Cannaboids for MDS Treatment?

[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.

Originally Posted by 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...

[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/po...tem/our-story/

Originally Posted by 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.