Re: Re: A decade of CML-Suzzie

[Guest guest]

Hi :  Thank You for writing back.  Where are you actually from that you

went to NY?  Maybe we did pass each other along the way, that would be amazing. 

I live in NJ, and that was the easiest place for me to go, and I felt so blessed

that NY was available.  I could not afford to travel any distance for

treatment.  Please keep in touch, I would like to know how your doing and if you

have to switch.  I really think my friend who is on Sprycel might need a switch

to Tasigna.  She does not seem to want to do anything else.  She feels this is

as good as it gets.  Happy Thanksgiving

Suzzie

From: christine_saomiguel <csaomiguel@...>

Subject: [ ] Re: A decade of CML-Suzzie

Date: Thursday, November 27, 2008, 10:57 AM

Hi Suzzie,

I was being treated by Dr. Feldman while in the STI trial...I wonder how many

times we

might have passed each other in a hall!

I have not had any Pulmonary edema or pleural effusion while on Sprycel. I do

require a

puffer to help keep my upper respiratory clear though we are not sure why. This

is not

common for most Sprycel patients. The hypothesis is that I have some upper

respiratory

edema from the Sprycel. I take a diuretic and use at puffer and feel fine. There

is the

possibility that I have 'drug-induced' asthma or adult onset. I have recently

been for a full

pulmonary function test to see if it is adult onset asthma. I see my doc for

results in 2

weeks. But the treatment would be the same. This is my main side effect.

I still tire easily (the fatigue part) but much less so than on Gleevec and my

" battery "

recharges faster then on Gleevec. I have some joint stiffness but not pain at

this point.

I feel very lucky to be feeling so well on any drug!! For me, so far, Sprycel

has been the

easiest. But I haven't reached CCR yet, and therefore not even close to a 3 log

reduction. I

hope to try one of the newer drugs if I don't reach these milestones. But I pray

that a

curative plan is on the horizon so we can all get off these drugs altogether!

My employer's group plan has just notified me that my coverage is being

terminated. The

" follow me " plan I can access from the carrier has a $1200 upper limit on

prescription

drug coverage per year! I am not going to get far on that! Half a month's

supply.

Thankfully, my husband's plan should cover 80%. Now we have to pray his employer

survives the economic chaos! Aside from the obvious freedom from disease a cure

would

bring, it would also free up so many people from tremendous economic pressure.

Take care and Happy Thanksgiving,

> > HI CHRISTINE: Congratulations on how well your doing. I found it

> interesting that you went to NY for the clinical trial. I was

> diagnosed in Dec. of 1998, and it will be 10 years for me this Dec.

> 2008, and I did the Interferon, the ARA-C, Went to see numerous

> doctors about a BMT. I was in NY at NY Presbyterian Hospital under

> Dr. Silver for my trial from Oct. 2000 to May 2001 when it

> was approved by the FDA, and I was in CCR by July of 2001. I am

> still on 400mg. of the Gleevec. I have been very blessed. You said

> you were on Sprycel. I kept in touch with a woman who did not

> respond to the Gleevec, and she has been on Sprycel now for awhile.

> She tells me she is doing fine, but when she calls me she sounds like

> she is drowning in fluid. She has not reached remission, and she

> just seems happy to not have all the side effects of Gleevec. You

> mentioned Pulmonary Edema. Is it a constant problem on the Sprycel?

> Could you please write back to me to let me know how your dealing

> with side effects of Sprycel.

> Suzzie

> >