Long term medication

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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 . 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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