Carcinoma In Situ diagnosis

4 days 16 hours ago #61292 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
The good news is that I had a negative cystoscopy today. This gives me a full year of negative cystoscopies. I'll get my cytology results in a week or so but my last three have also been negative.

The bad news is my NEC facility doesn't have BCG available for me to continue with the maintenance protocol. This concerns me since BCG has been so effective for me. The Dr. said I was in a good position and he and shouldn't be overly concerned about it at this point.
He scheduled me for a CT urogram and another surveillance cystoscopy in September.

I'm not sure if I should be trying to find another institution with BCG to continue the maintenance protocol or hold tight until September. Has anyone else had to deal with this? Not even sure where to call to see about BCG availability of if they would just provide me with three maintenance treatments. Any advise? Anyone know where BCG is available?

Thanks,

Clyde

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3 months 1 week ago #61187 by duhhawaiian
Replied by duhhawaiian on topic Carcinoma In Situ diagnosis
Big Thank you Joe.   I will bring up the interferon.       Les

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3 months 1 week ago #61186 by joea73
Replied by joea73 on topic Carcinoma In Situ diagnosis
HI Duhhawaiian,

Before you decide,  you may want to discuss with urology  a few scenarios what if your disease does not responds to the next treatment, 

"If we do Gemcitabine, what will be treatment schedule like?"
"If we do Gemcitabine, how will we know that Gemcitabine is not working?"
"If we do Gemcitabine and it is determined that it is not working, what will be the next treatment options, RC or another bladder preservation treatment?"

If we do BCG, what will be the regimen like,  another try for 6 weeks induction + maintenance courses"?
If we do BCG. when we determine that another BCG is not working?
If we do BCG, what will be the next treatment, Gemcitabine?

I know someone who did not respond to T1HG+CIS after the first 6 weeks induction course, the urologist recommended BCG +i interferon with the standard regiment - 6 weeks + 3 years of maintenance.   I mentioned this because even 3 weeks maintenance could have improved the response, the fact, your disease did not respond after the 6 weeks induction course  may mean the chance of your disease responding to BCG alone may be so high. Accordingly, you may want to discuss if BCG+Interferon would give better chance for the disease to respond. BCG + interferon has been offered  to those initial BCG did not work.
 
In this case, you may want to ask If we do BCG, what will be the next treatment, Gemcitabine.

best
The following user(s) said Thank You: duhhawaiian

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3 months 1 week ago #61185 by duhhawaiian
Replied by duhhawaiian on topic Carcinoma In Situ diagnosis
Hi Sara Anne,    Thank you very much.  I totally agree with you.  After my first round of 6 weeks BCG and the few weeks later with the scope my bladder looked good.  I wanted to go ahead with the maintenance regimen but my urologist said he doesn't do it that way and cut me off.  Not a good situation.  Now 9 months later he wants to do the Gemcitabine for urotileal carcinoma in situ.  I think I'm going to ask for the BCG again.   Which was my thinking.      Thanks lots Sara Anne.   Les

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3 months 1 week ago #61184 by sara.anne
Replied by sara.anne on topic Carcinoma In Situ diagnosis
There are several things that we need to be aware of when looking at this protocol.  First, there are no scientifically valid clinical trials that have been published in peer-reviewed journals that indicate that this would be an effective treatment for CIS.  Second, the primary drug mentioned is a dog de-wormer (I am not aware that bladder cancer is caused by a parasite!)  PLEASE discuss this with your urologist before becoming involved with it.

Duhhawaiian, am I correct in believing that you had 6 BCG treatments?  As you have read, the usual protocol is to follow this with multiple maintenance doses....After my induction I had BCG once a week for three weeks every three months for two years.  As Alan suggested, you may want to get a second opinion on your treatment options from a urologist who specializes in bladder cancer.  BCG is the treatment of choice for CIS in the bladder and you have not had the recommenced doses.  I don't think you are quite at the place where you can state that BCG failed.

Best of luck to you

Sara Anne


 

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 months 1 week ago #61183 by joea73
Replied by joea73 on topic Carcinoma In Situ diagnosis
No I have not... yet. 
I have listed what I have found on internet about Joe Tippens Protocol is.  It sounds a bit complicated regimen.  

Dr Mukhopadhyay from MD Anderson first discovered mebendazole has potent anti-cancer activity in lab experiments in 2002. 


Joe Tippens Protocol 


Joe Tippens pioneered the human use of FenBen. Tippens uses Panacur C from  Merck Animal Health. Each gram of Panacur C contains 222 mg of fenbendazole.


Panacur C  one packet of powder (contains 222 mg of fenbendazole) each day for three days, and then  four days off.  You take the fenbendazole with or  without meals.


Comment: Although we don’t have human data, it seems to be safe at this dose, but again, consult your doctors. 


Vitamin E: 400-800 mg daily. Tippens uses Gamma E by Life Extension or Perfect E by Vitamin Discount Center.


Comment: I will reduce the dose Vit E to 200 mg or IU if you have heart disease. 


Curcumin: 600 mg daily.  Tippens uses the product Theracurmin HP by Integrative Therapeutics.


Comment: Generally safe. I use BCM-95®CG (Biocurcumax™) in my clinic simply because it was studied in clinical trials. 


CBD oil 25 mg daily. 


Comment: I use Green Road CBD oil capsules in my clinic. These capsules contain 25mg of  broad-spectrum CBD oil. You can take one capsule per day. 


No need for THC as a part of cancer treatment plan. But this may change as new data emerges. 

Link to Joe
i2b.us/fenbendazole-from-md-anderson-to-joe-tippens/#:~:text=Joe%20Tippens%20Protocol,and%20then%20four%20days%20off.

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