Burning with BCG

[Hbull]

I have high- grade bladder cancer for about 3 yers and Waldenstrom ( a rare form of Non-hogkins Lymphoma) for 18 years. The Waldenstrom is under control. from immunotherapy and chemo last year.

After having cysto surgery to remove a bladder tumor last year, I started BCG. Had the initial 6 treatments. 5 were okay, but the 6th caused 3 months of burning. We then waited a month and started maintenance-1/6 of the dosage 3 times. I made it to the second and have been miserable with burning for about 6 weeks.
I take Oxybutin and Aleve. They work sometimes. I cannot take stronger meds like Oxycodone, etc. as they make me throw-up and Peridium doesn’t work at all.

My doctor in Victoria wants to give me chemo in my bladder and I said no. I have switched to a great doctor in Seattle who says no more treatment, as my bladder is a mess. He suggests waiting, doing cystos every 3 months and removing the bladder if the cancer comes back.

Any suggestions for stopping the burning? And, does anyone else have this problem?

Thanks so much, Harriet

[Jack Moon]

Hi Harriet

Sorry about your constant problem with burning due to BCG treatments. I had 30 BCG treatments and have been cancer free 10 years, but never had any longer than 48 hours with burning after a treatment.
You might consider seeing Dr. Peter Black in Vancouver who is one of Canada’s top bladder cancer specialist.
I wish you all the best going forward and wish I could be more help with your problem.
Jack

[Hbull]

Thanks so much for your reply, Jack. It’s wonderful to hear of your results. Let’s hope it all goes well for a long time. I will look into the urologist in Vancouver. Although, it’s just as easy to go to Seattle. I have insurance in both countries. Take care, Harriet

[marysue]

Hi Harriet:

A question – Is the burning when you go pee or in your bladder post treatment? Some people have either and some have both. I’m assuming from your post that your bladder is really inflamed from the treatments?

I had a bit of burning in my bladder during treatment and definitely burning when I passed urine for a couple of days post. For me, drinking a ton of water, chamomile and peppermint teas helped. I also found avoiding drink and food containing caffeine helped.

I have heard that some people follow an anti-inflammation diet when doing BCG if they have had issues. I didn’t need to go this route but there is a helpful book out there called “Meals That Heal Inflammation” by Julie Daniluk, R.H.N. It might be worth a look. Hope these suggestions help. Take care. (((((HUGS))))

[Hbull]

Thanks for your reply. I had burning after my first pee post BCG. I have been constant burning ever since that time about 8 weeks ago. This was 1/6 dosage and my second treatment. It is much better, but feels like it is in the uretha area. I will get that book. Appreciate your concern. Harriet

[KIOWA]

I had BCG back in 2008. It was one of the worst experiences ever, for me. It works well for many but not for me. The burning and flu symptoms were really bad. My doc said no more BCG. he tried Valstar and that worked well thankfully. I’d. Rather have my bladder removed than use BCG again. I would agree with your doc in Seattle

[marysue]

Hi Harriet:

I’m a little behind with my replies on this site. I remember when I was doing BCG I experienced a lot of pain in the urethra area and after a while between the nurse and myself we figured out that I was inflamed in that area from the BCG as well as the bladder. I also think my urethra was just battered and bruised from all the intrusions.

Being female, I think we also experience more inflammation in that area than the guys because of the structure of our anatomy. I found that I had to pour a cupful of cool water over myself as I was voiding the BCG. Kind of kinky sounding, I know but it helped. I also used Lanacaine cream and Canesten in that area as well. The Lanacaine helped with the discomfort and I used the Canasten because I had issues with yeast infections when doing treatments.

I hope by now that you are feeling better. ((((HUGS))))

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