Ok so next up on the things that can go wrong with me
I went to see my Dr Wed to get my results of my MM marker test. Well he said your #are coming down but we found a T14 strain of protein in your urine. It's very rare and you have some rare cell mutations. The chemo I'm giving you is very aggressive but it's not working on this. I have 2 more treatment on this round and then my last 3. I should have been done with chemo the first week in Sept. Now I'm going to have to try something else
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Glad you are feeling good!! So sorry about the mixup! Stay on them! Sending healing and strength your way! 💕
Please get your answers from one of the reputable sites about markers. I have T(4;14) and 17p deletion TP 53 deletion. These mutations were found from my bone marrow, it represents high risk MM. It is part of the genetic screenings that should be done. Iv'e never heard of it being found in urine, but it could just be my ignorance. Anyway, there a no 2 MM patients alike! The experience of transplant, drugs, treatments etc., will vary from patient to patient. I had autologous stem cell transplant in February 2020 and I recovered in about 8 weeks. It was not easy! I think the best thing is to have a MM oncologist on your team! Also I agree, to have a way to take notes when meeting with doctors and your team. MMRF(Multiple Myeloma Research Foundation),IMF(International Myeloma Foundation), Healthtree (university). These accurate up to date sites can interpret labs and give information on MM. I like Healthtree because they are video clips. If you don't have the information you won't know what questions to ask. Educating yourself about your cancer will empower you, help you make wise decisions and help you advocate for yourself. Again your Myeloma is unique to you only! What works for others may not work for you.
Hope this post helps
ColleenDonnelly. I also had an oncologist that I didn’t like at all. He wanted to treat my MM with radiation. I did not have any lemons. I had even had the markers in place for radiation when my husband, a physician,
decided to take me to MA General In Boston.
There I met the most wonderful oncologist who told me they NEVER use radiation for MM unless lesions are noted.
I am so happy that I was referred to the oncologist at MA General. I was admitted to the Boston hospital for 3 1/2 weeks where she stabilized me on chemo therapy. 3+ years later, I was in remission which continues at this time.
This is our lives at stake and I realize liking, trusting, and respecting our oncologist is the most important thing. A physician is only as good as he/she is respected and trusted by their patients. I am currently off chemo, in remission, and see my oncologist every 3 months for bloodwork.
Coleen, This is why I tell everyone to get copies of their medical records. I don't know what he means by this?? Please take a pad and take notes during your online meeting. Usually the high risk markers are done on bone marrow results? Not sure about the one on your urine, but I would sure like to know. Yes, I'm hoping the meeting will give clarification to know what you are up against. Praying all goes well. 😍 I have high risk genetics, but they tested my bone marrow to find out.
ColleenDonnelly, I would be happy to answer your questions.
I took a very small fall in February 2016 and fractured my hip. I had to have a Total Hip Replacement. When the specimen from the surgery came back it showed I had MM. The only oncologist on staff at the small community hospital I was in, treated all cancers. He didn’t specialize in any particular type or MM per se. He prescribed radiation for me. I had a very small lesion on my hip which was removed with the hip surgery.
My husband didn’t think this sounded right, so he called other orthopedic surgeons he knew in Boston. They told him to take me out of the small community hospital I was in and to take me to Massachusetts General Hospital. They arranged to have me see Dr Elizabeth O’Donnell, a MM oncologist/specialist. My husband had me transported from the hospital I was in to MGH the next day where I saw Dr O’Donnel. . I was on the brink of kidney failure and oh so sick. Dr O’Donnell admitted me to the hospital immediately. As my husband and I spoke to her she told me that I would not be considered for a stem cell transplant since and the criteria at MGH for a SCT was 65 yrs old or under. I was 68 (The age limit has changed considerably since then).
Anyway, I was placed on Revlimid, Zomita, Dex and then Xgevia.
In December of 2019 I was in remission. My oncologist took me off the Revlimed and said she would see about maintenance after a few months of visits to her and bloodwork every 3 weeks. I did well and my blood work was fine.
I have been in continued response since 12/2019 so I am not on maintenance at the present time. I was however, getting the Xgevia injections which lead to my osteonecrosis.
I did need to have surgery for that at the end of this past February. It was under local anesthesia and again by a cancer oral surgeon at MGH. It really wasn’t too bad at all.
So that’s it. If you have any other questions just let me know.
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