Since June 2005, I took Gleevec (400) mg. First I was diagnosed AF
Atrial fibrillation in June 2003. Actually I take to control AF, three
medicaments ( Coumadin, Monocor and Rythmol). I don't know if there is
some interaction between these medicaments. Is the there somebody in
the same situation than me? I am 53 years old. I lived in Montreal
(Canada).
Hi Giora,
I thought that I attached the file to the email. If you go to this site:
http://lists.clinicaloptions.com/t/2766/61308/690/0/
you will get all 5 Expert Highlights. You may have to register, but it is
worth the price.
Best wishes to you and your family for a Happy Channukah,
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 (Questionable)
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
Hi all,
For a great alternative to reading all the CML documents from ASH, this 6
minute audio by Dr. Talpaz covers it all in a clear and complete manner.
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 (Questionable)
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
HELLO ZAVIE
WHERE CAN I SEE THE REPORT BY TALPAZ?
GIORA
I really appreciate all the information Tracey has shared with us all.
However, I'd like to add a bit to the information on CHF.
My husband developed CHF and had none of the risk factors listed. He has been
on 400 mg Gleevec since 6/01. The progression of his tiredness came slowly and
he did not realize it until he was diagnosed with a real ailment and realized he
was taking more naps and had less energy (having to lay down after vacuuming one
room instead of after the whole 1000 square feet of our home was done). He was
experiencing shortness of breath but was tired of the "must be the Gleevec"
response when other things came up, that he never mentioned anything to the
doctors until the CHF news came out. At his next regular onc appointment he
mentioned it and even though the doctor could not find any of the symptoms
aparant except shortness of breath, he ordered the Echo done. His heart was
only pushing 10-15% of blood out where a normal heart pumps 50%-60%. The doctor
would not even let him return to his truck to put his personal items there.
They flew him to the nearest Heart hospital the
next day and spent the next 9 days there having a defibulator/pace maker
installed and waiting for his heart or blood or something to stablize before
allowing him to return home. More than once the cardiologists told me they
wished it was caught sooner. That diagnoses was on Oct 5. They took him off
the Gleevec immediately. If it was caught sooner, maybe both could have been
treated. Last month's blood work showed signs of remision failing. We will do
more blood work next week that will give more acurate counts on the status.
I am SO VERY GRATEFUL for Gleevec. Life before Gleevec sucked! It gave him 5
good years and hopefully he can go back on it or something again before the
leukemia progresses too far. My only wish is that we knew in time to catch it
before the heart was in such bad shape.
Please - if you are more tired than usual - or have shortness of breath of any
kind - low blood pressure when it has always been normal - go get tested - other
risk factors or not. I don't want to stress anyone out - as it is a rare side
effect - I just want to make sure people don't ignore the symptoms or blame it
as a Gleevec side effect or the dust at the river, or any of the other things
Scott blamed his on. It is a treatable Gleevec side affect - more treatable if
caught early. The test is painless -
Ora
Wife of Scott - 46 year old "healthy for a sick guy" as the doctors say
dx 06/00, gleevec 06/01 until 10/06 CHF diagnoses hoping the leukemia doesn't
return too fast before the heart can heal enough to treat it again - or before
doctors can figure out the best way to treat both
Hello All,
In response to your questions, here is what Novartis presented at their
booth at ASH. I have all the documentation and I will be happy to scan it
and put it up here on the site.
Everything in quotes is exactly as it is on the written material, these are
Novartis' words not mine:
"CML Alliance, a new support program designed to help optimize outcomes in
patients with Ph+ chronic myeloid leukemia (CML)"
"CML ALLIANCE is currently for US health care providers and their patients
only"
"Program under development and subject to regulatory approval"
CML ALLIANCE (tm) - a unique program offering important support for health
care providers who treat Ph+CML and their patients"
"Novartis, the global leader in Ph+ CML therapy, has been working with
health care providers and patients worldwide for more than 5 years to
improve treatment of Ph+ CML."
"Novartis now introduces CML ALLIANCE, a unique support program designed to
help health care providers optimize outcomes in Ph+ CML patients."
"SUPPORT FOR HEALTH CARE PROVIDERS"
"Standardized blood level testing to help identify nonadherence as a cause
of suboptimal response*"
"Access to reimbursement support and information"
"Access to educational information on the molecular biology and management
of Ph+ CML"
"Access to information on all clinical trials of new and existing Novartis
Ph+ CML therapies"
"SUPPORT FOR PATIENTS"
"Unique programs designed to help improve adherence to Ph+CML therapy"
"Access to reimbursement support information"
"Valuable educational information on living with Ph+ CML, including
www.livingwithCML.com"
"Additional features will be added in the future"
"Improving adherence to therapy is a key goal of CML ALLIANCE(tm)"
"Nonadherence has been identified as a significant barrier to the effective
use of oral cancer therapies (1,2)"
"Oral cancer therapies continue to be developed and their use will continue
to increase (1)"
"One of the first large studies (N-4043) of adherence to oral cancer
medication found:
- on average, patients took only 75% of their prescribed oral cancer
medication over the 24 moth study period(1)
- only 41% of patients took
- A
standard for patients with life-threatening conditions(4)
- The average patient consumed ~ 20% less than his or her prescribed dose of
medication (3)
- Patients were on therapy an average of 62% of the study period (255 days
out of 24 months)(3)
- After 4 months of treatment, adherence began to decline (3)"
So, now these are my words, this program is a result of market research (I
know because this is what I do) based on the amount of CML patients and
looking at the sales figures for actual drug sales to pharmacists. This is
how Novartis or any drug company can track compliance. They base their
calculations based on average monthly doses, add up the sales and see where
the gaps are.
As well, Novartis is concerned that the higher incidence of resistance and
relapse might really be a function of lack of adherence to the drug. Just
for the record, during the sessions at ASH doctors all agreed that the blood
serum level should be done more out of a need to monitor toxicity then
"pushing" the compliance issue. Not one of our doctors out there think this
ought to be used as an issue of compliance. I agree with them too!
So, I think that in my own personal case, because of problems with my
kidneys, if I were on Gleevec (I am on IFN and LOVING it) then I would have
my blood serum level tested to see what the optimal dose of Gleevec would be
for me.
For the record, if I was a patient that did not respond to 400mg of Gleevec
and was switched over to 800mg of Gleevec, I would be inclined, based on the
data I saw at ASH which is posted on the www.cmlsociety.org website, to
switch to Dasatinib, and most preferably, I would go to the 100mg daily
dose. I am speaking purely as a patient, the data that Dr. Shah presented
made a very compelling case for the switch. To be fair the data for Tasigna
is also very good, but it isn't approved yet, so it is harder to switch just
now.
Please do not hesitate to contact me if you have any questions. By the way,
it is my understanding that this program will also happen in Canada.
Cheers,
Cheryl-Anne
Hi All,
CancerCare is sponsoring another teleconference on Dec 19, 2006. It
is the CML UPDATE FROM THE ASH MEETING.
This is the link...
http://www.cancercare.org
Sincerely,
Lynn
Hi Lynn,
I did hear him say that but I'm not holding my breath. I'll believe
it when I see it.
Maybe I'm just cynical but I don't see why Novartis would have this
test routinely available. Imagine all the people who are on 800mg,
if they had their serum levels tested and found that they didn't
need the double dose. Imagine all the money Novartis would lose. I
just can't see them opening themselves up to a loss of profits by
offering this test as much as I would LOVE to see it. I hope I'm
wrong.
Tracey
Hi all,
The one thing that I was happy to hear came from Dr. Druker at the end
of the conference.
He mentioned that Novartis is going to kick off a new program, next
year, regarding serum level testing.
I'm very interested in having my levels checked. They said that due
to different metabolisms, the drug may be stronger in some people more
than others. (I think my metabolism has really slowed down after
diagnosis at 41), and deal with many side effects on 400 mg.. I'd love
to see where I fall.
Did anyone else hear this information too?
Thanks, Lynn
Dx: 12/03
Thanks, Tracey.
I'm one who worries about the long-term effects, so it's good to know
that there are no third eyeballs. Although with with my vision
getting worse (due to age), perhaps a third eye would help.
Take care,
Kathy
Thank you very much Tracey. That was all very informative...and encouraging!
shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley
Hi Cam,
There's another drug that some doctors will use to boost platelets,
it's called Neumega, has your doctor mentioned this? Not all
doctors recommend it but some will.
MDS is Myelodysplastic Syndrome. You can read more about it here:
http://www.cancer.gov/cancerinfo/pdq/treatment/myelodysplastic/patien
t
Take care,
Tracey
Hi Everyone,
I thought I'd post a bit about what was said in tonight's
teleconference from Doctors Druker and Shah for those who didn't get
a chance to listen to it.
I can't guarantee that my numbers are 100% accurate but this is what
I remember hearing from the five year follow up of the IRIS trial:
13% of patients relapsed or became resistant to Gleevec
8% of patients left the trial voluntarily for a variety of
reasons...some left to pursue other options, some left because they
were tired of all the follow up appointments/testing, some left
because they didn't want the hassle of travelling to far away
centres and some left for other reasons.
4% of patients stopped taking Gleevec due to intolerable side effects
3% left the study to seek a BMT
1% of patients were lost somewhere and couldn't be found (Where's
Waldo :)
2% of patients died from causes that had nothing to do with CML (I
guess they were hit by the proverbial bus)
So that leaves 69% of patients of the original 553 who started the
trial, still in the trial and 31% of the patients who are no longer
in the trial.
Roughly 75% of patients will do marvellously on 400mg of Gleevec and
25% will need something more than 400mg (either a higher dose or a
different drug)
50% of the patients who left the trial, actually left while they
were in CCR so we shouldn't assume that those who left, left because
they weren't doing well.
Only 7% of patients of this group of patients have progressed to
more advanced stages (accelerated or blast) which means that 93%
have NOT progressed in their disease for 5 years. Now keep in mind
the difference between relapsing and progressing. Relapsing is when
you lose your response but you're still in chronic phase, whereas
progressing is when you pass the chronic phase and enter the more
advanced phases.
The risk of relapse for those who achieved CCR within 1 year is only
3% after 5 years with that figure dropping in the 4th and 5th year.
The most relapses were seen in the second year of treatment.
Dr. Druker addressed the CHF issue by saying that out of the 553
patients in the IRIS trial, only 1 developed CHF (congestive heart
failure) which he said is not significant enough to warrant baseline
echos for everyone. He did suggest however that for those who have
risk factors for heart disease (high blood pressure, diabetes,
family history, etc) then they should get a base line echo for
reference.
It's quite amazing how far we've come in just a couple of years. We
started out with Gleevec which was an amazing break through. Then
we got the second generation kinase inhibitors (Sprycel and Tasigna)
and now we even have a third generation drug that is showing promise
in early clinical trials (MK0457).
I know many of us are concerned with the long term effects of taking
these drugs for the rest of lives but they said that so far, there
hasn't been an issue of long term toxicities which I guess means
that they haven't seen anyone grow a third eyeball yet.
The issue of reducing dosages was addressed. They said that a year
ago, they didn't recommend anyone lower their dose (even those on
800) but now that we have so many options and now that we see the
relapse rates actually declining, they have allowed some people to
reduce their dose from 800 to 600 or 600 to 400 but they don't
recommend that anyone go below 400mg.
They addressed relapse rates in BMT's which I found interesting.
10% of patients will relapse from a regular sibling matched BMT but
50% will relapse from an identical twin matched BMT.
Trisomy 8 in PH negative cells is the most common abnormality seen
and it's significance isn't completely understood. For now,
patients who develop this are just monitored more closely.
Dr. Shah made an interesting comment about how much money we spend
on cancer research as opposed to the war on terror. I forget the
exact number but we spend an awful lot more on the war than we do on
cancer research yet for every person that was killed on 9/11, there
are 100 who die every day from cancer.
Dr. Druker mentioned that CML has actually become a bit complicated
in the recent years with all the advancements we've had and all the
options that are open to us. He stressed the importance of seeing
an expert because of this.
And finally, the issue of PCR's was addressed. They said that a
negative PCR should be taken with a grain of salt so to speak.
There are two issues that seem to be common with PCRU readings. One
is the sensitivity of the test being low so as to not pick up the
leukemic cells and the other is the issue of quality. If the sample
has been sitting around degrading, it may show to be PCRU when in
reality it could be full of leukemic cells.
So that was it in a nutshell from what I remember.
Take care,
Tracey
Hi Tracey,
He wonąt let me go back on because my platelets are too lowusually between
7-10. Also what is MDS? I am not familiar with that acronym. Thanks for your
help and advice.
Cam
Hi Cam,
You may have answered this already but why are you not taking
Neupogen to boost your neutrophils so you can go back on Gleevec?
Also, has your doctor investigated if you might have MDS with such
low counts, since they don't seem to be recovering?
Tracey
dx Jan 2002
Hi Shalyn,
Over the last few months I have had real problems with my neutrophils and
other counts. My doctor told me I shouldnąt go back on Gleevec until my
neutrophils were above 1.0. I have been under that for many weeks usually
between .3 and .8 I am really hoping my counts will go back up so I can
back on my meds.
Cam
This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.
Hey Everyone,
Hope this finds everyone well- I have a quick q- not wanting to bug
but need some advice/knowledge. How low does your Dr allow your
neutrophils to go before worry? I asked for all blood results to be
sent to us- which they are- I am reviewing my husband's and was
curious. His neutrophils are 1.1 right now...thanks in advance!
Merry Christmas to all!
shalyn
Nancy:
Thanks for the tips. The best resource we have are from others experience. I
apprecieate you sharing with me. I am hoping to see the side effects lessen
soon. I am almost two weeks into the sprycel. The headaches are not as bad as
the first couple of days. Have a great holiday!
Therese
Nancy Cogan <ncogan@...
I was not used to the level of nasal/sinus congestion that I (and others
had) with Sprycel.....a friend and I were using a Neti Pot daily for nasal
saline rinses and that helped....even twice a day. Find one at a health
food store. I did not have the headaches, but many others do. For the acid
reflux/heartburn, use some kind of greens product....any thing super
alkaline, much better than using drugs for it. A good produce is Garden of
Life Acid Defense.....also at a health food store. I did have the super dry
skin that did not feel like normal skin.....not very pliable. Use tons of
moisturizer.....even putting vaseline on your skin, olive or almond oil in
the bath water or on your skin, etc....there are many good products. At
first it did feel like I was spending a good part of my day doing all this
stuff to offset the side effects......
then they went away.
Nancy C.
Glad to hear you are feeling better Susan. I always think it is a matter of
perspective.....and that you can choose to shift your point of
view.....sometimes you literally have to lift up your feet and move to a
different spot to change your perspective.
You know the story about the two cousins....one is an optimist and the
other is a pessimist.
The first one gets a whole room full of wrapped gifts but is not excited at
all.......doesn't even think he wants to bother to open the presents
because he probably didn't get anything he wanted.
The other is taken out to a barn, to a stall that is full of dirty straw
and horse poop. He runs in and is throwing the stuff around, happy as a
lark. When they ask him how he can be so happy, he says....."I know with
all this horse poop, there has to be a pony somewhere!"
Nancy C.
I was not used to the level of nasal/sinus congestion that I (and others
had) with Sprycel.....a friend and I were using a Neti Pot daily for nasal
saline rinses and that helped....even twice a day. Find one at a health
food store. I did not have the headaches, but many others do. For the acid
reflux/heartburn, use some kind of greens product....any thing super
alkaline, much better than using drugs for it. A good produce is Garden of
Life Acid Defense.....also at a health food store. I did have the super dry
skin that did not feel like normal skin.....not very pliable. Use tons of
moisturizer.....even putting vaseline on your skin, olive or almond oil in
the bath water or on your skin, etc....there are many good products. At
first it did feel like I was spending a good part of my day doing all this
stuff to offset the side effects......
then they went away.
Nancy C.
Hi all,
Thanks for all the kind words, advice and cheering up you did this evening.
Every bit helped. I was tryingto send you some very funny non-pornographic
photos of dogs and cats to make you smile. Didn't know I couldn't send photos
on this site. Sorry.
Cheerier than before,
Susan
Hey My Hero, I received your IM and will chat with you over the weekend. Thanx
for your poem bringing us to the true spirit of Xmas. As always, Kim & U are in
my prayers...U 2 Group.
"K"
"I AIN'T FINISHED YET"!!!
Thanks everyone for your advice, support and most of all for reading my
mini-rant about the holidays. Here's something to make you smile!
Susan L
Hi there
I don't post often but I visit every day and soak up knowledge so
thanks to all you knowledge providers out there.
Had to respond to this post tho. I am 48, was diagnosed in November
last year but we still managed to have a really good Christmas.
Today the sun is shining, it is really hot and the sky is big and
blue. The garden is looking beautiful and the kitchen is full of
home grown vegetables.
I have found a green thumb which I didn't know I had - a gift of
CML. If I was still madly running in the rat race and sitting for 3
hours a day in traffic I would never have discovered this.
I have found out that my children (22, 19 and 16) are really
interesting people and not just mouths to feed and bodies to clothe.
CML forced me to slow down enough to really get to know them.
I have found out how much my dog loves me and what he does all day.
Didn't know any of that before CML. I never stopped long enough to
think about it actually.
I have read some amazing books this year, learnt some new skills and
discovered exactly how much my husband loves me and how much he is
willing to walk this path with me - CML made me do this.
I can do my Christmas shopping in daylight!!! Wow - never done that
before except over really hectic weekends. So tomorrow when I go to
the shops, dealing with the exhaustion and the nausea and the threat
of a sudden urgent need to go to the toilet NOW, if I add it all up I
will think that CML comes with a gift. We just have to look for it
or rather sit still long enough for it to find us.
In case you are wondering about the Chirstmas weather I am
describing...I live in Cape Town, South Africa.
Sorry for the long post but I needed to say this to people who
wouldn't think it cheesy.
Have the best Christmas you can possibly allow yourselves to have.
Being happy is a decision....which is another CML discovery for me.
Love Jane
My Christmas Wish For All
By Skip Duffie
The night is cold, the stars are bright,
the wind moans low on this winters night.
The animals witness a woman give birth,
the Son of God has come to earth.
Men of wisdom standing near,
A star has led them to this child so dear.
Joseph smiles at this child so small,
born to Mary in this manger stall.
The Shepherd's in the fields too fright,
to hear a choir on this silent night.
Hark the angels shout and sing,
Jesus the child is our newborn king.
Peace on earth we say to each other,
and treat each one as our brother.
Please do not forget my Christmas prayer,
Keep Jesus in your heart throughout the year.
Dear Skip, did you write that poem yourself? It is beautiful! I love
poetry.....Lynne A.
So Susan where are you that you have ba humbug .Sounds like a aggressive
town.JUst cold here central tn. Hope to leave soon for the south inFla.Should
get the ok from doc.
Hello Everyone,
More updates from ASH - If you are having trouble finding the
discussion site on the CML Society website, just copy and past this
link in your browser and scroll down the page to read the latest post.
http://www.cmlsociety.org/ash.php
Cheers,
Cheryl-Anne
Hi Everyone!
I just returned from one day of shopping and another day of wandering through a
bookstore and making "To Do" notes while having coffee that was way too
expensive. But that's just the way it is now for good coffee. I'm taking kind
of a poll. This has been a horrible holiday season for me. The worst in my
memory. People hinting that I should leave town when I make the slightest
comparison to California where I lived for 24 years. People on the road are
maniacs and the vanity plates here are mean instead of clever or funny.
Television which is barely watchable on the best of nights is unwatchable now
because the advertising is upsetting.
I'd just as soon skip Christmas if this is what it's going to be like. Anyone
else? Maybe it's just around here -- politics is blood sport, after all.
Susan L
The full text is available here. Don't know for how long.
Zavie
http://content.nejm.org/cgi/content/full/355/23/2408?
ijkey=c29034c384b84641a11f90eaad7e976050fae44c
Hello All,
I've arrived in Orlando, it is a bit on the chilly side, but that is
o.k.
I have posted the updates from last night's meeting on the
www.cmlsociety.org website.
Please do not hesitate to contact me if you are having any trouble
reading them.
I will be posting more tomorrow up until Tuesday.
Thankfully, today is a slow CML day or otherwise I could not have put
all my notes together. However, Sunday, Monday and Tuesday will be
quite busy days for CML
Cheers,
Cheryl-Anne
Welcome to the group Alison. May I suggest that you tell us a little
bit about yourself. We're always happy to welcome new members to our
group. I think some of us might be put off just a bit however, by
someone who joins the group and right away asks us to open up our
deepest darkest fears, exposing our vulnerabilites to someone we know
absolutely nothing about. Perhaps if you shared some of your feelings
and how you're dealing with leukemia, others will be more comfortable
sharing their feelings.
Tracey
dx Jan 2002
Newly Diagnosed Myeloid Leukemia Responds to Imatinib
In a 5-year follow-up of patients with newly diagnosed CML, imatinib
was superior to interferon-{alpha} plus cytarabine.
The dramatic efficacy of imatinib (Gleevec) in chronic myeloid
leukemia (CML) patients has made it a paradigm for targeted cancer
therapies. Researchers now provide 5-year follow-up data on patients
who were treated in the phase III, industry-sponsored, IRIS study.
Eleven hundred six patients with newly diagnosed CML were randomized
to daily oral imatinib or the combination of interferon- plus
cytarabine. The primary endpoint was event-free survival; secondary
endpoints were complete hematologic, cytogenetic, and molecular
responses. Crossover was allowed for inadequate response to or
toxicity of originally assigned therapy; 65% of patients crossed
over to imatinib, whereas only 3% crossed over to interferon- plus
cytarabine. As a result, very few patients received long-term
interferon, and this report focused on the imatinib-treated
patients.
By 12 months, 96% of imatinib patients achieved complete hematologic
responses, and 69% achieved complete cytogenetic responses; these
rates were 98% and 87%, respectively, at 5 years. At 5 years, 89% of
patients were alive, and 83% had experienced no disease-related
events. The estimated annual rates of progression to accelerated
phase or blast crisis decreased over time: 1.5% in year 1, 1.8% in
year 2, 1.6% in year 3, 0.9% in year 4, and 0.6% in year 5. All
patients who achieved complete cytogenetic responses and molecular
responses (defined as
survived at 5 years, without progression to accelerated phase or
blast crisis. No difference in survival was noted between patients
who were assigned initially to imatinib and those who crossed over
to imatinib. Side effects of imatinib therapy included edema, muscle
cramps or joint pain, diarrhea, and rash. One patient developed
heart failure.
Comment: Only 7% of imatinib-treated patients progressed to
accelerated phase or blast crisis. Risk for progression decreased
over time and was <1% in years 4 and 5 of imatinib therapy; overall
survival of imatinib-treated patients was 89%. These impressive
results confirm imatinib as standard therapy for initial treatment
of CML patients. As noted by the authors, the current recommendation
is to continue therapy indefinitely, because relapses occur in some
patients when treatment is discontinued. Ongoing questions relate to
administration of higher initial doses of imatinib and integration
of next-generation kinase inhibitors (i.e., dasatinib and nilotinib)
into treatment algorithms. Safety and toxicity of long-term therapy
still require assessment, especially in view of recent reports of
cardiomyopathy and congestive heart failure in a small subset of
patients.
Michael E. Williams, MD
Full report coming.
--
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 (suspect)
2.8 log reduction Sep/05
3.0 log reduction Jan/06
PCRU 11/06 at The Ottawa Hospital
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
I'm curious about what other leukemia patients have gone through with their
treatments
and ongoing process with their leukemia.
Please write back as soon as you can, thank you!
1. When hearing your diagnosis, what was one of your biggest fears?
2. What did you do to deal with this fear?
3. At this point, where is that fear in your life now?
Thanks,
Alison
Dear,Susan: (from sunny London)
I am worried to hear that you are having alot of shortness of breath.
I was on Gleevec from June of 2001 to Oct 2006. For the last 6 to 9
months I had alot of shortness of breath also, I did my best to just
ignore it, but I remembered hearing the Gleevec ( as well as other new
leukemia drugs) have been linked to heart damage, they are calling it
(CHF- congestive heart failure). Well I mentioned to my Onc, that I
have heard of this study then I told him that I had been having
shortness of breath. He did an office exam, but found no signs of CHF,
but he said that to be sure, he would do a (echo- ultra sound on the
heart). That test showed that indeed I have CHF and they did surgery
right away and installed a defibrillator. My heart feels better but we
stoped all meds for the leukemia. My last fish test showed that Im no
longer a member of Zavie's Zero club, but we are still not sure what to
do next. Dr. Weeks is checking on that and I see him again soon. Anyway
what Im trying to say is that you are right to be worried about the
shortness of breath, maybe think about getting the echo test on your
heart.
Best wishes to the group.
TTFN. Scott
Do you have the Zero Club list on line?
In general I'd stay away from herbs as some can speed up elim of Gleevec from
the body (I do take vitamins and amin acids though) here's a site from sloan
kettering re: supplements:
www.mskcc.org/mskcc/html/11570.cfm
Paul Shipley <paulorkay@...
Any one have info on ASTRAGALUS ROOT helping to bring up wc. My doc
really does not know much about herbs,he did say keep away from root. paul TN.
Any one have info on ASTRAGALUS ROOT helping to bring up wc. My doc really does
not know much about herbs,he did say keep away from root.
paul TN.
Hi Chery Anne,
So glad you're doing well with this creative approach. Do you know anyone else
on this regimen and how they're doing?
Susan L
Tracey,
Just a point, from my perspective, no one here is saying anything
about Gleevec being EVIL - quite the contrary.
The use of the word Magical is semantics, but no one can draw
conclusions that because someone questions the use of the word then
they must think the drug or the article was evil or not good. It
was a comment on the use of a word.
I did read the series on the cost of drugs and it was well written,
but I personally do not believe that you can look at any drug
without looking at cost, access and outcomes. If people can't
afford it or access it then it doesn't realy matter how well it
works, just ask all the dying AIDS patients.
It isn't easy, but sometimes it helps to put our emotions aside and
look at this from a different perspective. It certainly allows us
to be more critical - without being cynical.
But I really do not think anyone here should have taken any offense
to the objection of the use of the word magical.
Cheers!
Cheryl-Anne
Hello to the group
I try not to post much as I know little/
although DX 29 years ago, I never got
involved with the nuts and bolts of CML.
There was almost nothing for me back then,
except luck, God or whatever you believe in.
On the Globe and mail article I say what a
great article, as for magic, to some it is
and I am happy for those who are on Zaviems List
for me Gleevec did not work as well as the Doc
wanted, in fact I have been receiving transfusions
at least once a week for Platlets and or Red Cells/
But just because it did not work that well for me,,
I am so happy for those that it did I call that magic,
and wish we all had that magic. Now I am on AMN107
and will see where that leads me, but to you who
Gleevec
works keep the magic going for all of us.
Great artical Zaviem.
SkipD
DX 1977
I happen to believe that the magic bullet is in
He who holds us in His hands.
Hi Cam,
We are in BC and saw the BMT specialist the other day (she was
fantastic) We may have to also consider BMT as my husband has a
translocation of 3 chromosomes and may be only partially responding
but there are many things to take into consideration. His brother is
being tested as a donor next week so we have all our ducks lined up if
need be. So your counts have dropped - but what is your PCR? I am sure
you are frustrated with everything right now- there seems to be no
reason your neutrophils should be down as well as platelets...let us
know how it goes..
shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley
Hello all,
I have been off Gleevec for more than 2 months because my neutrophil and
platelet counts
have been dangerously low. I have had two platelet transfusions and my counts do
not seem
to be improving. I'm sure more transfusions are coming my way. My doctor is
considering
getting me on Interferon or going back up to the cancer clinic in Calgary to
talk to the BMT
doctors again. Is there anyone out there who had to go off Gleevec? What were
your options?
Did any of you choose the BMT? I would appreciate advice from anyone.
Cam
It seems as though Rita has been offended by the word 'magic' to
describe Gleevec. I feel that this is purely a matter of semantics
but I'll jump into the debate nevertheless.
No one is saying that Gleevec was conjured up by some witches who
put bat wings and frogs legs in a cauldron to brew up our magic
pill.
When we refer to Gleevec as being magical, it is to describe what it
has done for us....it has extended our lives! Is that not
magical? I have no doubt in my mind that I wouldn't be alive today
if it were not for Gleevec and I know I'm not alone in thinking this
way.
If you look up the word 'magic' in the dictionary, you'll see that
one of the definitions is a "feeling of enchantment". If being
alive and functioning relatively normally isn't enchanting, well I
don't know what is.
In a perfect world, none of us would even have CML. Is Gleevec
perfect? No, of course not, and the article specifically stated that
it wasn't perfect. It didn't sugar coat the fact that there are
negative aspects to the drug and it specifically addressed our
uncertain futures so I really don't see how the article
was "deceptive" as Rita claimed.
May I suggest that Rita (and anyone else) who thinks that Gleevec is
so evil, go spend some time with cancer patients who are in stage 4
of any number of cancers, and are getting a combination of chemo,
surgery and radiation with the end result of getting a 6 month
extension to their lives. Then ask these patients if they could
hypothetically take a pill like Gleevec that would allow them to
continue to live for a few more years (possibly even 20 years), ask
them if they would consider that pill to be 'magical'.
As for the cost of the drug, no one will disagree that it's crazy to
charge this kind of money for a drug but this wasn't the point of
the article and it certainly doesn't negate what the drug has done
for us. The issue of the cost of cancer treatments was brought up
in another article in the series that the newspaper had so it wasn't
ignored by any means. The purpose of this particular article was to
show that there are better ways to treat cancer other than the near
embalming that is used for most cancers and I think it did a great
job of getting that message across.
Hello All,
I haven't posted here in a while but here are my comments.
I think the Globe and Mail article was fairly balanced and represented the
hardships - thanks for bringing them up Tracey, as well as some of the
blessings - Ron, Zavie and Eleanor being in a slightly different age
category, give us a different perspective.
In defense of Rita and the reference to magic, I think I know where she is
coming from. When we consider that Gleevec isn't the "first" targeted drug,
actually Retinoic Acid, or Vitamin A which is used to "CURE" APL was the
first targeted drug (Suzan M. taught us that). Using words like "magic" is
deceptive because it diminishes the research, work and dedication our
Doctors (and Dr. D. specifically in the case of Gleevec) poured into
getting this drug to market. As we all know, CML is an incredibly complex
disease and we still have much to learn about it.
Like everyone else I am happy for my fellow CMLers who have achieved a level
of remission with with Gleevec. But cancer is a formidable enemy and
remission does not equal cure. As long as there are stem cells surviving
(and sleeping happily in a quiescent state) then resistance and relapse are
concerns.
I prefer to think that there was nothing magical about the research and
determination that goes into discovering these life saving drugs. I believe
that they represent many long hours of painstaking research and testing and
re-testing, then the collective holding of our breath while we all wait to
see if this drug works or not.
From looking over the list I see there was a discussion about interferon.
Yes, I have gone back to interferon and grateful that it was still an option
for me. I am on low dose pegylated interferon and doing incredibly well.
Why did I switch back? I developed kidney problems, probably as a result of
a kidney problem during my adolescence. Pegylated INF is quite remarkable
in that the side effects are greatly diminished. I can say this because I
have tried both. I only inject once every 10 days which gives me plenty of
time to "forget" about CML. I usually have only a very slight achy feeling
two days after injecting. No more GI problems, no more low Hgb, and I
enjoyed an incredible tan from the summer sun which hasn't occurred in over
five years. I was careful with sun screen though. I lost 15 lbs without
switching my diet and I exercise and work out more. The Gleevec "foggy"
brain is gone. I am not doing a sales pitch for INF, although I admit it
sounds like one.
As I write this there is the pan European trial called the SPIRIT trial
using combinations of INF and Gleevec. Patients will be given either 400 mg
of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients in
the combo arm will eventually be weaned off of IM and then eventually be
weaned off of INF and be closely monitored. I am in contact with patients
who have stopped IM and are enjoying incredibly low level PCR and watching
their PCR levels drop even further. This is a hopeful sign. After 25 years
of INF science still doesn't completely understand how it works, but this is
all interesting. I hear there is a trial starting in Israel, and then there
is one starting at John Hopkins. I sure wish there would be something here
in Canada.
All this to say that low dose Peg IFN cannot at all be compared to the
horror stories of pre Gleevec IFN, and I would encourage anyone out there
thinking about a combo trial to give it a try. Especially if you are
younger.
Will I stay on IFN? Who knows? I could go to either Dasatinib or
Nilotinib, although most experts would prefer Dasatinib, but I am grateful
for having choices. For now I continue to be in CCR and am close to a 3 log
reduction, you do not need to be PCRU on IFN - but it sure would be nice
;-). It was not easy giving up my PCRU status on Gleevec, but I didn't like
thinking about the possibility of dialysis.
We will all need to manage ourselves according to what works best for us
individually. I encourage the competition because it is clear to me we will
need even more choices as time goes on. But fingers are crossed for a cure.
Now, if humanity can figure out a way to get these drugs to all patients
regardless of their financial status and where they live, well, now that
just might be getting a little closer to magic.
Peace, Love and all groovy things,
Cheryl-Anne
Check her out at her blog.
Zavie
http://www.glamour.com/lifestyle/blogs/editor
Hello Does anyone have any information on Erin that was DX and was
going to try having a baby.
Hi, I had a very low white blood count, only 19,000 at diagnosis. I am on 400
mg. and went into remission in only six months. Chris in minn
dx 12/03/03
My Hubby was Dx with CML 10-2003; on Gleevec from 10-2003 to 11-2004
meds with too many side effects; took off Gleevec11-2004. (Gleevec 400 mg to
800mg.)
He was put on Sprycel 70mg. 7-2006 for 6 wks. took off because his counts went
down too low and too fast. Now he will go on lower dose 20mg.of Sprycel as soon
as its available. (All cancer meds quit working for him; he is now without any
cancer meds until we recieve the lower dosage of Sprycel; this all has happened
since 7-2006)
This has been a roller coaster ride; what worked for one person didn't work
for him;
Now we are trying to fight off all the infections..
He isn't a canidate for BMT; no more BM Asp.
I wish you all the very best!!!!
kristi122677 <kristi122677@...
As most of you know...I am on here for my best friend Stacey. The site
is fantastic.
HEre's where we are....
Doctor's appt yestruday....BOne biopsy 2 weeks prior.
I hope I am saying all of this correctly. Doctor is stating 91% good
cells. 9% bad. The 9% is of GREAT concern. She should be in remission
already from the Gleevac and she's not. Double the dose of Gleevac from
400mg to 800mg....apparently the side effects are greater per the dose.
In three months they will go back, do another bone bioposy and if
NOTHING has changed....and if she is not in BLAST phase by
then....either a bone marrow transplant or possibly a new drug.
Does any of this sound or make sense to anyone. I guess we were just
hoping for some better news.
Anna
I am new to this group. My sister found it for me. I was diagnosed
with CML in June. All of my blood counts including my white blood
cells were in a normal range before I started the Gleevec. I started
the Gleevec the 1st week of Sept which was a delay but I needed to
wean my newborn son from nursing. I took it for 4 weeks and have been
off of it since Oct. 10th due to low blood counts. They drop every
week to 1.5. I get weekly Neuprogin shots but it still drops by the
5th day or so. I have heard of high white blood cell counts with CML
but did anyone have low or normal white counts at diagnosis? Do I
just start again on the Gleevec at 300 mg or start at 400 mg? I've
been off of it for over 6 weeks now. Any experience with this? Thank
you!!
Wow! How did doctors even know you had it with normal WBC counts?
Hi
I live in Greenwich Connecticut, not that far away
really. Always happy to make contact with another
CMLer.
Vanessa
As most of you know...I am on here for my best friend Stacey. The site
is fantastic.
HEre's where we are....
Doctor's appt yestruday....BOne biopsy 2 weeks prior.
I hope I am saying all of this correctly. Doctor is stating 91% good
cells. 9% bad. The 9% is of GREAT concern. She should be in remission
already from the Gleevac and she's not. Double the dose of Gleevac from
400mg to 800mg....apparently the side effects are greater per the dose.
In three months they will go back, do another bone bioposy and if
NOTHING has changed....and if she is not in BLAST phase by
then....either a bone marrow transplant or possibly a new drug.
Does any of this sound or make sense to anyone. I guess we were just
hoping for some better news.
Hi, everyone. I would appreciate hearing from any other CMLers who
live on Long Island (NY). Thanks. Warm regards. David (Dov)
Hey group,
Does anyone has a list of drugs which we cant use with Gleevec? I only know
the list i'm giving below. Thnx..
http://www.drugs.com/mtm/g/gleevec.html
Yusuf Cipe
Dx March 2006
400 mg Gleevec
Istanbul
the ones I know fore sure are Staten's used fore cholesterol care
Hello, Yusuf. I don't think that missing one dose is a problem. I
have missed a dose a couple of times and it does not seem to have
had any adverse consequences. I think you did the right thing by
just taking your daily dosage today -- I remember reading that, if
you forget to take it one day, you are NOT supposed to take a double
dose the next day. I would not worry if I were you. Warmest
regards. David (Dov)
Hi all,
I find it disturbing that television is so obscene -- including and maybe
especially the commercials, on every station in Virginia on the Eve of the most
wonderful of family holidays. I can't watch it. So, I'm taking the time
instead to wish all of you a special and warm holiday tomorrow. As for me, I am
now going to read a small volume I just purchased call "On Truth" by Harry G.
Frankfurt. It's hardcover is all in plain, glorious gold. His last book, which
I hear is related, was called "On Bullsh-t.' I must try and pick up a copy
since there's so much of that around these days. For now I'd like to focus on
the positive which is getting harder and harder to do.
Zippy, Jumby and I will have a good time tomorrow and I hope you do, too!
Happy Thanksgiving!
Susan L
Hey, Paul. Of course I'm not sure, but I may have gotten CML from
being near Ground Zero on 9/11 and in the weeks and months
afterwards. I worked in lower Manhattan back then and I was breathing
all that dust and debris for quite a while. Ultimately, I don't know
and, without any way to prove it, I can't say I really think about it
all that much. Warm regards. David (Dov)
Hey all,
Yesterday i couldn't remember if i took my gleevec or not. I did not take a
new one because i wasn't sure about i forgot it. And i took it today as i always
do.
Can this cause a problem if i did forget it?
Has there been a post on how you got it. Myself I worked for telephone
co 29 years.Climbed a few poles,I don,t think that was it,however they
were free for a few years,so I cut them for landscape ties and more.
Some dust and contect to skin.Maybe creosote was the one.No nuclear
stuff,maybe some benzene when it was in paint.I,m retired now and was 10
years till diogused. paul C M L 05
Everyone forgets us poor Atlantic time zone people the
time for me would be 11PM atlantic time and a half
hour later in Newfoundland bit late for this guy
PCR may also be done from BMB & BMA.
From what I understand the value is even more significant when done by BMB/
BMA versus by blood ( which I also have done every 90days by PB)
Lisa Martinez
dx 5-2000
Gleevec 6-1001
PCRU 8-2001
I am not sure about your question, but PCR is a totally separate test done
with blood from your arm. Not all centers can do this test, and some places
have to send blood away to special labs for the test.
There are 3 different tests:
cytogentics done from the bmb or bma
FISH test done on bma or arm blood
and PCR done on arm blood
Keep asking whatever questions you have.
Nancy C.
Hey Group:
This is the information I received last week from the LLSorg. national
headquarters, so it is correct and up-to-date. I don't know why it didn't post
correctly to you guys, here's to you again. . .
Teleconference: December 13, 2006
Times: 8:00 p.m. - 10:00 p.m. Eastern Time
7:00 p.m. - 9:00 p.m. Central Time
6:00 p.m. - 8:00 p.m. Mountain Time
5:00 p.m. - 7:00 p.m. Pacific Time
Topic: CML 'New Breakthroughs in Treatment"
To Register
Register before December 6, 2006
E-mail: CMLLinks@...
Telephone: (877) 264-4949, ext. 23
Web: www.LLS.org/leukemiaeducation or www.LLS.org/CMLLinks
Incomplete registrations cannot be processed.
Please be sure to include your name, mailing address, e-mail address, and
telephone number. Within 1 business day of registering, you will receive a
confirmation supplying details of the program.
If you would like more information on this or other programs sponsored by the
The Leukemia & Lymphoma Society, please call the Society's Information Resource
Center toll-free at (800) 955-4572.
Note: These telephone numbers and web sites are accurate virtually anywhere on
the planet.
Speakers:
Dr. Brian J. Druker, MD, Investigator
Howard Hughes Medical Institute
JELD-WEN Chair of Leukemia Research
Oregon Health & Science University
Cancer Institute
Neil Shah, MD, PhD
Assistant Professor
Division of Hematology/Oncology
Department of Medicine
UCSF School of Medicine
"K"
"I AIN'T FINISHED YET"!!!
Hi there,
I have never participated in a teleconference before. How does it work? Do
you travel to a conference site?
Cam
This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.
Hey Sister & Brother Survivors:
I received information regarding the next Leukemia & Lymphoma Society's
Teleconference.
It is entitled CML ~~ "New Breakthroughs in Treatment"
The speakers:
Brian J. Drucker, M.D.~~(Father of Gleevec) Investigator
Howard Hughes Medical Institute; JELD-WEN Chair of Leukemia Research
Oregon Health & Science University -- Cancer Institute
Neil Shah, MD, PhD ~~ Assistant Professor
Division of Hematology/Oncology
Department of Medicine
UCSF School of Medicine
To Register:
E-mail: CMLLinks@...
Telephone: 1 (800) 264-4949, ext. 23
Web: www.LLS.org/leukemiaeducation or www.LLS.org/CMLLinks
You may also access Teleconference program archives or contact the LLS.org.
Information Resource Center at 1 (800) 995-4572.
"K"
"I AIN'T FINISHED YET"!!!
Well it is my 8th week off of Gleevec and my blood counts are still too low to
go back on.
Neutrophils-.8 Platelets-9 Whites--I can't remember but low. I am getting a
platelet
transfusion tomorrow because I have red marks all over me and I am bleeding when
I brush
my teeth, go to the bathroom, etc. My doctor doesn't seem to know what to do for
me. He is
consulting with the Tom Baker Cancer Centre here in Alberta, and he says a bone
marrow
transplant might be the next road I am headed down. Are there any other options
for me?
Cam
Take all the help you can get from Novartis, they will see that your Grandmother
gets her Gleevec and they will be able to point you in the right direction
after that.
There are non-profits out there that will help, also. Right now you are
covered. I know its easy to say dont worry, but dont worry. Take everything day
by day.
I dont know what Cancer Center you are using, but I know Anderson in Houston
has
pharmacy financial consultants that have info. on how to get drugs when you
cant afford them.
By the way, $2900 isnt a bad price. Mine is over 4k and I take another drug
that is the same. I get help from Anderson.
God bless,
Denice
skipperkristie <skipper3@...
My grandmother has been taking Gleevec 400 mg. for a week. Her
medicine
was called in to a local drug store by her doctor, the same day her
diagnosis came in and when we found out it was $2,900, I called the
American Cancer Society. They gave me some numbers and they gave me
some more numbers and from that we got up with Novartis, the maker of
Gleevec. They sent her first month supply, free and they say that if
she is approved, she can get it free for up to a year. What about the
rest of her life. Even with Medicare Part D, it will cost her at least
$1,000 the first month, then about $800 a month after that. What does
she live on? I ask that anyone that is taking this medicine to please
let us know how to afford this medicine.
My grandmother has been taking Gleevec 400 mg. for a week. Her medicine
was called in to a local drug store by her doctor, the same day her
diagnosis came in and when we found out it was $2,900, I called the
American Cancer Society. They gave me some numbers and they gave me
some more numbers and from that we got up with Novartis, the maker of
Gleevec. They sent her first month supply, free and they say that if
she is approved, she can get it free for up to a year. What about the
rest of her life. Even with Medicare Part D, it will cost her at least
$1,000 the first month, then about $800 a month after that. What does
she live on? I ask that anyone that is taking this medicine to please
let us know how to afford this medicine.
Hey Group:
Dr. Drucker stated that CML is "truly a Chronic disease and a newly diagnosed
person has a 25 year median for survival".
As you all know, I send a WELCOME letter to Newbies and for several months I
have been 'hmmmmmmmming' about my sister & brother PIONEERS/SURVIVORS ! ! !
I found my Hero~~Skip~~28 years and my Heroine~~Gwen~~12 years; that I used
after my diagnosis. There are many, many more of U from the Clinical Trials,
reaching "0/Negative, PCR" etc. I am aware of Zavie, Ellen, Dorothy, John etc.,
also BMT.
When I send the letter to the Newbies, I would like to include that there are
1,000+ "0/Negative~~Fish Test"; "???~~PCR"; and "???~~PCRU"??? Any information
you can give me will be greatly appreciated. My email address:
kttweety@...
How many of us are . . . CML ALIVE & KICKING ? ? ?
I know after my morbid mortality at diagnosis. . .
" I AM A SURVIVOR & I AIN'T FINISHED YET " ! ! !
All are in my prayers. . ."K"
"K"
"I AIN'T FINISHED YET"!!!
Tracey,
I take curcumin,reservetrol, fish oil, probiotics along with usual vitamins.
Herbs can be tricky though as many can speed elimination of Gleevec from the
body. You might be interested in the Sloan Kettering website below. Give a
prettty balanced view (I think) of the risks and benefits of most nutritional
supps.
My best,
Rick
www.mskcc.org/mskcc/html/11570.cfm
Tracey Holden <holdenmt@...
Hello everyone --
I was wondering if anyone could offer info on taking supplements to
help with the symptoms of CML.
For the last few years (pre Oct/Nov 2006 and pre dx) I have seen a
Traditional Chinese Dr. that would put me on various herbs and
supplements that ran the gamut, she also used acupuncture. Despite all
of this I never really felt any relief or change in my overall health.
Granted we thought we were just dealing with chronic back pain (2
degenerative discs)and maybe fibromyalgia -- maybe we have the REAL
answer to my problems now.
I have heard mention things such as Vitamin B-12, fish oils and
probiotics. Any input would be greatly appreciated.
Thanks and be blessed -- Tracey (near Atlanta)
Hi Tracey,
Many of us take various supplements such as calcium, magnesium, vit
D, B12 and iron to conteract the various side effects of Gleevec.
Calcium and Magnesium are particularly good for helping with the
muscle cramps (just don't take any calcium within 2 hours of your
Gleevec).
Your best bet is to talk to your doctor about what would be best for
you but I do want to caution you about taking herbs or
other "natural remedies". There are a number of them that interact
with Gleevec so you really want to be careful about what you take
with Gleevec. Off the top of my head I can think of St. John's Wort
and echineacha that are contraindicated with Gleevec but there are
many more than that.
Take care,
Tracey
dx Jan 2002
Hello everyone --
I was wondering if anyone could offer info on taking supplements to
help with the symptoms of CML.
For the last few years (pre Oct/Nov 2006 and pre dx) I have seen a
Traditional Chinese Dr. that would put me on various herbs and
supplements that ran the gamut, she also used acupuncture. Despite all
of this I never really felt any relief or change in my overall health.
Granted we thought we were just dealing with chronic back pain (2
degenerative discs)and maybe fibromyalgia -- maybe we have the REAL
answer to my problems now.
I have heard mention things such as Vitamin B-12, fish oils and
probiotics. Any input would be greatly appreciated.
Thanks and be blessed -- Tracey (near Atlanta)
---
Hi
Just my 2 cents-I was at a meeting at Princess Margaret Hospital in
Toronto in September where Dr. Giles from MD Anderson was speaking.
In HIS opinion 800 mg is the optimal dosage for newly diagnosed
patients in chronic phase. Your doctor and you will decide what is
the best dosage for you. Each case is different and personal.
Hey Tracy:
(gf) I was initially put on 400 m.g at diagnosis, 600 I couldn't tolerate at
all. Over almost 4 years I have been on 300 and this man is 65. Though I am a
wee bit younger, it could have something to do with overall health, I recall
another sister on 300 as her standard dosage from 2 years ago (my 2 cents only).
"K"
"I AIN'T FINISHED YET"!!!
You were misinformed. He had CLL and probably never even knew what
Gleevec was.
Hello everyone......i believe this is the type of leukeima that Ed Bradley
had...I know we have all asked what type he had.....
Take care everyone!!!
Penny
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Profile [input] symbol lookup The Leukemia & Lymphoma Society
Available to Offer Its Expertise in Light of Death of 60 Minutes' Ed Bradley
Available to Comment WHITE PLAINS, N.Y., Nov. 9 /PRNewswire/ -- The Leukemia &
Lymphoma Society is available to comment on chronic lymphocytic leukemia -- the
type of leukemia that caused the death of veteran CBS newsman Ed Bradley today.
Bradley, an anchor on CBS's 60 Minutes, was 65.
The Society can address the particulars of chronic lymphocytic leukemia -- the
symptoms, treatment options and information on where to turn for help.
To arrange interviews contact Andrea Greif at 914-821-8958 or 914-772-3027
(cell phone), or email andrea.greif@....
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society(R), headquartered in White Plains, NY, with 66
chapters in the United States and Canada, is the world's largest voluntary
health organization dedicated to funding blood cancer research and providing
education and patient services. The Society's mission: Cure leukemia, lymphoma,
Hodgkin's disease and myeloma, and improve the quality of life of patients and
their families. Since its founding in 1949, the Society has invested more than
$483 million in research specifically targeting leukemia, lymphoma and myeloma.
Last year alone, the Society made 4.2 million contacts with patients, caregivers
and healthcare professionals.
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There are some types of leukemia that will present with a very low
white count (Hairy Cell Leukemia is one) but CML does not present this
way. It's quite the opposite with CML, the white count will be higher
than normal.
Good luck,
Tracey
indication of leukemia? Did anyone have this as an initial symptom?
Thanks "}
had a problem from dairy way before CML some of the post there is a
wide range of symptom's pS TN.
anybody out there get any help for the pill I dread my insurance
changing ,things always do.certrail tn cml 12/05
Hi there,
I have little education on CML (husband diagnosed 2 mths ago) but am
wondering why Gleevec is not he first course of action as it has shown
to completely revolutionize the care of CML? I would suggest the
parents get second opinions...it has helped us for sure...as well as
take info from this great group!
Will pray for this little girl...
shalyn
"Catch on fire with enthusiasm and people will come for miles to watch you
burn." - Charles Wesley
Thank you for the info. She is actually taking Gleevic.
Hi, I am trying to find anyone who has a child who has been diagnosed
with CML. My friend's 3 year old daughter was just diagnosed with CML
& started Chemo for it on Monday. As you all probably know, it is
nearly unheard of in a child of this age & I want to find any
information out there that is helpful. Trying to find the best Dr.
the best hospital, looking for the best place for BMT. You name it.
Even someone who I can swap stories with you know?
So, I have started skimming through page after page trying to find &
decided this could take hours upon hours & thought maybe if I posted,
someone would reply. I'm interested in any & all stories, no matter
what the circumstances are. I wish you all well & I hope to talk to
you all more later, as I intend to be around allot!
Thank you all so much for taking the time to read this!
Timi
I suffer the exact same things and am stil in remission. I am on Gleevec
800mg and am in the hospital frequently with dehydration due to diarrhea. I
have
all of the systoms you could possible have with Gleevec. Extreme fatigue,
bone pain constantly, low counts, nausea and vomiting, ALL of my hair on my body
has gone to white. I used to be strawberry blonde. I also have loss the
pigmentation in my face so I look ghostly white/Pale.
I take it day by day. I keep my Zofran next to me at all times. I take a
hot bath every morning to help alleviate the bone pain in my legs so I can
function in the morning.
***What my doctor and I decided to try starting last week in that once a week
to every other week, depending on how I am feeling, I go into the infusion
center and he "tanks me up" with a bag of fluids. I also get procrit injections
to help me feel alittle more alive. The fluids, we are playing by ear, just
depending on how I feel. i will tell you that when you are running low on
fluids and are dry, everythign is misearable. The pain is worse, the fatigue is
awful and you just get yourself into an emtional rut. Small things are blown
out of porportion and its so hard to focus. My memory is also bad with
Gleevec but worse when I am dehydrate. My doctor calls me the poster child of
dehydration. I have been there many times and spent many a nights admitted to
the
hospital. Hopefully our plan now will asssist me with staying out of the
hospital.
Hope that helps- Keep your chin up and keep the fluids in!
Jennifer age 34
CML 5/13/05
Gleevec 800mg
3 children (11,7,5)
My sister-in-law has CML and has been hospitalized twice recently.
She tells us she was hospitalized for dehydration and that it has
nothing to do w/ the CML, but we are very concerned that she might
have come out of remission. Does anyone have any info that might calm
our fears? Her symptoms are fever, fatigue, dehydration, pale
complexion, body aches, and flu-like symptoms. Are these symptoms
indicative of her coming out of remission, or are they common,
everyday symptoms that she lives with all the time?
Any info is appreciated.
Thanks!
Hey Group: (my 2 cents) The Leukemia & Lymphoma Society is now giving $500.00
every 24 months instead of the previous 12 month period. One more budget-cut for
which we can say Thanx to our government.
Also Acetaminophen has been recalled from Wally World, CVS, and other
pharmacies for having up to 1/3 inch pieces of metal in the capsules. This
medication is processed by by our liver in much the same way as our gold, the
recommended daily dosage for pain is too much for our livers.
Take care. . . all are in my prayers.
"K"
"I AIN'T FINISHED YET"!!!
My husband has had the same thing happen--he was only on Gleevec for 7
weeks, doing awesome till one day his white blood cells tanked to almost
nothing---and he had NO neutrophils (literally, undetectable amounts) and
was placed in the hospital. I dont want to alarm you, but based on all his
docs' recommendations, he was placed in isolation in the hospital, taken off
Gleevec, until his counts came up--it took a month. While there, he was on
tons of antibiotics for fear that since he had no neutrophils, he was
suseptible to anything contagious. As soon as his counts went back up, he
was put back on Gleevec--only starting at 100mg/day and then working his way
up. He currently is only at 300mg/day and when he went yesterday for blood
work, his WBC has dropped again to only 3500. They have left him on 300mg,
and will wait to see where he stands next week. They are hoping his counts
rise again slightly, so that they can get him to 400mg/day and that is where
he'll stay.
I wrote to Dr. Druker myself (who invented Gleevec), about my husband's
situation. He wrote back and his advice was to try and stay on 400mg/Gleevec
per day and to NOT lower it. But, in order for the WBC to stay in the
"normal" range, that would require shots of neupogen (WBC increaser). As of
now, my husband is not on the neupogen yet, I guess his docs will wait to
see what his bloodwork reveals next week. Although, while in the hospital,
he was receiving shots of neupogen to try and "kickstart" his white blood
cells.
I really feel for you--after having seemingly great success, for this to
happen. Let's keep our hopes up and pray it all works out.
Regards,
Wendy Cervera
Hi Tracey,
The New York Times says he died of complications of CLL. It said he has
had this a long time but only recently ran into problems because of an
infection.
Dorothy
Hi Everyone,
I just heard on the news that Ed Bradley passed away today
from "complications of leukemia". Does anyone happen to know what
type of leukemia he had? I hate when they don't give more details
<sigh
Tracey
Hi all,
I just had another bone marrow biopsy today and the accompanying blood work
done. They
told me that my neutrophils and whites are continuing to drop and they don't
know why. My
doctor has had me off of Gleevec for 7 weeks now because of the counts and I
don't feel
comfortable about it. Does anyone out there have any experience with this kind
of situation
or some advice for me? Here I thought I had it made with Gleevec and now I am
starting to
panic a bit.
Thanks,
Cam
Donna,
In addition to this wonderful advice I would encourage you to call
your State and Federal Representatives. They may be able to help
you and you have a story that they need to hear.
Kevin Conrad
Father of Kyle dx 6/01 PCR undetectible on 800mg of Gleevec
Tell him you are expected to be on these drugs for years and will do anything
you have to in order to live a decent quality of life. Then demand a complete
copy of your medical records (every last one!!) Time to play it tough!
mtmaynor@... wrote: I have a visit to my oncologist next week. In
the past, he has minimized my
side effects and while he is nice and supportive, I feel belittled when I
mention the different side effects I have. Do any of you have recommendations
on how I can present it to him, to get a more satisfactory response.
Often, he is not sure what to do and confers via e-mail with Dr. Francis
Giles and MD Anderson. One thought is to email him a list and frequency of the
side effects and give him time to confer with Dr. Giles before my
appointment. Another is just to write down everything, giving it a pain number
from
1-10 (10 being the worst) and discussing it with him there. Unfortunately, both
my father (who is 81) and my wife are adamant that I get some sort of relief
from my side effects or switch to Sprycel.
Any ideas would be helpful.
With warm regards,
Matt
Jacksonville, FL
DX January of 2005
Gleevec Since May 2005
Father of 3
mtmaynor@...
Hello all, I've been lurking here for about 6months but have never
posted, I was dx nov 05 with cml. have been on Gleevec 400mg then
300mg for a yr now, minimal side effects, tired all the time, I too
have had such severe spleen pain I ended up in the ER, after CT scans
and ultrasounds they were not conclusive but thought I may have had a
spleen infarct, my onc says this is common. The worst is last month my
insurance changed, apparantly my company chose a different plan, still
is HAP but the benefits have changed, they now have a 2,000$ a yr cap
on prescription, and well we all know the cost of our golden pill, so
now trying to find help with the 2,700$ a month cost. I have filled
out all the stuff for Novartis but have not heard back, took my last G
yesterday and am a bit scared. If anyone has any ideas please pass
them on. Thanks, Donna
Hi everyone!
I hope this finds everyone well! I have a quick q if it's ok? My
husband has been on Gleevec for 8 days and while his side effects are
minimal at this point- he has has quite an increase in pain in his
spleen over the week - even with it keeping him awake for the night on
Sat. Has anyone experienced this when beginning Gleevec? I am sure
it's normal but just curious!
I also wanted to say how wonderful this list is- I read it an find
encouragement on a daily basis...thanks so much!
Shalyn
Hi Richard,
It sounds like you might have an internal bleed somewhere. Have you
had this investigated at all? Some members have had bleeding ulcers
and/or bleeding in their intestine which caused a rapid and severe
drop in Hgb and RBC's.
Hope you get answers soon,
Tracey
Hi all. As most of you know I lurk a lot around the edges posting
only when I feel I have something to offer or need to ask. This is
an asking time. In Aug. my blood work was in order as it had been
for almost three years. Mostly normal readings on CBC with RDC and
HGB just to the low side, Q-PCR .00145. The end of Oct. I had my
CBC done at the VA to renew my Gleevec Rx and it was all over. White
just to the High but Reds dropping, I had the Two ONCs confer with
one another and redid the CBC 3 days later at the first Lab and the
readings were lower than Monday. Took extra Iron and Potassium over
the Weekend and took another CBC and the reds were still dropping
and everything else was normal. Today, I had a 2 pint transfusion
and my main ONC was there and we visited and he is quite puzzled. I
have nothing in my blood work to indicate a reason or leaning to
help him explain the loss of RBC and HGB. I will receive other
testing later this week to rule out other possibilities. He had
already reviewed the Gleevec info and said that all info there
regarding severe anemia indicated something more than red blood
cells should be involved. Has any of my list mates seen or read
anything that might be a clue to work with? Sorry to be so long but
wanted to hopefully give enough info for good input.
Richard H.
dxd 2/03
Gleevec 400mg 3/03
PCRU 6/03
Q-PCR .00143 11/05 and holding
I've met a lot of people, including myself, that were told initially
that it was AML. It provides a hearty shock to the system to think
you will be spending the next 4 months in the hospital for it. The
doctor told me to go home and pack my bags. I freaked!
Turned out it was CML which was like winning the lottery. AML
patients don't have the blessing that we do in terms of drugs and
treatment. I was dx'ed in July '06 and today it's business as usual.
I'm back to doing the things I love, working out, riding my dirtbike,
working too much at work, etc. Luckily I've had very very minimal
side effects. Lately I've been itchy, which is weird.
You sound very calm, which is great. You are already on the road to
wellness. Stay on top of this mentally (don't dwell) and eat healthy
and you'll be fine.
Hi Tracey,
I am sorry about your dx. I was dxed in April of 04 and have been on 400mg's
of Gleevec since. I am now in remission and as of my last Doctor's visit on
Nov 3rd my blood counts are great. So he teased my mom and told her she was
going to be stuck with me for a very long time. I am 39, and have since had
to move back home with my parents. CML is now a very treatable disease so on
the one hand your not lucky, but on the other hand you are..hehe.
With Gleevec most of us can expect to live a fairly normal live span. There
maybe side effects, but until you start treatment there is not way for me to
tell you the ones(if any) you may have. Some people are very lucky and
suffer little to no side effects, and then there are those like me. (I won't
go into mine right now, maybe later after you have gotten used to things)
Hi everyone --
My name is Tracey, I am 42 and just dxd within the last 2 weeks. Of
course hind sight is 20/20 and when I reflect back on things I have
probably been working on this for quite some time now. I have often
complained to my PCP about being exhausted and achey and as others
have commented he checked my thyroid and commented that I wasn't
anemic. Makes you a little nervous when you have to wonder at what
point they think a simple CBC would be in order.
Being so new to this whole thing I haven't quite got all the
terminology down but here are the basics -- aproximately 40lbs lost
over the last 6-8 months (never have been that successful before -
shocking what a little dose of CML can accomplish!!!), constant
exhaustion, and then 2 weeks ago a pain in my left side (you got it -
- an enlarged spleen). Dr ordered ultrasound to confirm
spleenomegaly then a CBC. When the blood work came back PCP called
at 9:30 AM on FRIDAY and told me it looked like AML -- I have since
told him he has LOUSY timing and really knows how to screw up
someone's weekend. He did refer me to Georgia Cancer Specialists to
see Dr. Melvin Moore. Dr Moore assured us we were dealing with CML
not AML,and it was pretty much a text book case -- just waiting on
the cytogenic tests to confirm PH+ and rule out any other
extenuating circumstances. He immediatley started me on Gleevec
400mg and Allpurinol 300mg daily.
I have been impressed with Dr Moore so far but was curious if anyone
out there has any info on him. He seems to be on the cutting edge as
far as SCT and BMT if need be down the road. He is a fauclty member
at Emory University and seems to be involved with giving or
participating in seminars quite often. So far he has been very
giving of his time and doesn't hesitate to answer our questions no
matter how many or how insignificant they may be.
My precious brother found this group and pointed me in your
direction. I look forward to learning from each and every one of
you. I will be thankful for "ya'll" and pray for all.
Thank you -- Tracey