Update on Steve, BCG etc

17 years 1 day ago #4606 by timb
Replied by timb on topic Update on Steve, BCG etc
Yes and I read about the anti-cancer beer diet too! Its amusing, and sorry to be a party pooper on this one, but for me its not about that. It's about excessive sugar consumption, massively fluctuating energy levels, background alcohol induced depression (its a known depressant), yeast bloating and generally feeling like dung. When my body is trying to fight a potentially lethal illness and I'm trying to give the meds the best chance of doing their thing, I don't want to be putting it under that kind of pressure at the same time. Of course I enjoy a beer and have been known to make a dick of myself under the influence, but at a time when everything is seeming out of control it made me feel good to give the booze a wide berth for a little while and also gave me a greater degree of mental control. Of course now my bladders out I still have to watch it but in a different way as I discovered it gives me the continence of a rat. Giving it up has been an important step in me regaining urinary control.  Life without the odd snifter seems unthinkable though, I agree. I tend to stick with the low volume beverages now such as the odd glass of wine (good for the heart apparently) or a nice glass of whisky. But when I was going through my BCG I took my diet very seriously as I wanted to give it a decent chance of working and of feeling on top. That feeling was the most important ingredient in me getting through that period. That needing to eat and be well has stayed with me but Ive calmed down a bit and adapted it more to my lifestyle.


All the best

Tim

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17 years 1 day ago #4604 by cta7978
Replied by cta7978 on topic Update on Steve, BCG etc
I agree with the "no smoking"! However I have to differ on the "No alchohol"... For those of you who love these small little studies, I like this one;

www.urotoday.com/37/browse_categories/bladder_cancer/alcohol_consumption_does_not_raise_risk_of_bladder_cancer.html

So drink lots of beer..


Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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17 years 4 days ago #4552 by timb
Replied by timb on topic Update on Steve, BCG etc
Ceri
For what its worth, and Im not advocating these as absoloutes(!) I took aged garlic extract, green tea extract ( because of encouraging tests carried out at UCLA with GT and BCG; green tea extract was shown to increase the efficacy of BCG over, I think, a four year period). I also took a good quality multivitamin (the Penny Brohn Cancer Care site will send you a special pack that includes all the vits and minerals they think people with cancer need; these are tried and tested over the years by them and are pricey but very high quality). www.pennybrohncancercare.org/

The most important thing that I did was to improve my lifestyle and dietary habits; less meat, no smoking, no alcohol, plenty of fresh organic fruit and veg, avoid additives, eat fish etc.

Whether or not the above is going to help with Steve's diagnosis I cannot in all honesty say. But I do know that I felt bloody great when I was doing all this and thats pretty important when you're dealing with all this. Plus, your body is taking such a battering you need to get fortified! As I said above, it's only when I came off al the BCG I realised what it was doing to me.

All the very best

Tim

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17 years 5 days ago #4543 by The_Rabbit
Replied by The_Rabbit on topic Update on Steve, BCG etc
Thanks for your replies. Tim, your posts are always of interest to me because you are a similar age to Steve and had a similar diagnosis and live in the UK. As you know, Steve has only been living with this for the last 6 months so we shall go down the BCG route for now, although I must be honest, he was all for having the bladder out as he hates the stuff. It is the constant lethargy he can't stand. We have a three year old and he feels so guilty at having to lie down on the sofa most afternoons rather than being in the park. He just hasn't been able to muster the energy. We are hoping the maintenance won't be quite as aggressive as the first 6 instillations (although I suppose that's a lot to hope for).

Tim - what vitamin supplement do you recommend? Oncovite isn't available here is it, and there must be an equivalent out there. Chris - after reading your post, I take it you don't take vitamin supplements?
I am always so interested in everyone's perspective. This website is such a learning curve.

Ceri

GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis

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17 years 5 days ago #4542 by timb
Replied by timb on topic Update on Steve, BCG etc
I had the CIS and high grade tumour and had an initial positive reaction to the BCG. This made me want to continue. What I did do, though, was give myself a strict turnaround time (as mountaineers would say). In otherwords, if the BCG proved not to be holding the CIS at bay, then I would go for the bladder removal. Which I have now had. If I was going to have this extreme surgery then I wanted it to be a choice and also to have it when it had the best possible chance of curing me. I have to say, the operation has been a real success for me and I feel really back to my old self with minimal continence issues. I have a few snagging issues but what I have removed along with the bladder is the constant worry I had. Also, now I've been off the BCG for a significant length of time, I can feel the damage it was doing to my whole body. I feel much less tired and generally washed out than I did. That said, it was a useful precursor to bladder removal as it gave me time to do resaerch and mentally prepare. Going straight to cystectomy from a standing start would, I think, have been a bridge too far! It happens to people though and they deal with it. So, in a nutshell, I did the bcg until it failed (cis recurred) then went without delay to bladder removal. You also have to factor in that there is a risk associated with that in terms of progression. I felt it was wirth the risk. I can't remember the figures and I mainly went on my gut feeling.

There are cases where BCG has kept cis at bay indefinitely. The protocol that is being suggested to you is a well trodden path. Just be clear about what you will do if it fails, keep a close eye on things, learn about more radical treatment such as cystectomy and remember that CIS can be an aggressive and unpredictable beast.

If it does come down to radical surgery there's plenty of support here for you here and me and others like me are proof that there's a good life beyond cystectomy.

Hope this helps.

Best wishes

tim (44 - on tuesday!)

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17 years 6 days ago #4520 by Rosemary
Replied by Rosemary on topic Update on Steve, BCG etc
Chris,

I would like to weigh in on the other side of the balance in Dr. Lamm's favor.  The fact that he has answered our E Mails with expert medical advice for FREE, speaks very well of intent in aiding our fight against this disease.  He could attach a POP-UP ad, for Oncovite, or add a banner to his E Mails.  He could even charge us through Pay Pal.  His advice is worthy of payment.  But, for some reason, he does not do this.

For me, this tells me everything that I need to know about where his heart is in the matter.  I do know the issues with Oncovite can seem murky.  But, the proof is in the pudding (so to speak).

That is my opinion.

Your BC friend,
Rosemary

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

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