Immunotherapy

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Hi guys can I just ask thoughts on immunotherapy… my husband may be facing that route as he’s had reacurring bladder cancer only after finishing his treatment chemo/radiotheraphy 5 months ago Flushed…. How many treatments of immunotherapy do you have !  Is it weekly !   Are you able to work after each treatment and are you vulnerable mixing with people !     So many questions sorry Disappointed just if anyone can shed some light as we don’t know what we are dealing with this time.   Thankyou x

  • Hi Grub, 

    Welcome to the group, but sorry to hear about your husband's diagnosis and recurrence.

    There are quite a few of us on here going through immunotherapy treatment or BCG.

    This is inserted directly into the bladder via a catheter. You then try to hold in your bladder for two hours. I find two Hours quite difficult, especially as the treatments go on.

    This may differ but I had a 6 week (once a week for six weeks) induction course. This then moved to maintenance instillations after three months, which consisted of one instillation for 3 weeks.

    Then another 3 month break and so on. After my 12th instillation I'm now on 6 monthly intervals, but will still have one instillation once a week for three weeks.

    Overall and all being well I will have 27 instillations in total which takes about three years in total, including all the breaks.

    In between the BCG I have biopsies taken to check that it's working.

    It's a long journey, but not wishing to tempt fate it's working for me so far.

    With regards to working after each instillation could be tricky depending on what he does. I work from home and can log on, but don't really do much as I'm on the loo alot.

    He will need to be near a toilet as the urgency to wee is incredibly strong, plus he will have to bleach the toilet after each wee and this goes on for 6 hours.

    I find I'm tired after each session probably due to lack of sleep from getting up during the night to wee. After 24 hours I'm normally fine, but lots of people have different side effects.

    I've not heard anything about being vulnerable and not mixing with people. 

    Ask away, there is probably a lot I've missed in this post and the unknown is scary right...

    I would say that after the first couple I was so much more relaxed about the procedure, it's not painful just uncomfortable for a while.

    Kindest regards 

    Trevor 

  • Morning Trevor … Thankyou for replying… it’s just helpful to have some insight into what might be .. he’s got an appointment on the 9th of July to get results from biopsy .. he only finished his treDisappointedment last November and a few weeks ago he started to bleed whilst weeing .. the urologist said significant reacurrence Disappointed…. So we have to see what happens next … they did menchone immunotherapy before when he was undergoing treatment…  he is a carpenter/kitchen fitter … he’s hoping not to have too much time off work as his wages have been dropped to half pay if he’s off sick again… but I feel he may need some recovery time but again it depends on outcome.     Again Thankyou for your insite and glad the treatment is working well for you all the best sandra

  • Hi Sandra,  

    Best of luck for the 9th July. Keep us posted.

    Kindest Regards.

    Trevor 

  • Hi Grub , welcome to the club that nobody wants to be in,  we will do our best to support and answer any questions you may have. I am currently on BCG and have 2 years left. If you click on my profile I have detailed my experience for reference as it is  easy to forget the details . Hope it helps , others have had varying experiences and degrees of success and side effects. So far I am doing well. Keep in touch, you are among friends

    Much love Angela x

  • Welcome Grub,

    I can't really offer any advice as I have just started my induction course of Oncotice (BCG)  immunotherapy. The induction treatment is once a week for 6 weeks and I've just had treatment number 3. No side effects for me so far. I can vouch for this group, they've been very helpful to me on my journey, hope all goes well for your husband,

    Anne

  • Hi Grub. 
    I have had 15 BCG treatments. (The amount you receive seems to differ in different parts of the country!!). To answer your questions from my own experience. 1. I wouldn’t attempt to work on the day of the treatment. As others have mentioned there is a two hour period of trying to hold onto the chemicals and then an urge to go to the loo for the rest of the day as you drink loads of water. And as already mentioned  there is a hygiene issue - the loo needs to be disinfected after each visit and you are advised to wash your parts thoroughly after each visit for 6 hours after after the treatment.  Could be tricky at work.

    2. My treatment was weekly for six weeks. Then a break. Then over a period of about 9 months I had 3 maintenance courses. These are three treatments over a three week period. 

    3. I have not heard of being vulnerable near other people. However I was counted as being vulnerable for my covid jab. 

    This treatment works!! The one proviso I would add is everyone is different and reacts differently to treatment. 

    I am (for the time being) cancer free. 

    Good luck to you and your husband. 

    Phil

  • Thankyou for reply and I’m glad the treatment is working well for you Relieved