Re: Still Off Gleevec- Susie

[Guest guest]

Hi Susie,

Call this a " small world " syndrome, but I think the " American Friend " Tim

is referring to is none other that Rockefeller who has been

posting here on the information from ASH. I was at ASH also and we met with

Tim and had a brief discussion about " pulsing " as I too have been

" pulsing " for two years with Gleevec. I am PCR undetectable and have been

all along. In fact, I was undetectable on a very low dose of interferon

prior to starting Gleevec. Interestingly enough, the amount of interferon I

used to take did not really cause any side effects at all. However, I have

had lots of trouble on IM from very low Hgb, to issues with edema, and

intranasal ulcerations among other things. It is hard for the people

reading this who had nothing but interferon back in the " bad " old days of

CML, as the very high doses of interferon required at that time (before IM

was available) caused side effects that are almost unimaginable in today's

world of CML. People were actually bed ridden and had an extremely poor

quality of life. So, even with the side effects we complain about, Gleevec

has greatly improved on our quality of life issues. That being said, I

think we all have to keep in mind (myself included) that whatever drug we

take to control (if not cure) this disease will have some side effects

related to it. Cycling has greatly improved all of these side effects for

me. I think that once you start back on Gleevec, you will notice the side

effects are greatly diminished.

You might be interested to know that there were a few posters presented at

ASH about patients who had gone off of Gleevec due to side effects or

because of pregnancy. The good news is that when they went back on Gleevec

all of the patients regained their previous levels of remissions and in

quite a few cases, they actually achieved even better results.

Keeping this in mind, and although you haven't asked, I couldn't help

thinking about what I would do if I were in your shoes. I am pretty sure I

would get back on IM and give it another chance while keeping up a dialogue

with Dr. about the possibility of him monitoring you if you need to

take another break. I am not so sure I would be able to allow myself to

relapse to the level needed to switch onto another drug.

I hope some of this helps you with your decision making. Please keep us

posted. I also wanted to say that I really admire Tim and I am

excited about the study he will be starting, hopefully earlier in the New

Year, about taking patients with long sustaining undetectable PCR's off of

Gleevec and monitoring them very closely. You've got a top Doc there!

By the way, where in Australia are you located? My long suffering husband

will be leaving in a few days for Australia for a few weeks - how's the

weather?

Cheers and Happy New Years,

Cheryl