Hey Katy,
I am very glad to hear that. I hope I did not come off overbearing in my reply.
Take care,
Terry
On 10/22/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
Dear Anjana,Thank you for your reply and the information. I really dont know what my Dr. is thinking, he has me kinda confused at the moment and really upset. I agree, he should have put me on something else if he was taking me off of gleevec. Apparently they caught my CML very early, and I have had NO complications except for side effects of gleevec. No mutations, no extremely high WC no high platlets nothing so I agree why is he taking the chance that the CML will become aggressive or resistant? I have an appointment with my neuro this week, as I have mentioned before he also has CML and has been in remission off and on for 8 years, I am going to tell him what is going on and get his thoughts. He knows my onc very well and he may have some insight, if not, then I am going to make an app. with my onc just to go in and talk to him and try to figure this out.Hugs,Katy--
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xanga.com/katybug45-------------- Original message --------------
From: "anjana" < [EMAIL PROTECTED]>
>
> Dear Katy,
>
> Spleen will get enlarged only when the white counts go up to 50,000
> and up. With remission, there are several stages, first you have
> complete hematologic remission when the blood counts get normal from
> high counts, then comes cytogenetic remission when the BMA test on 20
> cells show negative and then molecular remission when the PCR is
> negative. Similarly, relapse can occur in 3 stages in the opposite
> order. You were PCR negative, so first you will show molecular
> relapse, when your PCR is going up but your BMA or FISH may still be
> negative. But if you do not take any meds, this state of molecular
> relapse will translate into cytogenetic relapse and the BMA and FISH
> will become positive, you may test 50-100%Ph+ with time. If you
> continue not taking meds, then finally, your counts will go out of
> control and then your spleen will enlarge.
>
> All patients will not have this kind of relapse, some can relapse
> right out of PCRU into 100%Ph+ and their counts begin rising very soon.
> Some may even go into advanced phases. When doctors see the PCR
> rising, they know the disease is back so obviously some action is
> warranteed regarding therapy. I don't rightly know what your doctor is
> waiting for. Have you asked why he is delaying treatment? Obviously,
> once the disease is on the move, the earlier therapy is initiated the
> better the outcome, you don't want to get one of those mutations which
> can happen if you are on no meds for too long. I know a patient who
> was not on meds for pregnancy and so was off Gleevec, she ended up
> developing resistance and is now on Sprycel. I know other patients who
> have been pregnant and off meds and been fine, question is, does your
> doc know your disease well enough to take the risk to see whether you
> relapse slowly or aggressively? Most docs would just start the meds.
> Are you comfortable knowing your disease has come back and no steps are
> being taken? If you cannot get answers from this doc, consult a second
> medical opinion.
>
> I would be very uncomfortable if Roy's doc had him off meds and the PCR
> was rising. When he is on meds, and PCRs bounce, I worry. We should
> never underestimate CML, dear Katy.
>
> Love,
> Anjana
> caregiver to Roy
>
>
>
--
"There is nothing ever wrong..but
nothing's ever right..such a cruel contradiction".
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