My heart is bleeding with pain. My 7 year old boy has been diagnosed with T cell Lymphoma Lymphoblastic, it was all going well with chemo since starting his treatment in June 2022, however for the past 4 weeks, he is in hospital and just a couple of days ago, we have been informed that he has Pancreatitis as a side effect of chemo drug Asparaginase. What's killing me inside is the consultant has said due to stopping of Asparaginase, the chances of a relapse increase from 10% to 20%. The consultant said there may be no substitute for Asparaginase but when I looked into it, I found "Erwinase" and I spoke with the head nurse and she said in situations like these when Asparaginase causes complications, generally speaking the consultants give "Erwinase", I'm wondering why the consultant didn't suggest me this and this is one of the reasons of joining this group, can't blindly rely on anyone, tomorrow I'm speaking with the consultant, have already emailed him.
I was wondering if anyone else has been in a similar situation?
I'd greatly appreciate a response from other members please. Many thanks in advance
Hi Forestgreen and welcome across to this corner of the community. So sorry to hear that your son is dealing with this at such a young age. I was diagnosed over 23 years ago with a different type of T-cell lymphoma but eventually I did get into my first long term remission over 6 years ago.
I see that you have been talking with my friend Paul1969, although I have had a lot of treatments over my years I have not had Asparaginase. You do need to sit down with his consultant and get a clear understanding as to what the way forward is.
I was looking at you conversation with Paul and I see the subject of Stem Cell Transplant (SCT) was covered. Like Paul i also have had SCT......in fact i have had two Allo (donour) SCTs as the first failed. I can see the challenges with regards to him coming from a mixed race background...... but you are not at the SCT point yet.
Always around to chat.
