Very Few Side Effects Post BCG treatments

Hi Everyone,

My husband has just had his 4th BCG treatment. His first week he had no side effects. Second week, some burning with urination which resolved in a few hours. The third week, some burning and several bouts of diarrhea, all resolving by evening and the last all he had was diarrhea which resolved by evening. I was under the impression that he would have side effects that would worsen with each treatment. I am not looking a gift horse in the mouth but I know that when we give chemo at the hospital, it is often good to have side effects and that means that chemo is doing it's job. I know that BCG is not chemo, but his not having side effects worries me.

Any ideas?

Ellen

Report post

21 replies. Join the discussion

Ellen,

I had six weeks of BCG with the first three being no big deal. Weeks 4,5 & 6 were stiffness in the joints, a common side effect, maybe a slight fever on week 6.

Other than that no big deal. Two weeks after my last treatment I had a BX and NOTHING. Music to my ears. I am scheduled for my first follow up cystoscope on 11/11/08 and I am anxious as can be. I pray this comes out fine and I will likely get another round of BCG.

I want to be as agressive as can be on the defense. I am told that there is only a twenty percent chance of reoccurrance, but if it comes back I will be as aggressive on offense. I like my odds but won't take chances much beyond where I am. My BC was stage 1 and aggressive. I am lucky I caught it when we did.

I would be glad to talk to your husband, this site has helped me beyond belief.

Best wishes,
Battle on,
JerseyGuy

Report post

Hi Ellen

Not to worry. I have had 3 operations and 26 treatments of BCG.
The first 12 I had very little side effects.
Now I am sore in bladder, and sore when I urinate for 2-3 days after the treatment. In fact Doc gave me meds to help with the pain and any infections.
My Doc says the pain and burning just means the treatments are working.
I am now free of tumors for 12 months, thanks to the BCG treatments.

Report post

Ellen,

Glad things are going well, no side effects,thats great,,,hope he continues on this path,,,,ginger

Report post

I just found this site...I was diagnosed with super ficial bc this past September...It scared me even though I was told everything would be okay with BCG treatments...

I had a CT scan, which was clear, and then six BCG treatments...I'm in the waiting phase before the doctor takes another look in the bladder to see how I responded...He automatcially does three more treatments no matter what the results...He will do a biopsy in his office of whatever he sees in my bladder...

Anyone in here been down this road already? Did your BCG's work after the sixth one or did a biopsy show you needed more?

Thanks...I'm nervous and praying...I did have loose stools (still do this long after) and loss of appetite...Not sure what was nerves and what was BCG...

Thanks again...

Report post

Hi LeeAnn,

It sounds like you and my husband are at the same exact phase. His 6th treatment was last Friday 14th and we will have another cysto the first week in January. His 6 treatments were pretty unremarkable with respect to side effects. It was really nice not to have to go for the treatment today. We'll walk this road with you. Keep us posted.

EllenRN

Report post

Thank you EllenRN,

I did have loose stools and still have yet these four weeks after the 6th treatment...December 8th I go for my cystoscopy with biopsy...I pray all the time for God's peace in this matter...I call it the 'bladder matter.'...What a surprise to me...They weren't looking for it when they found it...I don't fit the profile at all...Thanks for walking this road with me...

LeeAnn

Report post

Hi LeeAnn,

Steve doesn't fit the profile at all either. Never smoked, never worked around chemicals. We were expecting a dx of prostate cancer, which we would have gladly preferred. Stunned by this one.

Dec. 8 is just around the corner. I know the waiting is hard but have a wonderful Thanksgiving holiday.

By the way, where do you live?

EllenRN

Report post

I had my 4th treatment of BCG last Wed. A little burning the first day but my biggest problem is tiredness especially the 1st and 2nd day day after treatment

Report post

Hi hbrog,

Thanks for your response. Steve just finished his 6th treatment last Friday (14th). He too has been tired and for two days felt like he had to urinate but mostly false alarms. We went out to dinner and he must have gotten up to go to the bathroom 8 times. I felt like I was having dinner alone. (joke). Anyway, it felt really good not to have to go for treatments yesterday. Let's keep in touch. You and my husband seem to be at the same place in your treatments. So is JerseyGuy, LeeAnn, and a few others. This way we can all wait together.

Thanks for responding.

EllenRN

Report post

EllenRN,

I livein Southern California...I was so startled when I heard my news I immediately went on the Internet to learn about it...I learned about Dr. Lamm in Phoenix...He's a pioneer in BCG and got it approved years ago by the FDA to use in bc...I've been seeing him for my BCG treatments...He will do the cysto and biopsy in his office as opposed to the hospital...

LeeAnn

Report post

Ellen,

Good to hear Steve is finished.

LeeAnn,

I have read alot about Dr. Lamm, seems like he is one of "The Guys". Yes lets stay in touch. I send my best to eveyone, this will be short as we have house guests this weekend.

Best wishes,
Battle on,
JerseyGuy

Report post

Hi everyone,

Okay, I should know better than to read too much on the internet...Now I'm kind of nervous...I was reading about people who opted for RC instead of BCG...I never even thought about anything except BCG...Have I been in a fog or denial? Surely my beloved Doctor would have told me about RC if he thought it necessary...

My diagnosis orignally was superficial, barely stage 1 but grade 2...I'll see him on December 8th as you all know for my first 'look see' after my 6 BCG's (finished 10/28...My bladder does hurt which I don't know if that's part of bc or just me...They were never looking for bc but interstitial cystitis...My original symptoms lead them to think I had IC...maybe I have both...

Any thoughts from anyone..

Thank you,
Lee Ann

Report post

Lee Ann,

You and I seem to be in the same boat. It took me a little longer to get to the BCG treatment and then a BX. My journey started March 17th, St Patty's Day. I had my first follow up cysto 11/11 and I will be scheduled for another round of BCG early next year (A ton of prevention) and a regular cysto schedule after that. I think everyone here will agree, the waiting game part of this whole thing is the worst part. I would say you are in good hands. Hang in there, you will make it.

I have been reading about Onocvite, a multi vitamin designed for BC patients going through BCG treatment. I believe Dr. Lamm pioneered that as well. What's the word on it? Anyone.

Lee Ann I know the frustration of waiting, excuse the french, it's a bitch. Hang in there. Keep your chin up and put on a good face, you can bitch and moan here to us, cry on our shoulders and seek advice. We are here to help.

Best wishes,
Battle on,
JerseyGuy

Report post

Jersey Guy,
I have heard that Onovite contains an extremely large amount of Vitamin C and can make people sick. Some people swear by it and do well. Just be aware that some do have side effects. I read a lot of alternative treatments and find them fascinating but use them along with the conventional stuff. I don't want to take anything that will hurt me but if it might, why not? The bottom line is that something caused this cancer and many alternative theories blame the immune system. Boosting the immune system can perhaps help prevent the return of cancer. BCG actually works on this theory too.
Take care,
Nancy

Report post

Sorry. It is large amounts of vitamin A that oncovite contains. I just looked it up. This can cause liver problems. I would say do more research before ordering.
Nancy

Report post

I've received 40 BCG treatments to date. I will continue to receive them for the foreseeable future. (And I mean up to 10 years or more) I've had 3 occurances of BC. I received no follow up treatment after the first two, but when it came back a 3rd time, my new urologist said it was time to start BCG. Side effects have either been very mild or I just am so happy that there is an effective treatment that I'm "willing" any side effect away.

I am also taking Oncovite. I just started a month ago but will have my blood montitored particularly for Vit. A toxcicity. I emailed Dr. Lamm to ask if I really should be taking 4 Oncovite a day since the bottle only calls for one. He wrote back and said that for BC patients 4 tablets was the prescribed dose, but again, blood work needs to be done regularly becuase of the mega dosse of Vit. A it contains. I checked with my internist and she kind of fudged her recommendation re the supplement. She suggested that maybe I should only take 2 or 3 a day. The thing is....she had never heard of Oncovite.

I think anyone with BC should Google Dr. Lamm and read thru his site. He has done more research on BC than pretty much anyone out there.

Report post

I was very ill for six months before I discovered I was suffering from Vitamin A poisoning from taking large amounts of Oncovite. It appears I suffered permanent liver damage. Be careful.

Report post

Hello Ellen,

I am another BC survivor that was diagnosed in Jan agt the age of 45. Since that time I have had 1 TURB, 4 cysto's, and 12 BCG treatments.

Please let your husband know the BCG treatments will become easier to tolerate during the Prevent Maint portion (he will probably have 3 treatments every 3 months).

The most important part thing is getting a 2nd and / or 3rd opinion and find a urologist that he trusts and educate yourself on this disease as much as possible.

I go back in Jan for another check up and feel confident that I will hit the 1 year mark of being cancer free.

I wish you, your husband, and family a wonderful holiday season and stay positive!

Leslie

Report post

Thanks everyone for the heads up on Oncovite. It definitely needs more research on my part. Just a short note of thanks.

Happy Thanksgiving to all.
Best wishes,
Battle on,
JerseyGuy

Report post

My understanding is that having side effects from chemotherapy is an urban legend. If there is data that supports the benefits of side effects I'd love to see it.
Thanks

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support BCAN

Help the Bladder Cancer Advocacy Network reach its goals and support people like yourself by making a donation today.

Donate to the Bladder Cancer Advocacy Network

Discussion topics

Walk for Bladder Cancer May 3rd

Walk for Bladder Cancer

Resources from BCAN

BCAN on Facebook

Like the Bladder Cancer Advocacy Network on Facebook

Community leaders