Carcinoma In Situ diagnosis

2 years 2 months 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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2 years 2 months 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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2 years 2 months 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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2 years 2 months ago #61182 by duhhawaiian
Replied by duhhawaiian on topic Carcinoma In Situ diagnosis
Has anybody tried Joe Tippens protocol or Care Oncology for bladder cancer?   Thank you

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2 years 2 months ago #61181 by joea73
Replied by joea73 on topic Carcinoma In Situ diagnosis
I saw a webinar by Dr. Ashish Kamat of MD Andersons, who is one of expertise for bladder cancer.   He showed a study which showed that for CIS,  6 weeks induction BCG treatment alone had 55% complete response (no recurrence, no progression).  The group who did not have 3 week maintenance course 3 months later,  the complete response rate went up  69%.  The group who had the 3 weeks maintenance course had the complete response rate went up to 85%.   It showed the durability of BCG treatment such that our immune system keep responding to BCG even after BCG treatment.

2.  AUA had come up with the definition of BCG unresponsive, which is defined as those who had an adequate BCG treatment but there was recurrence with high risk (HG and CIS).   Those with BCG unresponsive  will not benefit with further BCG treatment and should be offered alternative treatments including removal of bladder  and other bladder preservation treatment such as BCG +Interferon, Gemcitabine + Docetaxel sequential treatment, other intravesical chemotherapy like Gemcitabine, immunotherapy, etc.  The adequate BCG treatment is defined as 5-6 weeks induction course + 2-3 weeks maintenance course.  So, in your case, you have not been treated with adequate BCG treatment.    I would not know what the pathology report said from the initial TURBT.  But if I recall correctly, if the recurrence after 6 weeks induction course is T1HG, it is considered as BCG unresponsive.

I would seek for a 2nd opinion from a reputable cancer center if possible.

best 
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2 years 2 months ago - 2 years 2 months ago #61180 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
duhhawaiian:

I don't know what would work best for you but I can tell you my personal experience. I have CIS and originally had the 6 week induction
phase of BCG. Had the follow up cystoscopy and cytology. They were suspicious. Had a turbt and biopsy showed CIS. Dr said that does not necessarily mean BCG failed for me because on some patients it takes a little longer to work, I believe he said it could still work up to 6 month's. He did another 6 week induction of BCG on me. My next three cystoscopies have been negative. Last two cytologies have been negative. Waiting for the results of latest cytology that was done on 2/4/22. Bottom line is so far staying with BCG has worked for me. But your decision will be between you and your doctor. Each of us has unique circumstances. Fortunately my CIS did not spread all over the bladder. It was just small area's on the dome and one side. My doctor does three weeks of maintenance BCG after my quarterly cystoscopies as well. So far I have had 18 BCG treatments.

I've read that Gemcitabine can be an effective treatment as well. 

Good luck on your decision and keep us posted! We all learn from each other.

Clyde
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