Hello, I am new on here and hope this is the correct area to ask my question.
November 2019 I was diagnosed with AML NPM1 mutated FLT3 ITD. I went on the AML 18 trial with CPX x 3, I went into remission but 5 months later it was back. I have since been on Gilteritinib. After approximately 6 months my bloods improved to an ok-ish level, not great but not bad either.
I also have diabetes, COPD. Heart problems caused by medication but under fairly good control. I am in need of a gall bladder operation and I am on the long waiting list.
After speaking to another Gilteritinib user, I find that the hot stabbing pains I have had almost since the beginning of taking Gilteritinib it must be that which is the cause.
I have dry eyes which I recently read on Facebook is a symptom!
So now I am wondering if my compete lack of interest in food is due to my gallbladder or Gilteritinib. Does anyone else on Gilteritinib have this problem?
Thank you
Hi and welcome to the Online Community although always sorry to see folks joining us. I am Mike and I help out around our various blood cancer groups.
I don’t have AML but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a with many relapses over my years so some way I understand the changes you are having especially the treatment 'left overs' as I also have heart issues because of the various meds I have had over the years.
The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services. I see that you have joined our supportive Acute myeloid leukaemia group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green link I have created above. Then once the page opens you can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using). You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
There are a few active members on the AML group at the moment so lets look for them to pick upon your post.
You may also want to put up your question to our Cancer Nurse Team in our Ask an Expert but do allow a few working days for a reply.
Always around to help or just to chat ((hugs))
