Sandie's Saga

[Guest guest]

Dear Sandie,

I know you are thinking that CML and Gleevec are like a little house of

horrors from what you have heard. Sandie, you are very new (newbies) at this

and we are for the most part veterans. Not everyone experiences these severe

side effects and there are enough drugs and trials that you don't have to stick

with Gleevec if your boyfriend can't tolerate it. Did you see Zavie's latest

number of people who have reached the 'zero' club? They are well over a

thousand that he knows of and many more who do not belong to support groups.

There are other organizations that also provide drugs for cancer patients.

You can google them, but there is also PSI in Midlothian, VA. You can call

Burgess at 1-800-366-7741, Ext. 37l and they will send you a packet. If

he is put on any Novartis product, such as Gleevec or Tasigna, you might want to

call the Novartis Hotline, which you can also google, and ask for Patient

Assistance.

Any serious disease is a challenge, but I know no other that has as many

drugs approved by FDA and more trials than any other disease. By way of

introduction, I was diagnosed 7/96. It was a rude awakening, I cried for 3

weeks non-stop. There was no information to speak of and the outlook for any

kind of remission was slim to none. I started out on a trial drug that was so

useless doctors I speak to never heard of it and the doctor who administered it

doesn't remember it. It consisted of ATRA and Hydrea. That was 4 years of

wasted time, but the only other alternative was Inteferon and began that in my

4th year, along with homoherringtonine. A little blip on the screen looked

favorable, but the side effects were very bad. As soon as Gleevec was approved,

I called Novartis to get it without telling my doctor. I tend to get ahead of

the doctors sometimes.

Four years of Gleevec and no blip on the radar screen at all. As soon as

the Sprycel trial opened up, my doctor got me into it, even if it meant I would

lose him and I loved being in the care of he and his staff. Sprycel didn't work

for me, so I am in another trial at present. I was already 67 at the time of my

diagnosis, so I don't expect to see myself in the Zero Club any time soon, but

I'm not giving up. If Gleevec had been available to me iniatially, I would

probably have attained that, but too much time had elapsed before the tyrosine

kinase inhibitors arrived on the horizon. Lack of funds should not keep your

boyfriend from getting adequate care. I wish you both good luck, just keep

tuning in. You will get the support and information you need if you are

interested and it sounds as though you are.

It is a frightening experience for everyone. I believe I only heard of one

person who said they went to the doctor because they thought they had leukemia.

We mostly find out when we go to the doctor for something else. There are

resources out there and with your savvy, I'm sure you will find them, we all did

by word of mouth and use of the internet. Your research librarian can be of

assistance, too if you are finding it difficult to find what you are looking

for. No matter what, don't give up. As Lance Armstrong (my hero) says, LIVE

STRONG. You can get a lot of information that is up to date from your

Leukemia/Lymphoma Society. You can help with fund raising and become a

volunteer if you want to give back in some way.

Blessings,

Lottie