[CMLHope] Re: Well I got the numbers/something else?

Sun, 22 Oct 2006 07:24:17 -0700

Amen Anjana,
 
Katy, please get on your doctor's rear end, and either get back on Gleevec, or try Sprycel!! I am wondering why he is waiting myself? It should be obvious to your doc that sitting around watching counts go up is not a good thing. I hope everything is okay, please keep us posted. Take care,
 
Terry

 
On 10/22/06, anjana <[EMAIL PROTECTED]> wrote:

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



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