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BCG/Interferon Side Effects?

11 years 9 months ago #3885 by joanie
Wendy after reading many peoples stories on the board I think maybe my doctor was very aggresive with my treatments he felt my cancer was aggresive and always had consults with other doctors on my treatments. Maybe if I had them every 6 months rather than 3 my bladder would not be so scarred and thin.
Fallon

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11 years 9 months ago #3884 by joanie
You have managed to go a long time keeping your bladder with all you have gone through. Each specialist I see tell me how lucky I am to have made it 4 years. I thought I had IC before my cancer was found just kept treating me for UTI which if they ever grew a culture never grew anything.when the dip test showed infection now I always insist on growing a culture. I am sure with my bladder in the shape it is must have some IC there now. I have no choice but to have the bladder removed as I cant have anymore treatments and its the treatments that has kept the cancer inside the bladder.
You mention rescue treatments for your IC what is that not sure I know.

I have had something they call a cocktail to calm the bladder it was hepron and Markain helped a couple of times and the last time it burnt me so bad they had to give me a shot for the pain.
Hope you do fine with yor treatments I have never has 12 in a row just 6.
Fallon

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11 years 9 months ago #3879 by Moo

Hello Moo I have had CIS for the past four years have had 52 BCG treatments over the 4 years the first 6 just BCG the rest with Interferon. For me found it very much the same both made me very tired,lots of joint pains
Maybe it wont bother you too much think each person has different reactions.
I would like to ask you if the BCG damaged your bladder in anyway? I have reached the point where I cant have anymore BCG so will have the bladder removed March 6
Good luck with your treatments am sure the others will be along maybe have a little more input than me.
take care Fallon



I have developed interstitial cystitis from all of the stuff that they've done to me, but other than that, no damage. The IC has been a bit of a nightmare. The symptoms have been terrible, but rescue treatments do wonders for that.

I was treated for nearly 9 years in Sault Ste. Marie, Canada where I originate from. I have since moved to London Ontario and am now getting treatment from the #1 guy at the London Regional Health Sciences Center. He's excellent.

Only once has a cystectomy been mentioned and being that I'm only 42, I didn't really consider that an option to be honest. The dr. has not persisted on that one and with so many other options available these days, I'd much rather take treatment until such time that I no longer have a choice. Of course if it were a necessity, I would remove the bladder to save my life, but I've just not been that bad to be honest. Several years ago, before the first course of BCG, I had managed to grow 12 tumors in 3 months. All CIS. Since then I've never had more than 2 or 3. I have definitely resisted the BCG and was more successful with the Mitomycin although my mouth ended up burnt and full of ulcers and it was quite painful throughout.

I didn't realize that 12 years of this without cystectomy was not the norm. I'm still kicking and doing well, but I sure am dreading 12 treatments in a row in the next couple of weeks. Although the BCG wasn't too terrible, I was achey, sore and dog tired by the end of it all. I've never taken 12 back to back like this before, so I'm naturally worried about what kind of shape I'll be in at the end. Hopefully, the BCG/Interferon mix won't be any harder to tolerate than straight BCG.

Thanks for all of your replies. Your input really helps.
Michelle


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11 years 9 months ago #3876 by star
Moo it looks like we share the same process but since I am only a year into this and 5 surgeries and only 4 rounds of bcg --now with interferon we both have acommon thread.
I am glad to see that multi proceedures is common and I am not the only one getting scraped every 3 months. I was told side effects are the same as if you had just a Bcg- first day pain and some blood then just tired. We shall see.
If you 've been through all that and still have your bladder I am at ease now for knowing the body can take that much so hope for me is looking good-unless the clumps push further. Keep me updated on your treatments. Prayers to ya
Star

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11 years 9 months ago #3873 by wendy
Wow, you have certainly had your share of treatments. Fallon and Michelle, I've never met anyone who's had so many BCG treatments!

From my understanding the combination of BCG (which is low dose in this combo) and Interferon is supposedly easier to tolerate, or not much different. If a person reacts badly to BCG good chance they will have a similar response to the combo. If you're not overly sensitive to BCG the combo should be well tolerated.

I also don't think I've met anyone who's staved off CIS for 12 years without getting a cystectomy!

I wondered where you go for treatment?

Wishing you all the best,
Wendy

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11 years 9 months ago #3868 by joanie
Hello Moo I have had CIS for the past four years have had 52 BCG treatments over the 4 years the first 6 just BCG the rest with Interferon. For me found it very much the same both made me very tired,lots of joint pains
Maybe it wont bother you too much think each person has different reactions.
I would like to ask you if the BCG damaged your bladder in anyway? I have reached the point where I cant have anymore BCG so will have the bladder removed March 6
Good luck with your treatments am sure the others will be along maybe have a little more input than me.
take care Fallon

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