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  #26  
Old Sun Oct 19, 2014, 03:20 PM
Alvin Alvin is offline
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Smile cannibidiol

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 .

Last edited by Alvin : Sun Oct 19, 2014 at 03:21 PM. Reason: spelling
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  #27  
Old Sun Oct 19, 2014, 05:29 PM
bailie bailie is offline
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Alvin, what type of MDS do you have?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #28  
Old Sun Oct 19, 2014, 07:19 PM
sbk007 sbk007 is offline
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Thumbs up Sounds Good!!

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.
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  #29  
Old Sat Dec 27, 2014, 11:37 AM
Alvin Alvin is offline
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Cannabidiol

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.
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  #30  
Old Sat Dec 27, 2014, 12:42 PM
Marlene Marlene is offline
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Thanks for the update. Glad you are having an improvement.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #31  
Old Sat Dec 27, 2014, 02:33 PM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #32  
Old Sat Dec 27, 2014, 02:39 PM
bailie bailie is offline
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Alvin, what type of MDS do you have? What are your numbers?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #33  
Old Sat Dec 27, 2014, 02:51 PM
Marlene Marlene is offline
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I've never heard of CBD or MM being deadly. How is it disastrous/deadly for people with MDS?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #34  
Old Sat Dec 27, 2014, 03:23 PM
bailie bailie is offline
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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.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #35  
Old Tue Dec 30, 2014, 11:34 AM
Alvin Alvin is offline
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Cannabidiol

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
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  #36  
Old Tue Dec 30, 2014, 11:43 AM
bailie bailie is offline
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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.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #37  
Old Thu Jan 29, 2015, 11:17 AM
Peachy Peachy is offline
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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
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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  #38  
Old Sat Apr 11, 2015, 11:13 AM
Rhys Rhys is offline
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Just been Diagnosed with MDS

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!
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  #39  
Old Sat Apr 11, 2015, 12:28 PM
bailie bailie is offline
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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.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #40  
Old Sat Apr 11, 2015, 03:29 PM
AliviaJane AliviaJane is offline
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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.
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  #41  
Old Mon Apr 13, 2015, 10:55 PM
Rhys Rhys is offline
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Quote:
Originally Posted by Alvin View Post
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?
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  #42  
Old Wed Apr 15, 2015, 05:50 PM
skepticaloptomist skepticaloptomist is offline
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Question CBD oil for MDS

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.

Last edited by skepticaloptomist : Wed Apr 15, 2015 at 05:54 PM. Reason: additional question
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  #43  
Old Wed Apr 15, 2015, 08:16 PM
Rhys Rhys is offline
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Pot Kills Cancer

http://www.ora.tv/offthegrid/article...t-kills-cancer

Here is some good reading!!!
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  #44  
Old Thu Apr 16, 2015, 06:53 AM
Rhys Rhys is offline
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Quote:
Originally Posted by msmichelle View Post
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?
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  #45  
Old Sun Apr 19, 2015, 10:12 PM
donna j. donna j. is offline
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cbd for gvhd

Wonder about cbd for cgvhd. Anyone know?
donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #46  
Old Mon Apr 20, 2015, 08:27 AM
Marlene Marlene is offline
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Appears possible

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/...tment-of-gvhd/
http://www.420magazine.com/forums/im...lantation.html
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #47  
Old Tue Apr 21, 2015, 10:58 AM
donna j. donna j. is offline
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Smile cbd for gvhd

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
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #48  
Old Tue Apr 21, 2015, 12:05 PM
Marlene Marlene is offline
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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
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #49  
Old Sun Jun 7, 2015, 10:23 PM
Umaterr Umaterr is offline
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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
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husband dx MDS 8/4/14, blasts 3%, 17Q-, low red, white, platelets. Myeloma dx in 1999, stem cell transplant 1999.
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  #50  
Old Sat Jun 27, 2015, 05:48 PM
Coppcat Coppcat is offline
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CBD Oil

Quote:
Originally Posted by Alvin View Post
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
Quote:
Originally Posted by Alvin View Post
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.
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