Pancreatic Cancer Group: Introduce yourself and connect with others

Not sure what RSO is. We have thought about cannabis. Is there a particular formulation or ratio of thc to code that works better?

RSO is Rick Simpson Oil.
http://ricksimpsonofficial.com/ricks-page/
It's easier to buy it (than make it yourself) where medical or recreational marijuana is legal. Most commercial grades of marijuana concentrates attempt to only isolate the THC or CBD, RSO is a concentrated form which retains all of the natural properties of the plant it was distilled from. My wife uses RSO for pain relief, nausea supression, appetite stimulant and sleep aid.

If you truly want to help through pancreatic cancer journey you have to be your own advocate and seek answers that fits personally.
Not rely on one source.
Learn all you can.
Read, call cannabis dispensaries, and ask your Mayo palliative Dr. (Ours was very knowledgable)
Twelve people who try cannabis results in twelve different effects.
With any RSO products you start with a very tiny minuscule amount like the size of a half of a kernel of rice.
Go slow.
Results for us was extraordinary and life changing.
Patient no longer takes any cannabis.
Patient was stage four, no surgery, and is six years into remission and
CA 19-9 is rock solid at 7.

Thank you for the information, I will look into it. My husband doesn't like the feeling of being high, does the RSO have this effect? And I have read that you have to start with low doses. I know many of the CBD products do not. Does it take some time to be effective, it seems to me I read that somewhere. I know there are people who believe it has anti cancer properties. I would think to use it for pain and nausea and to help relax?

@annebauer19 There are literally thousands of strains of propogated cannabis. They all have different properties but in general, the more THC the stronger the anti-nausea and appetitie stimulant but also potentially the high and sleepiness. The higher the CBD or even CBD with virtually no THC, the less noticeable impact except for pain relief.

If you are in a state with medical marijuana laws like Florida you start by speaking with a Medical Marijuana MD. In my wife's case, a friend of hers was an MD in a GP practice who switched over to an MM practice. Her MM MD and Oncologists are believers that cannabis has anti-cancer properties in addition to the physical and mental benefits. Her MM MD specifically believes that RSO is the best approach.

As far as onset of effects, it depends on strength of the product, dosage and method of ingestion. Smoking and under the tongue are the fastest, capsules next fastest and edibles the slowest. I make RSO into capsules of approximately 30mg THC doses. I buy RSO of Indica strains with 80-90% THC for nighttime use and CBD RSO with less than 1% THC for daytime use. My wife would have stopped eating completely without the stimulous provided by the THC. Sha also wouldn't sleep without it. (she has also had a prescription for Marinol which is pharmaceutical synthetic THC which she found to provide no effect at all)

Everybody is different and the products available to you legally might be of differing quality. I wouldn't recommend street procucts which you never know what you're getting. I rely on regulated products which are raised organically and are lab analyzed. Unfortunately, everything that we know about MM is still anecdotal so you have to research, try and see what works.

Start with a discussion with your oncologist or other specialists. Good luck.

Thank you for the details of your experience. I was able to find both forms of RSO that you describe. What I was wondering is whether you just take them for symptom relief as needed. Or if there is benefit in taking on a daily basis. Again I expect that we need to find out for ourselves

In my wife's situation, as needed, is everyday.

Hi Tim,
Welcome to Mayo Connect. Thank you for your kind words. My surgery was successful and I am still healing. Each day following surgery will bring you a step closer to getting back on track to living YOUR life. I don't say this flippantly, but try not to borrow worry from tomorrow or worry too much about the surgery. I have a type A personality and had the proverbial laundry list of things I wanted to accomplish prior to surgery and didn't allow myself to just live in the moment and enjoy life. Regarding your questions, since my gallbladder was removed during emergency surgery in 2009, I did not need to have that done during Dr. Cleary's surgery for the pancreatic NET. It is common to have the gallbladder, spleen and pNET removed at the same time as they all converge at the biliary tract. You will also have a nasogastric tube placed in your nose during surgery that will stay for about 2 days prior to having it removed bedside. It's not a big deal really- it just drains the nasty stuff from your gastrointestinal tract. I will say that overall my recovery was not that bad, however my ribs on both sides ached and the incision to remove the pancreas (4-5 in) hurt for about a month after surgery. It also took about a month before I could comfortably lay flat in bed and I still have issues with the abdominal muscles hurting when I have a busy day. Ice packs are a great thing to have on hand when you arrive back home. I still find myself holding my abdomen at various times just for comfort from the pain (especially when I laugh) which is ironic. To combat the often intense rib pain and incision pain, Dr. Cleary prescribed tramadol and oxycodone, which worked beautifully and I only needed to take both for about 2 weeks. I honestly have to say, the recovery isn't that bad- which I was surprised and thankful for. As for pre-op suggestions, I would just recommend that you have some precooked meals prepared and frozen so that you can just rest. They don't want you to lift anything more than 8 pounds (equal about 1 gallon of milk) for about a month. I am 54 and was so tired for about 3 months following surgery, and ended up taking naps when I was tired which helped me heal faster. You will LOVE Dr. Cleary and his AWESOME team! They are top-notch in their profession and are all so incredibly empathetic and caring. Don't be afraid to speak up if you have pain or questions. They are always ready to answer any questions you may have. Also, be sure to take whatever medications they prescribed until you feel well enough to function without them. Initially I tried to tough it out without anything and it only hampered my recovery. While you are in the hospital, the surgical team will see you daily. It's a great time to tell them how you are feeling, ask any questions and share you concerns. You can eat and drink anything after your surgery (the food at Mayo is SOOOO good)! I hope this helps bring you some peace. If you can think of additional questions, I am an open book and would be more than happy to answer anything I can. (I also sent you a private message with more details about my surgery). Please know that you will be in excellent hands! I had my first cancer surgery (lung) at Mayo in 2000 and it was also successful. Mayo is the ONLY place I seek care for my extensive medical history. This is without a doubt a challenging time for you and your family. I will keep you in my thoughts and prayers as you navigate your diagnosis, emotions, fears, and SUCCESS! I will support you during every leg of the journey until you rediscover your strength.
If you need a listening ear, please feel free to reach out to me. I may not have all the answers, but I can share my experiences.

"Cancer cannot cripple love it cannot shatter hope, it cannot conquer the spirit." - Unknown

Warmest Regard,
Sherry Kirby

Wow! Thanks so much for taking time to share your surgery experience with me. You cannot believe how much your words have help to ease my mind about what I have ahead of me. I’m sure I’ll have additional questions so thanks in advance for all the help!
Tim

Sherry, I agree with @trp - wow! That is information that one can't get anywhere else. Thank you.