Myelofibrosis Treatments in 2024: Treating this RARE, BLOOD Cancer | The Patient Story

[@joytotheworldrandomperson4098]

Mom mom had PV that has progressed to advanced myelofibrosis. Her spleen is enormous causing pain and discomfort. She can’t eat much because her spleen takes up so much room. She just started on Ruxolitinib. I hope this brings her relief. My mom is a warrior and doing well considering her battle. I’m grateful for this. This video - although there was much scientific discussion and I’m just a blue collar woman - was helpful for me to know where we can go forward if the RUX doesn’t do the trick. Thank you.

[@clemqueens1943]

Dr Pemmaraju seems like a wonderful doctor. His patients are lucky to have him. He seems to really have empathy for his patients and their symptom burden. This talk gives me hope that a cure may be in the future without enduring a Bone Marrow/Stem Cell Transplant. For me it’s not in time as I will be getting a Stem Cell Transplant in a few weeks. I look forward to living without Myelofibrosis or an MPN as I have been battling now for over 30 years.

[@stirlingrae2465]

can anybody tell me what reactive marrow means? I got a pet ct scan because I've been constantly sick with infection after infection for two years. 4x covid, double pneumonia, flu, uti's, eye infection, toe infections, bronchitis, kidney infection with a total of 5 rounds, b symptoms itchy, sweats, reoccurring fever almost every day, weight gain 50 pounds in 12 weeks 3 years ago from 48 kilo to 75 kg to sudden weight loss a year ago now 30 pounds down 15kg, two blood clots with elevated thrombocytes but on the high end of normal, high lymphocytes 3 times in 2 years, cough, breathing and swallowing problems, pain in teeth and face, flank pain, lower back pain to the point I can't walk on some days, headaches, 3 paralytic attacks that look like hypokpp, I've had a swollen spleen and swollen liver at one point, passing blood on and off, hemolysis anemia, they found a 16mm lesion on liver that they assumed was a fnh, after hysterectomy two cysts found on ovaries, metaplasia cellular change in stomach from chronic heart burn for 15 years, went through puberty at 7 and was done by 12 years old, high cholesterol with no known cause all across the board, bone pain in legs, arms, chest, itchy under arms and anywhere where there's lymph nodes, were swollen but none that stay, helicobacter pylori, 8 weeks straight vomiting, nausea, alcohol intolerance since 2015,and skin manifestations between 2011-2024. Had a pet scan and this is what was said Normal aspect of pharynx, high activity in epiglottis. Narrow No increased activity in neck lymph nodes A-specific activity near Bauhin's valve No active foci in the skeleton. Increased bone marrow activity, reactive. Now I'm being told I'm fine, but I'm not fine and have this gut wrenching feeling it's not good. I've been on a 2 year sick leave and lost two jobs. I have extreme days of fatigue and can sleep up to 16 hours a day. I live in Europe and going to a hospital that has the worst rep for ignoring information that have led to many unnecessary deaths because they ignore things. Reactive bone marrow is never a good sign or any hotspots found on my scan. can someone help explain if i should be getting a second opinion and what it means? please and thank you ❤

[@clemqueens1943]

I strongly urge you to get a referral to be seen by a Hematologist. They can answer your questions about your bone marrow issues and possibly do further testing. All the best to you and your improved health.