5 replies to this topic

[DCN55]

I was diagnoised this month with CML in the Accelerated Phase. Symptoms were lose of weight , Enlarged Spleen, Anemia, night sweats, and brusing. I'm on Gleevec now 600 mg. My spleen has gone down in size. I hope I can move to the Chronic Phase of CML if possible.

Doug

[robbie]

Doug...

I don't post very often but wanted to tell you that I was diagnosed with accelerated CML in 1999. I've been on Gleevec since that time (one of the early STI-571 clinical trials) and am doing great! Welcome to the board, this place is full of wonderful people & information. Hope all goes well on your journey....Robbie

[Trey]

Like Robbie, many accelerated phase patients do well on the drugs. Also, the distinction between chronic and accelerated is somewhat fuzzy.  Do you know what test result numbers put you into accelerated phase?  You should also be monitored closely so you could change drugs quickly if there is any lack of adequate response.

[houtex54]

Doug,

(Very cool first name, by the way).  I was diagnosed CML - accelerated phase July 2007.  I started on hydrea for a few days to reduce the overall white cell counts.  I was accepted into a clinical trial for a new drug that was later approved as Tasigna.  Tasigna is very similar to Gleevec in how it works - it was developed by the same company as Gleevec with the intent to reduce the side effect profile, and improve the durability of response to variations of the Ph+ mutation that are resistant to Gleevec.  I was improved to something like chronic phase within a few of weeks. Back to normal, really - just a little more easily tired out than a year earlier.  The improvements from that point have been measurable by blood and marrow analysis.  Improvements in energy levels have been slower, but I have to admit that I haven't been trying to exercise or eat as sensibly as I should.   I gained back the 35 lbs I had lost before diagnosis in about 6 months.  The spleen was normal sized at my one month follow up exam.  The anemia was severe at first, bad enough that I had to be transfused twice.  Since the first month, the anemia has slowly improved to where I am stable at approximately the low end of normal.

I think the entire chronic, accelerated, blastic phase thing is becoming less important as a measure of patients' progress now that there are drugs that actually work reliably for most patients.  The progression of phases was a more useful way to classify the conditions of patients who were not really expected to be "permanently" in remission. About 10 years ago when Gleevec came out, the average patient's prognosis improved so that it is now more useful to describe the patients' condition in terms of their degree of success. The old chronic, accelerated, and blastic stages are giving way to hematologic, cytogenic or molecular as descriptive of the degree of the patients' improved response to treatment.  Phase descriptions are still used, but it seems like they are more often used during diagnosis to help classify a patient before treatment.  After treatment begins, the degree of response becomes the more common measure.

This leads to something else that you should be clear on as a newly diagnosed CML patient.  A lot of information about CML and various treatments available to us who are not medical professionals is out of date.  Be careful about reading too much into anything that talks in terms of five-year survival statistics, etc.  Many of these were written before Gleevec, when surviving 5 years was a very big success.  Gleevec, Sprycel and Tasigna are such good treatments, that the long term survival statistics are impossible to calculate meaningfully.  Gleevec has only been used for a little more than 10 years.  It is impossible to predict what the 25 year survival rate stats will be with only 10 years of data accumulated.

It surprised me that the best (most up to date) information I could get on CML and various treatments was nearly always right here on this board.  I'm not advocating collective experience as a substitute for doctor consultation, or peer-reviewed research.  However, people on this board have pointed out information sources that have proved valuable (as well as comforting) to me as I learn more about my condition.

Doug

[Leukemia_Stupemia]

Welcome Doug!  I have an Atypical form of CML (therefore do not respond to the Gleevac). I did not have any symptoms other than arm pain. They found that I had a 5q- chromosomal deletion during a bone marrow biopsy and was missing the Philadelphia chromosome.   I wish you well in your journey and success with your medications! This discussion board (all of them) seem really helpful and positive. 

Jacquelyn

http://www.caringbri...t/jacquibuckley

[Leukemia_Stupemia]

I agree! I chose to stop reading materials when I saw that I had a prognosis of "20 months"  It scared the hell outta me.. and I was NOT okay with it! There are so many new medications out (mine is Revlimid - a sister drug to Thalidomide)  So not all research is as up to date.

Jacquelyn

www.caringbridge.org/visit/jacquibuckley