BCG CANCELLED FEELING FED UP

Hi Halofan . These delays in treatment can be really frustrating when you just want to get things done. You may be right in long covid being unchartered territory and they have to err on the side of caution. One positive is the flexi in a few weeks when you you find out how things are going. Keep your chin up. Best wishes.

Thanks Rily, you are the voice of reason and reassurance. I know you are right . Much love Angela x

Hello Halofan, I had the opposite, I was having BCG instillations but they wouldn't let me have the COVID jab because they were not sure the effects would be. So had to give some breathing space between my last BCG and the inoculation. Then was concerned about catching it and having to stop the treatment anyway. I totally understand your frustration, I have read many a testimony on Mitomycin and it appears to be a great alternative to BCG, I knew very little about it at the time, it certainly was never offered.

Take care

Mitomycin certainly worked very well for my OH. He picked it having had a Turbt, 6 BCG, wait six weeks before cystoscopy which fortunately was under GA due to strictures, as there was already a recurrence this became a second Turbt on the spot. So then they said he had 3 options, more BCG cystectomy which he really didn't want if possible, or Mitomycin. The odd red patch a couple of times but all clear for four years now.

Hi Jacaranda07, thanks for your post, I really appreciate the input. Honestly , covid has so much to answer for !! I suppose i should be grateful they are being cautious as they dont really have a template to work from. Its just my ‘what if s’ took a grip of me and I pictured recurrances everywhere , really went down aa rabbit hole . You guys always help to get things in perspective. Have you finished your BCG now ? How did you find it ? Much love Angela x

Hi Denby, its great that your OH has been clear 4 yrs, thats so encouraging. The nurse didnt seem keen on mitomycin, i will keep it as an option as i dont want major surgery. Much love Angela x

Hello Angela, it's good to mull over other patients experiences, good or bad. Yes I had 14 instillations that made my bladder inflamed. I think I was an exception to the rule and had to stop it. I am however free of cancer at the moment having just had a biopsy carried out mid August showing a negative result. The point is we are all different and react differently to treatments. I wish you well and feel confident you will finally sort out the treatment you are destined to have with or without long COVID.

Take care, Chris 

Hi Chris, the nurse called me last night to say she had a convo with the consultant and they agreed that for now they would stop bcg and depending on results of flexi cystoscopy in 4 weeks, the heated mitomycin will be what they offer next. I think i will start a thread on heated mitomycin HIVEC as i havent seen it mentioned on the forum at all. Thanks 

much love Angela x

Hi Angela,Fingers crossed that this will be a better treatment for you and that you recover from this bout of Covid asap.Love Jane xx

Hello Angela, now that sounds like a plan. Hopefully this will go better for you once you get the scope out of the way. Sounds as though you'll be bringing something new to the forum. I had another Ialuril instillation yesterday which went well (first one since my biopsy). This afternoon off to the dentist for work to be carried out, something to look forward to. Do keep us all abreast of how you progress.

Take care, Chris