Myelofibrosis*

I corrected the broken link. See this video of Dr. Ayalew Tefferi discussing potential drugs for treating Myelofibrosis:

Steve, when I was first diagnosed with MF after a biopsy, the first consultant I saw wanted to give me Hydrea. I said no - that I could not believe that something which did so much harm could be good for one! She 'sacked' me. Two subsequent consultants said they would not have prescribed it. I have continued with natural protocols and no drugs, successfully ever since - but with the help and advice of others doing the same thing. Much of it is experimentation to find out what works. The thing to hold on to is that if one becomes healthier it would not be too surprising if one becomes healthier (if you don't object to the obvious tautology here)!

Page not found...dang it! Wanted to read

Yes, trials and even existing drugs for MF are ropes without a knot tied at the end....there is nothing to hold onto.Gold is where you find it Steve and Roger's offer is gold. Your at a stage where bringing those elements together has the most leverage and remission is possible while maintaining the protocol. Equally important is to educate yourself on them especially about liposomal delivery and discipline yourself to keep a daily routine dose schedule. MF progresses rapidly so keep it check.

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

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/

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.

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

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.

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