Disease progression
In support of
Shannon Dingey
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Shannon Dingey
Sorry for the break in updates, I had a crazy and traumatic hospital visit at the end of June and having been trying to get baring since.
At the beginning of August my Hematologist ran more test to get a better understanding of how the Systemic Mastocytosis is affecting my body and if it has progressed since my symptoms remain out of control and Gastroparesis has no longer been a suspicion for the cause. She ran a blood test for the VAF (Variant Allele Frequency) % of the KIT D816v mutation. She explained that if it came back higher than 7% then that would mean the disease progressed. Unfortunately I found out on August 15th that the test came back at 28.9% which means the disease has progressed 2 stages to Aggressive Systemic Mastocytosis. There are 4 stages 2 non-advanced stages- Indolent and Smoldering and 2 advanced stages- Aggressive and Mast cell Leukemia. I previously had Indolent and now have Aggressive. This means now the disease is cancer and not just a blood disease and has to be treated more aggressively. The course of treatment is Ayvakit, increasing the dosage from 25 mg to 200mg.
Right now my body is not tolerating the preliminary increase to 100mg, I began experiencing side/rib pain. My Hematologist has taken me completely off the Ayvakit for the time being.
To manage flares and combat decrease in oral intake I have been receiving 2x a week Hydration infusions with the addition of IV Benadryl and Zofran.
At the beginning of August my Hematologist ran more test to get a better understanding of how the Systemic Mastocytosis is affecting my body and if it has progressed since my symptoms remain out of control and Gastroparesis has no longer been a suspicion for the cause. She ran a blood test for the VAF (Variant Allele Frequency) % of the KIT D816v mutation. She explained that if it came back higher than 7% then that would mean the disease progressed. Unfortunately I found out on August 15th that the test came back at 28.9% which means the disease has progressed 2 stages to Aggressive Systemic Mastocytosis. There are 4 stages 2 non-advanced stages- Indolent and Smoldering and 2 advanced stages- Aggressive and Mast cell Leukemia. I previously had Indolent and now have Aggressive. This means now the disease is cancer and not just a blood disease and has to be treated more aggressively. The course of treatment is Ayvakit, increasing the dosage from 25 mg to 200mg.
Right now my body is not tolerating the preliminary increase to 100mg, I began experiencing side/rib pain. My Hematologist has taken me completely off the Ayvakit for the time being.
To manage flares and combat decrease in oral intake I have been receiving 2x a week Hydration infusions with the addition of IV Benadryl and Zofran.
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