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Sharing Mom's Complex Story: MM & Myelofibrosis
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Hi everyone my name is Andres, I live in South America, my mom with 67 years old lives in Cali-Colombia right now, she was in Orlando before she was told she has MM, she started with a lot of pain in her back and a lot of anemia, her hemoglobin was at 4.7 so she had to enter to ER in “imbanaco hospital” and run several exams and there she was diagnosed with MM. The doctors did blood transfusions and platelets transfusions, they started Chimo with dexamethasone and other medicine which they said it was the best treatment, after 3 cycles in that hospital we moved to a “better hospital” called “fundación valle de Lili” where they run again a bone marrow test and she was doing great, she finished the 4th cycle in this new hospital and the doctors were preparing everything for a marrow transplant because she was in perfect conditions. In the meantime she was suffering a small tingling in her right leg so she went under a Pet-Scan test and they found a small mass in the lower back which was affecting a nerve. They did very punctual radiotherapy and she started to feel better, few days later she began to have some pain at her back but doctors said it was a side effect of the radiotherapy, but at the same time she began with a lot of vomiting so she went back to the hospital and the doctors said she had salmonella, she was treated and felt better but her back pain didn’t go away, due to that the doctors started to apply hydromorphone to calms the pain combined with other medicine, my moms brain started to act weird so she was talking nonsense sense things and other side effects and screaming and confused, it was a hard time. The medics did a new and more complete pet-scan and discovered she’d had multiple masses in her back so they did radiotherapy again in different areas, her pain went off within some weeks but she wasn’t feeling so good, her platelets and hemoglobins was pretty low so they did some new transfusions and also a new bone marrow test and send her back home. Within one week and a half her status went worst, she was almost dying at home and her new blood test showed her hemoglobins dropped to 3.4 so she was taken in ambulance to ER and entered to ICU were the doctors did some new exams and more blood transfusions and platelets to stabilize her. She was in ICU for almost 3 weeks, when she got to ICU the bone marrow tests came and basically the doctor said that her case is very difficult because she has her bone marrow compromised in 55.3% and the type of mm she has in a rare one and more difficult to treat. So they started a new chemo treatment called KRD, they did it while she was in ICU but her hemoglobin and platelets are low so she has been receiving constant blood and platelets transfusions, and now they are gonna put a feeding tube since she hasn’t been eating that much since she was diagnosed with salmonella.
This is a background and an explanation of everything, the interesting thing is that her kidneys, her liver, her heart, her lungs and everything is working normally and with no complications. Today the doctors had a meeting with my dad and told him that she has MM and Myelofibrosis two type of cancers at the same time, so they are running a jack-2 examen in order to know what type of chemo they need to work with.
At the moment she can’t have a bone marrow transplant. We have heard of the CAR-T treatment but in Colombia they don’t have it.
Hope anyone can give me a feedback.
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