Introduction/ New Member

[Guest guest]

Greetings My CML Friends,

Please forgive me but this will be a long post!

I think most of you here know me or will remember me. I'm

Reynolds, 42 from TN, I am married to Jim, I have two grown children,

three grown step-children and six stepgrandchildren. I no longer work

as the CML and Gleevec side effects have robbed me of my ability to

work. I was diagnosed November 28th 2003 after an emergency room visit

with severe pain in my left side. My WBC was 165,000. I was in the

hospital for three days and prescribed hydrea which I took until

Decemeber 15th when I was then started on 400mg of Gleevec. I

continued to seen by the local oncologist for about three months.

Considering I am from a small town, and after joining the cml

group and corresponding with others about the care I was receiving,(I

was concerned at that time because my oncologist refused to request a

bone marrow biopsy) I decided to get a second opinion at Vanderbilt

Medical Center in Nashville. I not only got a second opinion but

started seeing an oncologist there. For over a year, this doctor from

my first visit, pushed for me to have a BMT. On my second or third

visit, I signed papers and consulted with the transplant case manager

and my name was placed on the donor registry list in search of a

donor. He told me I was not responding to the IM and increased my

dosage from 600mg (and eventually to 800mg.) I made the hardest

decision of my life, and chose not to have the BMT but with every

visit, my doctor was ever persistent that the Gleevec was not working,

and if I didn't have a BMT, I wasn't gonna make it. I consulted with

Dr. Druker somtime around June or July 2004 and with what medical

records I had to share with him, he suggested that if he was my

doctor, he would suggest I give the Gleevec another 6 months, and that

I was having a response but a slow one. For over a year, my oncologist

gave me little hope, and I dreaded each and every visit with him. In

February 2005, my doctor left Vanderbilt to go to another hospital in

another state and I was given the option of picking the doctor I

wanted to start seeing. I went to the internet and went to the

Vanderbilt website and read about each doctor and made a choice. With

my first visit with my new doctor, I learned more from him in about 20

minutes than I had in the entire 15 months since I was diagnosed. This

doctor informed me I was doing extremely well on the Gleevec and there

was no need for concern about having a transplant at this time. I had

had a major ctyogenetic response. I learned from my cml friends in the

support group this meant remission. When I explained to him what the

other doctor had been telling me all this time, and asked why, his

words were, my previous doctor was a transplanter, and this what he

pushes for. I'm telling everyone my story because I feel what I was

put through could be happening to someone else or could happen. Like

my new doctor said, BMT is the only cure...but it can also kill. It is

a roll of the dice....what happens after transplant. I just feel I was

treated injustly, if I was not responding to the Gleevec, and there

were no other alternatives, then transplant is the only other option

left but I don't feel I was given the truth about my condition. I

believe because this doctor was a transplanter, and for whatever his

reasons, whether it be just that he believes in BMT and not Gleevec or

if it be for monetary value to him, I was treated injustly. I know

surgeons, there professions are to perform surgeries, but they don't

take organs out or operate unless it is absolutely necessary.(Well,

I'm sure now after my experience, that there are some that do but we

as patients have to be aware that there are doctors who will misinform

you) Transplanters perform transplants but shouldn't if not needed.

Why do a BMT if it is not needed and you are responding to medication

unless it is your choice. I feel like this was being pushed on me

without significant reason or medical need. Also, because this doctor

was so persistent about it, and his way of wording things that gave me

NO hope, I have been robbed of a year of my life. I had become

depressed, constantly in turmoil with myself about whether I had made

the right decision, withdrawn from family and friends. While I had

made the decision not go through with transplant, and even though I

had not given up, it was like it did not make any difference because I

was being told I was going to die if I didn't have it done right away

and I feel this was wrong.

I'm telling my story to encourage newly diagnosed to always seek a

second opinion, and with this kind of disease, make sure your

oncologist is experienced in cml. I've learned that cml is a rare form

of leukemia and not all oncologists are familiar and experienced in

treating it. My depression has since gotten better, and I now have

hope that I am going to stay alive taking the Gleevec. And should I

stop responding to it, well, I have faith in the doctor I have now

that he will be truthful with me, and not misleading.

I'd also like to add, I'm glad to be a part of this new group, and I

appreciate those of you who invited me to join. I'm saddened that it

was started for the reasons that it was and that issues that had arose

could not be resolved but while I am still an active member of the

google cml group, I came here because there are so many people who I

have come to think of as friends are here. Some of you have become

household names around my household. People who have gave of

themselves to help me during the most frightening time of my life, and

I don't want to lose you. Where would I be today without you guys to

guide me, teach me, share with me? (Without you all, I would have not

known any better about my doctor.) I just pray for all of us to be

more tolerant of others, as we all have our crosses to carry, and to

be always loving and forgiving of others. I sincerely pray for us all

on a daily basis to beat this fight and through prayer, and with the

ever growing knowledge of doctors and having each other for friendship

and support, I know we're gonna make it.

" When you've walked through the valley of the shadow of death...When

you thought the worst was over and the worst is what was left...Some

things He can't explain now, but by and by He will...Look up through

your pain now, you will find Him deeper still. "

Love, Peace, Hope & Prayers, Pat