Leukaemia and stomach discomfort

[GargR]

Lived healthy life for 70 yrs. Was diagnosed for Leukaemia in March 2021, WBCs suddenly increasing to 229 thousand in November. Taking Calquence 100mg. with mycophelonate 500, twice a day. Blood count markers seems to be under control presently, but for acidity and gas buildup, stomach discomfort getting worse by the day. Any suggestion? Would love to hear.

[Jm954 Administrator]

Hi there,

I see this is your first post since joining us recently so welcome!

Mycophelonate commonly causes lots of gut side effects including the ones you describe. You probably know that ant acids are generally contra indicated with Acalabrutinib (Calquence) because it needs the stomach acid to be absorbed and effective.

I'm wondering why you are being prescribed mycophelonate as it's an immunosuppressant and usually given as an anti rejection drug following a transplant. Unfortunately, it also increases your risk of opportunistic infections and other malignancies.

Do you know why? If you could stop it then your issues with the side effects would hopefully disappear.

Jackie

[GargR in reply to Jm954]

Thanks a lot, Jackie.

[SofiaDeo in reply to Jm954]

Mycophenolate blocks purine synthesis, which could then affect lymphocyte growth. I believe it's used more when autoimmune hemolytic anemia, or another autoimmune condition, (including arthritis) is suspected/proven, and not so much in the US.

arcjournals.org/pdfs/ajps/v...

[GargR in reply to SofiaDeo]

Yes dear, I did undergo AIHA problem in the initial stage, but no more. Still I am asked to continue with mycophenolate for next two months at least.

[Jacksc06]

Hi. Just wanted to say welcome to the family.

[GargR in reply to Jacksc06]

Thanks Jacks06. Wish each one on the community to stay healthy and blessed.

[kitchengardener2]

Welcome to our CLL 'family '. I was interested when I saw your post about stomach issues. I was diagnosed in 2018, I was 67 and had always been healthy. I was fine until my WBC started to climb in 2021. In August I was prescribed Acalabrutinib, Aciclovir and Co Trimoxazole, I had Allopurinol for the first three cycles. A little while ago I became aware of lower tummy pain at my right side. After intensive investigations, nothing sinister was found and now I don't notice it as much. I do wonder if it could be dietary and I really know about it if I eat nuts or other hard to digest things.My drugs seem to be working fine and my WBC was down to 17 from 250 at my last blood tests.

Hope you can stay well and safe.

[GargR in reply to kitchengardener2]

Thanks dear. Hope there is nothing sinister in my case too, and it will get resolved with time. Wish you to stay healthy and safe.

[Hamish_McTavish_III]

Hi GargR,Welcome to the Group. I am fairly new to it myself and on W&W now for around 15 months I think it is now. I noticed discomfort in my stomach at certain times and put it down to my age which is now 73 and around 40+ years taking a NSAID for an arthritic condition. Of course, it always worried me that something else was wrong and I felt my spleen was enlarged at times. My diet has always been good(ish) but I knew I wasn't getting enough fibre so I made a determined effort to raise my fibre intake, cut out my favourite blue stilton cheese and as much dairy products as I could manage without. For me this has worked really well and although I still have discomfort now and again I can usually determine what caused it in my diet. I hope you find the root of your discomfort and are able to eliminate it easily.Best wishes.

[GargR in reply to Hamish_McTavish_III]

Thanks dear. Yes, I am in the process of changing eating habits. Hope it works. Wish you to stay healthy and blessed.

[Otterblue2]

Welcome to the forum.I take my acalabrutinib with yogurt, that works. I get acid stomach when I take it on an empty stomach. I do not take mycophelonate.

[GargR in reply to Otterblue2]

Thanks dear. Wish you to stay healthy and safe.