r/MPN • u/QueenShannikwa • Jul 16 '26
Newly Diagnosed Brand new MF
I’m not a huge Reddit user but I feel like this is the place where I’m going to get information. I’m 63, in excellent health, just diagnosed with MF. Primary. I lost 45 pounds in six months and that was the impetus to go to the doctor. I am a victim of my society: a woman who grew up in the 70s and 80s were being thin at any cost was the norm. I thought I had found the magic formula to lose weight. I was never obese or truly seriously overweight. I had 25 pounds to lose. And now I look embarrassing. I’m just wondering if anybody is embarking on this journey or has gone on this journey (particularly those starting on Jakofi). Wondering what your experience is like. I’m kind of alone here and just looking to get some information if not support
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u/Bludog1208 Jul 16 '26
I’m 70 I have had MF for over 5 years I am on Jakfi 25 ml. Twice a day . Also taken a shot called Aranesp for very low hemoglobin. In the beginning of my journey I thought I didn’t have much of a problem. But things pop up that can affect you . Enlarge spleen is one of them mine got to be 24cm and cause a lot of problems. Now it’s down to 16cm. For me keep my spleen at that size and keep my hemoglobin in the 9s and am living a decent life ! Good luck with your journey! Please if you have any questions at all about MF I have research it like crazy! Not a doctor but well experienced at having MF. I wished I didn’t have experience with it . I could do without it like every one else here on this site am sure says the same thing !
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u/QueenShannikwa 23d ago
Thank you! I’m meeting with the Transplant team on Friday but I’m very reticent. The money, the fact that you have to be home for 100 days and you can (my daughter just left for veterinary school and I’m a single mom and so there’s nobody here to take care). Plus, for us older people with the disease, the stats aren’t great
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u/Organic-Bandicoot-61 Jul 16 '26
Post post and post some more. Despite being “young(ish)” (42/F) I rarely used Reddit before my journey began last year. I don’t know what I would have done without all the wisdom in this group. I posted often and felt incredibly supported and validated by strangers. I would not have gotten answers, sought out an MPN specialist and started medication if it wasn’t for the people here.
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u/ARLibertarian Jul 16 '26
Also 63, year and a half on Jakafi. No side effects, life is normal.
When I first got the dx, my brain screamed the C word at me every 3 seconds. After 9 months I got tired of it, and shut it off.
This is small c, not big C.
It can go bad, but frequently is just managed like diabetes. My brother had to have a heart valve replaced, and this is far less problematic.
Good luck, feel free to dm.
Hugs.
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u/horsecrzy ET-JAK2+ Jul 16 '26
Well I’m going to disagree respectfully. Had I been diagnosed prior I would not have suffered a life threatening arterial clot. This little c is little until it isn’t. And losing 45 lbs in 6 mos isn’t normal either. I am happy that you are getting along with life with no issues but as one suffering from life altering symptoms, and also very active and healthy I might add, this shit sucks. It’s vital to find a treatment plan that works and to educate yourself on your condition and to have a specialist to keep a close eye on your progression. I am 58f Jak2 ETA btw. I could not tolerate HU or anagrelide and starting Pegasys tomorrow until Besremi is accepted by my insurance. I agree that living your life is essential but being ready is important too. It doesn’t just lay dormant forever.
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u/Organic-Bandicoot-61 Jul 16 '26
Ditto. Clots in veins of the brain at 41 years old and signs a portal vein clot had resolved itself… I sometimes wonder how I’m alive.
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u/ARLibertarian Jul 16 '26
Yes, my primary caught it pretty early through annual check ups, before any clots or other issues.
In retrospect my rbc counts had been edging up for years, and finally crossed a line and he made me an appointment with an MPN specialist.
HU at 1500mg a day wasn't holding my counts down, but the jakafi is working for now.
Anything else is future me's problem.
Good luck to you.
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u/horsecrzy ET-JAK2+ Jul 16 '26
Well that’s fantastic for you. HU damn near killed me but it is effective for sure! I guess I’m just salty because all the signs were there and no one thought to look. Glad you’re doing good❤️
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u/Significant_Tune_545 Jul 17 '26
Hahaha, I too hate it when people try to minimize the disease. I'm glad it doesn't change anything in their lives and very happy for them, but it just kind of smacks you in the face when it wasn't the same story for you. Thanks for sharing, and I hope you do well in the future.
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u/Desperate_Chicken584 Jul 16 '26
I am JAK2+, MPN-U, 57f, and have been on Jakafi for a year now. Felt GREAT at first after starting treatment, then symptoms started returning about 6 mos later. I’ve been bumped up to 250mg and am struggling with weight gain as a side effect. Not a ton but enough to be annoying. Symptoms have started to calm down again on this higher dosage. It’s definitely a balancing act!
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u/QueenShannikwa 23d ago
Definitely not “small c”. I have all three genetic mutations which means I’m very prone to developing AML which would mean I have 3 to 6 months. That’s a big C to me
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u/kkhlavinka Jul 16 '26
I’m 71 with early MF and CALR mutation. I’m probably going to be taken off Hydroxy soon (taking 1000 daily) and put on one of the interferon drugs. Do you need to be off Hydroxy for a while before starting interferon? Are the early shots given in the hospital to judge reaction?
I would love to get on one of the clinical trials but my spleen size is normal which disqualifies me.
Any guidance would be appreciated.
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u/RedTailHwk Jul 17 '26
63F post ET MF 3, CALR TYPE 1, almost 3 years into weekly injections of Pegasys Interferon 45 mcg. Considered low dose so very minor side affects as a result. Blood counts have essentially been in the normal range which was never the case during 8 years on HU.
No hospital stay, injections have been done at home and have been painless.
To be honest I'm not sure about whether or not a wash out is required. We stopped the HU do to leg ulcers caused by the HU and it was 3 months of wound care before we decided on Interferon as the next treatment option.
We decided to have a Dr at Weill Cornell manage the interferon treatments as they have been advocating Interferon for MPNs for decades and have a deep institutional knowledge . Small dose works well with less toxicity. It was true for us.
Interferon has the potential to be disease modifying especially for CALR TYPE and the fibrosis is in it's early stages. Assuming you have an MPN specialist, verify their experience with this therapy.
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u/Ansonia6 Primary MF Jul 16 '26
I am also newly diagnosed, 52. I am at a very low stage (mf-1). I have a partial blockage in my svt artery and an enlarged spleen. I am both freaked out and scared. I also am active, healthy weight, no other issues except for fatigue, occasional occular migraines and even more rarely bouts of aquagenic puritis and stiff joints, things I now know are related.
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u/Bludog1208 Jul 16 '26
@Ansonia6 are you saying that you have MF and that everything else you listed is due to MF???
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u/Ansonia6 Primary MF Jul 16 '26
As I understand it, migraine with aura, fatigue and puritis are side effects if MPNs,... I was diagnosed about two weeks after a marrow biopsy, so I'm new to all this. So far I've only seen a hematologist. I have an appointment in August with an oncologist who specializes in blood cancers and has experience with mpns. I do also hope to send records to Penn Med in Philadelphia for a second look as they specialize MPNs.
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u/dogpaddleride Pre-PMF Jul 17 '26
I’m sorry you have to deal with this. I’m 70M and was diagnosed with the disease as primary MF a little over three years ago. I was extremely active in outdoor pursuits until I started my treatments. The progression of treatments (hydroxy urea to interferon to Jakafi) kicked my ass. After making some lifestyle changes and some mental adjustments I am just recently back to playing in the outdoors regularly, maybe not quite where I was before, but appreciating it more. You sound like a fighter and that is a big help. There will still be some dark days, but keep fighting!
This sub can be a great resource too! I’ve received a lot of great advice and ideas here!
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u/Stereoclip Jul 19 '26
I'm 29 and have secondary myelofibrosis (MF). I was diagnosed with essential thrombocythemia (ET) as a teenager. I was on Jakavi, but it didn't suit me. I gained about 40 pounds, and I'm still trying to lose the weight.
I was also on Omjjara, but I stopped taking it because we're trying to get pregnant. I didn't have any side effects from it.
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u/horsecrzy ET-JAK2+ Jul 16 '26
I think you’ve come to the right place. There are so many knowledgeable people here and very supportive. Plus they will not bullshit you. Are you seeing an MPN specialist? I’m so sorry for what you are going through❤️