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Glen SakamuraParticipant
When first diagnosed I was administered subQ injections with Vidaza. Two shots for a week. First it hurt a bit but with the nurses and I experimenting the best application, they would spin it in their hands first before injection. This helped and giving it a little faster helped too. As for a port, I got one put in and couldn’t be happier. Unfortunately for me, Vidaza sustains me as I have MDS/MPN overlap Uncl, Sweets. Good luck
Glen SakamuraParticipantI tried putting up two responses and do not see them here. Send me a private email. I am a patient with MDS/MPN and Sweet Syndrome. I can share to you what my HEMONC, not PCP is doing for me. For the last year. glenmsak@yahoo.com
Glen SakamuraParticipantFound out that it is a mix that they do in the Pharmacy. When it gets there it is kinda thick. When I was getting shots, the infusion center and I finally found out that if it goes in thinner, it didn’t hurt as much. What they would do is roll it in their hand to mix it and make it thinner, then the application would be a little faster than a regular shot. I have had 2 shots a day for 5 times a week, and my tummy has had over close to a 100 shots. Because my treatment will remain long term I opted to get a chest port (bioflo). I get my transfusions and Vidaza through it including blood draws. Diagnosis MDS/MPN overlap Unclassifiable, and Sweet Syndrome, Sep 2018. Bottom line, I know it hurts but I also gave you my ultimate option of having a port. I tried it once through my arm veins and could see they were collapsing after my treatments. This is me, hope it helps.
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