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MDS Myelodysplastic syndromes |
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#1
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Cannabis Oil vs Smoking Pot vs Hemp Oil
I have seen a few comments on here in regards to medical Marijuana and I just wanted to clarify a few things. Smoking Marijuana is no where near the same thing as ingesting Cannabis Oil. Medical Marijuana (smoked) is beneficial to people with no appetite, nausea, anxiety and things like that. If you want the full Cancer / Bone Marrow benefits of "Phoenix Tears" (Cannabis Oil), you have to make it, and ingest the oil (or in the case of Melanoma, you rub it on your skin).
I have read many stories of people with high blasts being cured of their Leukemias and other cancers with Cannabis Oil here in Canada. One story was a young girl with Leukemia who within days of ingesting Cannabis oil, had her blasts go from very high to zero. Unfortunately she passed away from Chemo related Gastro issues. My mother's friend cured her Stage 4 lung cancer with Phoenix Tears. HEMP OIL is also very different (see link below) available at grocery stores, Amazon, and Health Food stores. It is like Cannabis oil without the THC effects. I personally take this for my own health, as it also has cancer preventing properties and good Omegas. I am waiting for Cannabis to be legalized in Canada before I give Pheonex Tears a shot with my husband. I'm too cute for Jail, plus I work in an industry where having a criminal record of any kind could result in losing my job. I'm linking some info below for anyone who is interested. The story of Phoenix Tears (Run From The Cure) is worth the watch. There are also videos about how to make the oil, dosing and other stories. Please be careful when reading stories about this Oil. I have found the story of Mikayla (see below) used several times claiming she was from several different cities and with different outcomes. Do your research and be watchful of the sites you are reading stories from! I would like to add a message myself at this point... please do not buy Marijuana on the street from strangers, you don't know what else is in it as often dealers will cut Cocaine and Fentynl etc into their pot to make it stronger. I personally have a friend who grows her own pot and I know I can trust that her pot is pure. There is also 2 certain strains which have better Cancer fighting properties ... Indica and Sativa (sp?). http://phoenixtears.ca/video-library/ https://healthyhempoil.com/hemp-oil-vs-cannabis-oil/ http://www.greenmedinfo.com/blog/can...-form-leukemia (Mikayla's Story with Graph) http://www.cureyourowncancer.org/eli...nabis-oil.html http://www.kelownacapnews.com/news/373869691.html (This is the area where I live, I love this story!) |
#2
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Are you suggesting that this will change genetic mutations back to normal?
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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. |
#3
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Does Chemo / Pharma / Radiation fix Genetic Mutations? (not being sarcastic, just seriously wondering... I had never been asked that question before).
I'm not suggesting anything, I'm just providing information for people who have asked about it. Everyone's case is certainly different, but I'm open to anything to save my husband's life. It certainly doesn't hurt a person, not like Chemo / Big Pharma products with terrifying side effects. It is my belief that Chemicals (Benzene, Aspartame, sawdust and who knows what else he was exposed to as a Millwright) caused my husband's MDS. To believe that only Chemicals can fix him feels wrong to me. When I'm ready to start Cannabis Oil with my husband (under his Bone Marrow Specialist's Supervision), I'll post here and we'll have to see. I look at each opportunity with a willingness to be wrong. |
#4
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You asked, "Does Chemo / Pharma / Radiation fix Genetic Mutations?"
I just got this report today from my last BMB, "No mutations have been identified in any of the 42 genes tested. The previously-reported SF3B1 K700E, KRAS G12V, and IKZF1 C492G mutations are not detectable in the current bone marrow specimen (with a limit of detection of ~0.5%)." Also, "Each of the 42 genes listed below contained no detectable mutation". This from Vidaza and Dasatinib after only three cycles and clear for the last ten months.
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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. |
#5
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So what you are saying is it IS possible to fix genetic mutations. That's great! Congrats!!
I am hoping to achieve the same thing with Cannaboids. Wish us luck! |
#6
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CBD Oil
Bossywife, thanks for posting the links.
My mother has just started taking CBD Oil, sourced from Palmetto Harmony(USA). She has had varying results with her blood work for last few months, specifically platelets. We will see if this helps her counts remain stable. I can also arrange the cannabis oil(made Rick Simpson way) for ingestion, but hesitant to try due to the THC content.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014 |
#7
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Bossywife, what were the results of your husband's last bone marrow biopsy? Are you still having the discussion with doctors about a stem cell transplant?
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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. |
#8
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Hi Baillie,
No, at this time my husband has monthly bloodwork and he's on a "watch and wait". His platelets are the only results low at this time, but he is losing weight. He has only had two biopsies within 2 days of each other (both dry taps) at the very beginning when he was diagnosed and they don't think that having another biopsy is important since he is "doing well". We are kind of in limbo, like he's driving around on bald tires and the doctors are waiting for one of them to blow. I don't like this at all. Don't get me wrong, I'm grateful that he says he's healthy and fine, but I am a watchful wife. I know better. He sleeps a LOT, he is alarmingly thin. He only says he's fine because he wants to play hockey starting in July. I'll play his little game, because I know mentally, this is very good for him. This disease gives me a headache. Laura |
#9
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Quote:
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#10
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Bossywife, the part that seems concerning is that I felt totally fine right up to my stem cell transplant. I was golfing 18 holes (walking the hilly 6 mile course) once a week with no problems. My platelets started dropping quickly. My other counts were comfortably in the normal range. I had two bone marrow biopsies within a week and within another week we were discussing a stem cell transplant. All of this seemed surreal because I was feeling completely normal. They started me on Vidaza in the next week to have me in optimum position for the SCT. I continued walking the golf course right up until a week before the SCT. The doctors mentioned many times how significant it was that we acted immediately before my health deteriorated and might put the SCT in jeopardy.
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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. |
#11
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I know, trust me, I'm frustrated by it. The Doctor said he would do a SCT up until my husband is 70. But I don't see why we can't do it now while they are both healthy. UGH. He told us that there was a 25% chance of dying just doing the SCT, so if my husband feels good, just let it be.
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#12
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I believe that you are correct. It is very important with RAEB II to go into SCT at the optimum health possible. It sounds like you really need other (doctors) opinions. RAEB II can easily and quickly get out of hand (AML) to a point that it might not be possible to turn around. My situation turned down in just a couple of months. Luckily I went to the emergency room for kidney stones and they quickly diagnosed my situation from a routine CBC and two BMBs within a week. I couldn't believe it because I was feeling so healthy (except for the temporary kidney stones). I was started on Vidaza immediately (that was about three years ago) and then had my SCT.
__________________
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. Last edited by bailie : Mon Jun 20, 2016 at 07:24 PM. |
#13
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Hi Bossywife - How long ago were the two bone marrow biopsies? If they were dry taps I wonder how good the results were. I was originally diagnosed with RAMD -and later a BMB showed 8% blasts - but they were "patchy" and my hematologist didn't think they were that high - and in a better subsequent biopsy they were much lower... the quality of the sample and the skill of the person analyzing it are both important.
When I was on watch and wait they did BMB's every six months, even if my blood counts weren't terrible - I'd think you'd want a biopsy at least that often - and at least one with a good sample. There is a balance between getting a transplant too soon - when the risk of dying from the transplant is higher than the potential gain - but it is better to transplant before blasts get higher than 10% - and the healthier the better. I agree with Bailie, a second opinion maybe from a transplant specialist might be called for... Best wishes, Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015 |
#14
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The specialist we see is a bone marrow transplant specialist at Vancouver General Hospital.
I will be asking about Bone Marrow Biopsies, but both biopsies were done withing 24 hours of each other by different doctors, and both were dry taps. Not sure if there is anything they can do to get a better read. |
#15
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Hi Bossy wife,
I'm very interested to see how you are going in treating your husband with cannabis oil....Have you noticed any change? Best |
#16
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Promacta
Laura, i am taking Promacta medication for my platelets. It has been a miracle keeping me out of the hospital. Have you heard about it?
I am getting ready to try CBD for my severe anemia. Vidaza failed to work after 10 months. MDS is called a blood cancer and CBDs are suppose to be a cancer fighter. Will see. Quote:
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#17
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Cannabidoil! Well???
BossyWife and Medical Enigma, Have you made any progress using cannabis oil? I saw the last post about it in January. This MDS community of one is dying to hear your experience.
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#18
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My husband refuses to use Cannibis Oil.
He works at the Cancer Agency here, and the Doctors all debunk it, and his loyalty lies with them, not his hippy/quack wife. It's not for everyone and I would never force it on him. One day i'm hoping he'll watch the Rick Simpson video and the Truth About Cancer with me, but it's highly unlikely. I can only do so much. I still love him, the stubborn old goat.
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation |
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