Marrowforums

Marrowforums (http://forums.marrowforums.org/index.php)
-   Alternative Treatments (http://forums.marrowforums.org/forumdisplay.php?f=16)
-   -   Cannaboids for MDS Treatment? (http://forums.marrowforums.org/showthread.php?t=3995)

bowzer Thu Dec 26, 2013 02:53 PM

Cannaboids for MDS Treatment?
 
Hey everyone,

I'm on here looking for some feedback. I just joined the site, but have secretly spying on all your posts.. =] My father has MDS and wel he's not doing too well.

He was doing ok for a while and went four months without a blood tranfusion. The doc started him on a light chemo with no effect. After he stopped the chemo.. it went downhill from there.

He has no energy, can't get out of bed and just recently lost his appetite. Tried Revlimid for two days and started bleeding.. he's off of it now.

I have some friends that swear by the use of cannabis/cannaboids. and I can't find much information with regards to it's use with MDS patients.

Does anyone have any experience with marijuana. How has it affected your blood levels?

Some people have recommended it in a food form factor (brownies and cookies).

Any type of feedback is welcomed.

Thank you in advance!

-Jay

sbk007 Thu Dec 26, 2013 06:31 PM

If it had half a chance of working I'd be on my way to Colorado right now.
Don't know how it all started but some claim that hash oil cures cancer. Problem is those people claim it cures everything.
Don't know how old your dad is but if he tokes up or eats a hash brownie he could get really tired, dizzy, etc. or it might have no effect at all.

bowzer Thu Dec 26, 2013 08:33 PM

Thanks for your input SBK007.

I've seen ton of sites supporting Marijuana use vs cancer.. Leukemia.. etc. How it can stop cancer growth.. etc. Even on cancer.org they have some inconclusive evidence.
http://www.cancer.gov/cancertopics/p...essional/page5



I used to smoke for recreation.. so I know how it could possibly help with pain/side-effects and for sure his appetite loss.

But I've come across articles where they suggest it could possibly make an anemic type disease worse, etc. Nothing directed specifically towards MDS. I guess I'm reaching out to people with any experience on this matter. I'm just being careful I suppose since he's pretty fragile.

sbk007 Thu Dec 26, 2013 09:17 PM

The way I see it the research interest lies in its anti-nausea and pain relief. I don't see anything that suggests it may cure or stop progression. Maybe once its legal the scientists can get more of it and try some more experiments but for now there's no evidence that would suggest it has any effect on cancer. Anemia and anything that makes you tired or dizzy don't mix.. I haven't seen anyone mention cannabis but I haven't been here that long. You can use the search feature and see if anyone ever referenced it.
Good luck to you and your dad. Let us know if you try it.

Kathy S Thu Dec 26, 2013 11:15 PM

I did some research on HEMP oil. Ordered some, such a bad taste my husband did not like it. You can read on the internet how to make your own. Again they claim it cures many things, but who really knows. Good Luck. I really can't figure what anything can hurt at this point..

Marlene Fri Dec 27, 2013 11:05 AM

There are two different types of hemp oil. One is like the flax seed or borage or primrose oil with the essential fatty acids and the other made from marijuana. I believe it's the second that has the cannaboids you are looking for. You can google Rick Simpson oil and find quite a bit of info on it. I think the most amazing stories I've seen have been with epilepsy and how it can control them.

CNN did a profile on it earlier this year and there was a PBS documentary a few years back. Both very interesting to watch.

I'll look for the links and post them.

Like everything else, not everything works for everyone. And depending on far along the cancer is, will also make a difference.

Marlene Fri Dec 27, 2013 11:35 AM

All very interesting
 
Here are the two programs on MM.

http://watch.montanapbs.org/video/1825223761/

http://www.youtube.com/watch?v=Z3IMfIQ_K6U


This last one is on juicing the raw plant. Got to taste pretty bad. Has no psychoactive effects.
http://healthmaven.blogspot.com/2012...-cannabis.html

sbk007 Sat Dec 28, 2013 08:55 PM

He was asking if anyone on here has tried it..

bowzer Tue Dec 31, 2013 01:50 PM

Thanks Marlene and kathy for the information. Yeah.. I've looked into it a bit, but found little feedback from "real people". Most of the sites are just advocates of marijuana.. so of course they'll promote the product / medical use. So yes.. as SK posted.. I guess I'm looking for any feedback from people that have tried it.

How did it affect your blood test results?

Fix any symptoms? etc...

There is a lack of non-positive feedback from my research... which is sketchy imo.

Marlene Tue Dec 31, 2013 02:40 PM

You might have already checked this out, but if not consider contacting a doctor in maybe California or Colorado who incorporates MM into their practice to see if they can connect you with some patients who have experience with it.

I would venture to say that most won't post about if they are in a state where it is not legal. Makes your search even more difficult.

Good luck with your search.

Alvin Tue Jul 8, 2014 12:39 PM

cannibidiol
 
I am 81 yrs. have had MDS for 2 yrs. I have been getting 2 units of platelets every 9/10 days all that time. I started 3 drops of cannibidiol a day 2 months ago. I have now gone 35 days without the need for platelets.
I stress CANNIBIDIOL is not hallucinogenic.

Marlene Tue Jul 8, 2014 12:45 PM

That's promising and with such a small dose. How did you decide on the dosage? Has it helped in any other areas too?

I wish our state allowed for MM as I think it can help many people.

Alvin Tue Jul 8, 2014 02:16 PM

cannibidiol
 
The dosage is just a guess at this time.
I am in Canada where the stuff is not approved.
CBD is the active ingredient in Cannibidiol, it is legal in all 50 states in the USA. There is lots of info on the internet about this.
Alvin

Marlene Tue Jul 8, 2014 02:38 PM

I think there are two types. One is made from marijuana that has a high Cannabidiol content and then one made from hemp plants that contain Cannabidiol in a smaller amount. The first one is not legal in all states. While the second one is. At least that's my understanding.

Here's an example of the second one:
http://www.bluebird-botanicals.com/C...__CBD__oil.php

Or am I missing something?

sbk007 Tue Jul 8, 2014 05:11 PM

Marlene, Check out eBay and amazon. Lots to choose from. If I thought it had half a chance to work I'd drive to CO or WA right now and get the stuff that is the strongest possible hallucinogenic and contains the cannibidiol to increase my platelets.

Alvin, What brand are you using?

Marlene Wed Jul 9, 2014 09:04 AM

SBK....I hear tourism is way up in Colorado.

While John does not need to boost platelets, I'm always on the lookout for things to put in my arsenal just in case.

I'll have to look on Amazon some more.

sbk007 Wed Jul 9, 2014 10:22 AM

Marlene,
Alvin was kind enough to respond to me and said he was using
15% ( real scientific hemp oil ). Its about 175.00 for 3 grams..
I see it on ebay and amazon. I hope it works. No surprise that tourism is booming in CO.. :). The residents most likely don't touch the stuff :), like the Netherlands.
Whats confusing to me is that his infusion level for platelets is 8(sounds low)..

Marlene Wed Jul 9, 2014 10:53 AM

Thanks.

John's threshold for platelets was 8K also. In cases of SAA, they will even go as low as 5K as long as there is no prolonged bleeding. Even though he only had a few thousand, his own platelets functioned very well. Even better than transfused ones. His clotting time were good too.

Even though there are established guidelines for transfusion thresholds, I think you need considered your body's preferences. We knew folks who could not function when their HGB was at 9 or 10, while some did well at 7. So it's good to have a doc who will work with you to figure it out.

msmichelle Wed Jul 9, 2014 10:58 AM

Hey bowzer...my daughter (22) has MDS she was diagnosed 2 years ago...she also has PNH and had that first, but that's another story...my experience with cannabis is this...I personally have smoked weed for 30 years...I have NEVER hallucinated by the way...after diagnosis we made several changes to lifestyle and diet...my daughter used to smoke cannabis a little but not much...I suspect I may be judged harshly for this next statement, but here goes...since her diagnosis I have encouraged her to smoke a little cannabis everyday...at the very least I knew it would help with her stress levels, her appetite and sleeping...what has also happened is that she has become stable, which is saying something because for at least three years prior to the MDS diagnosis she just kept getting worse...it was like we were on a roller coaster we could not stop...it has actually been so long now since she had a blood transfusion that we can't recall when it was...that could be the weed - lol -...but seriously she is doing really well...she saw her specialist recently who is quite surprised by her progress and said whatever you are doing, keep doing it...in terms of cannabis oil being a cure all, I have researched this for some months now and have been working towards my daughter trying this approach...we have only been able to start her on the oil this week actually...we live in Australia where there is no such thing as medicinal cannabis at this time - I mean in legal terms...so there is no doubt we are taking a risk but aint' nothing standing in the way of me getting my daughter well...of course I cannot be certain how she will respond to the treatment but we are both hopeful...in relation to the cannabis, THC gets you high CBD does not...you may have noticed CBD is proving very effective in the treatment of children with diseases that cause seizures...as a result, there are many that have focused only on CBD...however, after much research, I believe the whole plant is best...by that I mean cannabis oil that contains both THC and CBD, with a higher quantity of THC which is how the plant occurs naturally...we are also keen to add cannabis to our juicing regime...cannabis only becomes psychoactive when it has been heated so juicing raw cannabis will not get you high...anyway, hope this helps...if you do decide to give cannabis a go just be careful not to get ripped off...there are a lot of caring, good people in the cannabis community, but there are of course others that will rip you off even if you are sick...best regards...

sbk007 Wed Jul 9, 2014 01:03 PM

The stuff they call "Edibles" (Infused with THC), now legal in CO & WA, seems to cause hallucinations if you eat enough of it. There have been many reports of that. Officials are looking at ways to control the amount of THC they can infuse into cupcakes and the like. People end up in the hospital because they ingest too much. there's a strain that has no psychoactive properties that people use for seizures and make trips to CO to get it.

Chirley Wed Jul 9, 2014 11:25 PM

My haem recommended having it in cookies. It's illegal here in any form and I've never tried it.

Alvin Thu Jul 10, 2014 08:10 PM

cannabidiol
 
So many people do not seem to get it. Cannabidiol has very little THC if any,
it is used for it's CBD content. Please look it up, this is not the Hemp that gets one high. I can't understand why everyone gets the two things mixed up.
Alvin

sbk007 Thu Jul 10, 2014 08:50 PM

Alvin, We get it.. Someone switched topics and went off on a tangent.
THC supposedly LOWERS your RBC count, and WBC. If you want to give blood and they smell pot, they won't take blood because it reduces RBC content., WBC decreases are attributed to the so called immune effects of THC much like anti-biotics in theory anyway. At least that's what I read in my travels. Could be wrong..
All the best.

oldBuck Sun Aug 31, 2014 07:58 PM

I have been using Cannibis oil for 3mths (MDS)
 
I started Cannibis oil in may of 2014. I have written publicly about my MDS . Yes Cannibis oil has help my MDS. You can read my story at

rumormillnews.com

My trip down cancer highway parts I to IV can be found in the archives .just search for articles by oldBuck or my trip down cancer highway ( all post from Feb 2014 to aug 2014

scully Mon Sep 1, 2014 03:37 AM

Not for me
 
My opinion and my opinion only. I was diagnosed in 2010 with mds since I have had removed a basil cell carcinoma on right temple and a Squamish cell carcinoma on the other. I have had a kidney removed from clear cell carcinoma, Bottom line I am very young 45 at diagnosis. I did not live a clean life prior to diagnosis. But I have tried since to do the right thing. My question would be what benefit comes from marijuana over other meds? Appetite? Probably not, There are many other alternatives to increase apetite. Pain, I doubt it since by itself there is not much with MDS. I don't know the answer but I do not think cannabis is it. Just my observation.


All times are GMT -4. The time now is 02:36 PM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org