missing BCG treatment

Hi Nanasue, afraid I have no knowledge of prolapsed bladder issues you are suffering but hope someone else will come up with that for you. Though my husband has always struggled to hold on for the 'right' time but opinions vary as to how long that is anyway. Just want to encourage you really as I know it can feel lonely when you post in anxiety and don't see any sign that there is anyone 'out there'. The only other thing I would offer is, should the BCG not keep growths at bay at any point,  there is always Mitomycin too.

All the best, Denby

Thank you for being there.

Hi Nanasue, I'm afraid I don't know anything about a prolapsed bladder either but I have had 18 doses of BCG. I know for sure they wouldn't want the BCG to leak on other parts of your body; my nurses are very careful when they put the infusion in to avoid drips on my skin. I also think surgeons might worry about cross-contamination so they will want a gap between dose and operation. I had spinal surgery after my initial 6 doses of BCG and even though operation site was quite far from the bladder, it was definitely a factor they considered. I don't think an extended period between doses is necessarily a worry, though nobody can predict when a reoccurrence will pop up. My two reoccurrence have been within 6 months of a dose. As Denby said there are other options anyway. First step is to get your prolapse fixed  so good luck. x

Thank you for your reply.  The main annoyance is not getting any answers from the professionals it is very unusual with our hospital they are very good as a general rule.

That sounds a miserable situation to be in.

If you've managed the first course of BCG, that is the most important. I believe there is some controversy about the efficacy/necessity of maintenance doses. Might be worth contacting the consultant's secretary to try & get an update. If that fails, then you could try PALS.

Hi Teasswill

Yes it's just annoying that I have had the treatment for 2 years and now with 1 year to go it's at a halt.  I will try his secretary today and see what she says.

Thanks for the reply.

  how many BCGs have you had ? X 

Hi so sorry for what you must feel I was ignoring your reply to my I have been so low I have not really taken any notice of anything going on.  I have had the first 6 then 4 more sessions of 3.

Hi Nanasue, just to say I hope you're feeling even a tiny bit better.

Denby

regarding the BCG as I don’t know anything about a prolapse. I’m taking it that you’ve had 18 BCGs over at least a year? I had 15 over a year then there was a world shortage so I never resumed the BCG when it came back I stock. My CNS said I could start all over again if I wanted to but I declined the offer as she said the thinking then was a years worth is enough, also it’s not so hard on the bladder,  must say though my hospital are still giving the full 27 but I have heard of hospitals just giving the years worth. Anyhow I’ve had no recurrence over 7 years so please don’t worry too much about missing out. ............ I thought I remembered you had had a good few BCGs so that’s why I asked. Hope you feel better very soon, sending you some hugs x