when it looks like all else is failing

[L. Ann Sinopoli]

My mother has done 6 rounds of Vidaza, has consulted Sloan several times for MDS. It looks right now that Vidaza is not kicking in. Bone marrow biopsy have not really changed from before Vidaza to when she completed 4 rounds. More transfusions, dehydration, feeling like garbage, even the procrit seems like it’s not doing anything anymore besides making her feel worse. Bone marrow transplant is not an option, it would be no guarantee at age 75 it would work and mom doesn’t have it in her to done all what’s involved. Has anyone tried Cannabis oil or such? i have only found a few articles on it, but what i did read looked liek it might help in several ways. Asking her doctor today about it, it’s not going to hurt asking.
Let me know

[Mark Simpson]

I have heard of people using Cannabis oil. Myself, I have not. Would like to. Doctor would not ok card.

[dj carroll]

LAnn Don’t know what claims are made for Cannabis oil and wonder in what ways u believe it might help?

Going though the same path options weighing. I’m almost a decade younger and don’t feel bad after 3 rounds of Vidaza. The first one was the worst but only with appetite suppression and extreme tiredness.

[Mark Simpson]

Cannabis oil should have THC in it to work? There are a lot of knock offs out there. Myself I can’t do any chemotherapy until I get rid of my Foley catheter and Ostomy bag. Too much of a risk for infection.

[dj carroll]

Cannabis oil should have THC in it to work

Work how? Prescribed Marinol during auto-transplant in ’09. Don’t remember if it was for pain or nausea/vomiting. Only made me more lethargic & I stopped taking it.

Found this reputable site for information: https://www.nap.edu/read/24625/chapter/2#7

Report Conclusions by category start on Page 7 😀

• This reply was modified 6 years, 8 months ago by dj carroll.

[Deb Ray]

Definitely try to get your Dr. to approve marijuana. Not CBD oil only, the THC has been proven to slow cancer.

Here is my husbands experience (he’s 54 years old):
About 4 years ago he started getting symptoms that are consistent with MDS.
Colorado passed recreational marijuana a few years ago, and about 2 years ago he started taking 10mg THC gummies every night before bed. He gets pain relief and sleeps much better.
About 6 months ago he was finally accurately diagnosed with MDS and is a candidate for a stem cell transplant. He took 4 months of Vidaza and after his 2nd bone marrow biopsy came back with no change in 6 months, they put him on a maintenance dose of Vidaza. We believe he has had symptoms of MDS for about 4 years, he is still in the earliest stage of MDS with 1 blast, and has taken 10mg of THC every day for 2 years.

While no one can say how fast the MDS would have progressed without THC, I can tell you how slow it has progressed with THC.
Do your research on THC & cannabis a move to Colorado if you have to 😀

God bless you and your mother on this journey.

[Allan Romriell]

Deb,
Is the pain relief related to MDS or other issues? I have a hip that I injured many years ago and the last few months had been getting worse, and making it difficult to sleep. As it was getting worse I was diagnosed with MDS so I know hip replacement is out. I have tried several things to get relief when I sleep but with most anti inflamitory drugs being blood thinners I try not to use them much since my diagnosis. My brother lives in Colorado, maybe its time for a visit…..

[tam]

Allan,
I suggest you purchase a quart of organic tart cherry juice. Each night a half hour before bedtime mix 4 ounces of tart cherry juice and 4 ounces of water together and drink. No need to gulp it down just drink at a normal pace. You should sleep better and you will have more vivid dreams. We purchase the Lakewood brand which is pure organic with No Added Sugar and not from concentrate. Give it a try for a couple weeks and see what you think.
Tom

[Allan Romriell]

Tam,
Thanks for that, I have heard of this before, unfortunately I am quite allergic to many fruits and cherries are one of the worst, they make me quite ill so I have to avoid them. Thanks again

[Deb Ray]

Allan,
Not just MDS relief, cannabis is known to reduce inflammation, slow cancer growth and help you sleep.

This is important – edibles take about an hour to feel any effect, but the effect lasts about 5 hours. That’s why they are so good at bedtime. Smoked cannabis works much faster (5 min), but tappers off pretty quickly. My husband usually takes a couple puffs and an edible when he is ready to go to sleep and it overlaps perfectly.

Warning – Edibles are usually very concentrated for people that have built up a tolerance. Don’t take more than 10mg THC until you see how you respond, maybe even 5mg the first time.

Google this: Cannabis and : inflammation, cancer, Alzheimers, neuropathy – we need more research!

[Raghda Vanderpump]

Hi Lann,

I am so sorry to hear that Vidaza didn’t improve your mom’s condition. However, I read that it doesn’t show much effect for low risk MDS patients. Have a look at this video https://youtu.be/vB7bpRlOONA. It talks about the different responses to Azacitidine

All the best for you and your mom

[Author]

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