Dear Tony, It is normal to be PCR positive for Gleevec patients. My husband is still PCR positive after 4.5 years on Gleevec but he remains in CCR which means his marrow cytogenetics test and FISH test come out negative. Same as you. Some patients do become PCR negative but many Gleevec patients remain PCR positive. He is on 400mg Gleevec.
What you may need to discuss with your onc is doing the quantitative PCR test like is done for most patients on the list as well as by our doctor. This test gives an actual number which you can track for relapse. If there is a downward trend in numbers, the disease is reducing but if there is a consistent upward trend in PCR numbers, then there can be relapse. Very few Gleevec patients in chronic phase relapse so do not worry. What doctors want patients to do is reach a milestone called a PCR 3-log reduction which is a 1000-fold reduction in PCR values from diagnosis. If you do not have a diagnosis PCR, that is fine, usually, the lab has a baseline diagnosis PCR from other patients. If your PCR value is 1000 times lower than lab baseline, you are deemed to be more or less safe from relapse. That is why you need to be doing a quantitative PCR testing. So, you know what the numbers are. Doctors have been known to increase dose to reduce the PCR, it does bring additional toxicity to some but if the PCR value is at 3-log, most doctors will not increase dose as PCR values have been seen to fall even up to 5 years from studies. So, you need to get a PCR number and as long as this is falling with time, your doc probably will not increase your dose. Regarding allopurinol, yes, my husband took this at diagnosis. At diagnosis, CML patients have a lot of leukemic white cells and they die at a rapid rate and when dying give off uric acid. Too much uric acid in the blood can give rise to gout-like pains so doctors use allopurinol to reduce uric acid levels. In my husband's case, his uric acid was raised at diagnosis and when allopurinol lowered it to normal values, the doctor took the allopurinol off. It could be that your uric acid levels were not raised at diagnosis. Regarding pain in the spleen area, best thing to do is ask the doctor to examine the area and see if there is any cause for concern. With a very low positive PCR value, your CML is under control so like Suzieq says, it could be residual pain from a previously enlarged spleen or it could be something else. Ask the doctor to check it out if it continues. As far as I know, when white counts are 50,000 or more only then the spleen starts to enlarge. So, check it out with the doctor. Tony, a low PCR result is very good, you just need to do the PCR number test like the rest so you know you are at safe levels for relapse. Best Wishes, Anjana caregiver to Roy d/x Jan 2002 enlarged spleen, WBC 282,000 March 2002 400mg Gleevec PCR positive --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
