Re: CML - the early days

[Guest guest]

Dear ,

Thanks for that bit of history. I have always caught glimpses and blips in

reference to the pre-Gleevec era of CML survivors, but it helps to see the

picture a bit more completely. I appreciate your taking the time to share this

with us.

Chris

[ ] CML - the early days

Hi folks,

It occurs to me that some of the members of this list who were diagnosed

after Gleevec was approved might be interested in hearing about the world of

CML prior to that remarkable date, almost exactly 6 years ago. Anyone want

to share stories - of life on interferon, what the list was like (an

incredibly tight, supportive group, as I recall), losing listmembers who had

had the disease just too long to benefit from Gleevec trials, what it was

like to be in the trials, of contributions from incredible people like

Rowbotham...etc.?

I'll begin. I was diagnosed on October 19, 2000. I'm a physician, so I more

or less diagnosed myself, though not until after several months of symptoms,

and a shameful amount of denial that I could really be sick. None of the

local heme-oncs had even heard of STI-571 (that's what Gleevec/imatinib

mesylate/IM was then called because it was the 571st. Signal Transduction

Inhibitor they tried before they hit the jackpot). The last time I had

really thought about CML was in medical school in the 70's. At that time,

median survival was only 4 years, so for the first week or so after

diagnosis, I assumed I was doomed either to die in a few years, or to having

a transplant, which, given the rates of morbidity and mortality for someone

my age (51 at the time), didn't seem a much happier prospect. When I first

heard of STI-571 it seemed like a miracle - and still does, really. In

early November I had the good fortune to meet Druker, whose excitement

was palpable, and whose optimism rubbed off on me.

Rather than enter one of the STI-571 trials, however, I elected to go on

interferon (IFN) which was then the standard-of-care drug therapy. I took

IFN for 6 months until Gleevec was approved, and it was quite the ride. In

addition to nasty side effects which got worse over time - including extreme

fatigue, hearing loss, mental fuzziness and toward the end, depression - IFN

caused my platelets and white cells to tank several times, putting me at

risk of bleeding and infection, though luckily I managed to avoid both of

these.

Having heard that IM would be approved sometime in May, 2001, I decided to

quit the IFN in late April. On my last day of IFN I headed out for a solo

hike in the wilderness of Canyonlands National Park. Feeling the awful

effects of this drug leave my body while I was out there was one of the

great experiences of my life. By the time I returned, IM had been approved

and the rest was history.

Regards to all,

R

PS - thanks to all of you who wrote letters or signed the petition to

Novartis regarding their patent case in India. The story is ongoing; I'll

update you one of these days.

[Guest guest]

Hello all,

I can recall the days before interferon, before

transplants, and anything else. There was only one

drug called Myleran (still used today). It was a very

hard drug to take. I do not want to take up to much

time explaining all I did or did not do, I just wanted

to share that for 29 years I have battled CML and I

still feel good, Old age is getting in the way I

guess. I still do a little consulting and make music

do some web pages at 71 years of age. Up until my Hgb

went haywire, I use to play the organ and sing at

church. So how did I survive for 29 years ...My

strong belief, I did 5 Km a day walk. I did not have

any one to talk with about this problem.. I just went

on my merry, trusting..

If you want to know about low blood counts due to

Gleevec and Nilotinib (AMN107) and my diary of daily

fight and transfusions you can read my story on my web

page. My doctor is not concerned with my low counts

as I survive quite well on them. I have had zero 0

that is zero platelets and do ok.. I feel good and my

doctor is pleased, considering how long I have had CML

( I would love to hear from people with CML over 20

years). My quality of life is not bad.. I am healthy

except for CML and that is part of the key to my

survival. My diary page is at

http://easyskip.tripod.com

and I have a page of what blood counts should be...

http://easyskip.tripod.com/blood_counts.htm

my best to all.

SkipD

dx'ed 1978..

--- Rockefeller <rrockef1@...> wrote:

> Hi folks,

>

> It occurs to me that some of the members of this

> list who were diagnosed

> after Gleevec was approved might be interested in

> hearing about the world of

> CML prior to that remarkable date, almost exactly 6

> years ago. Anyone want

> to share stories - of life on interferon, what the

> list was like (an

> incredibly tight, supportive group, as I recall),

> losing listmembers who had

> had the disease just too long to benefit from

> Gleevec trials, what it was

> like to be in the trials, of contributions from

> incredible people like

> Rowbotham...etc.?

>

> I'll begin. I was diagnosed on October 19, 2000.

> I'm a physician, so I more

> or less diagnosed myself, though not until after

> several months of symptoms,

> and a shameful amount of denial that I could really

> be sick. None of the

> local heme-oncs had even heard of STI-571 (that's

> what Gleevec/imatinib

> mesylate/IM was then called because it was the

> 571st. Signal Transduction

> Inhibitor they tried before they hit the jackpot).

> The last time I had

> really thought about CML was in medical school in

> the 70's. At that time,

> median survival was only 4 years, so for the first

> week or so after

> diagnosis, I assumed I was doomed either to die in a

> few years, or to having

> a transplant, which, given the rates of morbidity

> and mortality for someone

> my age (51 at the time), didn't seem a much happier

> prospect. When I first

> heard of STI-571 it seemed like a miracle - and

> still does, really. In

> early November I had the good fortune to meet

> Druker, whose excitement

> was palpable, and whose optimism rubbed off on me.

>

> Rather than enter one of the STI-571 trials,

> however, I elected to go on

> interferon (IFN) which was then the standard-of-care

> drug therapy. I took

> IFN for 6 months until Gleevec was approved, and it

> was quite the ride. In

> addition to nasty side effects which got worse over

> time - including extreme

> fatigue, hearing loss, mental fuzziness and toward

> the end, depression - IFN

> caused my platelets and white cells to tank several

> times, putting me at

> risk of bleeding and infection, though luckily I

> managed to avoid both of

> these.

>

> Having heard that IM would be approved sometime in

> May, 2001, I decided to

> quit the IFN in late April. On my last day of IFN I

> headed out for a solo

> hike in the wilderness of Canyonlands National Park.

> Feeling the awful

> effects of this drug leave my body while I was out

> there was one of the

> great experiences of my life. By the time I

> returned, IM had been approved

> and the rest was history.

>

> Regards to all,

>

> R

>

> PS - thanks to all of you who wrote letters or

> signed the petition to

> Novartis regarding their patent case in India. The

> story is ongoing; I'll

> update you one of these days.

>

>

>

__________________________________________________

[Guest guest]

Thanks . It helps to hear your historical point of view on things.

:}

[ ] CML - the early days

Hi folks,

It occurs to me that some of the members of this list who were diagnosed

after Gleevec was approved might be interested in hearing about the world of

CML prior to that remarkable date, almost exactly 6 years ago. Anyone want

to share stories - of life on interferon, what the list was like (an

incredibly tight, supportive group, as I recall), losing listmembers who had

had the disease just too long to benefit from Gleevec trials, what it was

like to be in the trials, of contributions from incredible people like

Rowbotham... etc.?

I'll begin. I was diagnosed on October 19, 2000. I'm a physician, so I more

or less diagnosed myself, though not until after several months of symptoms,

and a shameful amount of denial that I could really be sick. None of the

local heme-oncs had even heard of STI-571 (that's what Gleevec/imatinib

mesylate/IM was then called because it was the 571st. Signal Transduction

Inhibitor they tried before they hit the jackpot). The last time I had

really thought about CML was in medical school in the 70's. At that time,

median survival was only 4 years, so for the first week or so after

diagnosis, I assumed I was doomed either to die in a few years, or to having

a transplant, which, given the rates of morbidity and mortality for someone

my age (51 at the time), didn't seem a much happier prospect. When I first

heard of STI-571 it seemed like a miracle - and still does, really. In

early November I had the good fortune to meet Druker, whose excitement

was palpable, and whose optimism rubbed off on me.

Rather than enter one of the STI-571 trials, however, I elected to go on

interferon (IFN) which was then the standard-of- care drug therapy. I took

IFN for 6 months until Gleevec was approved, and it was quite the ride. In

addition to nasty side effects which got worse over time - including extreme

fatigue, hearing loss, mental fuzziness and toward the end, depression - IFN

caused my platelets and white cells to tank several times, putting me at

risk of bleeding and infection, though luckily I managed to avoid both of

these.

Having heard that IM would be approved sometime in May, 2001, I decided to

quit the IFN in late April. On my last day of IFN I headed out for a solo

hike in the wilderness of Canyonlands National Park. Feeling the awful

effects of this drug leave my body while I was out there was one of the

great experiences of my life. By the time I returned, IM had been approved

and the rest was history.

Regards to all,

R

PS - thanks to all of you who wrote letters or signed the petition to

Novartis regarding their patent case in India. The story is ongoing; I'll

update you one of these days.

[Guest guest]

Hi ,

Feeling nostalgic are we

I'm not that much of an oldie (compared to others). I was diagnosed

in January 2002 but Gleevec was still pretty new back then. In fact,

it had only been approved in Canada 4 months earlier and even then,

it was only approved for people who had previously failed Interferon

so I had a bit of a battle ahead of me.

Of course in those days, anyone who could qualify for a transplant

was pushed into it because there just wasn't enough information about

Gleevec and life on Interferon wasn't much better than the quality of

life people had with transplants so BMT's were done much more often

in those days.

I remember spending hours, days, weeks and even months researching

medical journals, support groups and Cargingbridge sites of people

who went the BMT route and I quickly learned that a BMT wasn't as

easy as I had thought. I had originally thought that I'd have

this " thing " done and it would be almost like a blood transfusion,

I'd be done in a matter of hours and I'd be home, cured and living

normally again. Ha!

It didn't take me long to see that Gleevec looked like a far better

choice than BMT did but I had the challenge of getting Gleevec

without having to first fail Interferon. I believe I was probably

the first patient in Canada to get Gleevec as front line treatment

without first failing Interferon.

Making the choice between Gleevec and BMT was the most difficult

decision I've ever had to make in my life. More difficult than the

decision of who to marry, whether or not to have kids, where to live,

what career to pursue etc. After all, what more difficult decision is

there, than one that could mean you live or die.

What complicated matters even more is that my doctor at the time, was

a transplant doctor and had no faith in Gleevec at all. He honestly

believed that Gleevec was just the latest flash in the pan hipe of a

cure and he was sure that I would need a transplant " sooner or

later " .

He reluctantly let me give Gleevec a try but we butted heads for

months. Even after I reached CCR (5 months after starting Gleevec),

he was very negative about it and said that I was just putting off

the " inevitable " . He actually looked angry that I had done so well

on Gleevec and told me that I shouldn't smile about my CCR, there

was " nothing to celebrate " he said because it wouldn't last.

Well I finally got a new doctor and it's now 5 years later and I'm

grateful for all God's given me. I don't doubt for a second that I

made the right choice at the time. My kids were too young to lose me

and even if I would have survived a transplant, I would have been

useless to them for months which at the time, would have been

devastating to them. They were only 7 and 9 years old.

I'll forever be grateful to those who not only paved the way for

Gleevec's discovery and approval but to the members who shared their

stories with us on the boards so that we could see first hand what

was involved in the various treatments.

People like you, Anjana, and who shared your knowledge

with us so we could all learn. People like Mark, Doug, , ,

Jeannie, Melinda and Rebbecca who shared their transplant journeys

with us and the others like Zavie and Giora who cheered us on.

It seems like we've come a very long way in just 5 years and I look

forward to another 5 with just as many breakthroughs and

discoveries

Thanks for the memories,

Tracey

[Guest guest]

hello

your post took me back 6-7 years and brought up some wondrful and terible

memories at the same time.

i was diagnosed on march 2000, just 7 months before you. i joined the cml list

(we had only 1 good list at that time...) immediately and made friends from all

over the world. thanks to one of them, michiel from amsterdam, i learned about

the oppening of the iris -106 trial and joined it in july 2000. i was randomized

to interferon+ara c ( what a disapointment) and took it 7 months. owfull. i had

similar side effect like you, and i will never forget what a top cml expert told

our israeli cml patients group : " interferon is a drug that takes away the joy

of life to about 70 % of the patients who use it. " i was among these 70 %.

finally on february 14, 2001 i was switched to glivec, and i will never forget

the day i flew in the morning to germany just to pick up the sti-571 pills and

returned at evening back to israel.

the best thing that came out from the desease story, are all the good friends

that i have met along the way. some are far away so we dont get to meet, but

with others we try to meet as often as posible and we keep in touch.

we learn so much from each one and i remember always our emails about your

personal trial with glivec.

maybe we will organize in few years a meeting of the old list members

best regards

i am so sorry you cant come to frankfurt next month, but i nwanted to tell you

taht the topic was put on the agenda and will be discussed there

giora

[ ] CML - the early days

Hi folks,

It occurs to me that some of the members of this list who were diagnosed

after Gleevec was approved might be interested in hearing about the world of

CML prior to that remarkable date, almost exactly 6 years ago. Anyone want

to share stories - of life on interferon, what the list was like (an

incredibly tight, supportive group, as I recall), losing listmembers who had

had the disease just too long to benefit from Gleevec trials, what it was

like to be in the trials, of contributions from incredible people like

Rowbotham...etc.?

I'll begin. I was diagnosed on October 19, 2000. I'm a physician, so I more

or less diagnosed myself, though not until after several months of symptoms,

and a shameful amount of denial that I could really be sick. None of the

local heme-oncs had even heard of STI-571 (that's what Gleevec/imatinib

mesylate/IM was then called because it was the 571st. Signal Transduction

Inhibitor they tried before they hit the jackpot). The last time I had

really thought about CML was in medical school in the 70's. At that time,

median survival was only 4 years, so for the first week or so after

diagnosis, I assumed I was doomed either to die in a few years, or to having

a transplant, which, given the rates of morbidity and mortality for someone

my age (51 at the time), didn't seem a much happier prospect. When I first

heard of STI-571 it seemed like a miracle - and still does, really. In

early November I had the good fortune to meet Druker, whose excitement

was palpable, and whose optimism rubbed off on me.

Rather than enter one of the STI-571 trials, however, I elected to go on

interferon (IFN) which was then the standard-of-care drug therapy. I took

IFN for 6 months until Gleevec was approved, and it was quite the ride. In

addition to nasty side effects which got worse over time - including extreme

fatigue, hearing loss, mental fuzziness and toward the end, depression - IFN

caused my platelets and white cells to tank several times, putting me at

risk of bleeding and infection, though luckily I managed to avoid both of

these.

Having heard that IM would be approved sometime in May, 2001, I decided to

quit the IFN in late April. On my last day of IFN I headed out for a solo

hike in the wilderness of Canyonlands National Park. Feeling the awful

effects of this drug leave my body while I was out there was one of the

great experiences of my life. By the time I returned, IM had been approved

and the rest was history.

Regards to all,

R

PS - thanks to all of you who wrote letters or signed the petition to

Novartis regarding their patent case in India. The story is ongoing; I'll

update you one of these days.

[Guest guest]

Hi ,

Thanks for your post.

I was diagnosed 4 years ago on 5/6/03. Though my memory is of the

swiss cheese type now, I will never forget that date. My oncologist

was very enthusiastic about Gleevec and I held my breath each time my

blood was drawn.

When I found the former (first?) support group, I took time to

read some of the old posts which I think started in about 1997. It

was a very sobering experience. If I needed a reminder of how lucky

I was, I found it there. I followed the story of one man who made it

into the first trial, but not soon enough. His story touched me and

his strength still inspires me. It was as if he were reaching out to

me in my early CML days and telling me not to be afraid as he knew

Gleevec would be the wonder drug that we all now know it to be.

Those early posts did reflect a very strong support system. There

was no posturing for control, no bickering, just heartfelt love and

support.

Thanks for the reminder.

peace,

Kathy

PS -- There may be snow still in the woods, but the lettuce is growing

at Beech Hill Farm!

>

> Hi folks,

>

> It occurs to me that some of the members of this list who were diagnosed

> after Gleevec was approved might be interested in hearing about the

world of

> CML prior to that remarkable date, almost exactly 6 years ago.

Anyone want

> to share stories - of life on interferon, what the list was like (an

> incredibly tight, supportive group, as I recall), losing listmembers

who had

> had the disease just too long to benefit from Gleevec trials, what

it was

> like to be in the trials, of contributions from incredible people

like

> Rowbotham...etc.?

>

> I'll begin. I was diagnosed on October 19, 2000. I'm a physician,

so I more

> or less diagnosed myself, though not until after several months of

symptoms,

> and a shameful amount of denial that I could really be sick. None of the

> local heme-oncs had even heard of STI-571 (that's what Gleevec/imatinib

> mesylate/IM was then called because it was the 571st. Signal

Transduction

> Inhibitor they tried before they hit the jackpot). The last time I had

> really thought about CML was in medical school in the 70's. At that

time,

> median survival was only 4 years, so for the first week or so after

> diagnosis, I assumed I was doomed either to die in a few years, or

to having

> a transplant, which, given the rates of morbidity and mortality for

someone

> my age (51 at the time), didn't seem a much happier prospect. When

I first

> heard of STI-571 it seemed like a miracle - and still does, really. In

> early November I had the good fortune to meet Druker, whose

excitement

> was palpable, and whose optimism rubbed off on me.

>

> Rather than enter one of the STI-571 trials, however, I elected to go on

> interferon (IFN) which was then the standard-of-care drug therapy.

I took

> IFN for 6 months until Gleevec was approved, and it was quite the

ride. In

> addition to nasty side effects which got worse over time - including

extreme

> fatigue, hearing loss, mental fuzziness and toward the end,

depression - IFN

> caused my platelets and white cells to tank several times, putting me at

> risk of bleeding and infection, though luckily I managed to avoid

both of

> these.

>

> Having heard that IM would be approved sometime in May, 2001, I

decided to

> quit the IFN in late April. On my last day of IFN I headed out for a

solo

> hike in the wilderness of Canyonlands National Park. Feeling the awful

> effects of this drug leave my body while I was out there was one of the

> great experiences of my life. By the time I returned, IM had been

approved

> and the rest was history.

>

> Regards to all,

>

> R

>

> PS - thanks to all of you who wrote letters or signed the petition to

> Novartis regarding their patent case in India. The story is

ongoing; I'll

> update you one of these days.

>

[Guest guest]

CML SUPPORT AND INFORMATIONI have read the lists since I first discovered

the one with et al in 1999. It was there that I learned about STI-571,

as Gleevec was called. That was almost exactly 8 years ago, when I was

diagnosed in a local walk-in clinic where the doc told me I have cml and

asked if anyone was going to be home when I left the doctor's office because

she wouldn't want me to " shoot (myself) or anything " . I guess she was

saying that was the only treatment.

But I didn't shoot myself and was offered hydroxyurea long term as I

searched for a bone marrow donor. All 6 siblings, my daughter, two local

bone marrow drives in my name, the entire US registry and the international

registry came up empty for anyone even close to my very rare combination of

antigens. Only post-gleevec would I be thankful for the uniqueness. I was

told the average life span for cml was considered 2-10 years from diagnosis.

I was 47 at the time.

Nine months after diagnosis, I found the list serv with and others and

read about early good results with STI-571. I did some research and called

Dr. Druker who called me back at 9pm Alaska time/10pm Oregon time for a

personal chat. Unfortunately since I was almost a year from diagnosis, I

was too late for the early trials for newly diagnosed that were getting

ready to begin, and I hadn't tried Interferon yet so the trials for those

who had failed on Interferon weren't open to me. I went to MD to

see if I could work my way into a trial anyway, being someone who doesn't

take no easily. I started on a PEG Interferon and Ara-C trial--daily self

injections of Ara-C and a weekly self-injection of PEG Interferon, with

flights to Houston from Anchorage every 3 months. I started PEG Intron on a

6mcg/kgm weekly dose which was way too much for me and after systematic

reductions over a year, I was on .9 every two weeks. The side effects were

terrible--extreme weight loss, fuzzy thinking, one full day when I couldn't

leave the house, difficulty focusing, low blood counts, slow reaction time,

fatigue, fatigue, fatigue. But it worked. My Philadelphia chromosomes went

down from 100% to close to zero by FISH.

The day Gleevec was approved by the FDA I called my pharmacy to see how

quickly they could get it to Alaska (2 weeks!), called my Dr. and stopped

Interferon. Almost immediately I started feeling better. I've been philly

free since early 2001 with one brief increase last winter. I'm back in

complete remission now and hope I never have to do interferon again. I run,

hike, ski, bicycle and enjoy Alaska winter and summer! I even ran/walked a

marathon for the Leukemia and Lymphoma society, 2 years ago. I'm thankful

for all the support from this and the previous lists and feel like you're

all friends. I wouldn't be where I am without you. Thanks to Zavie for

saying Yipee! each time someone hits the Zero Club. We all have a lot to

celebrate. Those Yipee's were infrequent back then; it's good to see the

number keep growing! I appreciate all the support from the others-- C

who I met once, R, , Kathy, G, and all the others! In

the early years, there were many more sad times as list members died of cml

and secondary bleeding, transplants, etc. Now the list continues to grow

because there are more of us living on. A bad day on Gleevec is better than

the best day on Interferon! Thanks to all of you! We're in this together.

Fran from Alaska

[Guest guest]

Fran,

Reading your testimonial reminds us all of how far the researchers have come

with CML in a relatively short amount of time. Just think what great strides

they are making and how people being diagnosed now have such a long future to be

offerred to them.

Thanks for sharing.

Sue

---------------------------------

Bored stiff? Loosen up...

Download and play hundreds of games for free on Games.

[Guest guest]

I was diagnosed on March 5, 2001, I was immediately pushed toward a

stem cell transplant. Not knowing anything about CML or transplants, I

looked up the treatment options, and I was terrified. Both Interferon

and transplant seemed horrible alternatives. At the time I had one

year old twins and a six year old. I was determined to survive this

disease. Through Rob's original list, I found many of the old-timers

here, and identified a trial for STI-571 (Gleevec) for newly diagnosed

patients at MDACC. I entered that trial, which is still ongoing, and

Gleevec has worked well for me. I'm not PCRU, but I am stable in CCR

and involved in the CMLVAX trial at MDACC.

Along the way, I have experienced the loss of listmates who didn't

respond to Gleevec, like Mohan, who was in my trial-- a newly

diagnosed patient. His wbc, platelets, etc. mirrored mine from Day 1

until he suddenly went into blast after nine months in the trial.

Mohan died after an unrelated donor transplant. The first loss, I

think, is always the hardest. I've felt the losses of caregivers, like

R., who went out of their way to compassionately provide

information and support to all of us.

Amazing days those were. Intense, filled with miracles and grievous

losses.

But I'm still here, my six year old is a remarkable teenager, and my

beautiful twins are growing up. My husband finally finished his

dissertation this week after eight years of caregiving and receiving

care for a heart condition that he was successfully treated for. I

remember how you old timers were there for me during his surgeries.

Not just CML, we were bound as a group through life, for life. Mark

will defend his dissertation on June 5th and graduate on June 23rd.

That day, standing beside my children, I know I will cry tears of joy,

not the tears of sadness and fear from the old days, the early days of

diagnosis.

Blessings to all,

>

> hello

> your post took me back 6-7 years and brought up some wondrful and

terible memories at the same time.

> i was diagnosed on march 2000, just 7 months before you. i joined

the cml list (we had only 1 good list at that time...) immediately and

made friends from all over the world. thanks to one of them, michiel

from amsterdam, i learned about the oppening of the iris -106 trial

and joined it in july 2000. i was randomized to interferon+ara c (

what a disapointment) and took it 7 months. owfull. i had similar side

effect like you, and i will never forget what a top cml expert told

our israeli cml patients group : " interferon is a drug that takes

away the joy of life to about 70 % of the patients who use it. " i was

among these 70 %. finally on february 14, 2001 i was switched to

glivec, and i will never forget the day i flew in the morning to

germany just to pick up the sti-571 pills and returned at evening back

to israel.

> the best thing that came out from the desease story, are all the

good friends that i have met along the way. some are far away so we

dont get to meet, but with others we try to meet as often as posible

and we keep in touch.

> we learn so much from each one and i remember always our emails

about your personal trial with glivec.

> maybe we will organize in few years a meeting of the old list members

> best regards

> i am so sorry you cant come to frankfurt next month, but i nwanted

to tell you taht the topic was put on the agenda and will be discussed

there

> giora

> [ ] CML - the early days

>

>

> Hi folks,

>

> It occurs to me that some of the members of this list who were

diagnosed

> after Gleevec was approved might be interested in hearing about

the world of

> CML prior to that remarkable date, almost exactly 6 years ago.

Anyone want

> to share stories - of life on interferon, what the list was like (an

> incredibly tight, supportive group, as I recall), losing

listmembers who had

> had the disease just too long to benefit from Gleevec trials, what

it was

> like to be in the trials, of contributions from incredible people

like

> Rowbotham...etc.?

>

> I'll begin. I was diagnosed on October 19, 2000. I'm a physician,

so I more

> or less diagnosed myself, though not until after several months of

symptoms,

> and a shameful amount of denial that I could really be sick. None

of the

> local heme-oncs had even heard of STI-571 (that's what

Gleevec/imatinib

> mesylate/IM was then called because it was the 571st. Signal

Transduction

> Inhibitor they tried before they hit the jackpot). The last time I had

> really thought about CML was in medical school in the 70's. At

that time,

> median survival was only 4 years, so for the first week or so after

> diagnosis, I assumed I was doomed either to die in a few years, or

to having

> a transplant, which, given the rates of morbidity and mortality

for someone

> my age (51 at the time), didn't seem a much happier prospect. When

I first

> heard of STI-571 it seemed like a miracle - and still does, really. In

> early November I had the good fortune to meet Druker, whose

excitement

> was palpable, and whose optimism rubbed off on me.

>

> Rather than enter one of the STI-571 trials, however, I elected to

go on

> interferon (IFN) which was then the standard-of-care drug therapy.

I took

> IFN for 6 months until Gleevec was approved, and it was quite the

ride. In

> addition to nasty side effects which got worse over time -

including extreme

> fatigue, hearing loss, mental fuzziness and toward the end,

depression - IFN

> caused my platelets and white cells to tank several times, putting

me at

> risk of bleeding and infection, though luckily I managed to avoid

both of

> these.

>

> Having heard that IM would be approved sometime in May, 2001, I

decided to

> quit the IFN in late April. On my last day of IFN I headed out for

a solo

> hike in the wilderness of Canyonlands National Park. Feeling the awful

> effects of this drug leave my body while I was out there was one

of the

> great experiences of my life. By the time I returned, IM had been

approved

> and the rest was history.

>

> Regards to all,

>

> R

>

> PS - thanks to all of you who wrote letters or signed the petition to

> Novartis regarding their patent case in India. The story is

ongoing; I'll

> update you one of these days.

>

>

>

>

>

>

[Guest guest]

I have a lot in common with Fran from AK. I was dx'd on Oct. 1, 1999

at the age of 47. I had a grown son and a daughter aged 13 whose

father had died of cancer 6 years earlier. My daughter was a mess,

thinking that cancer was going to claim her other parent, too. I was

told that a bone marrow transplant was the only cure for CML, and

because of my age, I would only be consider for a related

transplant. Sixteen relatives (mother, sibs, children, cousins) were

tested and no match was found. In late 1999, I found Jerry

Mayfield's website about STI-571. It sounded too good to be true - a

drug that killed only cancer cells with minimal side effects. I

wanted desperately to get on the trial but at that time, the only way

to get on the trial was to have failed interferon therapy. I figured

the best way for me to get STI-517 was to get on IFN in a hurry

and " fail " at it right away! I started interferon and ara-c in

January of 2000. My dosage was quickly ramped up to the highest

level (9miu daily). Being on IFN is like coming down with the flu

every day. IFN causes chills, fever, muscle aches, fatigue, memory

loss. Ara-c was added 10 days each month and that brought the side

effect of severe nausea. The side effects were so debilitating that

I spent about 14-15 hours a day in bed. The high point of each day

was when I dragged myself to the computer to check in on the CML

list. As pathetic as my life was on IFN, my phillies did drop

consistently and 9 mos. into treatment, I had achieved MCR, with only

15% phillies present. Sometime in 2000 (my memory of this is a

casualty of IFN), STI-571 trials opened for the newly diagnosed.

Like Fran, my IFN treatment disallowed my participation in the

trials. By early 2001, the word was that STI-571 would be fast-

tracked through the FDA approval process. I talked my onc into

backing off of the aggressive IFN schedule since my phillies were

down. I went to a respectable smaller dose of IFN 3 times a week

until May 2001. My onc called my Gleevec rx in the day after it was

approved and I've never looked back. In July 2001, I attended my

son's wedding. I got the news of my CCR on Sept. 13, 2001. Since it

was a time of national mourning, I didn't get to celebrate the way I

wanted to -- dancing in the streets! In Jan. 2002, I tested PCRU and

stayed there except for a bounce up last year that bounced back down

this year. My daughter is now a senior in college and I am the

grandmother of two. In January, my daughter ran the Phoenix Rock 'n'

Roll Marathon and my husband and I walked the half-marathon to

benefit LLS. When I was on IFN, I couldn't walk across the parking

lot at the grocery store. I do have some side effects from Gleevec

but after 18 mos. on IFN and ara-c, I barely consider them side

effects. Now, my fervent prayer is that the cure will be found and

even Gleevec, as wonderful as it is, will be a short-term treatment.

Blessings to all,

Terry Nowell

[Guest guest]

Hi Terry -- Your story shows how important it is for us to be our own

healthcare advocates. Good for you.

God bless.

peace,

Kathy

dx 5/03

>

> I have a lot in common with Fran from AK. I was dx'd on Oct. 1, 1999

> at the age of 47. I had a grown son and a daughter aged 13 whose

> father had died of cancer 6 years earlier. My daughter was a mess,

> thinking that cancer was going to claim her other parent, too. I was

> told that a bone marrow transplant was the only cure for CML, and

> because of my age, I would only be consider for a related

> transplant. Sixteen relatives (mother, sibs, children, cousins) were

> tested and no match was found. In late 1999, I found Jerry

> Mayfield's website about STI-571. It sounded too good to be true - a

> drug that killed only cancer cells with minimal side effects. I

> wanted desperately to get on the trial but at that time, the only way

> to get on the trial was to have failed interferon therapy. I figured

> the best way for me to get STI-517 was to get on IFN in a hurry

> and " fail " at it right away! I started interferon and ara-c in

> January of 2000. My dosage was quickly ramped up to the highest

> level (9miu daily). Being on IFN is like coming down with the flu

> every day. IFN causes chills, fever, muscle aches, fatigue, memory

> loss. Ara-c was added 10 days each month and that brought the side

> effect of severe nausea. The side effects were so debilitating that

> I spent about 14-15 hours a day in bed. The high point of each day

> was when I dragged myself to the computer to check in on the CML

> list. As pathetic as my life was on IFN, my phillies did drop

> consistently and 9 mos. into treatment, I had achieved MCR, with only

> 15% phillies present. Sometime in 2000 (my memory of this is a

> casualty of IFN), STI-571 trials opened for the newly diagnosed.

> Like Fran, my IFN treatment disallowed my participation in the

> trials. By early 2001, the word was that STI-571 would be fast-

> tracked through the FDA approval process. I talked my onc into

> backing off of the aggressive IFN schedule since my phillies were

> down. I went to a respectable smaller dose of IFN 3 times a week

> until May 2001. My onc called my Gleevec rx in the day after it was

> approved and I've never looked back. In July 2001, I attended my

> son's wedding. I got the news of my CCR on Sept. 13, 2001. Since it

> was a time of national mourning, I didn't get to celebrate the way I

> wanted to -- dancing in the streets! In Jan. 2002, I tested PCRU and

> stayed there except for a bounce up last year that bounced back down

> this year. My daughter is now a senior in college and I am the

> grandmother of two. In January, my daughter ran the Phoenix Rock 'n'

> Roll Marathon and my husband and I walked the half-marathon to

> benefit LLS. When I was on IFN, I couldn't walk across the parking

> lot at the grocery store. I do have some side effects from Gleevec

> but after 18 mos. on IFN and ara-c, I barely consider them side

> effects. Now, my fervent prayer is that the cure will be found and

> even Gleevec, as wonderful as it is, will be a short-term treatment.

>

> Blessings to all,

> Terry Nowell

>