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Anybody out there on Sprycel (dasatinib)? I was on Gleevec approximately 7-months. After seeing a 2nd opinion doc and having a 2nd bone marrow test, I was told the Gleevec was not doing what it was suppose to be doing. Therefore, I was put on Sprycel. Side effects for me are headaches every morning and fatigue, but the biggest problem is my platelets dropping significantly. I was put on 100 mg of Sprycel and they dropped, in 4-weeks to 49,000. Furthermore, my whites dropped to 3.8 in the 4-weeks time. I'm now on 50mg's. I was wondering if anyone else is going or has gone thru the same thing? Thanks for any input.
Posted on 09/20/09, 02:51 pm
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Reply #1 - 09/23/09  4:18pm
" Hello specialtalk,
I have joined the site to give you this reply. I am on glivec at the moment, but expect to be put on dasatinib any day now. In doing research I have come accross a vey usefull web site, the link to which I will put on this post. It is the diary of Jerry Maysfield, who was in the original trial for dasatinib & describes the problems you are having. It is a large blog, but well worth reading, & if you go on thr Sprycel link in the lefthand side of the page, you can leave a messasge for Jerry, who will use his vast knowledge of the drug to answer you

Hope thos helps, best wishes & good luck
Buckingham, England "
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Reply #2 - 09/23/09  9:03pm
" Thanks so much Bob. I actually was in this blog website before, but never realized the diary was there. I will definately read the diary. I appreciate your reply and good luck on dasatinib. "
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Reply #3 - 09/24/09  4:01pm
" Dear Bob,
Thank you for providing the link which I have found to be both extremely encouraging and helpful! Many thanks! Take care! "
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Reply #4 - 09/25/09  12:46pm
" Just to say that as I thought, I have been put on Dasatinib today.
After 9 months on glevec my bone marrow has stopped at 86%, & mutations have been found that are stopping it from working.
100mg Dasatinib in the morning & wait to see what side effects I get.
Bob "
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Reply #5 - 09/25/09  1:13pm
" Good luck. I'm going out of my mind right now...after dropping my Sprycel from 100mg to 50mg, my Platelets have now dropped to 22,000 from 48,000. My hemoglobin is also dropping. My whites have actually increase a little - from 3.2 to 3.88 but still not great. I really hope you do well on the Sprycel. I'm currently waiting for a return call from the doc. "
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Reply #6 - 09/26/09  8:49am
" Karen, please keep us posted on what's going on. Thanks! Marie "
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Reply #7 - 09/27/09  9:23pm
" Well, I've been told to hold up on the Sprycel for 7-days. We have to see if my platelets start to recover. One other side affect I've had from the Sprycel are mouth ulcers....anyone else out there with them? Both my 2nd opinion doc and my onc have not seen this before, yet I've read on the web that is a side effect. I've had one for 4-weeks now - just starting to get a little better and using magic mouthwash, trush meds, cortisone dental past and pain relievers...it's been quite a nightmare. I'm still trying to find the "good" in Sprycel...I've only been on it close to 4-weeks. If this doesn't work....what is next? "
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Reply #8 - 10/07/09  7:26am
" Dear Karen,

Two of my friends from the Sprycel trial had mouth ulcers. Low WBC can make you prone to mouth ulcers but only one of my friends had low WBC. For both of them, it went away after a while. Sprycel can lower both platelet counts and WBC. Most of my friends had low counts on Sprycel and then with time and holding the drug, or lowering the dose are okay now.

Best Wishes,
wife of Royston
d/x Jan 2002
400mg Gleevec
PCR 4-log reduction "
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Reply #9 - 10/07/09  9:05pm
" Thanks Anjana for the reply. This has been a nightmare with these ulcers...it's been 5-weeks now and there is still one big one in my mouth. My 2nd opinion doc took a culture on Monday...hopefully I will have the results by the end of the week. I've been off the Sprycel for 12-days now and will be off it until, at least, next Thursday when I see the doc again. I am having bloodwork twice a week right now. Hopefully my numbers recover enough to start the drug again by next week. My ANC's on Monday were 600, my WBC was 2,600 and my platelets were 45,000....all low. Next week I'm having a mutation test and a FISH test. If my #'s are not up by next week, I'm headed for another bone marrow biopsy to see what is going on. This CML is horrible if your body can't tolerate the meds. I'm getting very frustrated and scared right now. "
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Reply #10 - 10/10/09  7:59am
" Dear Karen,

Please hang in there. Although some of my friends initially had a tough time on Sprycel, it did get better. Sending you support.

Warm Wishes,
Anjana "

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