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Old Sun Jun 21, 2015, 02:59 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
Hi Hopeful and Hxmxsx,
Hopeful, I'm not sure who you were posting to but I want to address what you said. If I remember correctly, the clinical trial that Don was in assessed his platelet count after 3 mos. or 12 weeks. If he didn't have a response or needed platelet transfusions during that time, he would have been removed from the trial. It didn't have anything to do with any danger - it was just the protocol NIH and Glaxo decided on. After that, as I mentioned, the only reason they would take him off Promacta if he had a response time was if his platelets went over 100,000 which they did and he stopped taking the drug.
As far as Don's cytogenetics, his initial biopsy showed only deletion 5. After he received Campath, his deletion 5 disappeared and he then came up with the trisomy 8 and del. 20. He lost the trisomy 8 for a short period of time but it came back. His deletion 20 and trisomy 8 have remained consistent since then.
I don't remember if what you have read was part of the listed concerns with Promacta when he went into the trial. He has had probably 6 to 8 biopsies since 2012 when he stopped Promacta and his cytogenetics have remained the same. The last biopsy performed was in March, 2015.
One thing I will tell you is that our oncologist - who at one point had Don on her "death list" - told us that he was alive today because he was willing to take a chance. As we know these drugs and treatments all have potential side effects. With Don it was somewhat of a no brainer as nothing else had worked and he was willing to take a risk** - which paid off in spades. But of course each person and case is different and these decisions ultimately can only be made by the individual patient, their doctors and loved ones.
Best wishes,
Sally

**I just read my post to Don. He said the bigger risk to him was not taking the drug...

Last edited by Sally C : Mon Jun 22, 2015 at 08:28 AM.
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