Cannaboids for MDS Treatment?

[bowzer]

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]

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]

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/pdq/cam/cannabis/healthprofessional/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]

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]

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]

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]

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/2012/01/power-of-raw-cannabis.html

[sbk007]

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

[bowzer]

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]

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]

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]

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]

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]

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/Cannabidiol__CBD__oil.php

Or am I missing something?

[sbk007]

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]

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]

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]

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]

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]

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]

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

[Alvin]

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]

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]

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]

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.

[Alvin]

Up Date
After 6 mo. on cannibidiol ( CBD ) I have now gone from getting platelets every 9/10 days to the last period of 76 days.
Hemoglobin from 12 days to about 30.
Time between trans. getting better every day .

[bailie]

Alvin, what type of MDS do you have?

[sbk007]

Hi Alvin, Thanks for the update. I am happy the CBD has been working for you. I forgot to ask you this last year but do your doctors know that you are using this stuff?? I'm curious because your results have been remarkable and I'd suspect your doctors would want to know even if it isn't legal in BC.
Take Care and continued good fortune.

[Alvin]

update
I started CBD in March/14 and my transfusions have gone from every 9/10 days for platelets to where I am now at 89 days and holding. Hemoglobin transfusions have gone from every 15 days to now about 40 days.

[Marlene]

Thanks for the update. Glad you are having an improvement.

[bailie]

Alvin, the dangerous use of CBD for "MDS" is that there are many variations of MDS and there are many variations of CBD (at least in our state where it is legal). The different combinations can be disastrous and deadly. You might be very lucky in how it works for you, but a blanket endorsement for MDS would be terrible. I had a relative (who knew zero about MDS) suggest that I use.

[bailie]

Alvin, what type of MDS do you have? What are your numbers?

[Marlene]

I've never heard of CBD or MM being deadly. How is it disastrous/deadly for people with MDS?

[bailie]

Marlene, in my case I would not have known how it would interact with Vidaza and Relimid. If I would have passed on Vidaza for a couple of months in favor of CBD I would have been in a terrible time crunch.

I don't think it wise to experiment with diseases with products that are totally unproven.

I am curious if Alvin is following a normal course of treatment while using CBD? What does his doctor say about this? Does Alvin know other successes for using CBD as a treatment for MDS? Where are the reputable studies supporting the use of CBD for MDS? What types of MDS has CBD been successful?

It is an invalid/dangerous blanket statement to recommend CBD for MDS.

[Alvin]

I have now gone 90 days without a platelet transfusion. I started CANNABIDIOL on March 20 this year. Transfusions went steadily down from every nine days to 90 and holding.
This non hallucinogenic hemp product has saved my life.
Alvin

[bailie]

Alvin, what type of MDS do you have? What are your numbers? What is your age? I am wondering because I have had a SCT yet have only had one transfusion (platelets) in my life.

[Peachy]

Alvin - I too would like to know what kind of MDS you have and what your counts are. We have been researching this option as well. Peachy

[Rhys]

Hello ALL

I have just been diagnosed with MDS. I am 55 years old and need more info than the doctors have given me. I am on the cusp of Leukimia but not there yet. I have been reading on your site about using cannibidiol and wondering where I can get it. It looks like a promising cure and I would rather do that then take chemo drugs. Can anyone advise? Your help REALLY would be GREAT!

[bailie]

Be very careful. You have a tight timeline to get a handle on your MDS. Experimenting at this stage is not prudent. What are your blood count numbers? You are not going to get a "cure" from cannibidiol. MDS is a relentless disease and can be very fast moving.

[AliviaJane]

Hello,

My grandmother is 77. She was diagnosed with MDS in 2013. She tried Revlmid and promacta and another one. She did no better and no worse. Her doctor has told her that the only option left is chemo. She started a low dose of 5 days on 15 days off. Last week monday was her start date. Since then she is dwindling in front of my eyes. She is in pain and has had pains in her chest. She cannot eat and is beyond weak. She keeps getting a fever and tells me she feels as if she is fading into the woodwork and that her doctor is killing her.
She is refusing to do anymore chemo. I have suggested cannabis oil to her and she says she wants to try it.

[Rhys]

update
I started CBD in March/14 and my transfusions have gone from every 9/10 days for platelets to where I am now at 89 days and holding. Hemoglobin transfusions have gone from every 15 days to now about 40 days.

Did you go to a naturalpathic doctor to get the recommendation to use this and how did you come to using 3 drops a day? Was it trial and error?

[skepticaloptomist]

Hi all, I'm new to the forum. I too was diagnosed with MDS last May. Transfusions every two weeks or so. Started vidaza, getting ready to start 4th course. Have not noticed improvement. All my doctors say bone marrow transplant is the "standard of treatment". I don't care, won't do it. So.. I am trying to find a viral clinical trial. Until then I am ready to give cbd oil a try. I have read more than a few comments suggesting hemp oil. I caution those considering hemp oil, see the high times article [URL="http://www.hightimes.com/read/difference-between-hemp-oil-and-high-cbd-strains"]
My question for those who think CBD may help, how do you dose it? how often? Are there any studies?
Also, I have heard ordering it through the mail is sketchy. I don't mind going out of state to get it. Florida passed a law legalizing the use of "charlottes web" a type of cbd strain, then paralyzed the legislation with litigation. So if I can find Charlotte's web outside the state and bring it in, doubtful they would want the publicity of prosecution.

[Rhys]

http://www.ora.tv/offthegrid/article/grid-government-admits-pot-kills-cancer

Here is some good reading!!!

[Rhys]

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...

How much is she smoking on a daily basis? What is your dosage when taking CBT?

[donna j.]

Wonder about cbd for cgvhd. Anyone know?
donna

[Marlene]

Hi Donna,

I never thought about its use for GVHD but it makes sense that it could. Apparently others have too. Found a few items you might want to check out. You can search for CBD and autoimmune diseases also since the premise is similar to GVHD.

http://www.ncbi.nlm.nih.gov/pubmed/21673072
https://clinicaltrials.gov/ct2/show/NCT01385124
http://www.mor-research.com/project/cannabidiol-for-the-treatment-of-gvhd/
http://www.420magazine.com/forums/immune-system/172018-do-cannabinoids-have-therapeutic-role-transplantation.html

[donna j.]

Hi Marlene
Thank you for the possible resources. You are always a much appreciated wealth of information. I will review the material.
Donna

To Marlene and All:

I can't resist another question. After and during 8 phlebotomies, my ferritin rises back up. It initially was 5000 plus, did drop to 2350, go up to 2800, and currently is at 3400. My transplant Dr is not concerned but I am. I have begun photopheresis treatments (8 so far) for the gvhd. Do you have any suggestions? Thoughts? My Dr feels that cheleation therapy is not for me as I am generally drug sensitive.
This
Donna

[Marlene]

Ferritin is very reactive to any inflammation and when it's elevated like yours, it's not unusual to see it bounce around like that. Even the way they draw the blood can effect the reading. Since you're dealing with GVHD I'm not surprised that your doctor is not worried since GVHD is inflammatory. That being said, I too would still want to see that reduced to within a normal range especially if you have recovered your red cell completely.

John's experience with chelation was very tedious, slow and it pretty much caused digestive issues and eventually kidney stress. He too does not do well with drugs and never got a full dose of either deferral or exjade. He cannot do full phlebotomies either since his HGB is around 12 and doesn't rebound quickly. He only did 250 ml every other month. Phlebotomies are most effective way to quickly reduce the iron.

IMO, I would hold off doing chelation and resume phlebotomies when it makes sense. At some point, you may want to see a complete iron panel done to get the bigger picture since FE is so reactive.

Hope this helps.....M

[Umaterr]

Msmichelle

I too am interested in any advanced cannabidiol treatments. Sounds like your daughter is doing ok with her blood transfusions since using, is she still doing ok? Can you give me more details? I have been researching this a bit and there is so much stuff out there, it is difficult to determine what to believe. Any information you can share would be appreciated. Thank you

[Coppcat]

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

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.

Alvin, your success using CBD oil is exciting! Dr. M the Lyme expert from Hope, BC is where I first heard about your success. I have Lyme disease & follow Dr. M on Facebook. There is so much promising research being done with CBD oil & it has shown to kill the Lyme bacteria. My dad is 73 and was recently diagnosed with MDS-RCMD. It is all so new to us. His platelets are borderline low, hemoglobin around 105 & WBCs around 3.75. I'm wondering if you have noticed a difference either way in your Hgb or WBC. I am an RN and would have no trouble recommending CBD oil for my dad, however I want to make sure it would have no detrimental effects on his blood counts. I know the CBD has been like a miracle drug for Lyme patients. Any information you could share would be greatly appreciated. Dr. M is a brilliant man who has made a world of difference to Lyme patients. His advice & opinions are greatly respected & his research with CBD oil is ground breaking & sound. Thank you for sharing your experience. I hope it will continue to help you and many others.

[dgargac]

Looking for more recent activity on your daughter. With this thread being old, I'm being fairly desperate I know. My 21 year old daughter has a recent MDS diagnosis also. Have you continued with the cannibiods? Have you found any other alternative medicines that have helped with the various effects of both the disease and the treatments? Thank you in advance to anyone with more up to date information. 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...

[medicalenigma]

Hi Marlene, I too am getting ready to try CBD to help my MDS diagnosis. It is not conclusive but the medical community does not know how to diagnose my cytopenia. My bone marrow biopsy is inconclusive. My Symptoms are refractory anemia requiring monthly blood transfusions and Extremely low platelets requiring a fascinating orphan drug called Promacta to literally stay alive. I recommend talking to your doctor about Promacta. It is used in ITP an autoimmune disease but more people diagnosed with MDS are using it with good success too. I actually had to tell my hematologist about trying it because i was dying in ICU. My platelets are stable between 50000 and 100000 on the Promacta. I was in and out of the hospital every few months on life support before the Promacta so i consider it a miracle. Some day it would be great if i could get off that too but i will count my blessings.

Regarding CBDs. Here is some good information i have come across i am going to follow. I pray it works. My 10 months on Vidaza was a bust. No improvement.

Dosages. http://phoenixtears.ca/dosage-information/

Here is a source that looks pretty good for all the right reasons. I don't know for sure but i like what they have to say.

https://www.healingessencecbd.com/portfolio-item/our-story/



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.