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My Journey to MRD Negative on Teclistamab
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Hi everyone - MM diagnosed jan.2020 Velcade gave me bad neuropathy still Numb with some pain after a wonderful podiatrist ( whose husband had Lymphoma and neuropathy ) told me quite quickly the pain between the 'knuckles' of the toes at the sole of the foot was not Neuropathy but Capsulitis -- gave me 8 shots of whatever in those muscles and two days later I was moving around with much less pain. After Kyprolis didn't like me either, I had been on Dara/Faspro for over a year - never quite in 'remission' but numbers very low.
Have so far avoided the SCT and do not wish to have one unless that's all I'm left with;
many factors went in to this difficult decision as SCT is always 'protocol' early on and I'm fit otherwise, so a 'good candidate'. There are so many drugs being developed now that SCT's I think- my non-doctors opinion is - that they will become something for only a few patients. SCT was the wonder drug/procedure of it's time.
I signed up for the Teclistimab trial back in April 2022 - and was a bit shocked when they said eleven days in hospital -- that was by far the worst part of it - nothing wrong at all with me except MM and much lack of sleep. Had cytokine release syndrome minimally, which began with pain in lower back - and then shakes all over with small fever - the entire thing lasted maybe 20 mins tops and all fine after shaking stopped, and that was it . Rather a lot of Dex taken, which fell away after a week maybe of leaving hospital. My numbers were plummeting and in June I became MRD negative - they search over a million cells from Bone Marrow sample and could not find a single MM cell. Finally they cut down the amount of injections to once every four weeks; however I picked up a chest infection back in Oct. 22 which I am still dealing with 6 months later, and have chosen reluctantly to come off the trial as Teclistamab seems to lower most patients immune systems and my Bronchitis got a lot worse plus sinusitis this February. The plan is to watch and wait, and if and when MM rears it's ugly head again we will in all likelihood reach for the Teclistamab. It's a wonder drug and I'm very thankful to have been on the trial-- fingers crossed for 2? years plus of MRD negativity. Forgive long post needed to give context. Keep on keeping on you marvellous Myeloma pugilists keep the gloves up as much as you can-- ---.
S.
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