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Has anyone told they went into remission without treatment?
I was diagnosed with MF in March. I had been seeing an oncologist for 15 months for Multiple Myeoloma, which hasn't been diagnosed yet. In Nov. 2024, I fell backwards into my wheelchair and hit some screws in my back but didn't break anything. Then I got Shingles, and as they were clearing, I ended up with what looked like red/purple bruises around my waist, under my abdomen and around my upper legs/groin. Since I am on blood thinners they looked like big bruises, and I showed my Vascular Surgeon the spots around my waist in Dec., and he concurred. In Feb. 2025 I went to my dermatologist and she did a biopsy and took photos. It took 3 weeks to get results and longer for an addendum. My oncologist did many blood tests, a PET scan, and a bone marrow biopsy. I was supposed to start light therapy, but this rash kept spreading under both breasts, as well as dots under my arms. My therapist and dermatologist said that my case was too complicated and sent my records to Moffit (Tampa). I went there on April 15 and a dermatologist and a hematologist saw me. The dermatologist said he didn't know what I had but it was in full remission. I was in shock. He said that the rash was mostly brown so if it was MF it wasn't active. I won't see my oncologist until May 15 (plus get my labs for him on May 8), but it appears most of the labs at Moffit concur with the labs I've had done, so I'm perplexed. I'm no doctor but I do a lot of research since it's my body and I'm trying get things straight in my head. First, I was diagnosed, then I was told my case was too complicated and then Moffit basically told me to stop the steroid medications and call then if my rash gets red/purple. I had a positive result for TCR gamma (y) gene rearrangement in T cells and a positive TCR beta gene rearrangement in T cells. I could go on and on, but has anyone been diagnosed with MF and then told with barely any treatment that they were in full remission? Do I or do I not have it? Does it have anything to do with Multiple Myeloma? (I've seen that there are some connections.) After not using the steroids for 2 weeks, I now have what my daughter says that looks like a heat rash. I don't remember having a heat rash even though I am overweight and we live in FL (but I'm kept freezing with menopausing daughters). Moffitt's doctor gave me a Nystatin powder but I just used it last night and I put it on the red rash after I checked all ingredients since I have many allergies. I don't want cancer, who would. But I believe if I do, I should have treatment so this is what is bothering me. I am 78, but I'm not ready to sayonara. I never heard of MF or Multiple Myeloma until a doctor suspected them, and I do have a lot of autoimmune diseases that may be playing with all my labs. I don't know. Any information that anyone can provide would be greatly appreciated.
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Hi @doreen78 and welcome to Connect. I think I’m as confused as you are about your diagnosis. ☺️ Miracles happen all the time, so never say never, I guess. But if you were diagnosed in March with Myelofibrosis (MF) through blood work, PET scan and a bone marrow biopsy, that isn’t the type of disease that reverses itself. MF is part of a group of conditions called myeloproliferative neoplasms~MPNs. Each member of MPN affects blood cell production whether red/white cells or platelets. MF can lead to scar tissue in the marrow interfering with normal blood cell production. The scans and bone marrow biopsy most likely confirmed this. I don’t recall hearing about a rash associated with MF.
If you’d like to learn more about MF, this is a good informational article from Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057
You mentioned seeing an oncologist for Multiple myeloma for 15 months, but it hasn’t been formally diagnosed? Was this just suspected that you had MM but weren’t in active treatment? I can definitely appreciate your level of confusion with not knowing what the heck is going on with your having either MM or MF and the possible link with the skin rash.
I did find a few articles that associate skin rash with Multiple Myeloma (not MF)
~Here’s one from Healthline.com https://www.healthline.com/health/multiple-myeloma/multiple-myeloma-skin
And info on MM:
~Multiple Myeloma is another type of blood cancer which affects the plasma cells in the blood. https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
It sounds like you need to have a fact-finding session with your oncologist. If I may suggest for your next appt on the 18th, start a little notebook with questions for your doctor. That way you can go right down the list and less likely to get sidetracked from getting your answers.
You might ask what the PET scan and bone marrow biopsy showed. Did they confirm Multiple Myeloma (MF) or Myelofibrosis (MM) or both conditions at the same time? What could be causing the rashes? What type of treatment will I need for MF or MM? What are the current stages of each of these diseases if I have them?
Are your blood results normal or do you have too many red or white blood cells? Is your platelet level higher than normal?
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3 ReactionsHi doreen78,
First off, no, I have not been told I am in remission from any MPN. I do understand your frustration though. I also have a somewhat confusing case as I was first told on January 10, 2025 that I have ET by my O/H on my first time ever appointment with one. That was probably because I had a new insurance with a routine physical with lab work that showed I had elevate platelets and white cells. My chief complaint was a very enlarged ring finger proximal phanageal joint that is painless but feels like both extra bone and fluid are in it. My other insurance orthopedic hand specialist could not figure out what it was and was just offering exploratory surgery which I declined as no pain as she said my finger may not work right afterwards. I have pain, no stiffness, no symptoms, no fatigue, no headaches, no I itching or rashes, and still do not, and am healthy and fit in my opinion. I just have more difficulty writing as I am right handed. I would really like to have a doctor determine what I have in my right finger still, but that is not being addressed by the doctors although I keep asking. I saw a rheumatologist who said she did not know what it is and wanted that joint to have guided ultrasound aspiration but it was denied by a Kaiser radiologist so never done. All I could get them to approve was a bone marrow biopsy which I did on February2,2025. On February10, 2025 I received a memo in my kp.org from my O/H who said I probably have Primary Myelofibrosis instead or ET. I have CALR mutation and my risk analysis came back very low and low on the two scales Kaiser uses. On February 2, 2025 I had a bone marrow biopsy and required lab work right afterwards that showed by hemoglobin and red cells were way low out of normal range and my white and red cells decreased too. I have taken no medication ever for twenty to thirty years and only started baby aspirin when my O/H decided after February10,2025 that I could take it after first telling me no I could not. Amazingly, monthly labs after that February 2025 lab showed my hemoglobin and red cells are completely normal again, white cells decreased from initial first lab, but higher than normal, and platelets high still. Since Hydrea lowers all cells and I have already experienced the lower than normal results leading my O/H to thinking I should be sent for a bone marrow transplant, I do not feel best for me to take it. She said there is no med that just lowers platelets and all meds lower all the cells. I still have no symptoms so I just take baby aspirin because of high platelets and check my BP every morning and it is normal with no meds, and do labs. I am 65 and still feel well, exactly the same as I always have so this is all very confusing to me also.