I'm looking for people who have Myelofibrosis and have had any surgeries done. I have MF2 & have my estimated life expectancy is 3 years. I have a back problem where nerves are being compressed and causing my left leg to hurt like crazy when I'm on it for more than a few minutes. So far I've been able to get some relief from spinal ablation but it's not working like it used to. In the last 5 months my right hip has deteriorated to the point of extreme pain and needing a hip replacement. My Dr. tells me that I am at an extremely high risk of having a stroke or getting a blood clot if I have a surgery to correct either condition. My question is, has anyone on this board with MF had a surgery and how did it go?

64 yo. Newly diagnosed MM. Taking DVRd regimen. A few days ago, my hands started itching like crazy, keeping me up for hours at night. EDIT: I spoke to my doctor. He thinks the itching is from heightened liver functions, which seems to be from some of the meds I am taking. He gave me something to take and I also take benadryl before I go bed. My itching has pretty much stopped. I don't know if it's part of the expected neopathy, but it's not that I have lost feeling in my hands ir feet. My hands tingle and itch and I cannot figure out what to do. It has kept me up for literally hours and hours at night. During the day, it seems to come and go, but when I lay down -bam. Its 1am where I am and have been up since 11pm when I tried to go to sleep.

I’m sooo tired of hearing these damn doctors saying there’s no cure for myeloma😩 I have a specific question: This is the current situation with my mommy. She just completed 3 rounds of Cyclophosphamide. I was just informed from her medical team at Houston Methodist Hospital, that they aren’t able to tell at this moment whether or not the myeloma is responding to the treatment. My adamant goal and question is how do we find a treatment that works to prevent the myeloma from metastasizing and relapsing? It’s really heartbreaking when you have already lost 1 parent to the same type of cancer 😩💔 This has been the ongoing struggle as of late for the last few months to a year, with my mommy. The treatment will appear to work for a little while then all of a sudden fit will not work and then she’s in unbearable pain 😩Why are some people able to be in remission longer than others? What kind of treatment is working for the individuals who are in remission? I’m asking for helpful insight please🙏🏾 I can also be reached at 713.530.9807. I’m adamant about getting her into remission🙏🏾

My husband has 1q25 mm, or that’s what they found on his initial bone biopsy, but apparently they didn’t get a good enough sample for a complete analysis. He was treated with dexamethazone, Velcade, Darzalex, and lenelylaminide with excellent response, and last May had the stem cell transplant. He’s starting to relapse after 10 months. His doctor wants another biopsy… which hasn’t been scheduled yet. I’m wondering if anyone has any thoughts about our likely path forward? I’m guessing CAR-T is a possibility, but wondering if there are any other good options that could perhaps be done locally.

I am 59 years. I am patient with myeloma since 2014. On april , 2015 I had bone marrow trasplant, receiving lenalidomide later. On February 2018 began with pomalidomide and daratumumab until beginning 2024. I was w Carfilzomib, I had good answer, but I suspended it due to kidney failure. Now I had cart t cell , 40 days ago. I feel very well up to now.

Does anyone have any experience with the Bi Specific Antibodies treatment? My doctor has started me on Ninlaro 3mg and said that when it loses efficacy, we will proceed with the Bi Specific Antibodies treatment. He said it is better and newer than Car-T. I am starting my 6th year of treatment having completed all the usual treatments.

If any of you have ever received financial support through a Pharmaceutical grant for medications or from a non-profit for co-pay, deductible, premium reimbursement, travel, or any other reason as a result of accessing Healthtree resources, please let me know. You can leave a comment. Much appreciated

Hi everyone, I am looking to hear from those who have undergone spinal decompression with stabilization (rods) for spinal cord compression. My father at 69 had spinal decompression with rods last month. He is currently in a bed/wheelchair, sitting with a brace, and undergoing physiotherapy. He is also on active myeloma treatment (KPD) I would love to hear how others have managed both surgery recovery and ongoing myeloma therapy. Specifically: Age & Overall Health – How old were you at the time of surgery, and did any other health conditions affect recovery? Recovery Timeline – How long did it take to sit, stand, or walk independently? Impact of Myeloma Therapy – Did your myeloma treatment (chemo, steroids, etc.) affect bone healing or recovery? Any delays in wound healing or increased side effects? Mobility & Quality of Life – Did the surgery improve your ability to move around and do daily activities? Pain & Discomfort – Was there pain relief after surgery? How long did it take? Rehabilitation & Physiotherapy – What kind of rehab helped you the most? Many thanks

For those of you are enrolled in currently or going to enroll in ACA Affordable Care Act (Obama Care) be aware that the premium subsidies are set to expire in December. There may be changes coming prior to that but no one yet knows. If the subsidies expire, the cost of your insurance premium will increase dramatically. You need to be aware of other options. The Medicaid options are probably going to be limited as well.

Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work? See less

Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work?

I am multiple myeloma patient and had Bone Marrow Transplant three and half years ago. I started with Lenalidomide 10 mg initially for 6 months and then 5 mg (3 weeks on and 1 week off) till now. Four weeks back I had undergone gall bladder Cholecystectomy. The biopsy report showed intestinal metaplasia. Could it be because of Lenalidomide? What is the chances of intestinal metaplasia developing into Hepato-biliary cancer?