Treatment Update
In support of
Shannon Dingey
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Shannon Dingey
I have been back on the Ayvakit since Sept 11th, at 100mg, and I’m tolerating it well.
Another mast cell test came back. It was a Prostaglandins 24 urine test; it came back at 22,605 and normal range in below 1800 so very elevated. This is another indicator that supports that the Systemic Mastocytosis has progressed. The main treatment protocol for elevated prostaglandins is Aspirin, but the challenge I had done back in May for prostaglandins, when the level came back at like 2100, resulted in an anaphylactic reaction. The new result just came back even though it was submitted on Sept 12 (for the third time because the lab messed up the first two) so it essentially pre Ayvakit restart. They will recheck the level in a month or 2 to see if it decreases as a result of the Ayvakit, if not, they may consider a desensitization challenge for Aspirin to get this level down. This will also be dependent on if SM symptoms stabilize enough.
Some good news. At my Hematology appt yesterday they checked my tryptase level (another mast cell level) and it came back 12.5 and normal is 11.5. This is huge because it’s never been that low and also means the Ayvakit is working. In a couple months they will do a recheck of the KIT mutation blood level and the prostaglandin level to get a better idea of how the Ayvakit is working to kill the disease.
Symptomatically I am doing better. I’m now only having flares every 24-36 hours, this is still with the help of Benadryl and Zofran at hydration infusions twice a week. But before I was back in a flare 6-12 hours after the Benadryl and multiple times a day or constantly on the days without infusions. The main symptoms I’m dealing with now that are constant are fatigue and bone/muscle pain which are likely side effects of the Ayvakit and not symptoms of SM.
Another mast cell test came back. It was a Prostaglandins 24 urine test; it came back at 22,605 and normal range in below 1800 so very elevated. This is another indicator that supports that the Systemic Mastocytosis has progressed. The main treatment protocol for elevated prostaglandins is Aspirin, but the challenge I had done back in May for prostaglandins, when the level came back at like 2100, resulted in an anaphylactic reaction. The new result just came back even though it was submitted on Sept 12 (for the third time because the lab messed up the first two) so it essentially pre Ayvakit restart. They will recheck the level in a month or 2 to see if it decreases as a result of the Ayvakit, if not, they may consider a desensitization challenge for Aspirin to get this level down. This will also be dependent on if SM symptoms stabilize enough.
Some good news. At my Hematology appt yesterday they checked my tryptase level (another mast cell level) and it came back 12.5 and normal is 11.5. This is huge because it’s never been that low and also means the Ayvakit is working. In a couple months they will do a recheck of the KIT mutation blood level and the prostaglandin level to get a better idea of how the Ayvakit is working to kill the disease.
Symptomatically I am doing better. I’m now only having flares every 24-36 hours, this is still with the help of Benadryl and Zofran at hydration infusions twice a week. But before I was back in a flare 6-12 hours after the Benadryl and multiple times a day or constantly on the days without infusions. The main symptoms I’m dealing with now that are constant are fatigue and bone/muscle pain which are likely side effects of the Ayvakit and not symptoms of SM.
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