What Do Patients with Myelofibrosis Need to Know?
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- Опубликовано: 26 авг 2024
- A discussion with a panel of global key thought leaders regarding Myeloproliferative Neoplasms (MPNs). To learn more about MPNs please visit Exploring MPN at www.exploringmp... or MPN Connect at www.mpnconnect....
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My dad has this disease and has to get blood transfusion every 2 weeks and is taking chemotherapy pills every week. Unfortunately he seems to be getting worse and his wbc has gone over 100. But God is good and we’re all here supporting my dad. Bless you all.
I was diagnosed in 2011 after an age-related health check-up. I am 70. I refused medication and am doing well on very high doses of liposomal vitamin C in sunflower lecithin and with curcumin added plus a number of other herbs and supplements. My platelets have improved and other figures are only just out of the range. Others following roughly the same protocol with variations on Cancer Compass have experienced similar improvements. My consultant has said the protocol and results reported are interesting but cannot prescribe this because of NICE (from the Latin nescio meaning "I do not know'!). One significant addition worth reporting is the enzyme Serrapeptase. It is reported to 'eat-up" scar tissue and fibrin. I am hoping this will do exactly what it says it will do! Do some research. Research widely. Read widely. A healthy body can throw off disease!
Hey Roger, We're the same, I'm happy to hear this..!
Roger Stimson hello Roger! Good to hear what you experienced, it is very encouraging story! My partner was diagnosed last year. He did not take any treatment advice, just try to have a normal life, and he is fine, nothing changed.
I just ordered the Serrapeptase, thank you for the Help. I've been diagnosed with MF 7 months ago... and I'm getting worse (symptoms) by the month. I'm just turned 72, and other than Being Diagnosed all of a sudden with Diabetes Ketoacidosis and High BP with the last year, I've been relatively Healthy! Then last Aug - BAM! I'm on Vonjo (JAK Inhibitor) for 1 1/2 mo now... I don't see any differences in my Weekly Blood Labs. I've had 4 Blood Infusions so far. My Oncologist seems to be just "wait and see" with the Chemo med... but I don't care for the Best / Worst case Life Numbers he quoted me.
I have had MF since 2012 and for the past few years I have been having transfusions.....every 6 weeks at the present time.It certainly is a ‘strange’ disease.
Margaret Roselle My Prayers for you 🌹
Hope u are doing better now
@The Sentinel Of Abyss I am feeling pretty good atm having had another transfusion just recently.
@@margaretroselle8610 where you treated with chemo drugs before the blood transfusions?
@@Beefy2912 I was offered the chemo drugs but I turned them down. I’m not on any medication apart from Folic acid tablets and B12 injections.
Sleep, veganism, daily exercise; running, weights.... whole foods,,, I am five years in and kicking ass...
i have been told i have this disorder,the more videos i watch the more confused i get
razzaray How are you feeling now??
Yes,it is strange and puzzling,is this wretched disease.I have come to terms with it,however,and just take each day as it comes.Some good days,some not so good.I do hope you are coping o k with your symptoms.It can certainly be a challenge!
Hi Margaret, As I said earlier my figures have been improving steadily for two years on supplements alone. On January 31st 2019 my Consultant gave me my 4 monthly check up and blood test with a student in the room. He told me that yet another reading was improved (i.e. two now) while the others were stable. I said "Of course we have a different approach!" He replied, "Whatever you are doing keep doing it. It is working!" Liposomal vitamin C (home made see youtube and use sunflower lecithin) selenium is recommended, multivitamin and, notably, serrapeptase. THIS EATS UP SCAR TISSUE! (I use Serretia).Then supplements at choice and find a sympathetic expert to advise!
Go to cancer compass 'myelofibrosis and scroll back for great positive and, at times, detailed natural research and results contributions!
Best to all,
Toger
...sorry, Roger not Toger!