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 --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
