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Missed BCG treatments

12 years 7 months ago #3753 by Rosemary
Dear Mom, (I like saying that).. :)

I just want to add my support to everything that Tim B just told you.  There really isn't anything to add except that I had already looked this up for you and then came back and saw Tim's post, so I will go ahead and share it.  

I went to Dr. Lamm's site www.bcgoncology.com and copied this quote under Chemoprevention/Treatment.  There is also a section on his site called "Ask Dr. Lamm" where you can E Mail him with questions about BCG treatments.    

Dr. Lamm has developed and tested in a randomized, double blind controlled clinical trial (the most rigorous of scientific medical studies) a high-dose vitamin combination (Oncovite, by Mission Pharmacal). In a dose of two tablets twice a day, Oncovite reduced tumor recurrence by 40%. We have studied chemoprevention in animals with garlic, which reduced bladder tumor growth and prolonged survival. More about prevention


I personally take a high antioxidant vitamin supplement that I compared to Dr. Lamm's Oncovite.  I also recommend Aged Garlic supplements and I have also read in some of the Tales from the Trenches that some like to take Maitake Mushroom.  I did Maitake with my first course of BCG.

...(There is also a topic that you can click on here at the Web Cafe on the front page called "Chemoprevention"  that explains some of the research behind our recommendations.)    

Gosh, Tim B.   I hate the thought of living without coffee... :'(  Sometimes, it's the only thing that gets me through my day.    

With Warm regards
Rosemary


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

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12 years 7 months ago #3752 by timb
Mom
There's a ton of information out there concerning diet and possible vitamins. I took advice from a renowned cancer charity here in the UK who favour a holistic (mind, body, spirit) approach and, in a nutshell, they advised me to eat a "rainbow" of good healthy vegetables, eliminate tea and coffee, introduce seeds into my diet - particularly pumpkin, sunflower and flax, cut down or avoid meat (except for fish) and avoid strong tasting smoked or pickled foods. Alcohol was obviously a no no too. I also became a serial juicer and would drink carrot, apple, cabbage and all manner of juice cocktails. I was told to just use fruit as a sweetener and juice mainly vegetables. During the time I followed this advice to the letter I felt absoloutely fantastic. Can't really say what good it did otherwise but feeling good has to be worth quite a lot! I'd also given up smoking which is an absoloute must with this illness being as it depletes you nutritionally and the cancer loves it.

When I was going through my BCG treatments I took an aged garlic extract, green tea extract (shown to improve the efficacy of BCG in trials at UCLA) vitamin C and a really good multivitamin. I can't really advise you personally except to say that it's well worth seeking out the advice of a trained nutritionist. I'm in UK and fortunately also live near to the Cancer Help Centre who provide these services for a donation. Perhaps someone here will be able to advise you of your options in the US.

I also saw and still see a homeopath and went for counselling throughout my BCG treatment. In addition I cut down my working hours by approximately half (I was fortunately able to do this). All of this made sense and felt right to me and, if the benefits were sometimes subtle or unseen, gave me a profound overall sense of actually doing something about my situation. To me this was very valuable and stopped me from going slightly bonkers!

BCG intolerance can happen. This didn't happen to me and I had a cystectomy rather than pursue other options (my cancer was high grade superficial but with a side order of CIS which is a potentially aggressive variant) so hopefully someone will fill you in on this. "Refractory" BCG is where the cancer keeps recurring despite BCG treatment. Prognostically this is usually not welcome news and will sometimes lead to more aggressive surgery or other treatment. As I said, I eventually went down the aggressive surgery route (I'd lost my father and sister to cancer in the last 5 years) and I can report that I'm living a a really good life in spite of it. As many people are!

I did consider a second opinion for myself but nothing I read contradicted the course of action recommended by my medics and I was fortunate to be under one of the top uro-oncologists over here. I'd also been going for 14 years or so and therefore I have a pretty good relationship with them.

All the best and I hope someone here can be more specific about the nutritional/supplemnt needs relative to where you are.

All the best

Tim


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12 years 7 months ago #3744 by Mom
From what I have read there are some people who are BCG intolerant, right? What is/are the other options? Interferon?

I am curious as to when a second opinion should be sought. Has there ever been any discussion as to diet and possible vitamins bladder cancer patients should take/follow?

Mom

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12 years 7 months ago #3740 by timb
Hmmm... I like the sound of "General" ;)


Mom
I had BCG for about 18 months; the 6 week induction and then 3 maintenance courses. I read quite a lot about it at the time and understood that a lot of these BCG treatment schedules were settled on empirically i.e. through experimentation and experience rather than through an exact understanding of the way it works. It's still not fully understood.There are some studies that suggest that a single dose can be as effective as a course. Like Wendy, I'm not a medical professional but I was certainly led to believe, during my treatment, that a few weeks here of there wasn't anything to be too concerned about. I didn't miss any treatments for the same reason as your son (although there was microscopic blood in my urine during treatment) but did delay occasionally if it conflicted with something else important in my life. It sounds also like you don't have a lot of choice but to miss them

All the best

Tim

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12 years 7 months ago #3737 by wendy
Hi again,

You're more than welcome, I wish I could be of more help...

About the status 'stars', this is something generated by the forum software and not in our control. It's related to the number of postings a member makes. The "5" star status is afforded to administrators and moderators. I'm glad I'm not the only one with rank and file, I always feel a bit silly about those stars! Now that Rosemary and Tim are official 'Generals' or something, here with me I feel less conspicuous even as those stars are more conspicuous. Oh well, that's the breaks, but since this software is provided free, I can't exactly complain!

Wendy

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12 years 7 months ago #3736 by Mom
Wendy,
Thank you, thank you. You are so helpful and honest.

Off the topic - Some people are members, junior members, etc. how do you become a full member? What is a junior member?
Mom

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