HPV Anal Cancer RSO oil

Hi,

I am sorry for your confusing diagnosis. I'm sure the changes in staging are frustrating and make getting proper treatment a concern. I'm the kind of person that prefers to error on the side of caution so I myself would be inclined to follow the advice of chemo/rads. That being said, no two of us are alike and no two of us react exactly the same to the same treatment. We are faced with tough decisions on this journey and I will pray you make the one that is best for you. I am learning more every day (since my initial dx of anal cancer in 2011) but even after a couple recurrances, have no personal experience with some of the newest therapies involving CBD oils.

HSIL means there have been some serious (HPV) related changes in cells. It is my understanding that RSO (Rick Simpson Oil) contains high levels of THC. There is just not enough reputable information yet as to the curative ability in such an oil. I imagine it is possible to get the same level of effectiveness from a different CBD oil with out the psychoactive effects reported by some who have used RSO. (Though there are some who may be seeking that as well) From what I've read, these oils in general are not meant to be a replacement for protocal treatment that may include a combination of chemotherapy, radiation, and or surgery, but rather in conjunction with and more to relieve negative side effects of such.

I hope that someone with more information on this topic chimes in and that you keep us posted as you move forward.

katheryn

I feel that you are taking a big gamble.  I think that it would be fine to use if traditional treatment doesn't work, but I wouldn't use it instead of traditional treatment.  That is just me though. It seems that your cancer is not under control at this time.  Every week that there a tumor there, there is a risk of it spreading further.  It is likely that it has grown.  But even if it shrunk slightly, it did not disappear, so you might want to consider additional treatment.  I wish you the best in your fight against this disease.

This is a small study and from last year so research in this area has been ongoing, but I thought there may be some points of interest on this topic:

https://integrativeonc.org/news/research-blog/277-does-cannabis-cure-cancer

I try to keep an open mind to all options and agree with the importance of second opinions from responsible professional doctors, but this stood out to me:

"But it is irresponsible and harmful to say cannabis cures all types of cancer. Research also shows alternative medicine use may delay conventional treatment, resulting in worse cancer-specific outcomes."

sail854 said:

Under Control?

My last Biopsys were neg for 18mm Plyop and HSIL for the other 3.  So at this time it is under control.  The people that read the MRI were not aware of my Fistula that is all scar tissue, Even thou I tryed to explain the trauma to the area.  When you fillet a Fistula it opens the whole tract from inside to outside. Which means there is a raised ridge from the opening just outside the Anal Verge to the Fistulas internal anal opening. Its very easy to think this is a Tumor if you dont know the History. It seems unless a Doctor explains to them they dont want to listen!!!

I have no problem with treatment but if I am HSIL there are treatments for it I dont need full blown Radiation/Chemo. But they all want to wait for it to turn to Cancer because there is no Money in treating low or High grade dysplasia.

Also there was a study were they gave people already infected with the HPV infection the Vaccine and about 50% went from HSIL to low grade and some it went away altogether.

Why sit and wait for Low or High Grade Dysplasia to Cancer?  But that seems to be what from my experience they do!

Its always good to have an open mind.

Info:

I have no personal experience with UCSF, but have heard excellent reports of work done at the dysplasia clinic there. I believe one of the mentioned doctors associated is Dr. Berry.

mp327 said:

eihtak

Kathryn, I had the pleasure of meeting Dr. Berry at the IANS (International Anal Neoplasia Society) a few years ago when I, along with 2 other survivors, spoke at their conference.  He really impressed me as being very knowledgeable about anal cancer and I would consider him to be one of the best doctors in the United States in his field.  I also had the pleasure of meeting Dr. Eng from MD Anderson.

As for Rick Simpson, I don't know a whole lot about him and this RSO stuff, but IMO, it sounds like "snake oil" with him as the salesman.  I am not a believer.  Surviving 10 1/2 years after traditional treatment of chemo/radiation has helped form my opinion.  However, I follow that by saying that everyone is entitled to their own opinion.

I think it was from one of your posts after that conference that I became aware of Dr. Berry, then not long after, his name came up in one of my other support groups with very high respect. Dr. Eng has been in conversations throughout my time here and in my most recent radiation treatment for mets to my lung my radiation doctor (who did some training at MD Anderson) agreed to discuss my case with her to confirm my radiation plan. 

I am in agreement with you on RSO at this time, but also am mindful of one's feeling of being desperate and easily takin in by the promotion of a miracle cure. Any stage of a cancer dx as we all know is a tough spot to be in and another reason it is so helpful to rely on the wealth of positive support we have here. I think there are some justified new therapies on the rise for anal cancer, but I myself am not convinced that RSO has made that list. These oils are not regulated and it is impossible to get consistency...more clinical research is needed. For those who seek to go that route, I genuinely wish them a life of health and would be truly happy to be proven wrong and know that we have yet another option.

katheryn