Myeloid lymphoid neoplasm with pdgfra and eosinophils

[Kaiwightman]

Hi, I'm looking for advice if anyone is dealing with the same cancer. 

My story 

Last July 2020 lymphnodes in neck blew up and diagnoses was lymphoblastic lymphoma, although my haematologist ran other test and diagnosed me with myloid lympoid neoplasum with rearrangements in pdgfra that causes high level of eosinophils. My treatment is imatinib and started in November 2020

Prior to treatment I was experiencing joint pain, dizziness, heart palpitations, diarrhea daily and a load more symptoms. 

Once treatment commenced all symptoms disappeared for a while. Until January 2021 for around 2 weeks I had diarrhea and other symptoms similar to before although They soon disappeared and blood tests and scans showed massive improvement and no sign of eosinophils in the blood. 

Now April 2021, I am experiencing the same diarrhea and heart palpitations with little bone aches. My bloods came back Normal and I feel because of that he feels I'm still on track. 

My specialist last time I spoke didn't say much when I questioned this recurrence, now it's happening again.

My question is, if there is anyone here with the same cancer same treatment is this a  normal cycle? 

There are many similar cancers or conditions namely CES,NOS and HES although these do not have the mutation gene pdgfra and do not mimic lymphoblastic lymphoma like was discovered with me. 

Appreciate your feedback 

[Budgie]

Hi @Kaiwightman ,

I'm sorry you're going thru this.  I have terminal kidney cancer, so I don't know anything about what you're going thru.  I do want to welcome you to this community, & say that if you're not getting answers from your specialist,  maybe you can seek a second opinion thru a different one.  You are entitled to know what's going on in your body, & if your current doc isn't forthcoming with any help, maybe its about time you found someone who can tell you the things you need to hear.  Do you know if there are other specialists in your area?

Budgie 

[MyheroCoolSpy]

I want to welcome you, I hope you are doing great. A specialist would be really amazing in your situation.