Continuation of antivirals post treatment

Hi everyone,

I completed round 6 of FCR in March. I've been building myself up and was beginning to feel somewhat normal again when 10 days ago I got shingles. Can I ask anyone out there who's had FCR how long you took antivirals for after treatment ended? I was told to stop after 2 months. Now I have shingles. Other people seem to have continued for 6 months. I would appreciate some information on this as I would like to prevent others suffering by suggesting to the haematology unit a possible increase in the course of antivirals post treatment.

Lorna

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  • Finished FCR last Autumn no antivirals.

    Had shingles in foot late January and continue to take a couple of pills daily on advice of haematologist.

    Dave

  • Thanks Dave for that info. Hope all goes well for you. Lorna

  • Hi Lorna,

    Sorry to hear you have shingles, especially so shortly after completing your FCR treatment. When I had completed my FCR in 2011 I was put on 960mg Co-Trimoxazole (Septrin) for just 28 days, no shingles but a few other infections. CLL and the FCR treatment lower your immunity so some dormant viruses like shingles (chicken pox first time round) can re-activate. I would suggest you speak with your haematologist or cancer nurse and let them know if you haven't already. There does seem a lot of scope around the world as to how much and how long antivirals are given to CLL patients. I suppose at the end of the day it depends on the state of our individual immune system, some are stronger and others need a little extra help and protection.

    Take care and I hope you can get over your shingles soon and enjoy a long remission.

    Kevin - Essex, UK

  • Thanks so much Kevin for your good wishes. Hopefully the pain will pass soon.

  • Hi Lorna, I completed FCR in January and continued taking antiviral drugs for 3 months, I will take antibiotics for 6 months.Have not had shingles, what are the first signs to look out for ?

    I hope yours clear up quickly, best wishes, Ian

  • The first sign was a pain in my side. I thought it was my spleen acting up again. Then I had a pain in my back and finally two days later the rash began. Just a few spots around abdomen at first. Important to get on antivirals as soon as possible as it can turn very nasty and even last for months.

    Hope all goes well for you.

    Lorna

  • Thanks, hopefully it will not happen but at least I will be prepared. Hope all goes well for you, Ian

  • Hi,

    I completed FCR at the end of November 2016. I am still taking two anti-biotics a day (zelitrex and wellvone) and will continue until my next check-up in September.

    For the last three months I have had a series of mouth ulcers, sometimes four at a time, which may be due to a compromised immune system. Very boring ... it's the stupid, little things that can really drag you down sometimes ! I mention this only because it might be the reason why I am still on anti-biotics.

    I am not in the UK however, and it may be that 6-12 months on post FCR anti-biotics is the norm here in France.

    All best,

    Chinchilla

  • Hi,

    I'm on antibiotics too but this won't stop shingles. A low dose antivirals will provide protection.

  • I completed FCR 4 1/2 years ago but am still on antivirals. They did take me off them 2 years after treatment and within a month I came down with shingles. Consequently I was put back on them and told I will remain on them until my lymphocytes come up to normal . At the moment they are still only about 80% of the norm. In fact they told me it might be for life we just have to wait and see. I am on Valtrex which hasn't given me any problems I am aware of and I feel if it is saving me from another shingles attack or any other viral attack for that matter it is worth it.

    Sylvia Hancock

  • Thanks Sylvia for that information. I'll ask my haematologist if I should continue on a low dose as a preventative measure. I was hoping that once I get rid of it that it might not return.

  • I had FCR 5years ago and I am still taking antiviral Aciclovir because of low lymphocytes and touch wood it seems to give some protection. I am also taking antibiotics Penicillin V because of splenectomy for ITP. The pleasures of CLL!

    John

  • Thanks John. It's interesting to hear the differences in post FCR treatment.

  • At least 6 months after FCR on anti viral and anti becterial.

  • Finished FCR in December and I am still on Bactrim 3x a week and Acyclovir 2x a day. Dr feels I will be on both for at least on year.

  • Thanks for that info.

    Lorna

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