I know you shouldn’t believe everything you read on Social Media but I cam across a Tiktok video yesterday, supposedly a doctor, who listed 5 drugs you shouldn’t be on long term. Amongst those drugs was lanzoprozole. I also heard similar recently about Aciclovir. I have been on both of those for probably 3 years. I had CAR-T in Dec 2019 for refractory triple hit dlbcl, I have had no chemo since then. Mylast PET scan was May 2021 which was clear. Anyone else on these drugs?
Hi again Lellynelly. For me it was over 800hrs of chemo, 45 radiotherapy sessions then two Allo (Donour) Stem Cell Transplants for my Cutaneous T-Cell Non Hodgkin’s Lymphoma.
I have been on Lansoprazole for over 9 years now and have had absolutely no issues with it. The main reason I am still on this is due to my "most impressive Hiatus Hernia" due to the reaction to my very final chemo for my second SCT and being violently sick.
I don't have any problems from the Hiatus Hernia but if I reduce the Lansoprazole capsules my Hiatus Hernia kicks off big style....... so this is about the greater good. my consultants don't see me being on Lansoprazole long term. as a problem.
I was on Acyclovir for about 5 years and again had no problems with them........ you are 'only' just over 2.5 years out from CAR-T..... as you know CAR-T is a full on treatment and your immune system recovery is long so the added protections of taking the Acyclovir is important especially with regards to Shingles....... you don't want Shingles. I actually still have an emergency pack of Acyclovir just in case I do develop Shingles.
I am also on 7 other drugs including a General Antibiotic that I will be taking for life.
As you say........ "I know you shouldn’t believe everything you read on Social Media"........... I would agree with you.
