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BCG treatments- Any tips for easing discomfort?
So my husband has been getting his BCG treatments each Tuesday now. He just had his third on Tuesday and as I thought I read here somewhere the effects seem to be cumulative. He has been pretty miserable with spasms , aching in the bladder this week. Do those of you who have been through this have any tips? I had him put one heating pad behind him and one in front and that seemed to help. He has also taken pain meds from post surgery. He isn’t one to call and ask the Dr. but tries to tough things out.
And do the side effects get worse each week for most people and how long after the 6th did it take to feel better again? He gets very discouraged but I have tried to look at it as the BCG is doing what it is supposed to be doing but that is unfortunately increasingly uncomfortable and that will pass with time. Am I just totally off with that ? I do realize of course that I am not the one feeling these things and that is a whole different ball game than from the outside looking in… Thanks-
Bambi -
20 Replies
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Well, I hope someone else will chime in here….My understanding is that for low-grade, first occurrence, papillary tumors, BCG is not always very effective and is not always given. So not sure about the dose/timing.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Bambi,
It is hopeful that the pain, etc. associated with the BCG means that it is doing its work. Has your husband talked to the doctor about reducing the strength of the BCG? I think Sara Ann mentioned going to 1/3 strength. Is your husband feeling any better?
Anita (Doug’s wife)
Anita
Forum Moderator
Caregiver
Sara,
Generally when the tumors are removed, and they are low-grade non-invasive. Are there usually more than 6 treatments with BCG?
dgarlick
dgarlick
Sorry that you have “communication problems” with your uro.
If it continues, you might need to consider a change?go to
http://www.bcgoncology.com/drlamm/
for some very good information on BCG treatment options. Dr. Lamm has done a LOT of highly regarded research in the area and is considered a reputable expert in the field.As many of us have learned, it is absolutely necessary to become an
expert of sorts so that you are able to participate in decision-making in your treatment. If your doctor doesn’t encourage this partnership, …….Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
thanks for the idea of reducing dosage — i have no idea what i was given and had no idea there were dosage options. hmmm … then again, my doc isn’t much of a talker and has the bedside manner of attila the hun.
My sincere sympathy!! (been there, done that)
What dose of BCG are you on? As we progressed through the
series, my uro reduced the dose down to 1/3 the original, which
made it much more manageable. Dr. Lamm, whose protocol many of our doctors are following, says that it is possible to go down to 1/10 the “ususal” dose. My uro says that the only reason for the “usual” initial dose is that this is how it was originally packaged and distributed by the manufacturer….how is that for science!!?
Anyway, you might discuss a reduction in dose with your doctor.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Just finished BCG no. 15 (6, 3, 6) since diagnosis, 20 months ago, and MAN! the urgency, frequency and pain were bad in this last series, although the bleeding and clot production were less. For the first nine I actually went to work the same day — impossible now. In fact, nos. 1-5 of this last series were the worst; no. 6 was slightly better: evil side effects lasting 4-5 days (just in time for the next BCG!) For several days I go from feeling normal to don’t-think-I-can-make-it-to-the-bathroom in about two seconds — with no warning at all, even with taking Toviaz. Even a day after BCG, I’ve barely been able to manage at work. They’re going in for another look-see at the end of the month and I’m really DREADING what they’re going to advise.
So funny that you answered my questions today, was worried about the side effects and how it will effect my job. Am experiencing difficulties on that front right now. Very emotional and not remembering simple instructions. Any suggestions concerning the emotional factor?
dgarlick
Fridays is a good idea. I went with early in the AM and I would basically be OK the next day after the usual side effects that everyone else talked about. On the 7-12 installations (my URO did 6 on, 6 off and 6 on weekly) the second day cumulative effect that was the worse was once I had the urge to pee I had maybe a minute or two to find a restroom. By the 3rd day i was close to normal.
The urgency side effect probably hit everyone so be ready for that. I put it into perspective that this is a lot better than Chemo! I was pretty much back to normal after a week on #12. Fatigue was my biggest complaint after urgency. Everyone’s body reacts different!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Doug,
Thank you for your speedy responses and your advice!!
dgarlick
dgarlick
Most of the time, there are more BCG treatments after the initial 6.
Anita
Forum Moderator
Caregiver
Doug,
Will do that tomorrow, still home recuperating from the TUR…back to work Monday!!
Thank you!
dgarlick
Doug,
Do you know if and when the series of six BCG treatments are done and all goes well, is that the end of the BCG’s?
dgarlick
dgarlick
Since you haven’t started your BCG yet, why don’t you give them a call and ask if it would be possible to have the BCG on Fridays?
Doug
Anita
Forum Moderator
Caregiver
Doug,
Wish the Urology staff, advised me better, before they made all these appointments (all 6) …. mostly mid-week…ughhh
Thanks for the advise!!
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