Myelofibrosis*

Posted by wellness3070 @wellness3070, Jan 5, 2017

Anyone out there wishing to discuss above diagnosis?

@stimme

Hey, that is stunning! I don't think I have seen a detailed medical report of success by natural means in this condition before. I was diagnosed, myself, nine and a half years ago so must have had the condition earlier as I was only given a medical because of my age. My consultant, if he is not hosting me, says my condition hasn't worsened! So perhaps my combination of supplements (eight, containing 43 different substances plus liposomal vitamin C) is already working but I will certainly send this to my medical herbalist who is rather clever, himself, at digging out interesting references! I have already posted it on Cancer Compass! Many, many thanks and well done!

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After you click on Figure 1 of this article summarizing benefits you'll find just below recognition of kaempferol's poor bio-availability. This confirms liposomal delivery is the best approach for you.
https://www.spandidos-publications.com/10.3892/etm.2019.7886

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@onamission

After you click on Figure 1 of this article summarizing benefits you'll find just below recognition of kaempferol's poor bio-availability. This confirms liposomal delivery is the best approach for you.
https://www.spandidos-publications.com/10.3892/etm.2019.7886

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Thank you. This is saved.

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@colleenyoung

Hi Steve,
I couldn’t find any evidence-based mentions of serrapeptase being used to help treat myelofibrosis. I found no mention of it in the National Center for Complementary and Integrative Health (NCCIH) database. A few members like @steve1948 @hishamhussain and @marzz have mentioned using it for lung conditions with varying success (or lack thereof).

Have you spoken to your wife’s doctor about it?

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I took serrapeptase for a while believing it could possibly 'eat-up' the fibrin – logically it should. However, it was rather expensive and I had no evidence that it did do this. More recently I was advised on this site to take sprouted broccoli powder, but within the liposomal mixture I make, as it can be destroyed in the gut otherwise. I have just begun adding a tablespoon to the mixture: I use a jewellery cleaner (see liposomal vitamin C on youtube). First I soak 6 tablespoons of organic sunflower lecithin for four hours in two cups of water and then put it in the blender for a minute. I then put 3 tbls of sodium ascorbate (vit C), 1 tbls of curcumin and 1 tbls of broccoli powder in one and a half cups of water and add immediately to the blender for another minute. I then pour the whole mixture into the jewellery cleaner for 22 minutes (this time recommended by a doctor who also makes her own) and pour into a jar to put in the fridge. I mix half a glass of the mixture with half a glass of vegetable juice and take regularly (not all in one go!!) with other supplements.
I should say that this practice, plus the other supplements I take, has brought my PSA figures down from 15.5 to 7.7. The nurse was astonished – she asked what I had done to achieve this and took down the list of supplements! (I take no medications except Anadin Extra every 24 hours for a nerve trapped in my back.)

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@stimme

I took serrapeptase for a while believing it could possibly 'eat-up' the fibrin – logically it should. However, it was rather expensive and I had no evidence that it did do this. More recently I was advised on this site to take sprouted broccoli powder, but within the liposomal mixture I make, as it can be destroyed in the gut otherwise. I have just begun adding a tablespoon to the mixture: I use a jewellery cleaner (see liposomal vitamin C on youtube). First I soak 6 tablespoons of organic sunflower lecithin for four hours in two cups of water and then put it in the blender for a minute. I then put 3 tbls of sodium ascorbate (vit C), 1 tbls of curcumin and 1 tbls of broccoli powder in one and a half cups of water and add immediately to the blender for another minute. I then pour the whole mixture into the jewellery cleaner for 22 minutes (this time recommended by a doctor who also makes her own) and pour into a jar to put in the fridge. I mix half a glass of the mixture with half a glass of vegetable juice and take regularly (not all in one go!!) with other supplements.
I should say that this practice, plus the other supplements I take, has brought my PSA figures down from 15.5 to 7.7. The nurse was astonished – she asked what I had done to achieve this and took down the list of supplements! (I take no medications except Anadin Extra every 24 hours for a nerve trapped in my back.)

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That's fantastic. I understand quercetin also lowers PSA levels so combining it with the broccoli powder may lower your level even more.

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Thank you, onamission. Quercetin is on the shopping list!

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68 yr old diagnosed 2 years ago with PMF, Jak2 mutation. Have managed foot pain symtoms with Hydrea but other side effects include: lose of appetite, purple discoloration in toes..when weather is below 60degrees, and most recently clouding in lungs. My local oncologist suggested Jakafi…but Medicare cost is $7000 a month. Since this is a symptom management drug and Not a cure…I thanked her for suggestion and passed. Still on Hydrea, she referred me to a Pulmanologist. I am fortunate to live in PHX, AZ and have visited specialists in blood disorders at both Mayo and MD Andersen. What I have found in being referred to rheumatologist, cardiologist and other specialties…they have no knowledge on this cancer….so the results are other head scratching and “must be the cancer”. Chasing symptoms and side effects is a minor inconvienece….overall I am active and stable and have no restrictions…so I get to enjoy the GrandKids…
Grateful for these types of group discussions….I like to follow the literature and forward to my Oncologist…..

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Hi, Steve, I was diagnosed with MF in late 2010, though I must have had it a while before then. I have taken no medication at all, but I make my own Liposomal vitamin C (see online & videos). I also take a good multivitamin, medicinal mushroom capsules, vitamin D3, Magnesium and several other supplements. My consultant recently told me in front of a student that I am unusually stable and to carry on with whatever I am doing! If you want more details I can give you pointers. For some years I communicated with others on 'CancerCompass'. Several were following a similar (though personally varied) protocol and everyone was showing improvements! On this protocol, my PSA went recently from 15.5 to 7.6! The nurse asked me what was I doing to make this happen so I told her the supplements!
I personally believe not in 'zapping' the problem but in building health so that your body does it for you. Finding a good nutritionist could help to pinpoint weaknesses!
Best wishes,
Roger

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Steve, Hydrea causes loss of magnesium. A magnesium deficiency leads to a vitamin B1 (thiamine) deficiency as it needs magnesium to change it to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition among other symptoms. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists other causes of magnesium deficiency in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron". Research thiamine to see what else it does as well as the other B vitamins as they work better together. Benfotiamine is a fat soluable form that the body converts to thiamine which offers important benefits as well and for the eyes too. Also, research resveratrol and quercetin together for MF. Always consult your health professional before using any supplement.

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@stimme

Hi, Steve, I was diagnosed with MF in late 2010, though I must have had it a while before then. I have taken no medication at all, but I make my own Liposomal vitamin C (see online & videos). I also take a good multivitamin, medicinal mushroom capsules, vitamin D3, Magnesium and several other supplements. My consultant recently told me in front of a student that I am unusually stable and to carry on with whatever I am doing! If you want more details I can give you pointers. For some years I communicated with others on 'CancerCompass'. Several were following a similar (though personally varied) protocol and everyone was showing improvements! On this protocol, my PSA went recently from 15.5 to 7.6! The nurse asked me what was I doing to make this happen so I told her the supplements!
I personally believe not in 'zapping' the problem but in building health so that your body does it for you. Finding a good nutritionist could help to pinpoint weaknesses!
Best wishes,
Roger

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Hi Roger, love to hear more pointers….seems a smart alternative.

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Onamission also replied with excellent research. Do follow that up. There is a great deal of research about the efficacy (and need for) plenty of vitamin C. Don't take any notice of RDA etc. that was the minimum amount needed to prevent scurvy (and, incidentally it took the authorities 100 years to work that one out!) You can take even 100 grams (but not in one go!!) I don't really achieve my aim of 100 grams a week (not milligrams) but whatever I am doing seems to be keeping things at a low level. I bought a jewellery cleaner which vibrates the mixture (without heat) so that it doesn't get destroyed in the gut. Liposomal vitamin C is said to be 80% absorbed where the powder alone is just about 16%. In two + cups of water, I soak 6 tablespoons of organic sunflower lecithin (better than soy) for four hours. I blend it for a minute. I then add, to a cup of water, 3 tablespoons of sodium ascorbate (less acidic than ascorbic acid), 1 tblsp or slightly less of curcumin and 1 tblsp of ground broccoli sprouts (Onamission told me about this for prostate). I add this mixture to the lecithin and blend both for a minute. Finally, I vibrate the whole mixture for 22 minutes in the jewellery cleaner and seal it in a jar in the fridge. To drink (in maximum 2 hour stages) I add half a glass to half a glass of vegetable juice and would ideally aim to drink a glass of this a day. I would say this is your base for all other supplements (except, I was told, that selenium is destroyed by high doses of vitamin C so take that separately). The reason Onamission gives you a number of choices is not to complicate things but because we often find that our own unique biology requires slightly different amounts and types of nutrition. We are not all the same size, for example, nor are our organs. You could try seeing a Kinesiologist, this therapy has a very clever way of detecting your nutritional deficiencies.

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Steve, please search on "toe discoloration hydrea". I'm postting an article that discusses and has pictures of hands instead of feet but your description seems to apply anyway. There may be a match for yours I haven't found. Why your still using Hydrea with a MF diagnosis is a puzzel. Was that diagnosis made from a bone marrow biopsy? Anyway, Hydrea is known to cause leg ulcers so contact your doctor for instructions.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2885649/

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@onamission

Steve, please search on "toe discoloration hydrea". I'm postting an article that discusses and has pictures of hands instead of feet but your description seems to apply anyway. There may be a match for yours I haven't found. Why your still using Hydrea with a MF diagnosis is a puzzel. Was that diagnosis made from a bone marrow biopsy? Anyway, Hydrea is known to cause leg ulcers so contact your doctor for instructions.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2885649/

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Thanks….interesting. They were surprised it was not apparent in my fingers. Yes, I had a bone marrow biopsy and have discussed alternatives to Hydrea and even clinical trials. Interestedly enough, I found a trial, applied and was told I needed to be worse that a stage 1. Lol….so few of us have this and now they want only folks who are worse? Appreciate your feedback

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