Hello, I am sorry about your diagnosis, but I am glad you found this group. This is a wonderful place to get information and support.

I was diagnosed with Ph+ CML in mid-May. After 2 weeks on allopurinol, I switched to 100 mg of Sprycel (dasatinib) per day. I achieved fully hemotological response (normal WBC) in two weeks on Sprycel. I get weekly blood tests to watch for problems, but my last test on Thursday June 21 was entirely normal. I will not get a PCR to check if I have any cytogenetic response until mid August at the three month mark. And I will not have another bone marrow biopsy to check for any molecular response until the 6 month mark. I am hopeful, but the waiting and uncertainty is a little overwhelming. I am seeing a therapist weekly to go over some techniques for calming my mind, and learning to have hope rather than racing my mind down negative lines of thought and fears that are not supported by any logical reasoning at this point because I am doing quite well so far.

In the first 3 weeks I had a cough, occasional minor nausea, diarrhea, and mild fatigue. I was so worried about the cough that at week 3 I had a chest X-ray that showed my chest was clear, and it ended up going a way a week later. At about 4 weeks, I noticed very slight puffiness under my eyes, but it's something I feel more than see. No one else notices, and it does not seem to get worse. Right now, I feel quite good. Virtually all of those side effects have either gone away, or at least I don't notice them except that I still have loose bowl movements (not diarrhea, but not what I would consider normal), and I get really tired in the evenings and can feel mild fatigue during the day if I stop and do nothing for a while. I work, I do what would would normally do, and so far so good!

You two most serious, fairly common (but still less than 20% or so of patients) possible side effects are pleural effusion (PE) and pulmonary arterial hypertension (PAH). PE seems to hit some people early, and others after a year or more. If it happens, there is a flow chart of sorts for the doctor to give you a break, then resume at a lower does. If it happens more often, then you and your doc can consider an alternative medication (there are several, but Sprycel is nice compared to some others because it is only a small pill once a day and you can eat or not eat when you take it). PAH is less common than PE, apparently, but can be more serious and you would have to consult your doc as to what to do about it, but I'm sure a break first to resolve the side effects would be the first step. Besides that, a lot of people retain water in hands or feet or under the eyes, but that can be managed with breaks, does adjustments, and/or diuretics - all with your doctor's help.

Unfortunately, ever single person responds a little differently, and how you respond now might change over time - so you have to take your medication exactly as prescribed, and follow up on all your appointments and blood tests.

I have found many people who have lived over 20 years with CML. I have also found sad examples of a few who have mutations in their disease or progression that had an unhappy ending, but many more people seem to live a long time with CML now compared to those who do badly. Apparently, things were a lot different 20 years ago. TKIs like Sprycel, Tasigna, and Gleevec before that have been real life savers that keep us going much longer than the older "bone marrow transplant" (now called stem cell transplant) that can sometimes "cure" CML, but frequently kills the patient or fails to achieve a cure - making that a "last resort" now a days since TKIs can often do such a good job for such a long time.

I hope that helps! You are not alone!

Hi: I see you are very new here with a recent diagnosis. I have not been on here for awhile. I see you will be starting with Sprycel. I have had CML since 1998, and there were no TKI drugs when I was diagnosed. I have been on Gleevec since Oct. of 2000 with very good results. Gleevec was the first TKI drug invented, then came Tasigna, and Sprycel. I hope you do well on the Sprycel. I know many people who are on it, and getting a excellent response. You get side effects from all these drugs, and sometimes you may need to be switched to another one. Like I said I started on Gleevec, and there were no other choices back then.
Please keep in touch, and let me know how you are doing. I have been doing good, and through my PCR Blood Test which you will learn about later on I have had no cancer cells detected since 2003. The thing is that we are on this for life, unless they come up with a cure, but you can have a long life with this form of treatment.
Just ask me any questions, even if I am on a different drug. Just trying to give you a little bit of information, as I am sure your so confused with all of this right now.

I am in my 3rd month of Sprycel. The first 2 weeks were rough and I ended up in the ER with congestive heart failure and pneumonia due to the fluid retention. I now take Lasix and that helps. I still get very tired easily and the nausea and diarrhea are constant companions.
Good luck ......

Hello, I was Dx w/CML on 6/21/12, started taking Sprycel on 7/7 and as of today 7/19 my Platelet count has already come down from over 2 Million to 1 Mill 3 Hundred! I find that taking it around 4:oop works best for me, because I would begin to feel some side effects from it after about 6 hours. The biggest s/e I was having was Headache and Fatigue, now that I take it later, I start to feel it about 10:oopm and I just go to bed! My Doctor said that the success rate for Sprycel is 90%. Hope this helps. I wish you well in your journey!!