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  #1  
Old Tue Jul 8, 2014, 01:26 PM
Alvin Alvin is offline
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MDS platelets
I am 81 yrs. with MDS for 2 yrs..
I have been getting 2 units of platelets every 9/10 days for that time, 2 months ago I started 3 drops of Cannabidiol per day.
I have now gone 35 days without the need for a platelet trans.
Cannabidiol is non hallucinogenic. Our idiotic Government will not take if off its drug designation.
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  #2  
Old Tue Jul 8, 2014, 01:36 PM
Neil Cuadra Neil Cuadra is offline
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A connection between cannabidiol and platelets has been reported before, but I don't think it's been studied extensively.
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  #3  
Old Tue Jul 8, 2014, 04:07 PM
sbk007 sbk007 is offline
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1. It is legal and can be bought on Amazon & eBay.
2. There are no studies I could find that supports platelet response.
3. I would like to ask Alvin what his platelet count was pre-ingestion and post.
4. Unfortunately it will not give you a buzz..SO if it doesn't work you can't even get high.
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  #4  
Old Tue Jul 8, 2014, 05:34 PM
Alvin Alvin is offline
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Cannabidiol
I get trans. with platelets when the count gets to 8.
Since the CBD, plts. have been at a constant 9/10
Low but manageable.
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  #5  
Old Tue Jul 8, 2014, 05:50 PM
sbk007 sbk007 is offline
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Alvin, What brand are you using? and the strength?
Thanks
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  #6  
Old Wed Oct 15, 2014, 11:01 AM
Alvin Alvin is offline
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update
Quote:
Originally Posted by Alvin View Post
I am 81 yrs. with MDS for 2 yrs..
I have been getting 2 units of platelets every 9/10 days for that time, 2 months ago I started 3 drops of Cannabidiol per day.
I have now gone 35 days without the need for a platelet trans.
Cannabidiol is non hallucinogenic. Our idiotic Government will not take if off its drug designation.

Oct. 15
I have now gone 76 days before I needed two units of platelets.
My hemoglobin gained 5%. First gain in well over 2 yrs.
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  #7  
Old Tue Oct 21, 2014, 11:01 AM
Alvin Alvin is offline
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Smile update
I can't seem to get this posted.
After 6 mo. taking cannabidiol my last period between platelets trans. was 76 days.
Hemoglobin about 30 days.
Alvin
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  #8  
Old Tue Oct 21, 2014, 12:04 PM
bailie bailie is offline
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Alvin, congratulations on your situation. What is your MDS diagnosis? Are all of your blood counts improving?
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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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  #9  
Old Fri Oct 24, 2014, 07:28 PM
Alvin Alvin is offline
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My blood counts are not improving but are staying steady for longer, therefore longer periods trans free. This a big change from 6 mo. ago.
Alvin
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  #10  
Old Sat Oct 25, 2014, 12:06 AM
Caregive Caregive is offline
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Most interesting. I'll do some reading on that. I hope it gets studied further for the benefit of all.
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  #11  
Old Wed Oct 21, 2015, 02:49 PM
Alvin Alvin is offline
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MDS and Cannabidiol
Today is the 365th day since I have had to get a platelet tx.
I spent 2 years getting these tx every 9/10 days.
For a about 18 months I have been taking 2 rice grain sized drops of cannabidiol.
There is no scientific proof of this result but something very dramatic has happened to my condition.
Alvin
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  #12  
Old Wed Oct 21, 2015, 03:17 PM
bailie bailie is offline
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What kind of MDS diagnosis do you have? What is your blast count?
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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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  #13  
Old Wed Oct 21, 2015, 04:00 PM
Alvin Alvin is offline
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It has been so long since I was diagnosed that I don't have that info.
I will contact my hematologist and see if I can get that info.
Alvin
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  #14  
Old Wed Oct 21, 2015, 07:10 PM
Cheryl C Cheryl C is offline
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A study into the effectiveness of Cannabidiol for epilepsy in children has just been approved by the New South Wales (Australia) government. There has also been some study into its effectiveness for Alzheimers (in mice). There's also been a lot of publicity recently about the use of Cannabidiol as pain relief for terminal cancer patients. Haven't heard anything public about platelets yet...
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #15  
Old Wed Oct 21, 2015, 07:48 PM
bailie bailie is offline
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Alvin, is cannabidiol the only "medication" you are on? I don't think you have mentioned anything else.
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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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  #16  
Old Thu Oct 22, 2015, 02:55 PM
Alvin Alvin is offline
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i am not on any medication except Lipitor ( cholesterol lowering ).
Nothing for my MDS.
Alvin
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  #17  
Old Thu Oct 22, 2015, 05:09 PM
Marlene Marlene is offline
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That is good news Alvin. Hope it continues.
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #18  
Old Thu Oct 22, 2015, 06:51 PM
bailie bailie is offline
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Alvin, Have you ever been on any medication for MDS?
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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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  #19  
Old Thu Oct 22, 2015, 07:07 PM
Alvin Alvin is offline
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Never had any meds for MDS.
Did a session with EXJADE for iron chelation.
Alvin
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