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What to Expect?

5 years 2 months ago #45384 by Cognizer
Hello Sara Anne.

Thank you for the info.

As I said, this is all new and seemingly out of nowhere. I just got the pathology report and recommendation yesterday. I started seeking info on BCG this morning and happened across your forum. I'll be sure to look around.

Again, thank you.

Cog

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5 years 2 months ago #45383 by Cognizer
Thank you for your reply George.

It's chemo, and I understand 'tired and run down' is relative, but I thought I'd seek info about experiences from patients rather than just from the docs.

I'm not even sure I can join the BCG club yet. I need to talk to the pulmonary folks too. I deal with the VA. My experience has been that they have to be pushed hard to take a wholistic approach. Getting 2 different clinics to talk and coordinate, within a reasonable timeframe, is a great feat in itself.

With my COPD as advanced as it is, invasive surgery is not a viable option.

In terms of chemo - I can't handle any more tired and run down. It's all I can do to get up and stay on my feet for a few minutes at a time now. At this point, the only thing that gets me out of the chair is a 90 lb. Rott-n-Lab named Lucy. Tending to her is what keeps me going. The 2 walks each day keep getting shorter but we both need them. I may gasp the entire time but I push myself and do it for her. The rest of her exercise now comes from chasing me on a golf cart.

I'm willing to try BCG but if it knocks me off my feet, it's not an option. This dog is my will and strength. When I reach the point I have to give her up because I can't properly care for her, I'm done.

Thanx for hearing me out.

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5 years 2 months ago #45380 by sara.anne
The whole point of BCG is to give your immune system a "kick in the pants" so that it revs up to fight the cancer cells. Having side effects tells you that this is exactly what is happening...it would not be good if there were no reaction!

Yes, fatigue is the most common side effect. The day of the treatment, and perhaps the day after, you may have bleeding and painful urination. As the treatments accumulate, so do the side effects. It is possible, if they become too uncomfortable, for the doctor to reduce the dose significantly with no loss of effect. By the time I completed my maintenance courses, I was down to 1/3 the original dose. A dose of 1/10 has been shown to be OK also.

Also remember that BCG is immunotherapy, not the common chemo that some cancer patients require. The side effects of BCG are NOWHERE NEAR what you might expect from traditional chemo.

There is LOTS of information on BCG in the material in the Forum. Just use the "search Forum" function at the top of this page and search for BCG...

Good luck to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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5 years 2 months ago #45375 by GKLINE
Hello Cog
Sorry to see you here. But you couldn't have found a better place to ask questions and sound off.
Tired and Run down is going to be your friend for a while. I think with COPD you are already a little of that now. But BGC can get to you as the program progresses. You need to take as much time for building yourself up as you can. Rest is important but so is getting up and walking to give your body a boos of energy.

At least you are in the BCG club. If they were to say you needed Surgery to remove your bladder the COPD would make that a tough option with only 17% lung capacity.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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5 years 2 months ago #45374 by Cognizer
This is all new to me. Just had a large tumor removed from my bladder. T1HG. Now they are recommending BCG. I'm in the process of moving down to near sea level so it will be a few weeks before I can get in to see new VA docs. Besides this cancer, I also have Stage IV COPD so will also consult with Pulmonary. With a FEV1 (lung volume) of 17%, I'm barely on my feet now. What can I expect in terms of the more common side effects? If tired and run down is one of them, this may be more difficult than they are letting on.

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