Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

BCG #2 done, and I'm miserable.

SilverGrizzly
0 Recommendations

Just need to vent a little...

I just finished BCG #2 (first round!) on Tuesday, and have been miserable ever since. Symptoms are twice as intense as after the first dose, and lasting twice as long. I don't see how I'm going to get through this if the side effects keep increasing every week, like they said they probably would.

Yesterday afternoon I thought I was on the mend, but no, I at dinner time I moved into a new phase--miserable pain every time I used any of my back muscles, from my neck to my hips.

I'm sure glad that BCG=Bladder Cancer Gone because otherwise I'd throw in the towel. I am a wimp... -Jan

Explore topics in this discussion:

Cancer Tylenol Pain Chronic pain Back pain Depression Fever

15 replies

balihigh

I read that the more side effects you have, the better it is working. Makes you feel better? LOL

I did not have any bad side effects and my tumors DID come back so there maybe something to it.

I truly hope that you will be feeling better today.
Hugs,
Nancy

SilverGrizzly

Nancy,
Thanks so much for your encouragement and your Hug! and you DID make me laugh! :-) -Jan

Shiz

Hi Jan,

I haven't experienced the back thing you describe but for the spasms do you have Urelle or something similar? Also I found that a heating pad placed over the pelvic area helps. I consider myself a wimp also in dealing with pain so I took tylenol 3 with codiene.

My next round of BCG i'm going to push for a pain management plan.

SilverGrizzly

Shiz,
A pain management plan. That sounds like an excellent idea. I wonder why they didn't address these issues right at the start so I could be prepared with a pain management plan in case I needed it. Thank you for this idea. I'm going to ask them about this when I go in for Number 3. I can feel a new discussion post coming on about this issue... Thanks again so much! -Jan

jj803

Hi Jan,

I am so sorry that you are experiencing unpleasant side effects of BCG. As someone who never had the joy of BCG treatments, I can only empathize. I know many members have had different regimens for dealing with the side effects and hope that they will soon chime in with their experience.

JJ

megstain

I have had 16 treatments. My pain has gone from low grade to high grade. At the present time, I had my last treatment 8days ago and I am fighting a severe bladder infection. Currently on antibiotic, feel tired, listless, back pain, and with all this I am depressed.

On the bright side, the cysto 2 weeks ago showed no evidence of cancer just a red and inflammed bladder. My BCG treatments are every 6 weeks.

Hang in there. There is no "correct" way to get through this. I take extra strength Tylenol and a antispomadic for the bladder spams. Some time I do that a pain pill. Good luck...Megstain

Moonerj

Hi Jan
Sorry you are having such side effects so early with the BCG treatments.
I recommend you speak to your Uro before your next treatment and explain to him/her the side effects.
There are meds available to help with some of the side effects.
Insure you are tested for an infection prior to every treatment. This takes all of 2 minutes.
The back pain is new to me, never encountered that side effect during my 30 treatments.
You are not a wimp, I know what you are feeling.
Continue to ask questions and stay proactive.
Maybe, just maybe your body can not handle BCG, you would not be the first. There are other proven treatments available.
Keep us posted.
Jack

YvonneM

Hang in there!!!
Yvonne

Annasvenska

I have never experienced BCG however I hope that you can get some help with them. I am glad that you are venting and getting it all out.
I am not very patient with pain myself and so expressive that when I went into the ER with my bowel obstruction pain in september at our local little hospital they refused to give me any pain meds until "I gave them a mandatory urine sample". At first I refused because I hjad so much stomach pain that it was difficult to use my abdominals to empty my bladder but when I realized I wouldn't get any pain meds I relented. Only later when I recieved my all my test results was that they thought I was some drugaddict whom was in some kind of "withdrawal" and wanted to check my system for drugs before they would give me anything. I was offended when I later found out but my dear husband told me that I indeed could very easily have been mistaken for a person with withdrawal symtoms because of how loud and expressive i was. I am still a bit offended that Anybody could ever think that of me but thats another story.
I was in pain and it was actually similar in intensity to labor pain somehow it actually released some tension to"scream it out" not ladylike but that wasn't my intention.

Anna

nancynursez637

I don;t know about pain management with BCG, They could possibly instill some novacaine with the BCG but it would be short lived, wearing off with the first voiding. I wonder about other substances used in the past, such as pyridium, and the antispasmodics.

one other way might be to increase the body's own pain mechanism with an SSRI drug, Cymbalta is probably one of the best for pain management. It boosts circulating endorphins which can cool off pain. It is also used for depression but don't let htat bother you, it can help a lot with chronic pain.

So if i were designing one, i would use some cymbalta, some novacaine at the time of instillation, some antispasmodic, encourage lots of fluid intake to keep urine dilute.

NOW THE DISCLAIMER............I AM NOT A DOC, BUT THIS MIGHT BE SOMETHING TO DISCUSS WITH YOUR DOC AS A POSSIBILITY,

For instance i do not know if you can administer BCG and novacaine together it is just thoughts taht come to my mind

Nancy

mala-moo

Hi Jan

I had my 7th BCG treatment last week. The first of a follow up series of 3 . For the first time I also had back pain. It was the entire length of my spine and into my hips and shoulders. However it didn't last very long and I feel I can manage the pain. I didn't take any pain killers.I was completely fine a couple of days later. I just went in for my next BGC today and when i told them about my side effects, they decided not to continue my BCG treatment. I am not too happy about this as I feel I can manage the pain, it didn't last long and i didn't have a fever. what have your docs said?

mala

mmc

I failed BCG due to severe reactions but the worst being high fever and chills.

I'm not sure what your dose strength is, but you may want to discuss that with your uro. You can go down to around 10% strength with no evidence of decreased efficacy. See Dr. Lamm's website about BCG.

I asked him once why they don't start with lower doses so fewer people wouldn't fail and he said it all came down to research money. In any case, he is even recommending lower doses. With reduced dose, you should have less side effects.

Sorry you are having problems but I hope they can get the dose right for you to stay on it. For CIS, it is GREAT if you can tolerate it.

Mike

SilverGrizzly

So they wouldn't continue the BCG for you even at a reduced dose I guess? What was your diagnosis. And I wonder what they are using for you now? -Jan

mmc

Went to 50% but wouldn't reduce beyond that. Then went on mitomycin instillations. Not on anything now as I later had a recurrence and had an RC in Oct 08.

Mike

SilverGrizzly

thanks for your wisdom on the possibility of reducing the dosage. I need to find out more about that before I talk with my uro next. I'll check out Lamm's website. -Jan

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

Newly diagnosed
Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

Clinical trials
Get information about clinical trials and BCAN's Clinical Trials Matching Service which is offered at no charge.

Women and bladder cancer
Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
Presentations and slides from BCAN's most recent Patient Forum in Cleveland. Those diagnosed with non-muscle-invasive bladder cancer will be most interested in Dr. Jones' and Dr Pohar's presentations. People diagnosed with muscle-invasive bladder cancer will be most interested in Dr. Gong and Dr. Gilligan's presentations. Dr. Campbell talks about improving outcomes in bladder cancer patients, and Dr. Hansel talks about the importance of pathology in diagnosing, staging, and deciding on treatment for each patient.

Group leaders

You