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!
Steve
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).
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!
Good luck
Congradulations on your tenth anniversary.That is amazing!! Yes, quercetin is becoming a Swiss Army knife. I came across this article regarding eye health benefits with quercetin. As I posted earlier, my wife went on Jakafi and off most of the supplements. Today I asked the doctor if he would approve quercetin. No, I'm not familiar with it was his reply. I try again at the next appointment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5685256/
My approach to orthodox medicine and medical practitioners is that, unless they prove otherwise, tests, 'possible' diagnosis and emergency treatment are taken seriously but for chronic conditions and treatments, meanwhile, I keep my own counsel! I use a simple understanding. There are always three good ways of doing anything. This may sound curious but it is recognised. You can attack something to overcome it or you can master it. You can take a pill designed to 'cure' a problem or you can build up your inner strength by identifying where you are weak and working on it! I prefer the latter. I compare this to the opposites of circuit training or yoga! (presumably, there is also a half-way method encompassing both to some extent.)
My approach to orthodox medicine and medical practitioners is that, unless they prove otherwise, tests, 'possible' diagnosis and emergency treatment are taken seriously but for chronic conditions and treatments, meanwhile, I keep my own counsel! I use a simple understanding. There are always three good ways of doing anything. This may sound curious but it is recognised. You can attack something to overcome it or you can master it. You can take a pill designed to 'cure' a problem or you can build up your inner strength by identifying where you are weak and working on it! I prefer the latter. I compare this to the opposites of circuit training or yoga! (presumably, there is also a half-way method encompassing both to some extent.)
I don't recall if you mentioned using NAC or glutathione. Individually they offer important benefits. Together, It appears NAC and glutathione have a positive effect on fibrosis. There is an online article titled "Oxidative stress and glutathione in TGF-β-mediated fibrogenesis" you can search on. NAC also is a liver detoxifier of Acetaminolhen. Acetaminolhen and MPN's lower glutathione. Myelofibrosis, as you know, involves a lot of inflammation. Glutathione is the master antioxident of the body. Setria glutathione looks like a well crafted supplement. What do you think?
I have also heard a lot about Glutathione. It apparently is better absorbed in a liposomal mixture. I have been taking Anadin Extra for pain for some time and was concerned about the reported possible effects on the liver. My Medical Herbalist, to support the liver, then added Horsetail to the tincture he gives me of nettle root, Reishi mushroom and artichoke. Last week my blood test showed no problems with liver or kidneys! I still might update my research on Glutathione.
Sounds like your in good hands. Yes, the liposomal Glutathione form is out front. It's recommended to take it, or the non-liposomal form, 30 to 45 minutes before other supplements or food. I encourage checking out NAC as it offers enhancement for myelofibrosis pain relief.amoung it's repertoire.
NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days. The pains are from trapped nerves in thoracic and lumber vertebrae. I have been a professional orchestral violinist and all those tensions are probably coming home to roost. I am about to go back to my osteopath.
NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days. The pains are from trapped nerves in thoracic and lumber vertebrae. I have been a professional orchestral violinist and all those tensions are probably coming home to roost. I am about to go back to my osteopath.
Interesting and very thorough article. Thank you. I just found this article about compatible vitamins and minerals. I cannot vouch for the authority. Perhaps it requires more research!
Everyone's favorite master antioxidant has very few negative interactions, which is yet another reason why its so easy to incorporate into your daily diet! It is so fantastic and goes well with almost everything. However, glutathione contains a substantial amount of sulphur, so you should not take glutathione along with other sulphur-containing supplements, unless you have received explicit medical approval to do so.
The sulphur caution that accompanies both both Beef Gelatin and Liposomal Glutathione goes not only for sulphur directly but any supplement that contains sulphur, including these popular supplements: garlic, glutathione, glucosamine, N-acetylcysteine (NAC), alpha-lipoic acid (ALA), chondroitin, and Methylsulfonylmethane (MSM). Since NAC and ALA are fairly popular supplements -- be careful and do your research before taking them in the same stack, at the same time as Glutathione.
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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!
Steve
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!
https://articles.mercola.com/sites/articles/archive/2020/08/24/quercetin-and-vitamin-c-synergistic-effect.aspx#commentfocusIncidentally, 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!
Good luck
Congradulations on your tenth anniversary.That is amazing!! Yes, quercetin is becoming a Swiss Army knife. I came across this article regarding eye health benefits with quercetin. As I posted earlier, my wife went on Jakafi and off most of the supplements. Today I asked the doctor if he would approve quercetin. No, I'm not familiar with it was his reply. I try again at the next appointment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5685256/
My approach to orthodox medicine and medical practitioners is that, unless they prove otherwise, tests, 'possible' diagnosis and emergency treatment are taken seriously but for chronic conditions and treatments, meanwhile, I keep my own counsel! I use a simple understanding. There are always three good ways of doing anything. This may sound curious but it is recognised. You can attack something to overcome it or you can master it. You can take a pill designed to 'cure' a problem or you can build up your inner strength by identifying where you are weak and working on it! I prefer the latter. I compare this to the opposites of circuit training or yoga! (presumably, there is also a half-way method encompassing both to some extent.)
I don't recall if you mentioned using NAC or glutathione. Individually they offer important benefits. Together, It appears NAC and glutathione have a positive effect on fibrosis. There is an online article titled "Oxidative stress and glutathione in TGF-β-mediated fibrogenesis" you can search on. NAC also is a liver detoxifier of Acetaminolhen. Acetaminolhen and MPN's lower glutathione. Myelofibrosis, as you know, involves a lot of inflammation. Glutathione is the master antioxident of the body. Setria glutathione looks like a well crafted supplement. What do you think?
I have also heard a lot about Glutathione. It apparently is better absorbed in a liposomal mixture. I have been taking Anadin Extra for pain for some time and was concerned about the reported possible effects on the liver. My Medical Herbalist, to support the liver, then added Horsetail to the tincture he gives me of nettle root, Reishi mushroom and artichoke. Last week my blood test showed no problems with liver or kidneys! I still might update my research on Glutathione.
Sounds like your in good hands. Yes, the liposomal Glutathione form is out front. It's recommended to take it, or the non-liposomal form, 30 to 45 minutes before other supplements or food. I encourage checking out NAC as it offers enhancement for myelofibrosis pain relief.amoung it's repertoire.
NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days. The pains are from trapped nerves in thoracic and lumber vertebrae. I have been a professional orchestral violinist and all those tensions are probably coming home to roost. I am about to go back to my osteopath.
It is interesting. This article shows why liposomal Glutathione is the way to go because otherwise it's destroyed in the stomach
https://www.practicalpainmanagement.com/pain/neuropathic/relief-symptoms-associated-peripheral-neuropathyInteresting and very thorough article. Thank you. I just found this article about compatible vitamins and minerals. I cannot vouch for the authority. Perhaps it requires more research!
https://www.amandean.com/blogs/news/the-abcs-of-mixing-supplements-and-what-vitamin-mineral-interactions-you-should-avoidEveryone's favorite master antioxidant has very few negative interactions, which is yet another reason why its so easy to incorporate into your daily diet! It is so fantastic and goes well with almost everything. However, glutathione contains a substantial amount of sulphur, so you should not take glutathione along with other sulphur-containing supplements, unless you have received explicit medical approval to do so.
The sulphur caution that accompanies both both Beef Gelatin and Liposomal Glutathione goes not only for sulphur directly but any supplement that contains sulphur, including these popular supplements: garlic, glutathione, glucosamine, N-acetylcysteine (NAC), alpha-lipoic acid (ALA), chondroitin, and Methylsulfonylmethane (MSM). Since NAC and ALA are fairly popular supplements -- be careful and do your research before taking them in the same stack, at the same time as Glutathione.