My son was diagnosed on last Christmas eve and did a BMB and BMA on 12/30 to make sure it is CML. He started Gleevec with 600 mg daily from 12/30/2010. The doctor saw us 12/24/2010 and told us it is CML but will do the marrow to make sure nothing else. She told us that the potential treatment would be one BMB and another one a month later and then 3 months and 6 months later. I did not know anything to look for when my son was diagnosed at that time since I have the slightest idea about anything. So here is the treament and progress so far and I have questions later if anyone can help.
Date WBC RBC HGB Platelet
|12/30/2010||151.8||5.85||11.6||starts Gleevec 600 today 727|
Start taking Gleevec 12/30/2010 with 600 mg daily dosage. He got nausea and vomited several times to start the medicine. From 12/30 to 1/27, he throws out, I would say about at least 5 times. When the lab result is out on 1/27, the team doctor (not my son's doctor) is kind of surprise to see a very good progress with ANC 920. I asked if we can drop the dosage to 400 mg and he calls our doctor and the doctor wants us to keep the same dosage. I looked at the WBC which is too low from my thought and somewhere I read that Gleevec could cause all blood counts to drop too low. Therefore, we reduced the dosage and my son skips about 5 days of taking medicine out of 14 days before the next doctor visit on 2/10/2011. So the result of 2/10/2011 is showing a very good improvement and the ANC is 2160. We did not tell the doctor that we skipped so much medicine and just told her that my son forgot to take about 2-3 times instead of 5. She wants to keep the same dosage of 600 mg. She wants to discuss to have another BMB and BMA and I asked her to do another later in the summer. But she insisted that it has to be done within 3 months after the first BMB. The reasons she gave me is not convincing.
So, I do a lot of researches and found lots of great information here. As the NCCN recommends for 6 months to do another BMB, I don't know why the doctor wants to do it in 3 months. I want to convince her not to do it so soon but on the other hand that I don't want to upset her too much with my personal opinion. She did not really comment much on the 2/10/2011 report as I viewed it as a very good progress. So from the progress, is my son in the HR? I don't see the PCR testing being done, should I ask the doctor to do that?
Since the diagnosis of CML, my son has changed a lot to a better life style as he did not want to before this health's issue, so this is somehow a good news. Now, he is eating more than 80-90% plant based and no more junk food. He also eats fruits, freshly sprouts, whole grain rices and vegetables. No more soft drinks and sugar. He also drinks around 2 oz. of fresh wheatgrass juice almost every day. And he enjoys with the changes. I see that he is having good appetite and good energy and I can see he is doing much better from the appearance of his face. He is just like a healthy young adult but has the nausea issue with taking Gleevec and he found out to take the medicine before bed helps.
So, my questions are, is it too soon to do another BMB where I don't see reasons to do that if we can do the PCR or FISH on blood. Is my son in the HR this stage? He will have another appointment on 3/14 and the doctor wants to tell us the next BMB at that appointment. Please comment on the progress of my son's treatment or any other inputs will be appreciated. Or does anyone has information regarding to more holistic way to deal with this health issue? I am learning. Thanks.