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Update on Steve, BCG etc
Well it is 8 weeks since Steve finished his first round of BCG. You may remember he had a horrendous reaction after last instillation which resulted in a dry eye condition which rendered him practically blind for a few weeks, painful joints and awful spots on his face and back. Plus never ending fatigue. His consultant said he had treated 150 patients with BCG over the last 7 years and only two had suffered such a bad reaction, Steve being one of them, and the worst case he had seen. Well he had his bladder biopsylast week and the CIS had all gone and there were no recurrences of T tumours. Because of this, the ‘team’ want to continue with maintenance BCG which we thought he would never have because of his reactions. They have spoken to the manufacturers of the BCG – who Dr Lamm works for I believe – and have decided to go ahead with the same dose. I did email Dr Lamm about Steve and he said to continue also but give BCG alongside antibiotics. It is all rather scary but they think as he has had such an excellent response it would be silly to stop treatment at this stage. We know that CIS is likely to return without treatment and then it would be a bladder removal. What do you guys think? Any feedback would be appreciated.
Ceri
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis8 Replies-
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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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;
So drink lots of beer..
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
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). http://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
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
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!)
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
I on the other hand am very skeptical of Dr. Lamm and some of his claims. He is definitely raking in some bucks with his “Oncovite” vitamins (he is definitely in bed with the vitamin manufacturer) and has some pretty shadey studies associated with “Oncovite”, which look like complete nonsense to me. But most people on this board think he is a superhero.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Hi,
I have to say I’m flabbergasted that the doctor wants to continue maintenance at the regular dose. On the other hand, I respect the approach of “don’t mess with success”. And yes, CIS is dangerous and if it doesn’t respond to BCG bladder removal is the other choice people are usually given. It could be worth it, but then again BCG can really mess up someone’s bladder if they are oversensitive to it. And make someone very sick, as you’ve seen…
The research coming out of Europe has been saying for years that lower doses are ok. Lamm himself advises lowering the dose in the face of bad side effects and I’d say your husband fits that bill more than any I’ve met…
I don’t think Dr. Lamm is on the payroll of any pharm. company.
Your consultant is correct about the UK and the US doing things differently when it comes to bladder cancer..but when it comes to the subject of lowered doses of BCG the bulk of that research originated in Europe.
If I were in your husband’s shoes, I think I’d get another opinion about it all.
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