Jorge Cortes, deputy chairman of the department of
leukemia, is enrolling patients in a trial where they receive Gleevec
and interferon, rather than Gleevec alone. If the levels of leukemia
cells in their blood remain undetectable for two to three years, they
then will stop taking the drugs. The idea is "if we add other drugs to
the Gleevec, maybe it will improve their chances of staying in
remission once they stop taking Gleevec," Dr. Cortes said.
In a paper published in the journal Leukemia Research, a group of
doctors at Oregon Health & Science wrote about two patients who
stopped taking Gleevec. One of them asked to discontinue because of
worsening fatigue. She relapsed two months later. The second patient,
a 36-year-old woman diagnosed with leukemia in 2000, stopped taking
the drug after 17 months because she found out she was pregnant. One
year later, after delivering a normal child, the levels of leukemia
cells in her blood still were undetectable, according to the paper.
One month later, despite the fact that she still remained in
remission, she decided to go back on the drug after speaking with her
doctor.
Dr. Druker says her case and others show that "there is a potential
for differing outcomes when the drug is stopped."
Experience with Gleevec
This potential is what convinced Jennie Tilley to enroll in a
25-person trial expected to start this fall being run by the
Australasian Leukaemia and Lymphoma Group. Ms. Tilley, 63, was
diagnosed in 1995 with leukemia. She was initially treated with
interferon but had terrible mood swings and lost weight. She had a
bone-marrow transplant but her leukemia counts kept rising. In 2001,
she went on Gleevec. Her disease has been undetectable since 2003.
Ms. Tilley, who lives in Port MacDonnell in the southern part of
Australia, said she has suffered side effects from the Gleevec. She
gets constant subcutaneous eye hemorrhages, which she says are very
painful and feel "like a hot needle is going through your eye." Her
hair "pulls out in chunks," she said. But she said she was most
concerned by a recent study done by Novartis showing an increased
frequency of genitourinary tumors in rats treated with Gleevec daily
for 24 months. Ms. Tilley said the report reminded her that "they
don't know the long-term effects of taking this drug because it is so
new."
Novartis's Dr. Young says the rat study is continuing, but that in
safety data from more than 9,000 patients, there hasn't been findings
of increased incidence of any kind of tumor. She added that the
company did send out a letter to physicians in November 2004 about the
rat data and updated the Gleevec label to reflect the findings.
Ms. Tilley said the knowledge she can go back on the drug if her
counts go up, and that others who have done this have been able to get
the cancer back into control, made her feel that, "I've got a
parachute."
Write to Amy Dockser Marcus at amy.marcus@...
Springtime in a Galveston Cemetery
http://www.mavican.nu/phpbb/viewtopic.php?t=51073
Hi Everyone,
While searching for a job, I have had many questions about how or even if to
approach the subject of CML. In reality, I have trusted my intuition and
particular situations to make that decision -- what to tell and how much. In
truth, a disabilities lawyer here in DC met with a group of patients with all
types of cancers and basically said, "Don't ever tell a potential employer or
one you already have unless you absolutely require some work accommodations."
Anyway, if you have questions as I did, perhaps this website will help. L&LS
sent it to me. You are not required to tell them anything about CML, btw. You
probably already know that. Since my health is good and I only require a doc
appt. every 2 weeks, there's no reason to bring it up.
This is a general site about cancer and employment
http://www.cancerandcareers.org
Best,
Susan L
Hey Cheryl,
Thanks for posting this. There was an abstract about PD166326 at ASH 2003,
and it's interesting to see that work is still being done on it. What's not
clear from the abstract is whether it's effective against the T315I mutation
(which is resistant to IM, AMN 107 and BMS-354825).
The number of new agents and combination therapies being studied is also
becoming something of a problem, I understand: it's getting hard to recruit
enough patients to each of the studies. It will be interesting to see how
this plays out. I note that no mention is made here of upcoming trials for
PD166326....
Cheers,
Richard R
PS - I met Ruth Marcon in Allentown PA today - what a great lady! She
didn't know about this list so I told her. I gather she hasn't been
following any of the lists lately, but she wondered where a number of us had
gone.
For those of you who subscribe to the Asian CML list
Hi Yrulooknback,
If the stroke was of the hemorrhagic type (a bleed into the brain, rather
than a clot), then it could have been caused by the aspirin - but not if it
was caused by a clot, which aspirin can help prevent. The CT or MRI can
usually make this distinction, so you might ask your doc which sort of
stroke it was.
I'm glad it was a mild one, and hope you recover completely.
Yours,
Richard R
Dear Lisa,
Yup, motrin is fine with IM (that's what you mean, I assume). It's probably
not a good idea to take it within a couple of hours if IM though, and drink
any alcohol within at least 4 hours either. Do take it with food. Alcohol,
IM and motrin (and all the so-called NSAIDs, or "non-steroidal
anti-inflammatories) all irritate the stomach lining; taken together they
could cause a stomach ulcer - or at least some pretty severe heartburn.
Best,
Richard R
Another good article. Thanks again, Cheryl. The findings of this one (that
certain mutational variants of BCR-ABL are MUCH more sensitive to the new
drug, but that others are more sensitive to IM) suggest that in the
not-too-distant future part of the initial workup for CML may be mutation
testing, which will direct patients to the drug most likely to knock it out.
I'll take it!
Richard R
Thank you for the post Louis
THE WALL STREET JOURNAL, 05/03/2005
By Amy Dockser Marcus
In a debate that has far-ranging implications for the most promising
new "smart drugs" in treating cancer, some doctors are now starting
to ask: Can patients ever stop taking them?
This is a question that rarely came up with standard chemotherapy
treatments, which often were so toxic that they either killed the
cancer or were stopped because of the potential harm to the patients.
The newer "smart drugs," such as Avastin, Gleevec and Tarceva, which
target only cancerous cells and leave normal ones unharmed, have
milder side effects. They often keep a tumor from growing but don't
completely eradicate it, raising the possibility that they may be
taken for years, possibly for the rest of someone's life,
transforming cancer into a chronic illness.
Many patients who have been on the drugs for years are starting to
ask their doctors when, if ever, they can stop. Some complain that
even the so-called mild side effects, such as fatigue, nausea,
swollen eyes and legs, among other issues, are difficult to endure on
a chronic basis. The drugs often are expensive. Novartis's Gleevec,
for leukemia and gastro-intestinal stromal tumors (GIST), and OSI
Pharmaceuticals Inc. and Genentech Inc.'s Tarceva, approved to treat
nonsmall-cell lung cancer, cost around $2,400 and $2,100 a month,
respectively, at wholesale prices. Genentech's Avastin, which is
approved for colo-rectal cancer, runs around $4,400 a month. Even
people with insurance can end up with large monthly co-payments.
Also, there is only scant data on the potential effects on a fetus,
so both women and men taking the drugs are advised not to have
children, a challenging issue for patients in their reproductive
years.
Now, academic centers such as M.D. Anderson Cancer Center in Houston;
the French Sarcoma Group, an organization of 36 cancer institutions
in France and Switzerland; and the Australasian Leukaemia & Lymphoma
Group, a consortium of centers in Australia and New Zealand, are
launching clinical trials that will do something that once was
unthinkable. They will enroll patients with chronic myelogenous
leukemia (CML) or GIST whose cancer is either undetectable by blood
tests or hasn't grown for the past two to three years and see what
happens when some of them stop taking Gleevec.
The current trials involve Gleevec in part because it was one of the
first smart drugs to win Food and Drug Administration approval, in
2001, and has a group of patients who have taken it for more than
three years. The questions raised in the trials go far beyond Gleevec
users and have implications for all such drugs. Many patients
eventually become "resistant" to cancer drugs -- GIST patients on
Gleevec have a particularly high rate but it's an issue for other
targeted therapies, too. One notion that researchers are exploring is
whether taking patients off a drug for a time will extend the life of
the drug's efficacy and perhaps delay resistance. Doctors who treat
patients with breast cancer also are looking into whether longer or
shorter durations of drugs such as Herceptin or Femara help prevent
the cancer from coming back.
"Every targeted therapy is facing the same key issue: How long do we
treat patients? Two years, five years, indefinitely?" says Brian
Druker, professor of medicine at Oregon Health & Science University
Cancer Institute in Portland and one of the developers of Gleevec.
The trials raise ethical concerns because of data that have emerged
recently involving small numbers of patients from Oregon Health &
Science University in Portland, the French Sarcoma Group's
institutions and M.D. Anderson that indicated the vast majority of
those who stopped taking the drug quickly relapsed. All of these
patients restarted the drug and doctors say there is no evidence that
their overall survival odds are any worse than someone who never
stopped taking the drug. But two GIST patients in one study weren't
able to get their cancer back in control after restarting the drug
and saw their disease worsen; one has died.
Two years ago, Andreas Hochhaus of the University of Heidelberg in
Manheim started collecting cases of patients who, for various
reasons, had stopped taking Gleevec. The Registry on Patients Who
Stop Gleevec After Remission now contains 20 patients in the U.S. and
in Europe. "Almost all" relapsed, Dr. Hochhaus said. "I do not think
people can stop taking Gleevec at any point."
Diane Young, vice president of clinical development at Novartis
Oncology, says the company's position is that "right now we don't
really feel there is sufficient data to support that the drug can be
stopped safely in patients" who are doing well on it. Dr. Young said
the limited evidence that exists suggests that even patients whose
disease is undetectable using current tests may still have some
residual disease that can grow if the drug is stopped.
The doctors setting up the current trials are being driven by the
small yet intriguing reports being published that showed some
patients were able to go off the drug and not relapse for extended
periods of time. Jean-Yves Blay, president of the French Sarcoma
Group, presented data at the American Society of Clinical Oncology
annual meeting last year involving 259 patients with GIST who were
taking Gleevec. In an interim report, Dr. Blay said 32 patients were
taken off Gleevec to see how they responded, and 24 of them saw their
tumors start to grow again. The median time to relapse was six
months. Dr. Blay said he and the other doctors recommended that
everyone go back on the drug, but as of February 2005, four patients
refused to do so and still hadn't relapsed after having been off for
12 to 14 months. Eventually, they all started taking Gleevec again,
because of encouragement from their families. The group's doctors are
studying the patients' tumors to see if there is some kind of
mutation in the proteins targeted by the tumor that can be tied to
the likelihood of relapse after stopping the drug.
Dr. Blay said one question that remains is whether the patients would
have fared better if they had stopped after being on the drug for a
longer period of time. The patients in the first trial had been in
remission only for a median of two years. Later this year, he said
the French Sarcoma Group will start a new trial involving GIST
patients who have been taking Gleevec for three years with no sign of
cancer progression, to see if some of