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HPV Anal Cancer RSO oil

sail854
Posts: 4
Joined: Feb 2019

 

 

eihtak
Posts: 1385
Joined: Oct 2011

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

sail854
Posts: 4
Joined: Feb 2019

Hello Katheryn,   There are many people who do only use RSO oil as there treatment.  And per Rick Simpson "THC" is the cancer killer.  

Thanks for the response.  And always get a secound opinion!

https://medium.com/@ericgeisterfer/23-people-who-beat-cancer-using-cannabis-oil-only-c1b285e31d62

eihtak
Posts: 1385
Joined: Oct 2011

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
Posts: 4
Joined: Feb 2019

So you should always believe your Doctor?  I was lied to at MD Anderson in Gillbert. I had a call from the Dr. who told me I was a advanced stage 3 with a 5cm tumor in Dec of 17 and I needed to get in treatment ASAP!. I took my MRI report to my primary care who referred me to another Cancer Dr. who read and told me the report clearly states a 1.3 cm Nodule with little to no change from the year before. And a Biospys shortly latter confirmed no invasive SCC.

I reach out to Houston explained what happend.  That Doctor well she no longer works at MD in Gilbert!

Open your Minds!   There is nothing wrong with doing loads of carrot juice, Essiac Tea, Oznoe Steam baths or what ever helps put your mind at ease.  

Diet is so very important! And so is Treatment if you need it.

 

 

eihtak
Posts: 1385
Joined: Oct 2011

I am very sorry for the misguided information you received from a hospital that is considered to be a leader in cancer treatment and if that doctor was unprofessional in practice, glad they are no longer representing that facility. 

Unfortunately on the journey of cancer we all too often have to be our own advocates. We do need to keep an open mind and ask questions as well as not completely rule out less traditional options these days. It is surely a field that is ever-changing and the most effective methods of treatment many years ago are likely not going to be the same in the years to come. It is sometimes difficult to know whats best when you're in the midst of things and searching for a way to survive at a time when you feel that odds are against you. So....do you "always" believe your doctor, no, but you do your homework, you seek the most experienced care available to you for your specific cancer (as that is so so important here.) You hope to find a doctor who you do trust and respect (I am grateful I have done that.) We all have to consider things like related family concerns, insurance expenses, location and what is reasonable travel or not, and all other individual specific situations.

I couldn't agree more on the health benefits of mindful diet and exercise. For me, I also "put my mind at ease" through my practice in faith.

Again, what works for one is not guranteed for another, yet some methods (for now) because of their long term proven effectiveness seem to be most preferred.

Thank you for pointing out and reminding us to stay open to all possibilities and please keep us posted as you move forward in health.

katheryn

annie4145
Posts: 48
Joined: Jul 2018

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.

sail854
Posts: 4
Joined: Feb 2019

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.

eihtak
Posts: 1385
Joined: Oct 2011

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's picture
mp327
Posts: 4394
Joined: Jan 2010

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.

eihtak
Posts: 1385
Joined: Oct 2011

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

mp327's picture
mp327
Posts: 4394
Joined: Jan 2010

I totally agree with everything you stated.  I just worry about those "miracle cures" out there touted by one individual using their name.  You are right--peoples' desperation can lead them to such sites.  If it works for them, great, but I am a believer in traditional medicine.

mp327's picture
mp327
Posts: 4394
Joined: Jan 2010

I am a believer in traditional treatment--chemo/radiation.  I'm a 10 1/2 year survivor.

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