Re: [cml 2] A little worried.

2008-04-30 23:05:41

Hi James,
I understand completely what you are saying and my husband I have been
struggling with the very same issues. He was dx in Sept '06 with his
counts dropping - ANC - 0.6 and we resisted him being taken off- His
Dr gave him 3 days to see if the neutrophils to come up or he would
be taken off Gleevec until a rise...and after 3 days of praying and
willing it to come up - it did - sounds unreal but came up to 2.4. We
were all amazed. Now it is declining again - down to 1.2 today...It s
a hard situation- managing the side effects or the disease. I am
waiting to see if his counts drop further or start to come back up.
Have you been sick recently? That would account for dropped counts.
How low is you ANC? How are you feeling? What about your hemoglobin?
I hope you get some answers that you need and those neutrophils jump
up nicely..
shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley

Re: [cml 2] Where can I find articles or info?

2008-04-30 11:40:51

cam on first dxt the usual is 400 unless bad side affects to get count down and
get the big 0 Are you in us!

A little worried.

2008-04-30 10:45:01

I've been on Gleevec since August '06 (198WBC at dx) and have been
doing great as far as counts improving with little to no side effects.
The problem is, my WBC and neutrophils have kept slowly dropping to
the point that my Onc wants me to stop taking Gleevec and get back on
the weekly CBC regimen (aka human pin cushion). Tonight is my first
night without Gleevec.
I've read lots of view points here about those with low WBC and
neutrophils, lots of talk about NOT stopping Gleevec dosage and
getting a shot of the neupogen. I'd like to hear from anyone who went
through the low WBC/ANCs, what they learned, how they are doing, etc.
I'm hoping this time off is a one time thing, but my logic tells me if
Gleevec is making my counts decline now, why wouldn't it do that in
the future when the counts come back up?
Thanks in advance for your replies.
James

Where can I find articles or info?

2008-04-30 09:25:53

Hello everyone,
Right now my doctor has me on 200mg of Gleevec due to low blood counts. I want
to
convince him that I need a higher dose. Where can I find articles or info where
some top cml
doctors have said that low doses are not good? I have been looking online but I
can't seem to
find anything.
Cam

Re: [cml 2] Digest Number 601

2008-04-29 20:49:54

Hey Group:
CONGRATS. . .Rah, Rah, Rah. . . to you and your daughter. Once again, my faith
in my gold is renewed as it is time and time again.
My Newbie sister & brother survivors must 'stick & stay' with the known. Our
gold is doing what it was researched and developed to do; 'tried & true'. We
cannot have our bug and be side effect free. . .though I am glad that some of us
are. . .but statistically. . .'nay'.
Dane. . .CONGRATS. . .100% donor. . .FANTASTIC!!!
All are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

CML Society Patient Meeting- Post ASH

2008-04-29 13:09:50

(English message Follows the French version)
Bonjour a tous,
Suite a mes récentes communications, il y aura une réunion concernant les
nouvelles provenant de ASH, a Montréal. Nous aurons aussi la chance de nous
réunir pour échanger de nos nouvelles. Cette rencontre aura lieu le 21
janvier 2007 et commencera vers 1:15. Vers 2:30, nous aurons l'opportunité
de faire du social. Dr. Pierre Laneuville ainsi que Dr. Jeffrey Lipton nous
informeront des nouvelles de ASH et je vous donnerai des informations
concernant les activités futures de la Société LMC.
La rencontre aura probablement lieu au Marriott a Ville St. Laurent, Québec
Nous attendons cependant la confirmation. Par contre, pour pouvoir réserver
une pièce de la bonne grandeur ainsi que pour pouvoir avoir suffisamment des
rafraîchissements (gratuit, évidemment) j'ai besoin de savoir le nombre de
participants.
Pouvez vous me confirmer votre présence en répondant a cet e-mail?
A bientôt et au plaisir de vous voir a nouveau.
Cheryl-Anne
Hello All,
Further to my previous communications, there will be a "Post ASH" meeting in
Montreal with an opportunity to socialize, on January 21, 2007. The meeting
will start at around 1:15 PM and after about 2:30 we will have time to
socialize. Dr. Pierre Laneuville and Dr. Jeffrey Lipton will provide some
updates from ASH and I will provide some updates on upcoming activities for
the CML Society.
The meeting will more than likely take place at the Marriott Hotel in Ville
St. Laurent, Quebec, we are just waiting for a confirmation. However, in
order to book the right size room with the right amount of refreshments
(provided free, of course) I need to know how many will be attending.
Could you please confirm your presence to me by reply e-mail.
Cheers and looking forward to seeing everyone again.
Cheryl-Anne

rate your doctor website

2008-04-29 10:30:50

Hi Everyone,
I came across this website and thought I'd share it. You can check out
various doctors in both the US and Canada and see how people rated
them (there's a little icon on the left side for the Canadian doctors).
I've checked for the big names in CML and most weren't listed but you
may be able to find your family doctors or other doctors that would be
of interest to you.
http://www.ratemds.com/index.jsp
Tracey

Re: G. sideeffects vs. change to sprycel

2008-04-29 07:45:45

Hello Sue, Mom of Jennifer
I am Annie, Mom of Steven, 23 years old, dx'd last year 6th March,
doing very well on 400mg gleevec. He is one of the 'lucky' cml-ers
with no remarkable side effects except a newly found lease of
life! :-)
I heard your smile in this email and just had to respond with a big
cyber *HUG*.
May Jennifer and Gleevec whip those phillies right into submission
and make them extinct! I know this will put a special kind of peace
into your life......
And yes, Lottie is wonderful! :-)
With love and understanding
Annie
www.livingwithcml.blogspot.com
horrendous side effects she was having on Gleevec, 800 mg. But a
wonderful thing happened....after 18 months she finally went into a
3-log reduction! Those allusive Phillies are finally succumbing the
Gleevec. We are so overjoyed and relieved. Yep, she still has
debilitating side effects but this is about fighting cancer and she
is winning THAT fight. She will continue to try to find ways to
have a good quality of life while fighting this battle. We are
overjoyed about the 3-log and her doctor at OHSU feels she should
stay on the Gleevec afterall and we are in agreement.
5/28/05, changed to 800 mg. late september 2006. 3-log december
2006.

causes

2008-04-28 19:41:49

Hi Tracey,
Of course, it is easy for me to blame procedures from my past for my cml. I
needed to be reminded that there are many others, like you, who have no
radiation or chemo in their past. Maybe my cml came from some of those
procedures and maybe it didn't. I guess it's just natural to wonder why I got
it.
Unfortunately, we have it, so does it really matter? I'm glad to know it is an
acquired disease and not an inherited one. There is some comfort in knowing
it doesn't get genetically passed on to our kids.
Nancy in NY

G. sideeffects vs. change to sprycel

2008-04-28 14:57:27

David and Others:
My daughter was all set to switchto Sprycel due to the horrendous side effects
she was having on Gleevec, 800 mg. But a wonderful thing happened....after 18
months she finally went into a 3-log reduction! Those allusive Phillies are
finally succumbing the Gleevec. We are so overjoyed and relieved. Yep, she
still has debilitating side effects but this is about fighting cancer and she is
winning THAT fight. She will continue to try to find ways to have a good
quality of life while fighting this battle. We are overjoyed about the 3-log and
her doctor at OHSU feels she should stay on the Gleevec afterall and we are in
agreement.
And Lottie, I want to thank you again for all the information and support you
provided.
Sue...mom of Jennifer, age 34, diagnosed 5/13/05, gleevec 600 5/28/05, changed
to 800 mg. late september 2006. 3-log december 2006.

Thanks for your encouraging words

2008-04-28 10:51:57

Thanks for all your kind words regarding my recent 2 years post BMT
test results.
Dane

Re: [cml 2] radiation

2008-04-28 00:33:08

Nancy;
You x-rayed but i didn't. Or there are people x-rayed more then you but living
very very healty. I used to smoke but there are people here who never smoked. I
have friends smoking very much but very healthy.
I think we have CML because this is our destiny. God wants it that way. Dont
try to blame yourself or anyone or anything. Its our destiny to fight.
Yusuf Cipe
nchando@... wrote:
I was reading the posts about radiation with interest. 10 years before
my
cml diagnosis I had some medical problems. Doctors couldn't find out what was
causing a pleural effusion that I had. I was given many ct scans and
x-rays. I was hospitalized with a chest tube and x-rayed daily for weeks. I
remember saying" I'm going to glow in the dark." Eventually, I was diagnosed
with
ovarian cancer of low malignant potential (a slower growing type). I had
surgery and chemo. I recuperated and was fine until my cml diagnosis many
years later. I blame all the radiation from the scans and x-rays, or maybe the
chemo for the cml. What do you think?
Nancy in NY
dx. Jan. 04
400 mg. Gleevec

Your BMT Results

2008-04-27 18:19:50

Dear Dane:
It's wonderful that your second after-BMT year brought you the best results
you could ever wish for! You are over the hump and life can only get better
now. Congratulations!
Margot

Chat Reminder - Saturday 9:00 AM EDT

2008-04-27 17:46:06

Chat Reminder - Saturday 9:00 AM EDT

Re: [cml 2] Denise

2008-04-27 06:27:55

Nancy:
Did you make a post earlier this week about people having trouble getting
back on Gleevec if they had been off of it? I saw an article last year in the
WSJ that stated that people with GIST that take Gleevec were found unable to
get back on Gleevec, but is there data regarding people with CML? I thought
that that specific article noted that CML patients were able to "restart"
where GISTs patients were not.
I ask this in light on the post on "Pulse Therapy" and certain protocols
that allow for G-Holidays.
Thanks for the clarification.
Matt
Florida
DX January 2005

Denise

2008-04-27 00:09:12

Hi Denise,
if you prefer you can elect to get a digest instead of all the individual
e-mails on
any of the CML lists.......this way you get usually one e-mail a day with
all the
separate e-mails posted in a line........disadvantage is that you cannot
respond
to e-mails as they are posted.......but it is an option.
Nancy C.

Oral Chemotherapy Needs Guidelines/article

2008-04-26 22:41:47

LONDON (Reuters) - Clear, standardized guidelines are needed for
giving oral chemotherapy drugs to iron out inconsistencies in how
patients are given the drugs and monitored, researchers said on Friday.
A survey of 42
National Cancer Institute-designated treatment centers in the United
States revealed that while oral chemotherapy drugs were widely
prescribed there were variations in the way they were prescribed,
coordinated and monitored.
Ten of the centers that responded reported at least one serious
adverse event linked to oral chemotherapy in the past year and 13 had
a serious near miss. No details were given.
"The growing availability of effective oral chemotherapy, especially
the new class of targeted biologic therapies, is one of the wonderful
advances in cancer care, as it has given cancer patients unprecedented
convenience compared to intravenous infusion therapy," said Dr
Lawrence Shulman, of the Dana-Farber Cancer Institute in Boston,
Massachusetts.
"However, these findings underline the importance of forging a
consensus in the oncology field on standardized safeguards and
practices for prescribing and monitoring the use of these drugs," he
added in a statement.
The survey conducted by the institute and published online by the
British Medical Journal revealed inconsistencies in prescribing the
treatment and recording the dosage.
Many centers had no formal system for monitoring patients taking the
drugs which are becoming increasingly popular internationally.
"Given how quickly oral chemotherapies have become standard care for a
growing number of cancers, we were not surprised to find variations in
how organizations prescribe and monitor the use of these agents," said
Dr Saul Weingart, the president of patient safety at Dana-Farber.
"It is surprising, however, that few of the safeguards used with
infusion chemotherapy have been adopted for oral chemotherapy."

Re: A Great Way To Start The Year!

2008-04-26 18:45:27

Hi Dane -- Congratulations! Such good news -- and I'm so happy for
you.
Kathy
dx 5/03

Re: Houston Texas

2008-04-26 07:01:38

Hi Denice,
Statistically speaking, there are far more Americans on this list
than any other group but for some reason, the Canadians do seem to do
a lot of the posting. I guess we're a chatty bunch :)
Tracey

Re: radiation

2008-04-26 04:37:06

Hi Nancy,
If I was you, I'd have come to the same conclusions that you have. I
don't think one xray here or there will cause any problems but
regular xrays cannot be good for anyone.
It's a double edge sword though because without the scans, you can't
know what's going on inside your body which could potentially save
your life if they find something operable. On the other hand, all
that radiation opens you up to potential problems later.
In your case, I'm sure the radiation didn't help you but then it
doesn't explain how most of us got CML. I didn't even have dental
xrays before I was diagnosed so I certainly can't blame any radiation
for my CML. I find it especially frustrating not knowing what caused
my disease because I can't identify anything in particular to avoid.
Take care,
Tracey
dx Jan 2002
400mg Gleevec

Houston Texas

2008-04-26 02:16:42

So much of the email comes from Canada and other states, I was wondering if any
members of this group live in Houston.
If so, I would like to establish an informal social/support group, if there is
any interest.
An ear and a laugh is so important for all of us!
God bless all,
Denice

Re: [cml 2] A Great Way To Start The Year!

2008-04-25 19:24:16

CONGRATULATIONS!!!! I am sure you and yours are elated.
God bless,
Denice
Dane <dane714@...
Hi all...
As I close in on the 2 year post BMT mark, I am happy to write that my
January tests came back PCR Negative and 100% Donor Cells. The last
tests, done in October 2006 were also PCR Zero and 100% Donor. This
makes 6 months in a row at zero! In total, I have been at zero for at
least the last 6 months! I'm feeling better than I have felt since
dagnosis back in 2000. Hallelujah.
Dane Tessler

A Great Way To Start The Year!

2008-04-25 13:51:55

Hi all...
As I close in on the 2 year post BMT mark, I am happy to write that my
January tests came back PCR Negative and 100% Donor Cells. The last
tests, done in October 2006 were also PCR Zero and 100% Donor. This
makes 6 months in a row at zero! In total, I have been at zero for at
least the last 6 months! I'm feeling better than I have felt since
dagnosis back in 2000. Hallelujah.
Dane Tessler

radiation

2008-04-25 08:46:52

I was reading the posts about radiation with interest. 10 years before my
cml diagnosis I had some medical problems. Doctors couldn't find out what was
causing a pleural effusion that I had. I was given many ct scans and
x-rays. I was hospitalized with a chest tube and x-rayed daily for weeks. I
remember saying" I'm going to glow in the dark." Eventually, I was diagnosed
with
ovarian cancer of low malignant potential (a slower growing type). I had
surgery and chemo. I recuperated and was fine until my cml diagnosis many
years later. I blame all the radiation from the scans and x-rays, or maybe the
chemo for the cml. What do you think?
Nancy in NY
dx. Jan. 04
400 mg. Gleevec

Good News

2008-04-24 23:37:31

Sorry I was unclear...I was just very excited that she got the remission news
today. She has been back on the Gleevec for about a month and she's doing
better on it than she was. She had to be built up to the 400mg she's on now and
she is tolerating it with little discomfort. She was having leg cramps to the
point that she could barely walk and since they let her take 100mg then 200 and
300 she has done better. Thanks so much
doveh12 <deh12@...
Dear Stacey,
Congratulations to you and your mother. It's unclear from your post,
however, whether she is still off the Gleevec or whether she's resumed
taking it.
If she can't tolerate Gleevec and is still off it, has her doctor
considered trying her on Sprycel? It's always been my understanding
that, if left untreated, CML in remission will very likely return, and
possibly in a more resistant form. Some patients who have had trouble
with Gleevec have responded better to Sprycel.
Maybe I'm not telling you anything you don't already know, but it
concerned me that your mom might not be receiving any treatment.
Please explore this further with her doctor. If I've misunderstood
your message, then disregard what I've said and just accept my
congratulations.
I wish you all the best.
Warm regards.
David

RE: Good News

2008-04-24 12:30:22

My mother was diagnosed in September 06 with CML and started Gleevec
in about October and was taken off of it due to side effects. She has
been doing pretty good on it and her checkup results today say we are
in remission. Thanks for the group and all the advice.

Re: New and wanted to share story(long)

2008-04-24 04:41:32

Hi Cindy,
You and Jared are not alone. We have a couple of members who had
transplants but relapsed after a while and are now on Gleevec. They
are all doing fantasticaly so try not to worry. I hope one of them
will write in to share their story with you but I know that a few of
them are doing so well, that they've gotten back to living and have
no need for the support groups anymore.
If you have any specific questions, don't hesitate to ask but in the
mean time, you should know that you're not alone and you have every
reason in the world to be hopeful. Gleevec is a marvelous drug and
there has been a huge amount of progress in treating CML so the
future looks very bright for us.
Take care,
Tracey
dx Jan 2002

Cold Medicine

2008-04-23 23:41:10

I would stay away from anything with Tylenol in it because that is
processed in the liver and my Gleevec info states to not take Tylenol.
I have used Sudifed since being on Gleevec without a problem.

New and wanted to share story(long)

2008-04-23 22:54:26

Hello everyone,
My name is Cindy and my husbands name is Jared. Jared was dx with CML
in January of 2002. He had a BMT in April of 2002 because he had a
brother that matched and that is what our doctor recomended for us to
do. We had some major GVHD problems and after three long years Jared
went back to work. The last two years have gone pretty well and we
even got a suprise little baby. We didn't think we could have any more
kids after going through the BMT. We finally felt like life was
getting back to normal. Well that is not in the cards. We just found
out that his CML is back and so now we are starting all over again. We
have decided to give the Gleevec a try instead of trying to give Jared
GVHD again. We are hoping Gleevec will be affective. (He has not
started the Gleevec yet because we are waiting for insurance
approval). Jared is going through some major depression right now and
I am hoping we can find some support from others as we start on this
road again. You all seem very kind and I hope to get to know you all
better. Thank you for reading.
Cindy

CML FAQ

2008-04-23 14:21:09

This is an FAQ list that is found in the files section of our group
but I thought it might be helpful if I posted it seeing as there have
been several newbies join lately.
Tracey
How does Gleevec work?
Gleevec is an abl tyrosine kinase inhibitor that also inhibits PDGF
and c-kit enzymes. The BCR/ABL oncogene in CML codes for an abnormal
protein tyrosine kinase enzyme called bcr/abl. This abnormal enzyme
uses ATP to phosphorylate downstream effector enzymes, which then
stimulate the myeloid cells to grow out of control. Gleevec works by
blocking the ATP from binding to the bcr/abl enzyme which in turn
prevents phosphorylation thus inactivating the proliferation of cells.
What is the normal dosage for Gleevec?
According to the Novartis prescribing information, the standard dose
for a newly diagnosed patient in chronic phase is 400mg. For
Accelerated and blast phase patients, the standard dose is 600mg.
New trials are exploring the benefit of having chronic phase, newly
diagnosed patients on 800mg doses.
When is the best time to take Gleevec?
The best time to take Gleevec is with your biggest meal and with a
large glass of water. Preferably ¾ of the way through the meal.
Avoid lying down for 2 hours after taking Gleevec to avoid acid
reflux.
Are there any food or drug interactions with Gleevec that I should
know about?
Patients should avoid eating grapefruit or drinking grapefruit
juice. It is also advised to avoid using Tylenol and other drugs
that compete with Gleevec for liver metabolism. There are a number
of websites available to check for contraindications including:
http://www.drugs.com/
http://health.discovery.com/encyclopedias/checker/checker.jsp?
jspLetter=A
I'd like to take some natural herbs and/or vitamins but worry about
interactions, where can I get more information on this?
Memorial Slone Kettering Cancer Center has a great website that you
can refer to. St. John's Wort is known to be contraindicated with
Gleevec and patients have also been told to avoid Echinacea.
http://www.mskcc.org/mskcc/html/11570.cfm
How will I know if Gleevec is working?
The only "fool proof" way of knowing if Gleevec is working, is to
have a cytogenetic analysis from a BMB/BMA sample to check for the
Philadelphia chromosome. Regular CBC's will give you a good picture
of what's happening but changes in your marrow could happen long
before they show up on a CBC. Also, you could have normal blood
counts but still be 100% ph+.
What are the different levels of responses?
The first level of response is a haematological response. This is
when your blood counts return to normal. The second level of
response is a cytogenetic response. This is when the number of
Philadelphia chromosomes is reduced. If the number of ph+ cells is
above 35% but below 95% it is considered a cytogenetic response. If
the number of ph+ cells is between 5% and 35% then it is considered a
major cytogenetic response (MCR). If the number of ph+ cells is 0%
it is considered a complete cytogenetic response (CCR). A molecular
response can only be determined from a PCR test.
How long will I have to take Gleevec?
Current information indicates that patients will have to remain on
Gleevec for the rest of their lives. Anecdotal evidence from those
who have voluntarily (and against their doctors recommendations)
stopped taking Gleevec, have relapsed and some even became resistant
when trying to restart Gleevec. Do not stop taking Gleevec without
consulting your doctor and understanding the risks.
What do I do if Gleevec doesn't work or stops working?
There are several drugs in clinical trials for patients who are
resistant or intolerant to Gleevec. These drugs are showing lots of
promise for these patients and research is always on going. Check
out the links site for more information on clinical trials.
If I've had a complete cytogenetic or molecular response am I cured
or in remission?
The terms "remission" and "cured" aren't really used in CML. Just
because a particular test doesn't show any evidence of the leukemia,
it doesn't mean that there aren't any leukemic cells lurking around.
Infact, there could be as many as a billion leukemic cells still
floating around just waiting for the opportunity to proliferate if
given the opportunity (the cessation of Gleevec). The CML is
considered "controlled" (not cured) if the patient has responded to
the treatment.
What does it mean to be intolerant to Gleevec?
Intolerance can mean a variety of things. It can be used to describe
someone who has had their blood counts drop too low and remain
unstable for a period of time (usually months). This could include
the WBC, RBC and/or platelets. Intolerance can also mean that liver
or kidney function is severely impaired and cannot stabilize or that
the side effects of the drug are too much for the patient to handle.
My WBC is below normal, should I stop taking Gleevec?
The WBC isn't as important as the ANC (absolute neutrophil count).
According to the prescribing information that Novartis puts out,
Gleevec should be stopped only if the patient's ANC falls below 1 for
chronic phase patients then it should be reinstated when the ANC
rebounds to 1.5. For accelerated phase patients, the dosage should
be reduced to 400mg if the ANC drops below 0.5. There are other
ways to deal with neutropenia such as adding a growth factor while
remaining on Gleevec. These options should be discussed with your
doctor.
My Platelets are below normal should I stop taking Gleevec?
According to the Novartis prescribing information, Gleevec should
only be stopped if the patient's platelets drop below 50 for chronic
phase patients and reinstated when it rebounds to 75. For
accelerated phase patients, the dosage should be reduced to 400mg if
the platelets drop below 10.
Besides a CBC are there any other tests I should have?
It is wise to have liver and kidney function tests periodically
because Gleevec can cause hepatoxicity and renal toxicity. It is
also recommended to have your electrolytes checked as Gleevec has
been known to deplete potassium and phosphorus supplies among others.
What can I do about the side effects I have from Gleevec?
There are many possible side effects and many possible treatments for
them. Here is a great resource for dealing with side effects:
http://www.cmlsupport.com/cmlgleevecsideeffectsguide.htm
Where can I get good information on CML? (Links)
General Info:
http://www.cmlsupport.com/
http://cml.tlls.org/CMLApp/Controller
http://www.cancer.ca
http://www.cancer.org
http://www.leukemia-lymphoma.org/hm_lls
http://www.pharma.us.novartis.com/product/pi/pdf/gleevec_tabs.pdf
(Gleevec prescribing Information)
Medical Journals and Websites:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? (PubMed)
http://www.hematology.org// (ASH)
http://www.medscape.com/px/urlinfo (Medscape)
http://www.hemonctoday.com/default.asp?article=hothome.asp (Hem/Onc
Today)
http://www.bloodjournal.org/ (Blood Journal)
Clinical Trials:
http://clinicaltrials.gov/
http://www.ctg.queensu.ca/trials/default.html (Canada)
Online Support Groups:

Cold medication.

2008-04-23 04:14:57

I have a quality cold going on. Are there any OTC cold medications to
stay away from when on Gleevec?
Thanks.

Re: CML Glossary

2008-04-23 03:36:31

Tracey thank you so much for all your information I was dx on Oct.06.
and I don't post to much but I read everything everyone posts I am
thankfull and greatfull for all of you it takes some of the fear of the
unknown away .
THANKS AGAIN
Esther

AN HMO MANAGER AT THE PEARLY GATES

2008-04-22 16:37:49

Two Doctors and an HMO manager died and lined up at the pearly gates for
admission to heaven. St. Peter asked them to identify themselves.
One doctor stepped forward and said, "I was a pediatric spine surgeon and
helped kids overcome their deformities." St. Peter said, "You can enter."
The second doctor said, "I was a psychiatrist. I helped people rehabilitate
themselves." St. Peter also invited him in.
The third applicant stepped forward and said, "I was an HMO manager. I helped
people get cost-effective health care." St. Peter said, "You can come in, too."
But as the HMO manager walked by, St. Peter added, "You can stay three days.
After that, you can go to Hell."
"K"
"I AIN'T FINISHED YET"!!!

Re: I'm finally back on Gleevec

2008-04-22 13:18:57

Hi Cam,
I was told that 300mg per day was starting dose.
I have been on Gleevec for about 2 1/2 years and was taking 500mg per
day but my levels were off so I am now on 600mg per day and finding it
very hard to adjust to.
I am very fatigued and nauseated every day.
Hope everything works out for you!
Regards,
Terry

I'm finally back on Gleevec

2008-04-22 09:05:08

After 17 weeks of waiting for my blood counts to come up, I am finally
back on Gleevec. It's kind of weird how excited I am about TAKING
medication. My platelets and neutrophils are in normal range now. I am
just waiting for my hemoglobin to come up--it's at 81 right now. My
doctor told me to go ahead and start off on 200mg. From other posts
and info that I have read it seems to recommend taking no less than
400mg of Gleevec. Less build resistance to the drug? Am I correct? I'm
not sure what questions to ask my doctor. What are everyone's thoughts
about a 200mg dose?
Cam

Re:Participation and feeling guilty.

2008-04-22 04:21:32

Hey Group:
Jmace, don't ever feel guilty; I'm in a position 'battling' my many illnesses
that I am only able to 'sit & register' those participating; as I was always one
who 'did'. Now I have learned to sit and let those who can 'do'.
Annie, CONGRATS on Steve's reaching '0' . . .
Thanx Nancy (gf) for your post to Jim also, he's gonna have many years to be
here for our sister & brother survivors.
That's the main reason I hang around and send my NEWBIE letter out; its my way
of contributing.
All are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Re: [cml 2] Swelling in ankles

2008-04-21 21:53:15

This should be brought to her doctor's attention.
IF she had a high white count when she started on Gleevec, then all the
cell breakdown (killing of the leukemia cells) could give her increased
uric acid and this can cause gout, which can occur in the ankles. If her
white count was higher than 20,000 when she started Gleevec, the
specialists also put you on allopurinal to get rid of the uric acid. The
redness sounds like inflammation....which is why I think she may have gout.
Nancy C. (retired physical therapist)

Re: Swelling in ankles

2008-04-21 21:25:28

I got Gout big time! I was even on Allopurinol for weeks before even
starting Gleevec. My WBC at dx was 195. Gout is a horrible thing.

Swelling in ankles

2008-04-21 10:13:04

My sister has been on Gleevec 400mg for a week now and is complaining of
extreme swelling in her ankles. It is also red.
Is this a normal side effect? What is the best treatment?
Thanks,
Iris

CML Society- Jan 21st, 2007

2008-04-21 03:20:02

Happy New Year All!
Just a reminder that there will be a general meetin (post ASH) for interested
patients on Sunday Jan 21st in Montreal, Quebec.
The meeting will directly follow the CML patient advisory meeting. I am
delighted that we have so many keen fellow CMLers to help us in this important
first step in meeting this years objectives.
More details to follow by this Friday. Stay tuned!
In the meantime if you would like additional information you may contact me at
cheryl.simoneau@...
Cheers,
Cheryl-Anne
Sent from my BlackBerry® wireless device

Re: [cml 2] Emailing: 9.JPG, 4.JPG

2008-04-21 01:59:47

Hey Zavie,

Emailing: 9.JPG, 4.JPG

2008-04-20 16:38:15

Chat Reminder - Tuesday 9:00 PM
Photo: Sky Mirror NYC. Can you spot me in the image?

RE: [cml 2] CML Glossary

2008-04-20 14:32:22

Tracy--
I am a member to this forum since my husband was diagnosed with CML in July
of 2006. I read often and post seldom---but had to write and say THANK YOU
for this glossary....wow, some of us really needed that!
Thanks much,
Wendy Cervera

CML Glossary

2008-04-19 22:23:56

Hi Everyone,
We've had a number of new members join recently so I thought now
might be a good time to post a review of the CML jargon we often
use. For those who might be getting lost in the alphabet soup, I've
copied and pasted the Glossary we have in the files section that
Richard did for us a few years ago. I've shortened it here to
include just the more common terms we use. If anyone wants to see
the longer version, you can access it in the files section on the
left of the screen.
Please don't hesitate to ask any questions.
Take care,
Tracey
dx Jan 2002
ABL = a gene (named for a researcher whose last name was Abelson) on
human chromosome # 9, involved in normal white blood cell
replication. Abl only causes trouble when it leaves to join
chromosome #22, creating the bcr-abl gene. (See bcr-abl)
Absolute neutrophil count = the total number of neutrophil cells per
microliter of blood. It is calculated by using the total white blood
count (WBC) and the percentage of neutrophils shown on the
laboratory "differential."
ALT = alanine aminotransferase: a blood test used to detect liver
inflammation (see AST)
ANC = absolute neutrophil count
ASH = American Society of Hematologists
AST = aspartate aminotransferase: a blood test used to detect liver
inflammation (see ALT).
Basophil = a type of myeloid white blood cell which is often elevated
in CML
Bcr = breakpoint cluster region a gene on human chromosome # 22
which is involved in the pathophysiology (abnormal functioning) of
CML
bcr-abl = the abnormal gene that characterizes the leukemic stem
cells of most people with CML. For CML to occur, the "abl" gene
(named after a researcher named Abelson) must come unglued from its
usual location on chromosome # 9, and become attached to the "bcr"
(breakpoint cluster region) of chromosome #22, thus creating the bcr-
abl hybrid, or "chimera" which has a number of nasty properties. It
appears that the genetic "mistake" producing bcr-abl is quite common
and may occur several times during the lives of normal people;
however, their immune systems recognize and kill the abnormal cells.
This fails to happen in people who develop CML, but it's not known
why.
BMA = bone marrow aspiration--a procedure in which liquid contents of
a patient's bone marrow are withdrawn (aspirated) through a needle.
This procedure is used to make the diagnosis and to follow the
progress of treatment of CML.
BMB = bone marrow biopsy--similar to a bone marrow aspiration, but
used less frequently and performed with slightly different
equipment. It is used when a larger or different kind of sample of
marrow is needed, or when a BMA is unsuccessful because the marrow is
too fibrous to permit aspiration through the BMA needle.
BMT = bone marrow transplant
Bone marrow = the central portion of our bones, where the majority of
blood cells types are made and stored. Bone marrow contains many
other types of tissue besides blood cells, including a fine meshwork
of bone ("spicules"), connective tissue, and blood vessels.
Bone marrow transplant (BMT) = a procedure in which bone marrow is
taken from one person and given to another, for therapeutic
purposes. In fact, this procedure is rarely used nowadays, having
been largely replaced by stem cell transplants (SCT's); however, many
people still use the term BMT even when they're referring to an SCT.
BUN = Blood Urea Nitrogen (a measure of kidney function)
CBC = complete blood count-- a blood test that measures the
proportions and total number of white blood cells, red blood cells,
and platelets. It also gives information concerning the shape, size
and variation of these cells. In CML a "white cell differential" is
usually performed along with the CBC. This tells which of several
kinds of white cells are present, and in what proportion.
CCR = complete cytogenetic response--absence of leukemic (Ph+) cells
in the bone marrow by either conventional or FISH cytogenetic testing.
CHF = Congestive heart failure
Chromosome - in a cell nucleus, a structure containing a molecule of
DNA that transmits genetic information . Each organism of a species
normally has a characteristic number of chromosomes in its somatic
cells; the normal number for humans is 46. The chromosomal mutation
leading to CML involves chromosomes number 9 and 22 - though if the
disease is untreated, other chromosomal abnormalities accumulate as
well. This process is called clonal evolution.
Chronic myelogenous leukemia (CML) = a disease involving the
overproduction of certain types of white ("myeloid") blood cells.
Untreated, CML progresses through three phases chronic;
accelerated; and acute, or blastic phase each of which is shorter
and harder to treat than the last. Also called chronic "myeloid"
or "myleocytic," or "granulocytic" leukemia
Clonal evolution = the accumulation of DNA (chromosome) mutation
which occurs in untreated CML, and which leads to progression of the
disease.
Cytogenetics. Cyto = cell; genetics refers to looking at the cells
chromosomes, their genetic material. Two types of
cytogenetics, "conventional" and FISH, are used to diagnose and
follow the course of CML. Conventional cytogenetics (so called
because it's been around a long time) is a microscopic exam of up to
25 marrow cells in a phase of cell division when their chromosomes
can be clearly seen and differentiated.
Cytogenetic response (CR) is a response to treatment of CML that
occurs in the marrow, rather than just in the blood..... There are 3
levels of cytogenetic response: 1) just plain cytogenetic response
(CR); 2) Major cytogenetic response (MCR); and 3) complete
cytogenetic response (CCR). A plain cytogenetic response means any
Ph+ less than you began with; major means 35% or less, but more than
0%; and complete cytogenetic response means 0% Ph+ cells as measured
by either conventional or FISH cytogenetic testing (though the PCR
test may still be positive).
DNA = Molecule that carries genetic information. The DNA is
assembled into discrete packets called chromosomes. Humans have 23
pairs of chromosomes, or 46 of them, total, in each cell.
Donor Leukocyte Infusion (DLI) - a procedure done for relapsed
SCTs. Immune system cells are taken from the original donor and
transfused to the CML patient.
Dx = abbreviation for "diagnosis"
Enzyme = a protein that catalyzes changes in other biological
substances. Too many white cells are produced in CML because of an
abnormal tyrosine kinase enzyme - whose sole activity is sticking
phospate molecules onto tyrosine molecules. It's hard to imagine
that so much mischief could be caused by such a simple act!
Fluorescence In Situ Hybridization (FISH) - a cytogenetic test that
is used to reveal the presence of the "bcr-abl" gene. The abl DNA
shows up as a red dot in the microscope slide and bcr DNA shows as a
green dot (see http://path.upmc.edu/cases/case171/mole.html for a
nice picture). In the nuclei of normal cells, where abl and bcr are
on different chromosomes, these dots appear separately. But in Ph+
leukemic cells where bcr and abl are fused, the dots appear
together. If you see RedGreen the cell is Ph+, while Red-------Green
(that is, they're far apart) is Ph-, normal. Clever, huh?
G-CSF = granulocyte colony stimulating factor (brand name Neupogen) =
a naturally occurring hormone that stimulates white blood cell
production
Graft vs. host disease (GVHD) = a collection of ailments that
complicate stem cell (bone marrow) transplantation. In GVHD, the
donor's immune system (the "graft") attacks various of the patient's
(the host's) tissues.
Hematologic response = normalization of the white blood cell counts
in the blood, though not necessarily in the bone marrow. The response
can be partial (reduction in white cells, but not down to normal
range) or complete (white blood count at or below approximately
12,000 white cells/microliter)
Hydrea (hydroxyurea, HU) = a chemotherapy drug which is often used
first in the treatment of CML. Lethal to mature leukemic cells
Hydrea can bring elevated white blood counts (WBCs) back to normal;
however, it does not kill many leukemic stem cells in the bone
marrow, and therefore does not effectively slow the progression of
the disease.
IFN = interferon
IM imatinib mesylate, the brand name for Gleevec (Glivec, outside
the US and Canada)
LAP = leukocyte alkaline phosphatase: a chemical produced in high
quantities in certain leukemias, but always low in chronic phase CML.
A low serum LAP is thus used to support the diagnosis of CML.
LD (or LDH) = Lactate dehydrogenase = an enzyme produced by certain
cell and tissue types. It is used to help diagnose CML "blast"
phase, since blasts produce LDH in abnormally high quantities.
Leukemia = cancer of the white blood cells. Leukemia literally
means "white blood" (leukos = white, and emia.)
Leukocyte = white blood cell (leukos = white; cytos = cell in
Greek). The main types of leukocytes are neutrophils, lymphocytes,
monocytes, basophils, and eosinophils.
LLS = Leukemia & Lymphoma Society
Lymphocyte = a type of white blood cell generally not involved in
CML. Two main types of lymphocytes are B-Cells and T-Cells.
Mini-transplant = non-myeloablative stem cell transplant (mini-
transplant) - a type of stem cell transplant in which the patient's
marrow (myelo-) is not destroyed (ablated) prior to the transplant
procedure
Minimal residual disease = a term used where bcr-abl is still
detectable by PCR, but cytogenetics are negative, or nearly so.
Molecular response (aka PCRU) = defined as a negative PCR or other
negative molecular test.
Myelofibrosis = replacement of blood stem cells in the bone marrow
with fibrous tissue. Myelofibrosis occurs as a complication of CML
and of its treatments, especially interferon.
Myeloproliferative disorder (MPD) = a family of diseases involving
the overproduction of one or another marrow cell types. CML is a
myeloproliferative disorder.
Neutrophils = the type of myeloid white blood cell which is most
increased in CML. Also referred to as polys (polymorphoneuclear
neutrophils); granulocytes (though this term also includes other
types of white cells, such as basophils and eosinophils); and neuts.
PEG-IFN = pegyllated interferon: interferon (IFN) that has PEG
(PolyEthylene Glycol) molecules attached to it. PEG gives IFN a
longer half-life in the body, and may reduce the drug's toxicity and
increase its effectiveness.
Ph = Philadelphia Chromosome.
Ph+ and Ph- refer to the presence and absence, respectively, of the
Philadelphia chromosome in white blood cells of CML patients. The
proportion of Ph+ to Ph- cells is used to track progress in treating
the disease: anything less than you started with is called a
Cytogenetic Response (CR); 35% or less Ph+ is a Major Cytogenetic
Response (MCR), and 0% Ph+ is a Complete Cytogenetic Response (CCR).
Philadelphia chromosome (Ph) is a term used to describe the abnormal
appearance certain chromosomes (chromosome #22), in dividing white
blood cells found in 95% of people who have CML. The Philadelphia
chromosome results from a mutation that involves the swapping of
genetic material between chromosome # 9 and chromosome #22 (see bcr-
abl)
Phillies = abbreviation for philadephia chromosome positive (Ph+)

recurrence of CML

2008-04-19 21:08:23

The maternal grandmother of my grandchildren has CML after being NED
for 7.5 years. She had full body radiation, chemo and a BMT. Sje is
presently on Gleevec and doing alright, not real good but alright. She
is raising our grandchildren because my son lost custody because of
drug addiction. So I pray and pray for her. My daughter now 28 had a
large liposarcoma removed from her thigh in 2003 and has been NED
since. So the awful monster has hit just to close to my home. So I
read posts and hope to gain insight to share with them.
Thanks, Dyana

Re: Neupogen will cost me $1800 per month. What should I do?

2008-04-19 11:19:00

Hi from another Albertan,
I was under the impression, as Zavie says, that all "cancer" drugs
were paid for by the Alberta Cancer Board. We have not had to pay
for any Gleevec, or BMT related drugs, except the profolactic
(spelling isn't my strong suite)drugs. Is Neupogen used for
something other than cancer patients?
Suzanne
Adam's mom
CML dx'd March 04
MUD BMT Feb 05
www.caringbridge.org/canada/adam

Margaret Peake Raymond

2008-04-19 09:47:08

Thank you Margaret Peake Raymond for the wonderfully uplifting movie site
you sent to us. And to all of you, may the New Year bring nothing but good
news on all of your undertakings, but especially on your battle with CML!
May we all be blessed!
Margot

Re: Participation and feeling guilty.

2008-04-19 03:12:48

Good morning,
I remember being at a Leukemia & Lymphoma Society event (Light the
Night) soon after diagnosis where they were giving out t-shirts to
survivors and I didn't think that I should take one. I thought the
shirts were for those who had undergone a stem cell transplant and
come out of it cured. I was surprised to find out that the LLS
definition of survivor is anyone diagnosed with cancer -- that is,
you are a survivor a minute after diagnosis.
I was also saddened and scared by the number of people walking in
memory of someone who had passed away. It rattled me to the point
that I couldn't finish the walk.
The next year I took a t-shirt. And it empowers me to think of
myself as a survivor.
We all walk this new post-diagnosis life differently. My first year
was tough for me. I didn't tell many people about my diagnosis.
I'm more open now as I approach my 4 year anniversary. And I'm more
comfortable at LLS events and volunteering -- but it's taken a while
to reach this point.
I don't read these boards each day and I don't post too often, and
that's OK for me.
Do what is comfortable for you. Enjoy your life. You deserve to
approach this new life with CML in whatever way feels right to you.
Best wishes,
Kathy
dx 5/03

2007 Blessings to CML Group

2008-04-18 21:30:05

Please go to:
www.mayyoubeblessedmovie.com
Margaret Raymond,
mpraymond@...
margaret-raymond@...

Re: [cml 2] Participation and feeling guilty.

2008-04-18 14:57:18

Jmace:
I know what you are saying, you don't have to battle like those with breast
cancer or those going through chemotherapy and the like. You are correct, we
don't have short term battles, but we do indeed have long term ones. We are
battling for quality of life, for longevity and for acceptance in our new
circumstances. There is nothing to feel guilty about.
Sometimes I used to feel jealous. I know of many people cured of cancer
that fought through chemotherapy or operations and are now healed. Now that is
a battle I could get up for. You fight, you win or lose, and then your life
returns to normal. But you know what, I don't think that their lives are
normal either. They have to worry about the cancer returning, about their
immune system and about being accepted as a "survivor", just like we do. I got
over my jealousy when I understood that about everyone with cancer. We all
fight battles, both physical and mental, but the battles are all different.
You know, when I was first diagnosed, I thought that I would have to quit my
job and concentrate on beating CML. So I thought I would take a light
hearted look and find jokes about Leukemia. The only jokes I found had the
punch
line "Well at least I don't have Leukemia". So much for humor. I did make
one up, but it is fairly awful.
Also I am the sole wage earner in my family and my job is very demanding.
In fact, my employer was going through hard times and cut everyones pay who
stayed and laid others off. Since I needed health insurance, I had to stay.
So I "battled" to make additional money, while I was getting used to 800 mg
of Gleevec per day. I have been able to start a small business of my own, but
I still work for the same employer and fear leaving them completely because
of my lack of health insurance. I am just starting to make the salary from
both jobs that I did when I was diagnosed. However, I feel the pressure daily
and I really cannot allow myself the chance to think about what may happen
if CML revisits me in full force again.
We do have our battles and struggles. Don't feel guilty in the least. Our
battle is just different from others.
With regards,
Matt
Dx 01/05
Gleevec since 03/05
Father of 3
In a message dated 1/7/2007 3:32:40 P.M. Eastern Standard Time,
jmace2000@... writes:
Since being dx'ed in July, I have felt physically great and
increasingly great emotionally as I've come to accept CML and that
life can carry on normally thanks to Gleevec. I am thankful for this
every moment.
When I was dx'ed, my life was turned upside down. As we all know, you
go through so many stages of emotions and your life really changes. I
became very aware of my own mortality and what is really important. I
became very aware of the various cancer organizations like Relay For
Life and Team In Training and felt compelled and obligated to
participate.
I had never before been one to rally behind a cause and there I was
attending the meetings and supporting the initiatives. I was and
still am blown away by how caring people can be and how generous some
people are with their time and efforts. But as I become more and more
involved I feel like I'm doing it more for other people than for
myself. I'm feeling obligated (and urged) to be the new poster boy
for CML.
The truth is, I feel the best emotionally and physically when I
forget that I have CML (truly a blessing). Being a part of Relay or
other cancer groups constantly reminds me that I have cancer and that
I could die. People are dying every day from this stuff and it breaks
my heart to dwell on that, to read the blogs, and constantly
acknowledge death.
In Relay For Life, I'm called a "Survivor". I don't feel like a
survivor because I haven't gone to battle. I feel unworthy of the
membership and guilty that I just want to live a life that isn't
focused on cancer. Personally, I feel that carrying on with life,
staying positive, eating right, and not dwelling on cancer is the
best approach for me but it does nothing for the movement.
Has anyone battled with this guilt?

Amniotic Fluid Yields Stem Cells Article

2008-04-18 11:36:10

Report: Amniotic fluid yields stem cells
By PAUL ELIAS, AP
Scientists reported Sunday they had found a plentiful source of stem
cells in the fluid that cushions babies in the womb and produced a
variety of tissue types from these cells sidestepping the
controversy over destroying embryos for research.
ADVERTISEMENT
Researchers at Wake Forest University and Harvard University
reported the stem cells they drew from amniotic fluid donated by
pregnant women hold much the same promise as embryonic stem cells.
They reported they were able to extract the stem cells without harm
to mother or fetus and turn their discovery into several different
tissue cell types, including brain, liver and bone.
"Our hope is that these cells will provide a valuable resource for
tissue repair and for engineered organs as well," said Dr. Anthony
Atala, head of Wake Forest's regenerative medicine institute and
senior researcher on the project.
It took Atala's team some seven years of research to determine the
cells they found were truly stem cells that "can be used to produce
a broad range of cells that may be valuable for therapy."
However, the scientists noted they still don't know exactly how many
different cell types can be made from the stem cells found in
amniotic fluid. They also said that even preliminary tests in
patients are years away.
Still, Atala said the research reported in the scientific journal
Nature Biotechnology expands far beyond similar work discussed at a
heart research conference in November. There, Swiss researcher Simon
Hoerstrup said he managed to turn amniotic fluid stem cells into
heart cells that could be grown into replacement valves. Hoerstrup
has yet to publish his work in a scientific journal.
Atala said the new research has found even more promising stem cells
with the potential to turn into many more medically useful
replacement parts.
"We have other cell lines cooking," Atala said.
The hallmark of human embryonic stem cells, which are created in the
first days after conception, is the ability to turn into any of the
more than 220 cell types that make up the human body. Researchers
are hopeful they can train these primordial cells to repair damaged
organs in need of healthy cells.
However, many people, including President Bush, oppose the
destruction of embryos for any reason. The Bush administration has
severely restricted federal funding for the embryo work since 2001,
leading many scientists to search for alternative stem cell sources.
The cells from amniotic fluid "can clearly generate a broad range of
important cell types, but they may not do as many tricks as
embryonic stem cells," said Dr. Robert Lanza, chief scientist at the
stem cell company Advanced Cell Technology. "Either way, I think
this work represents a giant step forward for stem cell research."
It's the latest advance in the so-called regenerative medicine field
that has sprung from Atala's lab in Winston-Salem, N.C. In April,
Atala and his colleagues rebuilt bladders for seven young patients
using live tissue grown in the lab.
In the latest work, Atala's team extracted a small number of stem
cells swimming among the many other cell types in the amniotic
fluid. One of the more promising aspects of the research is that
some of the DNA of the amnio stem cells contained Y chromosomes,
which means the cells came from the babies rather than the pregnant
moms.
Dr. George Daley, a Harvard University stem cell researcher, said
that finding raises the possibility that someday expectant parents
can freeze amnio stem cells for future tissue replacement in a sick
child without fear of immune rejection.
Nonetheless, Daley said the discovery shouldn't be used as a
replacement for human embryonic stem cell research.
"While they are fascinating subjects of study in their own right,
they are not a substitute for human embryonic stem cells, which
allow scientists to address a host of other interesting questions in
early human development," said Daley, who began work last year to
clone human embryos to produce stem cells.
___
On the Net:
Wake Forest regenerative medicine institute: http://www.wfirm.org/
Nature Biotechnology: http://www.nature.com/nbt/index.html

Participation and feeling guilty.

2008-04-18 04:46:56

Since being dx'ed in July, I have felt physically great and
increasingly great emotionally as I've come to accept CML and that
life can carry on normally thanks to Gleevec. I am thankful for this
every moment.
When I was dx'ed, my life was turned upside down. As we all know, you
go through so many stages of emotions and your life really changes. I
became very aware of my own mortality and what is really important. I
became very aware of the various cancer organizations like Relay For
Life and Team In Training and felt compelled and obligated to
participate.
I had never before been one to rally behind a cause and there I was
attending the meetings and supporting the initiatives. I was and
still am blown away by how caring people can be and how generous some
people are with their time and efforts. But as I become more and more
involved I feel like I'm doing it more for other people than for
myself. I'm feeling obligated (and urged) to be the new poster boy
for CML.
The truth is, I feel the best emotionally and physically when I
forget that I have CML (truly a blessing). Being a part of Relay or
other cancer groups constantly reminds me that I have cancer and that
I could die. People are dying every day from this stuff and it breaks
my heart to dwell on that, to read the blogs, and constantly
acknowledge death.
In Relay For Life, I'm called a "Survivor". I don't feel like a
survivor because I haven't gone to battle. I feel unworthy of the
membership and guilty that I just want to live a life that isn't
focused on cancer. Personally, I feel that carrying on with life,
staying positive, eating right, and not dwelling on cancer is the
best approach for me but it does nothing for the movement.
Has anyone battled with this guilt?

BMT Update

2008-04-17 21:42:17

Hey Group: my 2 cents. . .
As always, I posted to the Group; and as each of us is an 'individual in our
survival'. . .we are all statistics in the research and development of a CURE
for our CML.
Tracey (gf), I can remember the names of those you have given; and as I have
said many time before. . . "I personally don't wanna lose another brother or
sister survivor to a BMT. . . who would otherwise be surviving on our gold". As
Angie says 'CML Alive & Kicking'. We could begin a Group and it could function
independently addressing the 'Pros & Cons of a BMT'.
Those of us surviving on our Gleevec, AMS, BMS, Vaccine, BMT, etc., should
email each other privately and become a source of support for each other in our
survival regardless of chosen method of treatment.
Thanx Barb, Tom's Mom and others for posting in response; any and all
information is valuable to us and the Newbies in our survival; as many have left
after their BMT.
"K"
"I AIN'T FINISHED YET"!!!

CML Convention

2008-04-17 16:34:36

What if the list owner set up a file for everyone on this board to post
their first name, last initial and location? Wouldn't we need to get a feel
for the location to determine the most central place for a convention? Does
the one in Canada support all of Canada or just one Province?
Barbara (Atlanta, GA)
Dx Jul 06
_____

Re: CML Convention

2008-04-17 14:56:34

We do have this sort of group in Canada-the CML society. There are
meetings at least a couple times a year and we meet and there have
been different speakers-the last one in September was Dr Giles from
MD Anderson. This is in Ontario-not sure what or if they do this in
the other provinces. Cheryl-Anne S who leads the group would be the
best one to contact about infor for this- www.cmlsociety.org is their
website

drenching sweats

2008-04-17 02:34:03

Dear friends,
My name is Iris and I live in Vancouver, Canada. My twin sister Ilana lives
in South Africa and was diagnosed with CML last month.
Since then, I have been reading and investigating every bit of information I
could find on CML and while corresponding with a CML patient in the US, I
had an idea that I would like to run by the group.
The activity in this support group serves to prove how important it is for
CML patients and their families to interact with each other. There is so
much that we keep learning from one another and besides, we draw strength
and courage from hearing each others' stories.
What do you think about the idea of holding an annual or bi-annual CML
convention, each time in a different venue?
The convention would comprise lectures by top experts in the field who would
share the latest research and where it is leading, provide us with
statistics and latest treatment options. In addition, supporting natural
treatments could be demonstrated and pharmaceutical companies could
advertise (after getting the green light from experts) some drugs that help,
say, with side effects.
I am thinking that we could all use our connections and come up with a way
to finance such a convention-be it through sponsored airfare, minimal (if
any) hotel costs or accommodation by local families, free outings (there has
to be an element of fun too!) and meals etc.
In return for sponsoring the event, participants could provide information
to researchers, universities, pharmaceutical companies etc. The information
they can gather from participants could prove invaluable to their research
and subsequent new treatment.
I would love to hear your thoughts.
Wishing everyone a wonderful weekend and looking forward to hearing your
comments and ideas,
Iris

Re: [cml 2] CML Convention

2008-04-16 22:38:38

I think it's something that would be beneficial for all of us with CML.
It's something that I thought about doing but never got passed the thinking
about it stage.
There is a wealth of information out there that people don't always know
about that a seminar could help make known to people with CML. There are
several
things held on a yearly basis but I don't know if there is one strictly
regarding CML. I went to a cure magazine seminar back in November in San Diego
but it was for all blood cancers. Something just regarding CML would be great!
There are several airlines that provide free airfare for cancer patients. I
am not sure if everyone knows that. Southwest airlines will provide medical
related transportation once yearly for free. I just did that to fly from
Las Vegas to Portland Oregon to see my Oncologist. It was very easy to book.
Sponsors would be easy to get, I would think CML doctors would be easy to
get as well. I think its worth doing but I am just one person a mist a big
group of people. Those are just my thoughts.
I'd be wiling to help how I could.
Jennifer

RE: [cml 2] Neupogen will cost me $1800 per month. What should I do?

2008-04-16 13:12:11

Hi,
The province of Ontario has something called The Trillium Drug Fund. This
helps patients who need very expensive prescripion drugs. It came in handy
for me when my private insurrance paid 80% of my Gleevec cost. This left me
with an annual bill of $9,000 for Gleevec. After applying to Trillium, they
did a means test and the amount that I had to pay was only $3,000.
I am under the impression that Alberta has a similar program. Contact the
Alberta Health & Wellness agency. Also try the Alberta Cancer Board. They
cover the cost of medication for cancer patients.
Zavie
Zavie Miller (age 68)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
PCRU 5/02 at RVH
2.8 log reduction Sep/05
3.0 log reduction Jan/06
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

Cam- insurance..

2008-04-16 07:05:29

Hi Cam,
I am so so sorry things are going so rough right now- I have been
meaning to write you after your email. Thanks so much - it really
helped us as we were so worried. I will answer the q's you had in a
different email- more concerned about the post I just read from you.
here is some of what I found for appeal - was it the prov. who denied
or private insur?
If a provincial/territorial drug benefit program will not cover the
cost of a prescription medication you have been prescribed you may
consider the following:
1. Have your physician write an appeal letter to the drug program
giving all the reasons why this medication is necessary. Make sure all
the information the drug program requires is included in the letter.
2. Call and write to the drug program requesting an explanation of
their decision
3. If you are part of a patient support group ask if others have
had a similar experience to yours
4. Contact your provincial Minister of Health and MLA regarding
your situation and request that the drug be covered for you.
Also, have you registered with pharma-care? Best to do it as if you do
have to pay after a certain % it will all be free. I understand you
have a family - if we had to shell out that kind of $$ we would be in
a very bad way. Can you put in on credit card until the paperwork is
dealt with? I have faith this will work out but not the headache your
family needs at this time. Please let us know in the group how we can
help. Also contact the Cancer Society - not sure what they can do but
they have certain processes down - and they may be able to advocate
for you. As well, the Leukemia Society....sorry if my post is random
and senseless - I will research it more and get back if I can find
something and help in any way possible -....In the meantime I will
keep your family in my prayers....
shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley

Neupogen will cost me $1800 per month. What should I do?

2008-04-16 05:50:48

Hi everyone,
I feel like I have been on an emotional roller coaster the last few days and I
just want it to
end. As I have shared in my posts before, I have been struggling with low blood
counts
especially Neutrophils.
My doctor prescribed Neupogen to help them bump up so I can get back on Gleevec.
He
thought my insurance would cover it even though it required a special
application. I didn't
worry too much about it and I began the injections. Since then all my counts
have been
slowly recovering. I was elated as they have been descending ever since I went
on Gleevec
which was July 06. Now I found out today that my insurance will not cover it. I
don't know
what to do. It costs $1800 a month and that is half my pay check. I also have 3
small
children to provide for--I don't know what they expect me to do, I don't have
many
options left.
My local pharmacy said they would cover the cost until the paper work went
through but
now the request has been rejected and so I will have to cough up the $1800 for
the month
I have already been taking the drug. I really can't afford this. Does anyone
(especially in
Canada, or anyone in Alberta know of any other way I can get this drug
subsidized or
anything else I can take to help raise my blood counts?
Thanks for your help.
Cam

Re: Glad to have this group

2008-04-15 18:40:50

Hey there!
Sorry that you have reason for this support group, but you have found
a good place to be with cml.
My son, Steven - age 23 now, has cml. Dx'd March 06 and also doing
simply great! Gleevec 400mg, absolutely minimal side effects and
another PCR coming up tomorrow. His (hopefully) last BMB for a while
also delivered a negative and he has been CCR for a good few months
already. He holds a full time job and went back to college after
diagnosis, night classes, and is doing wonderfully there too. It
seems as if this diagnosis has really spurred him on to really live
his life - its really wonderful to see the positive changes in him
since he was diagnosed. Watching how he is dealing with all this has
taught me so much, humbled me and strengthened me too.
I am glad to hear that you have no major side effects and zero's -
lets trust that it will stay that way forever!. Here I have
encouraged my kids to get WAY above zero's all those years in school -
now I pray for the Big Zero to stay with Steven forever! lol.
May you keep doing well.
love
Annie
Steven's mom
www.livingwithcml.blogspot.com

The BMT debate

2008-04-15 15:48:15

When I was first diagnosed and knew virtually nothing about anything,
I was made to believe that a BMT was a simple procedure that you went
to the hospital to get, you had it, you left, and you were cured.
That was the end of it.
My doctor at the time (who was a transplant specialist) made it sound
similar to having a baby. It's a little tough for a little while but
in the end you get a new life and all is good, end of story. It was
only after reading various members BMT journals that I began to
realize that it wasn't quite that simple.
I was only 31 when I was diagnosed and was told that this was a
perfect age to do a BMT and I was the perfect candidate for it too
since I was otherwise healthy so I followed very closely all the
members who were near my age group at the time and who chose
transplant. I'll never forget these people, they impacted my life in
a very strong way.
Mark was only 32 and the father of two little girls when he "went for
the cure". He died about 11 months later.
Jason was a marathon runner and only 28 years old. He was in far
better shape than anyone I knew, yet he died about 4 months after his
BMT.
Glenda was 33 and the mother of 2 young girls. She never made it out
of the hospital.
Doug was in his 40's and was doing so well that he had started
golfing again. He was our big BMT inspiration with almost no
complications. That was until he caught some type of infection and
died about 6 months post BMT from his weakened immune system.
Melinda was in her 40's and struggled terribly with post BMT
complications until her body could take no more.
Paul was in his early 30's but never left the hospital. He left a
wife and two young sons behind.
There were many more than this who died, all young and otherwise
healthy but I think I've made my point.
I chose not to go the BMT route because I didn't want to put my
family through that roller coaster ride. I honestly believe that the
family goes through more than the patient does and I just couldn't
put my family through that. I never want to be a burden to the one's
I love.
A BMT is not an easy treatment and it is not necessarily a cure. Yes
a BMT can potentially be a cure but it can just as easily be a death
sentence.
I don't say all this to scare anyone and certainly there are patients
who have no other options, but for those who do have options, I want
to make sure that they understand the risks involved because there's
no turning back once you start the BMT.
Regardless of this, anyone who has chosen to go for a transplant, has
been supported by group members 100% and that will never change.
Tracey

Re: Thesese and BMT

2008-04-15 04:39:31

Dear Barb,
That was a very honest answer that you gave the group. I hate that Tommy is
still struggling post-transplant.
Therese,
I agree with what Barb has written. In even the 2 years since Tommy's BMT,
recommendations for transplants have changed....mostly it is seen as a last
resort. You might be in that category but because of the risks with BMT, I
would want to consult with one of the top CML specialists (and not one
associated with a transplant center). I think you are in Canada....but it
might even be worth the personal expense to you to consult with someone
like Dr. Druker or Dr. Talpaz. You need to realize that you will be off
work and recovering for a minimum of a year....don't expect less than that.
Years ago when a very good friend was questioning whether to have a BMT or
not, I told her she needed to consider the worst case scenario......if she
died (sometimes within the first 100 days) and whether she could take that
risk at this time....she also had minor children. You won't die from
Gleevec, you won't die from side effects.........maybe there is a better
medication for you to try. Don't let someone dangle that BMT is the only
cure in front of you, without fully knowing all of the possibilities that
can happen post-BMT. I have lost several very good friends post-transplant.
And in the end, it is of course your decision....and we will support you in
that. I hope you will consult with a major cml specialist and see what they
have to say about your situation.
Nancy C.

Re: [cml 2] CML is a disease

2008-04-15 02:58:22

Finished:
I am confused about your FYI on a BMT. Basically the BMT is a stem cell
transplant. They remove the stem cells from the donor and transfuse them into
the reciepent. Very undramatic. There is still GVHD even with a full matched
donor. I have crossed into the dark side. I have decided to go with the BMT or
stem cell transplant, whichever you prefer to call it.
Gleevec is not my gold, as I have told you before. I am grateful for all the
people that are succeeding with it. I wish it had held longer for me.
I have a matched donor and I am going for this. I am worn down by side
effects and working full time. If I don't cure this, the drugs they are
experimenting on me with are going to kill me. I am like you I, I have multiple
health issues also. I also work full time and dealing with this is becoming
crazy with endless hurdles. Before I have major organ damage from being an
experiment, I am going for the cure. The only cure known for this disease.
I wish you well, and hope your "gold" holds you forever. I would like to be
there to see my daughter Haley graduate from high school in two years. My
other daughter Morgen will be graduating from college around the same time. I
plan to be there to celebrate with them both. The way treatment is going for
me, I think I am making a wise choice,
Good luck all.
T Stone
IAintFinishedYet <kttweety@...
Hey Group: FYI~~my 2 cents
After being given 2-5 months morbid mortality in November 2003. . .
After going through HELL and being labeled "Queen of the Side Effects". . .
After being told that CML is no longer a terminal disease, now its a Chronic
Disease with a newly diagnosed person having a 25 year median mortality. . .
After being told that Gleevec is a maintenance medication. . .
After being told that AMS & BMS are not either/or medications for Gleevec; they
are for survivors who have became intolerant or failed Gleevec therapy. . .
After knowing survivors die from a BMT; who were otherwise surviving on Gleevec
because GVHD is a KILLER. . .or living the Gleevec life again.
After being told that CML is a Chronic Disease, much like Diabetes, for which
there's no CURE. . .
After being told that CML is a Chronic Disease, much like Diabetes, for which
there's no CURE. . .
After reaching my maximum response, I know that my demise will be from one of my
other 20 fatal/terminal/chronic diseases. . .all of which I call Chronic
Illnesses. . .
I named CML~~ my 'bug'. . .
I named Gleevec~~ my 'gold' . . .
I named Plavix/Heart Disease~~my 'platinum'
I named Pain Medications/Orthopedic Diseases~~my 'silver'
After knowing in my heart that the CURE isn't the BMT. . .it will come from
SCT~~Stem Cell Transplant. I heard that our President is vetoing the bill again.
We need to appeal to our Senators so that they over-ride him. That way the
research and development into SCT can forge ahead.
In the meantime; I say Thanx God, Dr. Drucker~~Father of Gleevec, Dr.
Talpaz~~Father of CML (doing SC research at UMCCC, the only facility in the US),
Zavie, Tracy, Scott, Anjana, Nancy, Skip, etc., for being there for me when I
had a question or concern; and I take my 'gold' because. . .
" I AM A SURVIVOR. . .I AIN'T FINISHED YET " ! ! !
HAPPY NEW YEAR. . .I have ALL in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

Re: [cml 2] CML is a disease-long

2008-04-15 00:53:44

Therese & Group,
Tom had a LOT of complications. He is over 600 days post-transplant
and still struggling. I would suggest that you consult with a CML
specialist and seriously look at other medicines before going to
transplant. I have known kids who died post-transplant. I have known
others who did OK post-transplant and suffer few, if any
complications. Here are some websites for people with CML who have
had transplants. Click on journal history to read their "stories".
http://www.caringbridge.org/wi/tomneddo/
http://www2.caringbridge.org/co/russ/index.htm
http://www3.caringbridge.org/ms/james/
http://www2.caringbridge.org/mi/gloriadunford/index.htm User Name:
gloriaspage Password: xmas1234
http://www2.caringbridge.org/canada/adam/
http://www3.caringbridge.org/nj/kelly/
http://www2.caringbridge.org/ca/robglatts/
http://www.caringbridge.org/cb/inputSiteName.do?
method=search&siteName=richardconstable
http://www.caringbridge.org/page/shannon/
http://www.caringbridge.org/cb/inputSiteName.do?
method=search&siteName=martyncoyne
http://www.caringbridge.org/ny/mattysupdate/
http://www.caringbridge.org/or/jeanniematthews/index.htm
http://www.caringbridge.org/mo/rschneid54/index.htm
http://www.caringbridge.org/tx/dane/
http://www.caringbridge.org/cb/inputSiteName.do?
method=search&siteName=marisabielen
http://caringbridge.org/ak/marks/
http://www.maxhorwood.com/
http://www.caringbridge.org/cb/inputSiteName.do?
method=search&siteName=shiraweisbach
http://www.caringbridge.org/tx/stephenthompson/
Here is information that I posted to another group:
My son, Tom, was 15 when diagnosed with CML (8/13/04). He had no
sibling HLA matches, so he had a fully matched, unrelated donor bone
marrow transplant on 5/05/05. His donor was a 41 year old male.
Before deciding on the transplant, Tommy (son) visited with Dr. Brian
Druker, the developer of Gleevec. Dr. Druker stated that Tommy was
probably a 50% candidate for Gleevec failure because of having a lot
of blasts at diagnosis and having a very enlarged spleen at
diagnosis. Dr. Druker said going with a BMT was our decision and he
couldn't tell us to go either way. Dr. Druker was very kind and
compassionate and explained about Gleevec and relapse rates. The next
thing Tommy did was go to University of Minnesota at Fairview to the
BMT clinic for a consultation on transplant. We consulted in
Minneapolis twice with both doctors assuring us that BMT was the
route to take and that the survival of patients having CML and
receiving BMT's at the U of Minnesota facility was very good.
In April of 2005, we moved to the Ronald McDonald House in
Minneapolis and Tommy started his chemo and radiation regimen at
Fairview hospital. I can tell you that watching my child go through
chemo and radiation and all the side effects (nausea, vomiting,
diarrhea, hair loss, isolation) was heart wrenching and hard on the
whole family. Tom was in the hospital for four weeks after his
transplant. Complications that came up after the transplant:
mucositis (mouth sores from the radiation that kills all the fast
growing cells in the body) This lasted a couple weeks.
http://www.cancer.gov/cancertopics/pdq/supportivecare/
oralcomplications/healthprofessional/allpages/print#Section_271
CMV - cytomegalovirus which Tommy had before transplant, and came
back after his immune system was suppressed. This was treated with
anti viral drugs given intravenously. This lasted a few weeks.
http://www.biomedcentral.com/1523-3820/4/43
graft vs host disease of the skin which caused all his skin to slough
off (a bit at a time) and was treated with IV immune suppressant (CSA/
gengraf/cyclosporine ) and high doses of prednisone. He had this twice.
http://www.chronicgvhd.org/
http://www.emedicine.com/PED/topic893.htm
nausea and vomiting for months at a time with no cause determined
gall bladder removal to treat the nausea and vomiting (it didn't work)
AVN or avascular necrosis (bone death) from long term prednisone use.
This has just occurred and we are dealing with this now.
http://www.merck.com/mmhe/print/sec05/ch064/ch064a.html
diabetes from prednisone use (this is now gone)
high blood pressure from one of his medicines (this is also gone now)
seizures from his immune suppressant medication (CSA/gengraf/
cyclosporine) This was very scary.
http://circ.ahajournals.org/cgi/content/full/94/6/1209
http://molinterv.aspetjournals.org/cgi/content/full/4/2/97
infertility because of the radiation - permanent
hair loss after chemo and radiation. This was temporary (lasted about
three months). Tommy's hair came back very full and curly. Before his
hair was fine and straight. He used to have light brown hair. Now his
hair is brown and red/brown.
If you would like more information about Tom's experience, you can
review the journal history (very long):
http://www.caringbridge.org/wi/tomneddo
Feel free to email me and ask questions, etc.
Barb Neddo, mom to Tom,
Eagle River, WI
http://www.caringbridge.org/wi/tomneddo

CML is a disease

2008-04-14 19:00:57

Hey Group: FYI~~my 2 cents
After being given 2-5 months morbid mortality in November 2003. . .
After going through HELL and being labeled "Queen of the Side Effects". . .
After being told that CML is no longer a terminal disease, now its a Chronic
Disease with a newly diagnosed person having a 25 year median mortality. . .
After being told that Gleevec is a maintenance medication. . .
After being told that AMS & BMS are not either/or medications for Gleevec;
they are for survivors who have became intolerant or failed Gleevec therapy. . .
After knowing survivors die from a BMT; who were otherwise surviving on
Gleevec because GVHD is a KILLER. . .or living the Gleevec life again.
After being told that CML is a Chronic Disease, much like Diabetes, for which
there's no CURE. . .
After being told that CML is a Chronic Disease, much like Diabetes, for which
there's no CURE. . .
After reaching my maximum response, I know that my demise will be from one of
my other 20 fatal/terminal/chronic diseases. . .all of which I call Chronic
Illnesses. . .
I named CML~~ my 'bug'. . .
I named Gleevec~~ my 'gold' . . .
I named Plavix/Heart Disease~~my 'platinum'
I named Pain Medications/Orthopedic Diseases~~my 'silver'
After knowing in my heart that the CURE isn't the BMT. . .it will come from
SCT~~Stem Cell Transplant. I heard that our President is vetoing the bill again.
We need to appeal to our Senators so that they over-ride him. That way the
research and development into SCT can forge ahead.
In the meantime; I say Thanx God, Dr. Drucker~~Father of Gleevec, Dr.
Talpaz~~Father of CML (doing SC research at UMCCC, the only facility in the US),
Zavie, Tracy, Scott, Anjana, Nancy, Skip, etc., for being there for me when I
had a question or concern; and I take my 'gold' because. . .
" I AM A SURVIVOR. . .I AIN'T FINISHED YET " ! ! !
HAPPY NEW YEAR. . .I have ALL in my prayers.
"K"
"I AIN'T FINISHED YET"!!!

4th anniversary

2008-04-14 08:10:29

Just celebrated my 4th anniversary and feeling good. Last PCR was
untraceable (again). Dr. is dancing a jig. Hope youj all have a vey
happy new year and keep getting better. Thanks to you all for the
support over the years. I'm on 400MG now. I take it twice a day, two in
AM and two in PM. I'm in my third year of pastoring a local church part-
time and handling it well. Blessings. Nick

Re: [cml 2] 4th anniversary

2008-04-14 06:21:38

That is truly wonderful Nick.
Matt
DX in January of 2005
Gleevec since March of 2005
In a message dated 1/3/2007 7:15:52 P.M. Eastern Standard Time,
ksnwoods@... writes:
Just celebrated my 4th anniversary and feeling good. Last PCR was
untraceable (again). Dr. is dancing a jig. Hope youj all have a vey
happy new year and keep getting better. Thanks to you all for the
support over the years. I'm on 400MG now. I take it twice a day, two in
AM and two in PM. I'm in my third year of pastoring a local church part-
time and handling it well. Blessings. Nick

Re: [cml 2] FISH test

2008-04-14 01:14:40

Thanks, Zavie. I was so thrilled that my primary oncologist told me
the result. I am going to see him this Friday. I will talk to him
in more details.
Happy and Healthy New Year!
Siu

Re: [cml 2] hunger, appetite and weight gain

2008-04-13 14:42:46

Hi Siu,
You are describing something that I have also noticed in myself. Almost as if I
have low blood-sugar if I get too hungry. I start to feel weak, nauseated and
have cold chills and sweats until I eat something. Also only since Gleevec for
me.
chris in minn

Glad to have this group

2008-04-13 07:14:48

I just joined this group and I am very happy that others with this
disease are interested in meeting on-line with one another. I was dx
with CML 11/05 and have been on Gleevec ever since with awesome
results. No major side effects and zero on PCR from BMB on 11/06.
Hopefully my last BMB I will have to have.
I am looking forward to providing encouragement to others and getting
words of encouragement from you all.

Re: [cml 2] What are my options? - Susan Leigh

2008-04-12 23:29:57

Hi Susan,
Depending on the nature and severity of your side effects from Gleevec (IM) and
Sprycel,
you and your consultant might consider trying a drug approach called "pulse
therapy,"
rather than moving to something so radical as BMT. With a 4-log reduction, your
disease is
at low risk of progressing as long as you are able to tolerate either drug for
periods as
short as a month, followed by a break. If, on the other hand, your side effects
are
intolerable after only a week or two of IM or dasatinib therapy, then what I
write below will
probably be of no use to you.
Pulse therapy - that is, intermittent rather than continuous use of a drug - is
employed to
good effect with many kinds of cancer chemotherapy in order to decrease side
effects,
and in a number of infectious diseases (which in many respects CML resembles
more than
it does a cancer) in order to increase the effectiveness of treatment. It is
absolutely NOT a
standard approach to the kinase inhibitors (IM and dasatanib), but several
people,
including myself, have used it for long periods of time to good effect, and
there is
increasing interest in it as a possible alternative to continuous drug therapy.
A trial of
Gleevec pulse therapy is about to get underway in Australia, I understand.
As I've written on this list previously, I have cycled on and off IM for nearly
5 years. Until
recently my schedule was two months on, one month off, two months on, two months
off,
etc. For the most recent two cycles I have remained off for 6 weeks at a time,
then back
on for two months. If I continue to do well with this I will switch sometime in
the next
couple of years to 6 weeks on, 6 weeks off - where I'll stay until a cure for
CML is found!
I began doing this (against the advice of my physician, I should tell you) in
order to regain
my pre-CML quality of life (even though my side effects weren't that severe, I
didn't like
the perpetual fatigue and mental fuzziness, plus a couple of other nuisance
symptoms
such as hoarseness and diarrhea); to avoid as-yet-unknown but potentially
dangerous
adverse effects which struck me nearly inevitable with so powerful a drug used
continuously over many years; and hopefully to increase the effectiveness of my
therapy.
It worked great on the side effects: since the worst of them take about a month
to come
on once I start IM, and only about a week to wear off once I stop, I only
experience about 5
weeks of side effects out of every three months.
There's no way of knowing whether the pulse regimen is helping against long
term-
adverse effects, but the scare earlier this year concening a possible increase
in heart
failure among patients on IM strengthened my resolve on this point - whether
this
particular problem turns out to be real or not.
As to improving efficacy of treatment, there's no way of knowing from my
personal sample
of one, but I can tell you that since I started pulse therapy almost five years
ago, I have
gone from an initial 4-log reduction to PCRU (PCR undetectable - now called CMR,
or a
complete molecular response). Whether or not I can attribute this success to
pulse therapy,
it obviously hasn't hurt me either.
The principle reason I believe pulse therapy may increase efficacy is this: it
has been well
established that continuous administration of IM (and probably dasatanib, too)
actually
drives CML stem cells into quiescence (non-dividing, that is), a state in which
they are
insensitive to the drug. By stopping the drug for longish periods of time (just
a few days
isn't enough, it's known from studies of these quiescent cells in vitro) the
impetus to
remain quiescent is removed. Each time that happens it just may be that a few of
the cells
start cycling again - thus rendering them susceptible to IM's killing effect
once it is
restarted. By repeating this again and again over time I hope to decrease the
pool of CML
stem cells - maybe even to zero! Conversely though, uninterrupted exposure of
these cells
to a drug which does NOT kill them, may in time lead to active resistance - and
that is
something I would like to avoid.
While I'm happy to be my own guinnea pig, I do not recommend this highly
non-standard
therapy to just anyone; however, because standard therapy no longer seems to be
an
option for you, Susan - AND because BMT even from a matched related donor is an
uncomfortable and risky business - consideration of a non-standard drug approach
seems
quite reasonable to me.
I'll be happy to discuss this further with you or your physician, if he or she
is interested.
Regards,
Richard R, MD

Re: hunger, appetite and weight gain

2008-04-12 19:59:08

Hi Siu,
I think many of us feel hungry all the time which partially explains
why so many people gain weight on Gleevec. I find eating helps with
the nausea, much like it did when I had morning sickness when I was
pregnant years ago.
Tracey

Re: Newbie

2008-04-12 17:49:05

Hi Brenda,
Welcome to the group. I can tell you that I certainly felt scared
when I was first diagnosed and I think that's pretty normal. The
more I learned though, the better I started to feel.
I don't know what your white count and platelets are but I think I
started to feel better when my counts returned to normal. That took
about 3 weeks on Hydrea then I started Gleevec and had terrible bone
pain for about a week and that was the end of that.
The pain under your left rib cage is probably your spleen. That will
get better once your counts return to normal. The fatigue may stay
with you for a while though. Some of it is psychological and part of
it is actually the Gleevec. Some people are lucky and the fatigue
does go away but for others, it stays for good. I seem to have good
days and bad days.
Be patient with yourself, it does take time to adjust to life with
CML but rest assured that you will adjust.
Tracey
dx Jan 2002

hunger, appetite and weight gain

2008-04-12 12:38:03

Hi,
I have been on Gleevec since Sept 06. I have gained about 20pounds
since I started Gleevec. I was kinda underweight when I was
diagnoised in Auguest because I was hospitalized for 5 days and on
Hydrea for 2 weeks. Now I am actually back to my normal weight.
However, I seems to feel hunger very often and have to eat more
frequently. If I eat less or skip meals, I will feel very weak, shaky
and exhausted. It is like having a low blood sugar. After I eat
something, I will feel normal again. I don't feel like this before
(Gleevec) when I hunger.
I wonder if anyone have this feeling while on Gleevec.
Thanks.
Siu

Newbie

2008-04-12 03:08:17

Hello everyone.
My name is Brenda and I am a newly diagnosed CML patient. I was
diagnosed on December 13 2006, and after confirmation that I indeed
had the bcr/abl chromosone I started gleevec on December 21 2006.
I am a breast cancer survivor, (diagnosed March 2004, 2
lumpectomies, chemo, and radiation all complete