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1 year with CML

Hello, i am new on this forum, please forgive my poor English.

I am dx jan. 2010 with cml, I had a thyroid disease (Graves) and had to stop medication to see if the Graves has disappaered. Is was not gone,but I had a lot of complaints which i never had, after a bloodtest I heard my diagnose CML. I was very scared to die, happily I am still here, but the doctors hasn't found the right dosage drug for me. I was on Gleevec 400 from jan-june, then there was no result in my bone marrow level (molecular??). So they raised to dosage to 800 and then my bloodcount became much to low and I stopped with Gleevec for 2 weeks and then started with Sprycel (100) in november. The first month was very good, no side effect at all and feeling very well, but the next result now 4 weeks ago showed low levels again wbc 4.1 rbc 63 and hgb 6.8. So I had to stop Sprycel for 2weeks and last monday the result was better hgb 6.8 rbc 51, but wbc 2.9. So I could not start again with Sprycel. I was disappointed. My doctor told me to wait another 14 days and then try again with Sprycel 100.

My question who is familiair with this problem??

Gr. Jolanda from Holland

I think you should go back to your Doctor and ask if it might be better to take a lower dose of Sprycel and slowly increase the dose in line with your blood results.I think Sprycel comes in 20,50,70 mg tablets. What are your platelet counts?good luck

Last week my bloodcounts went back to normal. Wbc 3.9, hbg 6.6 and platelets 175. So I could start again with sprycel, but on the same dose (100 mg). Now 1 week in progress, I feel oké, but I am a little afraid that the counts will drop again. My dr. said I have to try it, and if it's drops again the dose will change to 70 mg. I hope it will work.

Gr. Jolanda (Holland)

Dear Jolanda,

good to hear that you are able to take dasatinib (Sprycel) again. I do hope your counts hold up this time- but if not I am sure the reduced dose will be effective for you. As long as you are monitored effectively that this the most important thing.

best wishes,

Sandy

Sandy, thanks for your support. Next wednesday, i hear if my bloodcounts will be ok. I am very nervous about it, but i still have faith in the sprycel.

Gr. Jolanda

I am back on low counts, 49 rbc. So they reduced my Sprycel for 70 mg, but sadly they could not get the pills of 20 mg, so i am now on 50 mg for about 5 days, hope it will not be a problem. Tomorrow I can get the pills of 20 mg, so I can start with it. I am feeling great, to bad they are going to start the bmt test, I am afraid to go into that road.

Gr. Jolanda

Dear Jolanda, I am sure it will be fine to take the 50mg dose for just 5 days. I hope you are allowed to see if  70mg Sprycel will control your CML and give you an optimal response before committing to any other form of therapy. You will see very quickly if your counts drop to dangerous levels. I understand that other CML experts do allow platelet counts to drop quite low (20?) before stopping therapy. As long as you are monitored correctly that is OK.

However, low counts can be managed and the option of BMT is not something to be taken lightly. Very few CML patients are put forward for a BMT these days. Of course there are always individuals who do not respond to TKI therapy but that is quite rare.

Hoping your response is good and you stay on therapy long enough for it to show it is going to be effective in the longer term.

Best wishes,

Sandy

I am now on 50 mg Sprycel and still have low platelets (15) should be 140-450 and hemogobine 5,4 (should be 8-12). If the counts are still low on fridayI will get a bloodtransfusion. Wbc still stable. Hope this will be the lowest point for me, but I do not have a lot of faith in it. I am very tired and not able to work (which I miss very much). But I had orders to rest from my doctor. In the last month, I have seen a cml specialist and she said there were no mutations, spleen has normal size and there should not be any reasons to stop the sprycel from working. Sadly I also heard that my 2 loving sisters are no match, so I hope the transplant will not be needed. It is wise to take less than 50 mg Sprycel, has any off you have expierience with this???

Gr. from Holland Jolanda

Are you all looking forward for the marriage of you Prince??? I am als going to see the event on the TV.