Home         Forums  

Go Back   Marrowforums > Regional Discussions > Canada
Reload this Page MDS platelets
Register FAQ Search Today's Posts Mark Forums Read

Canada News and discussions specific to Canada and Canadians

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Jul 8, 2014, 02:26 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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.
Reply With Quote
  #2  
Old Tue Jul 8, 2014, 02:36 PM
Neil Cuadra Neil Cuadra is offline
Owner
  
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
A connection between cannabidiol and platelets has been reported before, but I don't think it's been studied extensively.
Reply With Quote
  #3  
Old Tue Jul 8, 2014, 05:07 PM
sbk007 sbk007 is offline
Member
  
Join Date: Apr 2013
Location: NY
Posts: 322
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.
Reply With Quote
  #4  
Old Tue Jul 8, 2014, 06:34 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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.
Reply With Quote
  #5  
Old Tue Jul 8, 2014, 06:50 PM
sbk007 sbk007 is offline
Member
  
Join Date: Apr 2013
Location: NY
Posts: 322
Alvin, What brand are you using? and the strength?
Thanks
Reply With Quote
  #6  
Old Wed Oct 15, 2014, 12:01 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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.
Reply With Quote
  #7  
Old Tue Oct 21, 2014, 12:01 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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
Reply With Quote
  #8  
Old Tue Oct 21, 2014, 01:04 PM
bailie bailie is offline
Member
  
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Alvin, congratulations on your situation. What is your MDS diagnosis? Are all of your blood counts improving?
__________________
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.
Reply With Quote
  #9  
Old Fri Oct 24, 2014, 08:28 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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
Reply With Quote
  #10  
Old Sat Oct 25, 2014, 01:06 AM
Caregive Caregive is offline
Member
  
Join Date: Nov 2013
Location: USA
Posts: 61
Most interesting. I'll do some reading on that. I hope it gets studied further for the benefit of all.
__________________
Caregiver for husband
Reply With Quote
  #11  
Old Wed Oct 21, 2015, 03:49 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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
Reply With Quote
  #12  
Old Wed Oct 21, 2015, 04:17 PM
bailie bailie is offline
Member
  
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
What kind of MDS diagnosis do you have? What is your blast count?
__________________
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.
Reply With Quote
  #13  
Old Wed Oct 21, 2015, 05:00 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
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
Reply With Quote
  #14  
Old Wed Oct 21, 2015, 08:10 PM
Cheryl C Cheryl C is offline
Member
  
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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...
__________________
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.
Reply With Quote
  #15  
Old Wed Oct 21, 2015, 08:48 PM
bailie bailie is offline
Member
  
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Alvin, is cannabidiol the only "medication" you are on? I don't think you have mentioned anything else.
__________________
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.
Reply With Quote
  #16  
Old Thu Oct 22, 2015, 03:55 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
i am not on any medication except Lipitor ( cholesterol lowering ).
Nothing for my MDS.
Alvin
Reply With Quote
  #17  
Old Thu Oct 22, 2015, 06:09 PM
Marlene Marlene is offline
Member
  
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
That is good news Alvin. Hope it continues.
__________________
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.
Reply With Quote
  #18  
Old Thu Oct 22, 2015, 07:51 PM
bailie bailie is offline
Member
  
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Alvin, Have you ever been on any medication 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.
Reply With Quote
  #19  
Old Thu Oct 22, 2015, 08:07 PM
Alvin Alvin is offline
Member
  
Join Date: Jan 2013
Location: Hope B.C. Canada
Posts: 25
Never had any meds for MDS.
Did a session with EXJADE for iron chelation.
Alvin
Reply With Quote
Reply

« Previous Thread | Next Thread »

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 04:51 PM
MDS treatment without Chemo? Anyone? Increasing platelets naturally? Greentea Alternative Treatments 17 Tue Aug 2, 2016 10:58 AM
Father has MDS and Very Low Platelets - HELP aggarab MDS 21 Sun Sep 16, 2012 04:56 AM


All times are GMT -4. The time now is 08:44 AM.

Marrowforums - Archive - Privacy Policy - Top - Contact

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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 © 2006-2020 Marrowforums.org