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Ok I have a few observation regarding my new and limited experience with the BCG treatment. My observations are around me trying to observe after treatment protocols. First off I get home and do my twists and turns and all is well. Now for the fun part. They say to urinate sitting down so as not to splash, fine, and then to clean yourself, put bleach in the toilet for 15 minutes. Now drink lots of water, sounds simple enough, what they don’t tell you is that you will need to go to the bathroom again before the 15 minutes are up, now what to do, do you flush first or pee into the bleach? Ok so I flush first, now you clean yourself, Ideally you would like to use warm water but it takes a few minutes for the water to get warm. Now you drink more water and you need to pee again but you haven’t gotten around to putting the bleach in the toilet again so do you put in the bleach before or after you pee again? Then you wash your self and again are waiting for that damn warm water. Now you venture to the other side of the house to get more drinking water and then the urge hits and you are running to the bathroom again, this goes on for about 2 hours then you say to hell with the bleach, the water is still not warm and you switch from water to beer, and just stay on the toilet until bed time. They don’t tell you about that in the little leaflet now do they. Have a great day Ted.
Thankyou Edwin – I totally laughed. Thankyou you really made my morning!
I’m female so am used to sitting down- I just got my BCG yesterday – the first of the three weeks – ( the second session after I had the 6 weeks in Jan/ Feb.)
The nurse told me no longer need to flip around in bed every 15 minutes as there’s new information out there ( I haven’t looked) after getting the BCG administered but can just get up and walk. I choose to flip as that’s what I did last 6 weeks and I got a clear scope. She also told me to hold it in for one hour not two and that they don’t do the bleach thing but to definitely flush twice after peeing.
I did drink gallons of water as I had an emergency infection situation back in January and so they said drink lots ( of water – haha-) helps.
I had a rough night last night getting up every few minutes to pee and I felt hot as in feverish, headache and fatigue and just not a best feeling.
I felt I could use some support to hang in there and stay positive and went straight to this forum and clicked on yours! Nothing like a good laugh! Good lord.
Cheers- Tana
Good Morning Edwin:
Like Tana I got a good laugh from reading your post but I know it would not have been funny at the time. I did 21 BCG treatments over 3 years and was lucky that I didn’t experience the urgency that you did. Based on what I’ve read from fellow patients I’m starting to wonder if guys have more of an issue with urgency and continence with BCG treatments.
Like Tana, I did do the lay down for 2 hours and did a turn over every 15 minutes. Back in 2008-2012 when I was doing my treatments that was what we were told to do. I even included a downward dog pose in the second go round because I had a minor recurrence in 2010 of a small single tumour that was located on the top of my bladder. I never did ask my doctor but I was wondering if it was because I didn’t get enough BCG to that part of my bladder. Anyhow, the downward dog added some “fun” to the journey.
For any “razor blade” feeling while peeing I’ve always suggested to people to pour cool water over themselves while going. It seems to help. This also cleans the area as you go. That and drinking lots and lots of water. I also found staying off caffeine while doing treatments helped as well.
I hope future treatments are a little less eventful. Best Wishes. ((((HUGS))))
Tana:
Monitor your fever. It should remain low and clear up within 24-48 hours. If it spikes really high get checked out. It may mean an infection. Best Wishes. ((((HUGS))))
WOW Edwin, you’re going through exactly what I’ve been going through recently. I just received my 3rd of 6 of BCG with Interferon on Tuesday and I have been running into the same issue, having to go before the 15 minutes is up from the initial pee with bleach in the toilet of the BCG/Interferon… What to do? Waht to do ….What to do? I’ve been having such severe spasms and cramping that at one point I was totally drained of any liquid in my bladder but I felt like I still had to go, so I simply just sat on the throan until the urges finally passed.. This past week I also hit another first, for me that is… I was not able to hold the liquid in for the whole 2 hours, at 1 hour and 50 minutes I had to go so bad.. Now I have read similar things posted by Tana, that rolling isn;t that important nor is keeping it in for the 2 hours.. I’ll do what I can until told otherwise, all I have to say is BCG with Interferon is so different from just BCG alone, I’m always tired, so .. so tired… I’m hopeful my energy comes back when the treatments are done, 1/2 way there for this series… Good luck to everyone here, BC is no fun for sure…. But this treatment is much better than the alternative for sure…
Mike
Hi lefmike:
Sorry to learn that you’ve had a rough go with treatments this time around. I too, found that the side effects increased with the number of treatments. I had a lot of fatigue and didn’t even have the added “bonus” of Interferon. I did find that it took several months for the fatigue to really wear off. At first there were more tired days than non tired days and then gradually the tired days got fewer and fewer. I also found that after several months I would inexplicably have a “tired” day. I found just listening to my body and giving myself permission to take an extra nap if needed on those days went a long way to helping me feel better. I stopped feeling guilty about it. Work and housework had to wait sometimes.
We are such a driven go go society that we hate to slow down but in this instance we need to because our body needs to heal itself. If we force ourselves to do more than we are able I personally believe that we slow the healing process down. During this time, I used it as an excuse to also read a lot more and binge watch some favourite shows on Netflix. I hope that you feel better soon. ((((HUGS))))
I just finished my very last set of BCG treatments. Hooray!!! First set of 6 were a breeze. Also I had no trouble with the next set of 3 treatments. Then I started having more pain with urinating and nausea with the next sets. I went on ondansetron because one evening I threw up 12 times. Now with this medication, I have no trouble with that. I still have a lot of pain with urinating for days and weeks after. With this last round of treatments, I have gone off coffee and I am now drinking more water for days after. The extra water makes me pee a lot but less pain. Today is day 2 after my last treatment and was experiencing more pain today. I remembered I hadn’t had too much water today, started drinking more water this evening and found out that this sure reduces the pain. Much better tonight.
Hello friends,
I had BCG yesterday afternoon – urinated every 5 minutes for two hours – today I’m a rag – so looking forward to the next two Fridays. Somebody on this forum described so well the “fatigue rest does not help”.
hang in,
Peter
I will be starting my second round of BCG this year. My first was in February through March. Am I impressed, no! My last TURBT was in September and have been in pain and on medication since then. My body keeps telling me it has an infection but it doesn’t. Antibiotics and pain meds help but I need to find out why. I simply cannot just keep taking the pills. Does anyone have a bright idea?
Judy
Hi Judy. I wish I did. I was in pain from my June treatments til about a week ago. With finding out I had a bladder infection just about 2 weeks ago, and on a strong pill to get rid of that, I finally feel better. I still believe drinking quite a lot of water sure helps. No coffee! I wish and pray your pain will cease or lessen soon. All the very best to you!
Thanks Audrey, my doctor prescribed Lyrica to deal with the pain. It makes me feel drugged but it seems to be working, fingers crossed!
Judy
Hi,
Im newly diagnosed with low grade BC, have quick question on BCG, is BCG treatment needs a full day off from office? Will need another day or more few days to recover? If yes in general one treatment needs how many days off from work?
Does work provide or support these off times under short term disability leave?
Any thoughts and experience will be appreciated.
Thanks
Hi Ray
I have had two sets of BCG treatments. In my hospital the treatments I had my treatments on Fridays. I felt that I would therefore be able to just take Friday off work. Initially that worked. As time progressed I found that I was not able to work until Tuesday. Therefore, first, you cannot go to work on the day of your treatment. Depending on you day of treatment will depend on the day of treatment. Bottom line for me is that it took four days to get over the BCG treatments. My second set this past October and November were worse. I did not work at all.
Obviously each person is different, but in my opinion certainly you will not be able to work on the day of treatment.
Hi Ray- sorry to hear you are diagnosed with B.C. I’m Hi grade Ta. Diagnosed Sept. 2019. I’ve been very healthy and a physical player all my life.
My first 6 sessions of the BCG didn’t go well ( in January 20 20 ) as the second one I ended up in emerg ( not to scare you or anything) – it had to do with a inexperienced casual nurse pulling the same catheter in and out several times and I got a wicked ( the emerg doctors words) infection almost went into my blood she said which put me up for a week and a half.
The rest of the treatments I found I would get extremely fatigued- just a worn out feeling for at least 3 days immediately after when it all went well. There’s no way I would work the next day.
The next 4 of those 6 were great – easy peasy in and out – . Just fatigue after. The next three ; three months later were good and then the next three after Six months I got quite sick overnight on the first but ok on the next two. Really cautious- I drink lots of water and take Mary Sues suggestion to drink cranberry juice ( the pure no sugar ) two days before and three days after BCG’s. And actually I have to say I am feeling quite wonderful now. ( I got three to end of December) though I did take it easy for two weeks to be sure. That’s my experience so far- If all continues to go well I have 2 years of BCG to complete. In Hope it goes well.
Bcg seems to be unique effects to each individual from what I read on this forum.
Mind over matter is what I do subscribe but as I’ve discovered through all of this is that I need to honour what my body is telling me and for me it’s to go slow. I decided to stop working. Check into your disability at work to see what they can help you with. I ended up on Medical EI as I had no benefits.( I’m in Vancouver).
I wish you all the best Ray.
Tana
Thanks Study
That is very helpful info.
hope offices allow short term disability leaves for these treatments, any idea anyone have on this?
My report states as follow and Im 42yr old:
Low grade papillary urothelial carcinoma
Specimen consist of 2 pieces of tissues each measuring 0.1. cm.
Is this type of cancer recurrence is possible and only TRUB wont help and one may have to go BCG route?
Im really scared, any advise will be helpful
Thanks
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