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Will have my fourth instillation of BCG tomorrow at 11 am. Question-

2 years 5 months ago #53241 by Jack R
Donna,

BCG is clearly more of an art than a science. I have found it valuable to have a basis upon which to judge the answers I receive from my care team.

Dr. Michael O'Donnell is one of my highly valued resources (along with Dr. Donald Lamm who presents long term study outcomes). O'Donnell explains away some of mystery surrounding the "protocol" of BCG administration. His list of FAQs begins on page 13 of the following LONG, and detailed, article.

O'Donnell on BCG

http://thomaschallenger.com/wp-content/uploads/2011/10/Mike-ODonnell-Protocol-long.pdf

I also find the following two "consensus documents" a good foundation for the current understanding of treatments for NMIBC. I prefer the Canadian Urology version (second document below) as it more clearly presents the items of debate among the peer group.

http://www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771569/

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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2 years 5 months ago #53240 by sara.anne
Donna, both Jack and Alan have offered some good advice. You need to remember that the entire story of BCG treatment for bladder cancer is highly "anecdotal." The dose used is what was already commercially available used for other purposes. It was used, and it worked. It was not determined "de novo" be clinical trials. Some people do not

respond at all. A reduced dose makes good sense before giving up. However, if the side effects are intolerable, it is time to quit. Yo ave shown a response...that may well be enough!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 5 months ago - 2 years 5 months ago #53237 by Alan
Donna,

From my perspective I would suspend the BCG. At the same time MANY have had 1/3 or 1/10 dosage work-with my apologies to Jack-which shows we are all individuals, so what do I know, not much! Still no one knows how many treatments are optimal plus 4 may be enough. If the bladder is ruined from aggravated cystitis, you have accomplished nothing. Whatever time is needed to calm your bladder then a scope may reveal a clean bladder, if not perhaps an alternative agent will work. On top of that perhaps a second opinion from your main MD Anderson location. I am just cringing as I simply feel pain should not be happening!

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.
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2 years 5 months ago #53236 by DonnaD
Dear Jack,
Thank you so much for your first-hand experience and also your further info on this matter.

I am a registered nurse and received my education in Massachusetts. I try also to research (to my husband's chagrin who keeps telling me to stop it). I found the very info you posted after I had posted my message on here.

I am intelligent and I ask questions when I go but I am not satisfied with the answers and so I keep asking and then I am labeled "annoying", but to heck with that - it's my life, right?

I am satisfied with your response to me as not only is it first-hand experience but it is also excellent research.

I am a nurse who will die for a patient, but for myself I cannot stand up very well.

I am going to make some "heads" fly at my next appt. I am tired of them having me wait over 50 minutes for my BCG when other patients are there for ED or cystitis, etc. If it were another cancer patient I wouldn't mind the wait at all, but hell, my days are probably more numbered than these other patients and my time is more precious too.

I don't know why I am venting so on this site, except that I have no one else to vent to. My husband just does not want to hear it. (I know he is frightened too.)

Thanks again, Jack.

Thank you all for putting up with me.

Donna

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2 years 5 months ago #53235 by Jack R
Donna,

In my reading, I look to articles and information from peer-reviewed journals, reputable organizations and major cancer center hospitals. Pay-to-publish sources are ignored.

In brief, from my reading, the DOSAGE of BCG can be reduced to 1/3, 1/30 or even 1/100 in necessary and still be effective. (Dr. Lamm) I have not seen this statement contradicted.

There is greater question about the REACTION of the patient to the use of lower dosage BCG. Some sources say the side effects are lessened, others find there is no reduction in side effects.

MY experience. Following a catastrophic accident 12 years ago, I have ongoing chronic pain. BCG (along with a whole range of other inputs) caused bladder spasms set off unbearable nerve pain for 24 to 72 hours. I rely on heavy duty pain meds to get me through each dose of BCG - the pain is not eliminated, but becomes tolerable, then fades away.

Reduced doses of 1/30 and 1/100 did not reduce the pain for me. Others I have spoken to have gained relief with the reduced dosage. I have elected to stick with the full dose of BCG, there being nothing for me to lose or gain.

I would (and did) consider it worthwhile to try a reduced dose of BCG if the doctor is supportive of the idea. It would be wonderful if the reduced dose is tolerable for you.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis
The following user(s) said Thank You: DonnaD

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2 years 5 months ago #53234 by DonnaD
I had the fourth BCG this past Thursday and have been zonked out on pain medication because for me the pain was so bad I could not take it without the medicine.

I know some of you have said I should request if my MD would give me half dose, but I've had other people tell me half dose is not effective so not to do that and just get through this.

So many wonderful people have so much to offer for suggestions and I am appreciative of that.

The pain I had was bladder (I know exactly where mine is located in my body now - LOL), ureters, uerethral tube, and part of the lower intestine. Thus, some of my GI was affected too such as normal bodily happenings like handling gas did not go well.

Someone else told me to be happy because all this meant that my body is really going at this and fighting it.

Well, now I have 2 more or 5 more. I will run this pain by the doctor though. If it is true that it is not as effective to get half the dose then I'll bear with the pain.

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