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Missed BCG treatments

12 years 6 months ago #3840 by timb
Mom
Bladder removal is often the recommended course of action in recurrent high grade BCG refractory (resistant) disease, particularly if that disease is accompanied by carcinoma in situ (CIS). I'm not sure of the numbers on it. BCG has a very high sucess rate (exceptionally good with CIS) and can often stave off further intervention for a number of years - sometimes indefinitely. My own cystectomy was elective. My consultant was ready for another round of BCG. But after reading about peoples experiences with neobladders and meeting with recipients here in my home town and reading up on CIS, I felt it was the course I felt most comfortable with. It was by no means an easy decision to make. And I could have held it off for another period.

If you are interested, there is a facility on this forum for creating a poll. You could poll to see how many people had a cystectomy within X years of BCG treatment. Look for Start New Poll where you'd normally start a new topic and it's follow your nose from there.

Emotional impact; I'm in UK so I think the treatments for depression may be a bit different. Here, I personally went for counselling and took Temazepam for sleeping at one point. Plus the other steps outlined above. The hospital has introduced me to a group of cystectomees who regularly meet to discuss issues surrounding their situation (I haven't had a chance to go there yet - too much surfing the BCWC ;). I think my medics were pretty aware and receptive to the emotional/mental impact but fielded such issues to the GPs here.

My consultant two years ago referred constantly to "devastation" when describing the aftermath of cystectomy. I thought it was pretty unhelpful and, though the op is certainly tough and challenging and there can be complications, I think he over-spiced things somewhat and projected onto my situation some of his own personal fears.

Sorry can't be more helpful with the numbers.

Best Wishes

Tim

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12 years 6 months ago #3839 by Mom
Rosemary,
Thank you for your nutrician information, too.  I will pass along to my son.  I talked with him last night and still bleeding so doubts very much he will have the scheduled BCG treatment Monday.  He did get a 2nd consult from Dr. O'Donnell and probably will have another cystoscopy, but look in an area recommended by Dr. O'Donnell.  He dreads this so much.  We will go to MO to help again.  It has been 3 weeks since his last BCG and will miss another week when he has the cystoscopy then has been told he will have to wait another 2 weeks after that.  We are now looking at 4-5 weeks or more before another BCG.

Tim and Fallon, is there a number around that tells how many bladder removals have been done?  Is there any organization that keeps 'numbers' on this?  I'm curious since quite a few on this forum have had bladder removal (cystectomy) - even after the BCG regimine.

Has there ever been a discussion on this form about depression with bladder cancer patients and how they dealt with it?  Medication, etc.?  And is the medical community receptive and understanding to medication for depression?  So many questions!

Mom

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12 years 6 months ago #3833 by timb
Fallon
I'm originally from macclesfield just near manchester. nice part of the world. i'm in bristol these days but go regularly up north. I think with me, the bcg held me in a place of "not knowing" too. I feel much better in myself since my surgery as it's forced me to move forwards. It sounds like you are at a similar junction. And I can also remember feeling pretty calm just before surgery. I don't want to give Mom and others on here the impression that the BCG route always ends in cystectomy because it doesn't but I just didn't want to take any risks with CIS and my G3 tumour. Having seen the sharp end of cancer, as you have, certainly spurred me on a bit. I also spoke with people who'd had the op in bristol which was tremendously helpful. In the end, though, no matter what people say, it's you in there with the surgeons dealing with it. It's definitely a tough time. But I was amazed at how quickly I recovered and that I really and genuinely still feel whole.

I went, as I said, through 18 months or so of BCG before going with thte cystectomy. And, in spite of the fact it didn't achieve what I wanted it to (bladder sparing) it definitely gave me time to get my head around the prospect of bladder removal. I think if i'd had less time to deal with it i would have gone into it with far less knowledge and mental clarity.

I look upon the challenges remaining with my neobladder as management issues (dampness at night; but it is improving). I occasionally get pissed off with it but usually fleetingly. My life feels pretty much the same as it was before. I'm going back to work next week and kind of dreading it! I know I'll be a minor celebrity for a bit. I'm thinking about making some handouts so I don't have to endlessly repeat myself to my colleagues and punters! But then I'd miss watching the guys squirm!

You ask any questions you like in the time ahead Fallon. If you want to PM me then please feel free. The path you are choosing is challenging but very well trodden.

All the best to you

Tim

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12 years 6 months ago #3831 by joanie
Hi Tim,
I was from Manchester many years ago have lived in the US for many years with a trip back to the UK every year sometimes twice a year if the fares were good.
It is wonderful all the things they offer. Christies the cancer hospital in Machester offers all kinds of crafts and things to keep your mind busy when on chemo or radiation you stay until your treatments end.The sister who was operated on while the other was dying ended up in there she made it 5 years with radiation and chemo then died
My sister was very ill when I started her on the program 3 weeks away from her death could not believe the change in her with her positive thoughts. I am so glad I had those last weeks with her talking about our childhood made her so happy think that helped along with all the vitamins.
Sounds like you have a very positive attitude like you the BCG and Interferon has worn me down gone from an active life to wanting to do nothing but sleep. Feel like I have spent 4 years fighting this only to end up losing my bladder in the end.
Strange the past week I have felt better than I have in a long time have just finished a course of cipro think its my mind now the surgery is getting closer I am OK dont need it. I would live with the pain and other problems but know with CIS will always come back so need to get on with it. I have my post Op on Feb 20 so will ask lots of questions.
Fallon

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12 years 6 months ago #3810 by Rosemary
Mom,

I was thinking about this this morning and remembered that I have BCG's (3) coming up soon.
I'm planning to implement Cranberry Juice to my protocol during administration of BCG's.  From what I hear around the board here, Cranberry Juice helps to reduce the terrible burning that BCGs can cause upon urination.  The truth is for me, sometimes my bladder burns whether urinating or not.

Anyway, I'm adding Cranberry Juice to my protocol.

So this would be my protocol if I were trying to help my own son...

1.  A vitamin supplement with properties relative to Oncovite

2.  Aged Garlic (Kyolic is good)

3.  Maitake Mushroom ( I may try D-Fraction this time - ask your local Health Food Store Person)

4.  Intake of Cranberry Juice during instillation

5.  Plenty of the purest water you can find.

I'm hoping that the bleeding issue gets resolved for your son soon.  I know how worried you must be.  

You are a good Mom,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 6 months ago #3809 by timb
Hey Fallon
I spent time at the cancer help centre whern my tumour went to a grade 3 with CIS and took nutritional advice from them and that's where I get my vits (I also spent a ton on vits and I'm a bit more restrained these days. But I believe it's best to buy the best you can afford with vits). I didn't fully take advantage of all the things they offered because I felt, at the time, that I didn't want my illness to become my whole life. Which seems silly now really as they offer some fantastic therapies (art, creative writing, shiatsu etc etc) and are a great one-stop shop for the complementary approach.

I think the most important thing I learned at that time was, exactly as you state, my quality of life. As stated above I felt amazing. I lost my sister too, she was 38, from lung cancer and I really wish that she'd had a resource close to hand like this. Then again, that wasn't really her thing and she was way too ill too quickly to take advantage of much. She went from diagnosis to dying within 3 weeks and couldn't really walk much from quite early in this process. I'm glad they made such a difference to your sisters life. I'm lucky to have them in my home town here. Sounds like you had quite a time.

I just read your above posts too. I had BCG for about 18 months because of recurrent CIS and G3 tumour and eventually went for the cystectomy. I really feel now it was the right way to go and, though challenging in different ways, it's great to be on a different and BCG-free regimen and dealing with the neobladder. I'd underestimated how much the BCG had ground me down in the time I was on it. It really is ghastly stuff. It's great when it works but for me it wasn't. I really believe that if you take the cystectomy route in March with an attitude of moving forward then you'll get to grips with it as so many have. I expected to feel like half a person after this surgery and disabled in some way. I don't at all. It's not perfect but it's light years better than I expected and my life is still going on and I'm still me!

All the best

Tim

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