Yesterday, I received my transplant date—27 February. It feels quite surreal, but I’m choosing to stay focused on the ultimate goal: being cured.
At just 44, I know I’m younger than most MF patients undergoing transplant, and I’ve decided to take this step now, before I progress further. Looking at me, no one would guess I’m sick—I look fit and healthy, and even I find it hard to believe sometimes.
I have an unmatched unrelated donor, and I’ve questioned whether waiting for a matched donor would be better. But since I’m no longer responding to Rux or Hydrea, I believe now is the right time to move forward.
I've been asked to consider the following clinical trial - IMPaCT BMT: Improving the Microbiome with Prebiotics in Cancer Treatment. Has anyone participated in this trial?
I’ll keep the group updated as I go through this journey. Thank you all for the support—it means so much!
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Hatchie
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Wishing you all the best Hatchie. Do let us know how you get on and know we are all cheering you on and supporting you, every step of the way. Think good thoughts! Hugs from NYC.
good luck with your transplant like you iam a younger patient I was diagnosed with primary mf at 24 unfortunately my journey was not easy and I had many complications and developed many other chronic illnesses so many transplanters turned me down as I was to high risk but I fought and last year I had transplant on the 28/04/24 got my cells on 8/05/24 I had a perfect unrelated match my consultant said we had go for perfect as we had so much against us to begin with it was the toughest thing I have ever done chemo was easy no problem I took it like water but the vod sepsis cdiff and gvhd wasn’t great but de sdcc lite all my complications I made it through and my age helped me massively my body was a lot stronger when everyone else was bedbound I was walking around so I hope it will be the same for you Iam now 100 percent donor no sign of disease but my numbers are still very low I just need make cells I was 39 at transplant so about the same I hope you keep us updated I would love read how you flew through in the next few months which hospital are you with if you dont mind me asking
Good luck in your next stage and I'm the same age and from speaking to the lovely people on here as horrible as it is having it we are slightly more resilient compared to some older generations. I'm a firm believer in positive thinking to help too x
Such a fantastic opportunity grab it with both hand's and start afresh with your Life !
I have MF and I will be Seven (7) years living with it come March 2025, I had just retired from my long career Nursing in the Hospital environment and knew absolutely nothing about MF until my Diagnosis..
Thankfully you are young and fit enough for SCT, you go and “Kick MF into Touch” then enjoy your life once recovered from transplant.
Thank you all for your kind thoughts and well wishes! I'm currently in Brisbane, Australia, and will be having my procedure at the Royal Brisbane and Women's Hospital. Today, I got a list of all my appointments, and it looks like they’re going to keep me busy! I’ll make sure to keep everyone updated on my progress. Your support means so much—thank you!
There are 100 ways to improve the microbiom and probiotics is only a small pet of the puzzle. Please find a really good functional doctor to get you going on this. You have to start immediately to modulate your immune system. Theres not much time till you transplant.
How I did it:
Omega 3 Fish oil from Norsan !! which is in liquid form (not capsules, which often contain rancid oil. 1 tbsp am and pm
Probiotics as follows. Most probiotics are dead and are useless. Invest in Live bacteria cultures, put amount suggested in a glass water, let sit for 10-20 min to mactivate and multiply, then drink fat on an empty stomach and chase with water to make sure it gets past the stomach acid asap. am and pm. Wait min. 20 minutes before eating. Doing all this will get rid of bad bacteria that crowding out the goos.
Zero grains except some rice 2x week
No sugar, milk products, night shade vegetables
Leave out everythig that causes intolerances
Yes:
As much organic food as possible, no chemicals in the house or on or in your body. They are everywhere! Reduce even the tiniest assault to the immune system, so that immune system can concentrate on the most important things.
Lots of veggies , boiled or suateed, but cooked well to lighten up digestion. organic, fish, meat, poultry, no pork which shoots off the immune system.
Lots of good fats to give you energy. this will help your body learn to burn fats for energy. after about a month you will never fell hungry again. really good organic olive oil, grass fed organic butter, Flax seed oil instead of fish oil.
Do take L-glutamin to help heal the gut and improve digestion.
Take 40-60,000 IUs of Vitamin D weekly. But check the blood rate first. Optimal is 60-80. anything under 50 is a deficite.
Stinging nettle tea, with 60-70C water and let sit for an hour or overnight before drinking. Bring a great ph balance in the body.
take a super form of natural magnesium that contains many different kinds of magnesium
eat 1-2 Brazilian nuts a day (full of selenium!)
eat lots of goos nuts and seeds (no cashews or peanuts)
If lentils and pulses, please, them must first be sprouted then cooked!! water rinsed many times during process and then rinsed and cooked.
Garlic is great (raw chopped or crushed and let do gain analin power for 10"). Eat at least 10 leaves of fresh parsley to kill the odor.
I never thought I would write this much. It's a lot to take in but please start somewhere in order to increase your chances of your tolerance after the procedure.
almost not built in a day anything you can do from this list is a step in the right direction. It took me months to get used to the system and about a year and a half to really go organic and get rid of all chemicals out of my house. d my whole family has had a new lease on life young and old, since doing the switchover.
the diet is called the autoimmune Paleo diet, and it is necessary to tweak it for your own needs. Every single body is different and will react differently to different foods. d leave out anything you know you have an intolerance to or are you suspect. try to stay away from alcohol as much as possible better to not drink any at all. if so, only organic.
I wish you all the luck in the world as youd made this very courageous decision! please ask your doctor MPN specialist or Haematologist about interferons and especially Besremi. After some years on that, many d I've gone to remission for two or three years. please look into that!
Best of Luck 🍀. You have people here who care about you and sending your positive vibes and prayers. Please keep us updated. I hope someone can help answer your questions.
Your young age will surely help a lot. Here’s a link to a paper that found improved transplant outcomes by maintaining a high fiber diet. Maybe related to what you’re talking about.
Hatchie - I join many others in wishing you good luck. I, too, am 44 years-old, and - while we are relatively young compared to other MPN patients - our bodies are strong, and that is important for transplants. Please do keep in touch on how it goes and - if you are open to it - please send me a direct message so we can keep in direct touch. You got this!
Good luck Hatchie. In your shoes I would do exactly same as you. I have PV and age 72 so on 2 counts not and never going to be a SCT patient but if it had been offered at any stage of this illness i would have grabbed with both hands.
Good luck on the BMT. Have you exhausted all other medications? Will you have to take anti rejection medicine for the rest of your life? My prayers are with you.
I have tried and exhausted all current medications available including interferons. I have also participated in the latest clinical trials available with no response.
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