Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@beachdog

@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.

Jump to this post

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

REPLY
@annebauer19

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?

Jump to this post

@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.

REPLY
@beachdog

I'm at the dispensary twice a month buying THC heavy and CBD heavy RSOs. If you have access to Grow Healthy dispensaries they use CO2 distillation process which is cleaner than traditional acetone distillation.

Jump to this post

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?

REPLY
@annebauer19

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

Jump to this post

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.

REPLY
@beachdog

I'm at the dispensary twice a month buying THC heavy and CBD heavy RSOs. If you have access to Grow Healthy dispensaries they use CO2 distillation process which is cleaner than traditional acetone distillation.

Jump to this post

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.

REPLY
@dotmoto

Cannabis RSO.

Jump to this post

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

REPLY
@dotmoto

Cannabis RSO.

Jump to this post

I'm at the dispensary twice a month buying THC heavy and CBD heavy RSOs. If you have access to Grow Healthy dispensaries they use CO2 distillation process which is cleaner than traditional acetone distillation.

REPLY
@trp

Thanks so much for your response. I guess I know from my google search activities that it's going to be a long road to recovery. I just get really apprehensive when I think about everything that's going to be coming out of my insides. I'm not familiar with the Appleby, but I did a lot of research on the Whipple procedure as that's initially what I thought I would be having.
Thanks again for the encouragement!
Tim

Jump to this post

Appleby is done when there's no cancer in the head of the pancreas but requires additional duct and artery resections. Both are intense and should be performed by surgeons with tons of experience with successful outcomes.

REPLY
@annebauer19

Hello again: thanks for the comments about PET scans. My husband has started chemo this week so we are just learning the rhythm of the 2 week cycles. So far his biggest complaint is stomach pain which comes and goes. It's not clear if it's related to the tumor. Docs seem to be unsure. Has anyone experienced this and found something that helps?? I am trying to keep up his spirits and mine. This pain seems to drain him.

Jump to this post

Cannabis RSO.

REPLY
@beachdog

Hi Tim, good luck with your treatment and surgery. My wife seems to be at the extreme for what her post treatment and surgery life is like but then her surgery was pretty extreme too. Her surgery was modified Appleby not Whipple like most. She also lost her gall bladder, spleen, adrenal gland 23 lymph nodes and 60% of the pancreas. As far as we know almost a year and a half out, the pancreas makes insulin and she not being treated for insufficiency other than Creon for digestion. Her biggest problem is the bile dumping due to no gall bladder. Everyone is going to be different. One thing that the doctors seem to be overly optimistic is how long your recuperation and achieving a new normal will take. They might say 2 months of even 6 months but don't be impatient it could take longer, it did for my wife. Our prayers are with you.

Jump to this post

Thanks so much for your response. I guess I know from my google search activities that it's going to be a long road to recovery. I just get really apprehensive when I think about everything that's going to be coming out of my insides. I'm not familiar with the Appleby, but I did a lot of research on the Whipple procedure as that's initially what I thought I would be having.
Thanks again for the encouragement!
Tim

REPLY
Please sign in or register to post a reply.