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Advice I received from the great Dr. lamn
Here is some very informative information I received from the great Dr. lamn
This was my question to Dr Lamn:
Hi Dr. Lamn,
I have read many great things about you (particularly on web cafe forums)and how you give so much of your time to help patients during their difficult times. It is very encouraging to have doctors such as yourself. I hope you will be able to help me get thru this ordeal.
I am a 37 year old white male and I was recently diagnosed with bladder cancer. The larger tumor was removed during my first cystoscopy. I was told that nothing invaded any muscles but they are high grade. I was recommended by my first doctor to go for bladder removal which I was not ready to do. Went to a big doctor in MSK in ny. He did another cystocopy and basically said that I only have CIS/flat superficial tumors left and due to the fact that its high grade and due to my age, a neobladder surgery is the safest way but BCG is also an option. I started BCG and this week was my 2nd out of 6 scheduled treatments.
My question to you is, what can I take to supplement the BCG so it has the most powerful effect thereby avoiding recurrence and avoiding bladder removal without compromising and/or conflicting with the BCG treatments?
Again thanks in advance for taking the time to answer my question.
Sincerely, Sol
Cystectomy or BCG for High Grade Large Tumor with CIS in a 37 year old
Dear Sol:
As surgeons, we urologists believe that surgery- complete removal of a tumor, is the best treatment there is. Often, but not always, we are right. The argument for surgery is that at age 37 you will have a very long life with continued risk of tumor recurrence and progression.
Concern has been raised that patients who are treated with BCG, fail and then have cystectomy do not do as well as patients who go directly to cystectomy. At Columbia in NY they found a remarkable 30% reduction in survival, from 70% to 40%. Therefore there is a major push to do more cystectomies earlier. Also, of course, survival with cystectomy is higher the lower the tumor stage, in general.
That said, let me give you some support for your decision to keep your bladder for at least a while. Dr. Lerner and associates reviewed and re-analyzed my SWOG BCG Maintenance study. Their goal was to find and report that early cystectomy (within one year of BCG) provided a better chance of survival than late cystectomy. There study did not find any significant advantage of early cystectomy. What they did find was a significant improvement in survival for patients who had received 3 week maintenance BCG. So, theoretically, you could have a better chance of cure if you take maintenance BCG, even if you fail that treatment and have tumor recurrence.
I do not routinely advocate (but I do offer) cystectomy for non-muscle invasive high grade bladder cancer. Many investigators who have looked at these high risk patients treated with BCG find that there long term results are excellent. In my review of nearly 800 patients, only 12% progressed to muscle invasion. In San Antonio, Cookson looked at my long term results and found only 6% of 86 patients progressed with 5 year follow up, and only one BCG treated patient died of bladder cancer.
What can you do to improve your chance of success? Stay away from tobacco and other carcinogens, eat at least your 5 servings of fruit or vegetables a day, limit red meat and high fat intake, drink lots of water (sans arsenic and insectocides), exercise (in moderation, like everything else), and take Oncovite 2 tabs twice a day. You may also want, if you like it, to try some tea, pomegranate juice, garlic, and/or selenium 200 micrograms/day.
Thanks for asking, Don Lamm, MD
Sincerely,
Sol,11 Replies-
Sol,
I read one of your other posts and responded. It looks like you are getting good advice. Glad to see that you are seeking out as much info as possible.
My doctor has urged me to get a second opinion and has referred me to Dr. Lamm. I live in the southwest and I am fortunate that I don’t have to travel too far.
Ross
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
Hi Joe,
I did not have extreme burning at all. All the other typical reactions took place and usually did not last for more then 2 or 3 days. But Joe, I also was at a reduced dose as the treatments went along. If I stayed at full dose I don’t think I could have continued.
Best,
Gracie
Gracie, how long did the BCG symptoms last for you? Did you have intense burning?
Joe
Thanks Gracie, Hope to make it happen.
Sincerely,
Sol,
Sol – No two experiences are exactly alike – Dr. Lamm is a doctor and a researcher. He brings a completely different perspective to the table and BCG is his realm. He is a compassionate, kind person. You will enjoy meeting him.
Joe, do not dread the BCG. I welcomed it and regarded it as an elixir. I welcome the treatments because I felt I was actively fighting this damn thing. From everything I have heard – it is good to have some reaction. In the beginning I had nothing but the side effects became progressively more interesting. There is urgency, sometime an ‘achy’ feeling (like you have a flu but not as bad). I bet almost every person reacts somewhat differently. I ended up on reduced dose. You need to be your own advocate. I chose to consult with Dr. Lamm. Good luck. Your first step in taking your health back!
Rosemary – how interesting on the chicken! Wow – never heard that before. Any other pearls of wisdom for us??
Best,
Gracie
Gracie did you have any side effects to the BCG? I start mine in 4 weeks. What did you do to reduce the side effects if you did have any?
Thanks Joe
Sol,
I have great respect for Dr. Lamm!
My own personal experience about red meat….I am a great advocate of not eating red meat. For the record, I have not knowingly eaten red meat in over 25 years, so once again, we won’t be able to prove a cancer preventive benefit by me.
However, on occasion I have been known to eat chicken baked without the skin. (But here again, only occasionally.)
Here is an article that was under discussion at the forum a while back that eating bacon and skinless chicken may cause bladder cancer.
I do not know if there is any merit to this study, it is offered for informational purposes only. However, for myself, here is finally a risk I can cop to.
“People who ate bacon five or more times per week increased their risk of developing bladder cancer by 60 percent
People who ate skinless chicken fives time or more per week increased their risk of developing bladder cancer by 52 percent”Here is the article.
http://drbenkim.com/blog/2006/12/bacon-skinless-chicken-may-cause.html
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi Gracie,
Thanks for your response, and yes stories like yours will change the way I view the glass.
Is there any data that confirms to cut out red meat completely?
I plan on flying to the west coast, should I make an effort to meet Dr. Lamn?
Thanks again for your support.
Sol,
Sincerely,
Sol,
Hello Sol,
I tried to reply earlier to your post but it did not seem to go through.
I have consulted with Dr. Lamm and have gone to Arizona on a couple of occasions. I have also consulted with Dr. O’Donnell in Iowa (although I would suggest going a month other then November). I found Dr. Lamm to be very genuine. I still consult with him on treatment options Although I have an excellent doctor where I live – I try to gather information whereve I can.
My big frustration is often the inconsistencies. Percentages just dance in my head!I am T1 with CIS, diagnosed in ’05. I have had BCG treatments including the maintenance BCG. My CIS did not reoccur but I have had minor reoccurences. I have just completed INF/BCG treatments of 6 and one round of maintenance. My last 2 cystos and FISH tests have been negative. Dr. Lamm was particularly encouraged by the FISH test since it is highly sensitive and has few if any false negatives.
Be aware of your reaction to BCG – it can actually do harm by immune suppression. But Dr. Lamm is very, very aware of that and is cautious when perscribing dosages.
I try to drink 5 cups of green tea a day. Drink purified water – also have had a filter put on our house water system. Have Pom juice in the fridge. Brocoli is our friend. Do not eat red meat at all – just chicken, turkey or fish (organic whenever possible). Its really not that difficult to stick to.
Sol, remember that there are success stories. My glass continues to be half full.
Best,
Gracie
This was my last communication with Dr. lamn
BCG, BCG Maintenance or Cystectomy for a Young Man with High
Grade, TA Bladder Cancer with CIS?Dear Sol,
Thank you for your good wishes and congratulations on your negative
cystoscopy and apparent complete response to 6 weeks of BCG. Early
response is a good sign, but High Grade TCC with CIS is a dangerous
disease that must be followed very carefully. You are at long term risk
of having the disease return in the bladder, lower ureters or prostate, so
these areas have to be carefully monitored. Some would recommend going
ahead and having the bladder removed now. The advantage of early
cystectomy is that it removes not only the bladder, but the lower ureters
and prostate as well, sites that are at risk of developing disease.
Personally, If I had the disease at your age I too would give BCG a try,
but only if 3 week maintenance and careful follow were given. I am not
sure what your doctor is referring to when he says that there is not much
data. To my reading the data are as good as they get: randomized clinical
trial and meta-analysis, the gold standard for medical evidence.
Here are some of the numbers: My Southwest Oncology Group study showed a
highly significant increase in complete response of CIS to 3 week
maintenance: from 68% with induction to 84% with just one additional 3
week course of BCG at 3 months. In patients with papillary disease who
were free of recurrence at 3 months, 3 weekly BCG instillations at 3, 6,
12, 18, 24, 30 and 36 months reduced long term tumor recurrence compared
with 6 week induction from 26% to 14% (P<0.001; reference: Lamm DL,
Blumenstein BA, Crissman JD, et al: MAINTENANCE BACILLUS CALMETTE-GUERIN
IMMUNOTHERAPY FOR RECURRENT TA, T1 AND CARCINOMA IN SITU TRANSITIONAL CELL
CARCINOMA OF THE BLADDER: A RANDOMIZED SOUTHWEST ONCOLOGY GROUP STUDY. J
Urol.163:1124, 2000). More importantly, disease worsening (T2
progression, cystectomy, radiation therapy or systemic chemotherapy) was
also significantly reduced. Our meta-analysis of all controlled BCG
therapy trials (Sylvester RJ, van der Meijden APM, Lamm DL. Intravesical
bacillus Calmette-Guerin reduces the risk of progression in patients with
superficial bladder cancer: a meta-analysis of the published results of
randomized clinical trials. J Urol. 2002;168:1964.) confirmed that BCG
significantly reduces disease progression when compared with other
treatments, but this 37% reduction in progression occurred only when
maintenance schedules were used. Since only 16% of patients on my SWOG
study received BCG at each of the scheduled intervals, I now reduce the
dose of BCG to 1/3 during maintenance and omit the 30 month treatment.
Further reductions are used if needed to prevent increasing side effects.
The long term results are very good, but because you need not a 15 year
cure but a 50 year cure, I would recommend extending the maintenance to
every year for the 4th, 5th and 6th year, then every other year for 8 more
years. There are data to suggest that even if someone fails maintenance
BCG and requires cystectomy, there risk of dying from bladder cancer is
significantly less (63%) if they have had 3 week maintenance BCG. Not
only that- but you get to keep your bladder and retain normal urinary and
sexual function.
Keep with the Oncovite as well- we will report, as soon as the numbers are
confirmed, a very highly significant reduction in recurrence in patients
on 3 week maintenance with the addition of Oncovite.
Best regards, and thanks for asking,
Don Lamm, MD
Sincerely,
Sol,
This is the next correspondence:
Hi Dr. Lamm,
Again thanks for your response. It is extraordinary for a doctor in your caliber to respond to patients such as myself with such important information. I can only speak for myself, but am sure others will agree that besides for actually getting valuable information while going through this crisis, the moral support one gets when you respond is invaluable.
In your email you mention the SWOG study. Can you please explain what SWOG stands for?
My doctor at MSK has prescribed a six week course of BCG treatment. I am wondering why doctors at MSK do not prescribe BCG maintenance as well. I’m also wondering if it’s important to turn to each side for fifteen minutes during the first two hours of BCG treatment.
As per your recommendation I purchased the Oncovite and began taking two tablets twice a day. Should Oncovite be taken before or after meals? Were any side effects (even minimal) ever recorded?
You also mentioned to increase fruits and vegetables. Are there any fruits or vegetables in particular? Should I try to only use organic type due to preservatives and insecticides found in regular fruit and vegetables?
I look forward to your advicewill respond IN CAPS IN THE TEXT OF YOUR QUESTIONS. THANK YOU FOR THE
KIND COMMENTS. D LAMM, MD
>
> question: Hi Dr. Lamm,
>
> Again thanks for your response. It is extraordinary for a doctor in your
> caliber to respond to patients such as myself with such important
> information. I can only speak for myself, but am sure others will agree
> that besides for actually getting valuable information while going through
> this crisis, the moral support one gets when you respond is invaluable.
> In your email you mention the SWOG study. Can you please explain what
SWOG SOUTHWEST ONCOLOGY GROUP- ONE OF THE LARGEST COOPERATIVE NCI FUNDED
RESEARCH COLLABORATIVE GROUPS.
> stands for?
> My doctor at MSK has prescribed a six week course of
> BCG treatment. I am wondering why doctors at MSK do not prescribe BCG
> maintenance as well. THEY DID A STUDY OF ABOUT 100 PATIENTS USING
MONTHLY MAINTENANCE AND SAW NO BENEFIT. SEE MY ATTACHED SLIDE, ASSUMING
I CAN FIND IT. I’m also wondering if it’s important to turn to each
> side for fifteen minutes during the first two hours of BCG treatment.
SURE, YOU CAN ROTATE AS ON A BARBECUE SPIT, BUT IF YOU JUST LAY BELLY
DOWN FOR 15 MINUTES THAT SHOULD BE SUFFICIENT
> I may fly down to Arizona after I complete my BCG treatment to visit you
> and would like to know whom to contact to schedule this appointment.
JAMAKA, ABOVE, WILL MAKE YOU AN APPOINTMENT
> As per your recommendation I purchased the Oncovite and began taking two
> tablets twice a day. Should Oncovite be taken before or after meals? Were
> any side effects (even minimal) ever recorded? IT IS GENERALLY BEST TO
TAKE HIGH DOSE VITAMINS WITH MEALS. YES, UPSET STOMACH IS COMMON.
SERIOUS SIDE EFFECTS CAN OCCUR, INCLUDING LIVER DYSFUNCTION AND BIRTH
DEFECTS IN PREGNANT WOMEN.
> You also mentioned to increase fruits and vegetables. Are there any fruits
> or vegetables in particular? THE LATEST IS POMAGRANATE JUICE AND SMALL
BERRIES, BUT ALL SEEM TO HELP. CRUCIFEROUS VEGGIES, GARLIC AND TEA AND
EVEN BEANS HAVE BEEN IMPLICATED AS BEING BENEFICIAL Should I try to only
use organic type due to
> preservatives and insecticides found in regular fruit and vegetables?
> I look forward to your advice. LATEST CRAZE IS LOCAL GROWN- IF YOU HAVE
ACCESS TO A FARMERS MARKET. ORGANIC, OF COURSE, SHOULD ALSO BE GOOD.
Sincerely,
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