Learn how to use Mayo Clinic Connect
Request an Appointment
Anyone out there wishing to discuss above diagnosis?
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.
Connect members @jfinlay, @djr, @bijou have discussed Jakafi in the past as well; you can view that discussion here: http://mayocl.in/2iPBxwp
I would also encourage you to watch this video of Dr. Ayalew Tefferi discussing potential new drugs for treating Myelofibrosis as well:
@wellness3070, there seems to be a range of treatments offered to people with myelofibrosis besides medication: blood transfusions, radiation therapy, chemotherapy, surgery to remove the spleen (splenectomy), bone marrow transplant. Have you and your doctor discussed any one of these as a possibility?
Jump to this post
Page not found…dang it! Wanted to read
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, 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)!
I corrected the broken link. See this video of Dr. Ayalew Tefferi discussing potential drugs for treating Myelofibrosis:
steve, this youtube video offers a good understanding of progression and treatment of myelofibrosis. It doesn't contain potential drugs targeting telomerase but offers a clearer understanding of myelofibrosis and current conventional treatments.
Why am I losing so much weight?
And complaining? Lol. Seriously, it Could be an enlarged spleen which sits above your stomach making you feel full. Have you a reduced appetite? This is very common with Myelofibosis……They need to physically check your spleen size….feel it on lower left of chest. And enjoy the skinney
The problem is skinney doesn't stop. My wife usually wears a size 8 and now finds a size 4 is too big because she essentially stopped eating due to the enlarged spleen and feeling bloated. Her oncologist recommended Jakafi to shrink the spleen and she was started on 5 mg twice a day in the middle of July. He insisted all supplements be stopped but I managed to allow magnesium, B Complex, vitamin D.and krill oil to continue and believe it or not liposomal C was canned too but again it was allowed only at a reduced amount of 1000 mg a day. Couldn't salvage liposomal curcumin or K2MK4. Milk Thistle is not allowed with Jakafi and her leg pain now became front and center so 50 mg of Tramadol every 8 hrs or as needed has been prescribed. It's slow to act requiring Tyelnol to fill in the pain gap and because milk thistle was forbidden she didn't want to take Tyelnol without it being detoxified by milk thistle. Now she has allowed me to ask the doctor,at the next appointment, if he will allow quercetin to take the place of milk thistle to detoxify the Tyelnol. Flavonoids have a good chance of being the compounds Dr. Ayalew Tefferi is talking about for treating myelofibrosis. Quercetin is one of them.
I think it was Patrick Holford who said, 'remember, most doctors only got a pass mark!' Sadly, very, very few seem to take their research further than the prescribed syllabus and this is influenced by the actions of the pyramid principle – the people at the top, except in very special circumstances are those who pleased their previous bosses by saying 'yes'! My consultant, despite his apology that if he didn't go by the book would be dismissed, is essentially pretty enlightened. He agreed that the NHS, for example, is 10-15 years behind the latest research. It s the problem of getting the new information to the top of the pyramid before it can be filtered down. Both these processes take years to accomplish!
Meanwhile, my Herbalist told me that Milk Thistle is good only if taken apart from the other herbs and supplements I am taking as it tends to neutralise their effect. The only symptom I have, following a purely natural set of protocols, is a swollen spleen and occasional fatigue (diagnosed MF in 2010). I am looking forward to making my next batch of liposomal C when with the curcumin and broccoli sprouts I will be adding the quercetin that Onamission recommended!
I recently learned pterostilbene from blueberries offers greater quercetin absorption than resveratrol. Going in that direction I found a JAK2 inhibitor refered to as G6 showing an impressive ability to shrink the spleen and reduce bone marrow fibrosis in myelofibrosis in a cureative way instead of palative as discussed in the first article: I looked for a patent on G6 and posted it below. Under description at position 0001 mention is made of α-glycosyl isoquercitrin also called alpha glycosyl isoquercitrim which is found at a lower position. I brought this to your attention in hopes your consultant can put all of this in perspective.Alpha glycosyl isoquercitrim is available is supplement form. However, do you think a liposomal preparation overcomes the absorption problems noted at 0008?
hEHello out there. My name is Nancy Bush (shortshot80,net) I arrived on the Mayo Clinic site because I have 2 types of Lung Cancer. My son who will be 62 in August has been diagnosed with Jak 2 a little over a year ago. He has since been unable to work in his profession ( Plaster Contractor. Some one told him that perhaps this could have been contracted by “radiation”. What causes this disease? Is there anything he can do besides take this “(Hydroxyurea caplets? His body hurts all the time and his doctor tells him that he isn’t supposed to have any pain… But he does and cannot get any pain pills. At this time he doesn’t have any money/insurance to go to another doctor. Also just some information ## son’s second wife has lung cancer mastized to her lymph nodes. and his first wife died of “melanomah”. Any answers would be appreciated.. Nancy
Sorry to here he joined our band of rare misfits….I have had Primary MF for two years, been to numerous doctors chasing cause, effect, and treatment. From two Specialists in the field…seems to be something that just IS in your body waiting to kick in. Usually kicks in after 55…not always…and may not kick in at all…I went back to my annual physical documents and there were signs…but no symptoms.
I too take Hydrea with what my doc says are Very rare side effects. Some expected. Talked about some alternative drugs…but Hydrea is cheap…Jakafi would cost me $7000 a mont. good news lots of other options…and I have the Jak2 as well…just trade cost to manage vs the actual side effects you get. Hope that helps…good luck to you both!
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?
I took serrapeptase for some time. It needs to be coated. All the same, I had no evidence of any improvement. Onamission recommended putting Broccoli sprout powder in the liposomal vitamin C mixture (+ curcumin) which I make. He then recommended adding Quercetin which could also otherwise get destroyed in the gut. I was just about to add that this morning when I came across this article by Dr Mercola demonstrating how vitamin C and Quercetin are a good combination against COVID 19!
Incidentally, I was diagnosed in 2010 with Primary MF, have taken no medication at all and was recently told to carry on with what I am doing by my consultant as I am unusually stable. I do consult a medical herbalist and take a selection of supplements, organic food and more and more sunshine!
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In