I was diagnosed in October of 2024 after I ended up in the ER with a distended stomach (liver was twice the size, I do not drink alcohol)hemoglobin at 7, constipated for days, and in incredible back pain., My first unusual symptom was foam in my urine at the end of 2023. My PCP told me it would work itself out, it didn’t it actually got worse (she went on an extended leave of absence) then came the Urgenf Care visits for flus twice, Covid once, pink eye, and ultimately back pain. I saw a chiropractor for months.. no relief. Was sent to a kidney specialist he tested me for Lupus and told me to come back in October. I was borderline anemic, had lost almost 20 lbs. in six months but mostly muscle mass so it was attributed to my lack of mobility because I was in pain. Was referred for an MRI of my back, the results showed fractures on my vertebrae. I had a textbook case, the kidney doctor should’ve alerted the PCP but didn’t. I was on Darzalex Pro, Velcade and REVLIMID for 5 months (I had a bad reaction at the beginning, but after one cycle I got stronger and felt better) bloodwork showed good results so the next step was to prepare for an ASCT in March. However, the cancer in the bone marrow showed at 80% I was put on Krypolis, Darzalex and Pomalyst for three cycles it reduced to 40-50% thus I’m still not a candidate for ASCT. Next week I am scheduled for the stem cell collection and will speak with my Oncologist on the 23rd to see how we are to proceed… It looks like CART T or a new treatment that just got approved by the FDA may be a better option than the transplant for me. I used to travel frequently, hiked, danced, have season tickets for our local Pro Soccer Team, like most of you had a full life that’s been on hold. I’m a positive person, I am surrendered to this role I was assigned but I can’t wait to get back into a more normal life.
