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MDS Myelodysplastic syndromes

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  #1  
Old Fri Apr 15, 2016, 01:21 PM
beverly beverly is offline
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Information PLEASE!

We just joined Marrowforums and are SO happy to see active posts, unlike the MDS foundation. My husband (David) was diagnosed with MDS as well as PNH in August 2014. At this time, he is being well managed with the PNH diagnosis with SOLIRIS. The MDS is much more difficult. He is receiving Azacitidine 5 days q wk, once a month. Recently, his HCT, HGB, WBC and RBC have been falling. He had 2 units packed red cells 3/18 and again 4/11 Our question is: has anyone tried CBD for bone marrow health and/or Fucodian? Also am interested in reading experiences with CAMPATH and with telomeres. Thank you in advance! Beverly and David
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  #2  
Old Fri Apr 15, 2016, 01:39 PM
bailie bailie is offline
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Beverly, what does your doctor say? You are playing with fire if you go outside of the doctors advice. With the MDS you are dealing with genetic mutations which the Vidaza (azacitidine) is perhaps the most promising drug available at your husband's stage. I had eight cycles (seven days/21 days) before going to transplant. I wish both of you success.

Are the falling numbers because of the different days in the Vidaza cycle? I charted all of my CBCs and the pattern was predictable for me. My platelets always reached there nadir at 10-13 days following the last treatment each month. For me, my RBCs did not move much at all. The WBCs and neutrophils moved in tandem and I couldn't find a pattern.
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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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  #3  
Old Fri Apr 15, 2016, 02:17 PM
beverly beverly is offline
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Our physician is OK with CBD - has several patients using it. He said, "it might help with bone marrow health - it may not, but studies show it won't harm". He is 83 years old - not a candidate for transplant. Also, our doctor fears, that after 22 months on Azacitidine treatment, it may be losing its effect. I am also looking a introducing Fucodian supplement, but still researching and would truly appreciate input from you and others on this website. thank you!
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Old Fri Apr 15, 2016, 02:37 PM
bailie bailie is offline
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Is your physician an oncologist, or a primary care physician? Are these other patients using CBD for MDS, or some other disease? What positive effect does he say the CBD will have on the 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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  #5  
Old Fri Apr 15, 2016, 03:34 PM
beverly beverly is offline
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Oncologist/hematologist. CBD for bone marrow health as well as some patients using for pain. I am researching, researching....asking questions. Thank you for your input!
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  #6  
Old Sat Apr 23, 2016, 09:15 PM
beverly beverly is offline
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question please

I just read that a series of DANAZOL 600mg qd + Retoninoic Acid 100mg qd + prednisone 10 mg qad is a cocktail for 5 to 7 year remission for MDS patients. Does anyone have information about this?
Thank you, Beverly and David
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  #7  
Old Sat Apr 23, 2016, 09:39 PM
Greg H Greg H is offline
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Quote:
Originally Posted by beverly View Post
I just read that a series of DANAZOL 600mg qd + Retoninoic Acid 100mg qd + prednisone 10 mg qad is a cocktail for 5 to 7 year remission for MDS patients. Does anyone have information about this?
Thank you, Beverly and David
Hi Guys!

The NIH has been doing trials of Danazol for folks with bone marrow and lung disorders. The current trial is no longer recruiting, but I understand another is in the works.

They have been focusing on folks with abnormally short telomeres and TERT or TERC mutations. I have a TERT mutation and ridiculously short telomeres, and Danazol work ed well for me. You can read about my experience here.

I'm not familiar with the cocktail that you mention. Trials have been done with retinoic acid. This one wasn't all that promising, but other might have worked out better.

Good luck!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #8  
Old Sun Apr 24, 2016, 12:20 PM
kyis kyis is offline
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I tried it about a year ago and it did not appear to help.
I got nervous about the lack of control over quality and the possibility of molds and other substances. I tried high CBD vapor and edibles. Never smoked the real thing. I never liked smoke in my lungs.
If I could have received some sort of medical grade CBD I would have continued. I'm now on Vidaza, so I'm not messing with anything.
We are all so different, so what doesn't work for some of us may work for others and vice versa. Such a frustrating cancer.
I wish you and your husband the very best.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #9  
Old Mon Apr 25, 2016, 10:04 AM
beverly beverly is offline
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Can't you get a Medical Marijuana card so you can buy CBD elixir? Our oncologist did the paper work for us - easy application although costly. $200 a year for the card. Wondering if anyone has tried TURMERIC to lower ferritin levels? Thank you all so much for answering our questions! We truly felt alone until we found this wonderful website!B
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  #10  
Old Thu Apr 28, 2016, 07:01 PM
downtown downtown is offline
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Quote:
Originally Posted by beverly View Post
Our physician is OK with CBD - has several patients using it. He said, "it might help with bone marrow health - it may not, but studies show it won't harm". He is 83 years old - not a candidate for transplant. Also, our doctor fears, that after 22 months on Azacitidine treatment, it may be losing its effect. I am also looking a introducing Fucodian supplement, but still researching and would truly appreciate input from you and others on this website. thank you!
Beverly, I would really like to discuss these with you.
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