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Blast phase cml

Hi,I was diagnosed with blast phase CMl in last November.My white blood cells were 350000 and platelets were 220000.I was put on 800mg Nilotinib per day,in one week my white blood cells came to 6000 and platelets to 20000. My cbc test on 10 days back showed white cells on 4500 and platelets were 62000.So my doctor took me off Nilotinib for 4 days and my white blood cells were 5000,but platelets were 48000.Again he told to hold Nilotinib for 1 week.Today my cbc report shows white blood cells at 5300,platelets at 61000,neutrophils at 88percent,lymphocytes 9 percent.
Please guide me as I don't know what to make of it.I went to shock when diagnosed in CMl in blast phase,then to hope as my blood count came to control after one week of tasigna,but again i am off tasigna and platelets decreasing,white blood cells fluctuating .

hi, Harsh,

I know it must be shocking to find out your result.  My white blood cell and platelets have also been extremely low, your figures are actually not too bad. I had one week off and then continued with my drug despite having very low blood counts, and it slowly crawled back but still lower than normal. My suggestion would be stay home/keep away from the crowd and have plenty of rest. Everything will be fine. Stay strong.

William

Thanks William for the support and advice.I met my onc today and suggested the same thing with weekly blood levels monitoring .I am back on tasigna from today.Hope everything falls in to place.

Hi,

I am sorry you have been diagnosed in Blast Phase CML.... Most CML specialists treat CML in BP by first trying to get you back to a second chronic phase and at the same time looking to transplant you. Ponatinib is currently the TKI that has shown most efficacy in BP CML although I believe nilotinib may also have some effect in some patients.  

Hopefully you are responding to nilotinib and your counts are continuing to reflect that. Has your doctor talked with you about either ponatinib and/or transplantation?

I was diagnosed in late chronic/accelerated phase in 1999 and after responding to imatinib for around 2.5 to 3 years (via clinical trial) I eventually went on to have a successful stem cell transplant in 2003. If you need any further advice please let me know.

Sandy

Hi sandy,
After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10% we may continue with the current dosage of 800mg/day of Nilotinib.I had my 3rd month bmb last week .The results should that
1>morphologically in remission with no abnormal cells
2>Bcr-abl at 2.209%(art pcr).

My doctor said the results was really good as I was diagnosed in blast phase with 30% blasts. I may have to go for BMT if I do not achieve zero Bcr abl by 12 month pcr test.I am going to have a second opinion with a BMT specialist this week. Kindly suggest.

I have some doubt regarding the following kindly advise
1> can I have pomegranate and oranges while on Nilotinib .I stopped taking them after my platelets dropped to 48000 and was taken out of medication for 2 weeks.my doc says it is ok to have them

2>what are the chances of my Bcr abl percentage increasing again as I was diagnosed in blast phase

Hi sandy

after reading your post i feel little relief. I have cml and first started with imatinib. Later cml progress to blast phase. After that i was put on  dasatinib and achieve second chronic phase. But i had some side effect and had to stop dasatinib for 10 days. I did my cbc and result shows wbc count went up as well as blast. Now my doc is putting me on 45 mg ponatinib and i am going for bmt. My question does ponatinib works and bring my blast back to below 5%?

Hi,

Typically, when a BMT is planned and ponatinib is used it’s used to hit the CML as hard as it can in advance of the transplant. This is to reduce the amount of disease in your system so the transplant has the best change of working optimally. Ponatinbib is very potent so hopefully will work as your doctors are planning.

David.