The first 4 months part 1

16 years 8 months ago #6485 by Yosarian
Replied by Yosarian on topic The first 4 months part 1


Hiya Rosemary,
Thanks again for all the info. Please know I will be thinking of you on July 11th and sending the most positive thoughts possible for you to have a clean bill of health! I’ve seen (read) how many people you have responded to and just hope that good things happen to good people, because if they do..then 7/11 will be a breeze for you! Please let us all know your results and experience, all to the positive I pray!

Your most appreciative pal,
Yosarian
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16 years 8 months ago #6442 by Rosemary
Replied by Rosemary on topic The first 4 months part 1
Yosarian,

(Does this sound like an echo?)

You held the BCG for 5 hours!!

Well, it's good to know that we don't have to worry about side effects being an indicator or non-indicator. To be honest, I didn't really see how it could be. I really felt like my nurse was telling me that so I wouldn't be scared if I saw tissue or blood in the toilet.
And, like I said, you may see an increase in side effects (I believe you have already in not being able to retain urine for as long of a period as 5 hours ) by about the 9th treatment. Some people see side effects, and some say it's a breeze all the way through rounds and rounds of treatment. :o

Your time frame of side effects (increased urgency, burning, aching) sounds very normal to me.

I may have told you this, but, I finished my 12th treatment in May and go for a scope on July 11th. I have not had any recurrance since my original diagnosis in January 2006.

Anyway, it's going to be very interesting to hear how things go in New York. Thanks very much for keeping us posted. We all seem to learn from each other.

Your bud,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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16 years 8 months ago #6441 by Yosarian
Replied by Yosarian on topic The first 4 months part 1
Hi Klau1973, & Patricia, & Rosemary, & Wendy & Rosie, & Zach et al!

Howdy Y’all from Hot, Sunny and Humid but Dry Florida,

A Mini Celebration, I completed the last of my first 6 BCG treatments today here in Florida AND I got a call Dr. H’s office in NYC setting up the follow up examination, ...Scope, urine test etc. for Aug 13th. I asked the question I was fairly sure I knew the answer to ( Q...How long should I plan to stay in NYC?) Answer ...It depends on what Dr. H saw and the test’s reveal. Oh well ,,,it’s just NYC lodging is somewhat expensive as well as plane fare... but worth it--besides I can probably stay with my son again....oh well....

Anyway, I did ask Sue from Dr. H’s office if you could draw any conclusions from the presence /absence and degree of side effects with BCG and she replied that you can’t. I.e, some of their patience have had many side effects and it didn’t work (if by working you mean preventing any reoccurrence at all) to patience who have had few or no side effects having it “work”. Once again the definition of “did it work?” it seems depends on the reference point of preventing them all to preventing any?

Anyway, I have had few side effects, but these minor effects have been somewhat progressive/cumulative if still not severe. Mainly very gradually increasing urgency and burning and some tiredness. I finished my last BCG today at 9:55 AM and now at 4:37 PM I’m fine, just a little remaining burning in my urethra and some small amounts of blood and some very minor aching & stiffness...but no fever etc.

As to the question about “How long to hold the BCG?” Here is my experience /understanding. After leaving after the first BCG I remember being told (besides the rolling over every 15 minutes and lying on each side (back, left, right, stomach for15 minutes and if possible with legs elevated for a few minutes?) I was told to keep it in for AT LEAST two hours. This first time the 2 hours was a piece of cake and I wondered what the optimum time was. So I called my Florida Dr.s office (where I am having the BCG) and asked and was told by the office/nursing? staff ...THE LONGER THE BETTER. So I held it about 5 hours. The next time I could only about 3 hours and the amount of time I could hold it has been decreasing with each subsequent treatment since. (Today I had to run to the loo at 2 hours and3 minutes!)

Anyway, when I finally saw Dr. S. and he asked about side effects and I told him about the decreasing time I could hold the BCG from 5 hours to under 4 to...He said “FIVE HOURS!” THAT’S WAY MORE THAN NEEDED... 3 Hours max should be sufficient.

Anda oneah mo liddle ting.....I can’t say with 100% certainty about Dr. H and the “Bud Light” opps I mean Blue light....as I didn’t ask directly (as I had no idea what it was or if it was necessary) I can just relate what I said before..

.”I am pretty sure Dr. H uses a “Blue Light” as this was one of the few times he seemed jovial..This occurred as he was scoping me on the first office visit and I was watching on a TV monitor and he said “See you can’t see it but,,,bingo see all that necrotic? Tissue (or something like that) when I turn on the Blue light!” It seemed he had a kewl new toy!”

Hope this helps a little to anyone out there as the folks who replied to me have been wonderful...my humble thanks.

Yosarian

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16 years 8 months ago #6428 by wendy
Replied by wendy on topic The first 4 months part 1
Hi,

That sounds frustrating! But I'm glad that more and more folks are aksing for the blue light, it shows just how successful patient networking can be when there are options that we want access to. Good for you. Don't be intimidated either...and yes, CIS can be invisible until the blue light shines on it. Not all experts agree it matters, obviously (Because with CIS, BCG will always be used and that will get it anyway with less invasive TURs, is the current rationale). But patients are eager at the thought of something giving a more complete resection the first time around.

The newest AUA guidelines have adapted the EUA's standard of re-resection for T1 tumors in case of high grade cancer being found. This supposedly gives better long term survival. The last conference I attended the experts here stated that blue light/Hexvix can avoid the need for a second re-section, and that sounds like a good thing.

There are some good articles on webcafe about Hexvix-blue light, staging, CIS and more under the 'newly diagnosed section of the main site if you need more info.

Wendy
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16 years 8 months ago #6427 by klau1973
Replied by klau1973 on topic The first 4 months part 1
Hi all. Been a while since I lst posted...
Just to chime in on the blue light issue at Sloan. My mom's doc didn't use it on her back in March and when I asked her second doc there about it, she said there is no evidence that it is better. I then said that I read that it is helpful to see CIS that may be under healthy tissue (I thought I read that in one of Wendy's postings), to which she told me that CIS in on the surface by nature and then proceeded to tell me (in a very patronizing way) that my limited knowledge is causing problems (ie. my asking questions I suppose!). So I am wondering if Herr is the only one using it or if there's been some very recent change. Guess we'll find out on July 12th when my mom goes for her first follow up poke & peek. Please keep her in your prayers if you are so inclined.

Oh, and one quick question for Yosarian -- you said you often held the BCG for longer than two hours? My moms doc at Sloan insisted that she hold it for 2 hours at most. They also gave us a pamphlet at Sloan that said the same -- did Herr recommend holding it that long or your local uro -- just curious in case my mom decides to do maintainence.

Kim
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16 years 8 months ago #6350 by Rosie
Replied by Rosie on topic The first 4 months part 1
Yosarian and Rosemary, I had no trouble or side effects from the BCG treatments maybe that is the reason it was not effective in preventing my recurrences or maybe it is because it was not effective for my low grade papillary or maybe it was because I was taking maitake d fraction. LOL I had run across a trial study of that showed taking the maitake d fraction which is a "beta-D-glucans, and the means by which they modulate the immune system and potentially exert tumor-inhibitory effects. " It is also called a polysaccharide." warded off adverse side effects of BCG. I still don't know if that worked as a placibo or actually did as it was intended. Bottom line BCG did not give me any trouble but neither did it prevent recurrences. I do think it advisable to take a multi-vitamin as it certainly can't hurt and could possibly help. I have seen information on various sites stating Folate or Folic acid deficiency may play a part in bladder cancer. Also seen advice on one of the bladder cancer sites to take probiotic. Those are the two recommendations I have run across regularly as far as vitamins/minerals etc are concern. I take both.
Rosie Ambs

Rosie Ambs
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