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Advice I received from the great Dr. lamn

11 years 6 months ago #12169 by Rosemary
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

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11 years 6 months ago #12167 by Sol
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,

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11 years 6 months ago #12165 by Gracie
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


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11 years 6 months ago #12162 by Sol
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,

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11 years 6 months ago #12161 by 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 advice


will 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,
Sol,

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11 years 6 months ago #12160 by Sol
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,

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