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May 13, 2025
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A MyMyelomaTeam Member

Dr. Kumar says that researchers observed more cardiac, pulmonary and renal system toxicity among patients treated with Carfilzomib than among patients treated with Bortezomib.

May 22, 2025
A MyMyelomaTeam Member

I was put on Darzalex January of 2023. After several months, and no appreciable change, we moved on. So, it didn't work for me. I was also on pomalyst, which gave me a horrible cough and decadron. This combo didn't work, I became more and more anemic, needing platelets pretty much twice/week and packed rbcs fairly frequently. I was switched to Krypolis which did help but too little too late. By summer, I was getting really bad. I had D-PACE chemo in August (which I swear almost killed me). Car-T Cell in September. Fungal pneumonia in October. Fell so hard cracked my head in infusion in November. Had my second bag of stem cells reinfused in early December (if you are counting, that is 5 hospitalizations from Aug-Dec) all the while having become completely transfusion dependent. Finally, in what I call my Christmas Miracle, I started growing my own cells and have not received any further transfusions to date. The Car-T Cells stopped working in August 2024. I was then hospitalized and Talvey was initiated in Sept 2024. I am relapsing yet again (3rd relapse) and we are trying to decide the next step as I type this. Imaging shows MM in EVERY vertabrae. I've already had palliative radiation of several areas, including the ascending portion of my left lower jaw, both arms, left femur. Now will probably need RT on rt hip and T-11 very soon. Unrelenting. Aggressive and refractory MM. Next options for medical treatment may be the other bi-specific or Blenrep. I've accepted the fact that I am not going to beat this MM but I will continue to fight and will not let MM define me.
Best wishes for a good outcome for you.

May 14, 2025
A MyMyelomaTeam Member

I am on third and it’s really kicking in the zometa is causing my jaw to be sore and the krypolis is causing a pressure when I breathe it’s a scary feeling I don’t want to sleep almost afraid I won’t be able to breathe I have to keep forcing water as I’m very thirsty get really cold then really hot bought cold cap for my head and neck is really hot. Sleep only 2-4 hours wake up pee drink water lay down. Need to take co10 or ubiquinol for heart eat apple or folic acid to breathe.
Everything hurts to get up and move but once I stand and walk it gets better I barely get to bathroom in time it’s a good thing I have pee pads for Buster all over the house cause now I need them lol!!!
I’m hoping this will get out of my system soon need to poop too took dulcolax laxative and stool softener fixing to drink smooth move tea if that doesn’t work suppositories and saline enema
Already tried miralax!
Its hell to get old!!!

May 17, 2025
A MyMyelomaTeam Member

I was diagnosed with multiple myeloma in February 2020 and given kyprolis, dexamethesome, and revilimid until August 2020 when I was placed on Kyprolis only. The kyprolis damaged my heart. My ejection fraction decreased to10 to 15%. It was very difficult for me to get out of bed and perform my daily tasks. The Kyprolis was discontinued and I was placed on darzalex faspro, dexamethesome and xgeva in December 2020. I also receive IVIG for immunodeficiency. I have minimum side effects with these drugs, however my kappa free light chain has continued to increase. It runs between 13 and 17 which is barely within the normal range. My ejection fraction has increased to 35%- 40% and I am able to complete normal activities including walking more than 10,000 steps several days a week.
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May 15, 2025
A MyMyelomaTeam Member

My MM journey started with every 28 days a Velcade Infusions, Dex and 21 days of Revlimid capsules with 7 off.
I currently have Darzalex Faspro injections every 28 days, 4mg Dex once a week and 21 days of Pomalyst capsules with 7 off
At MM diagnosis, 11/12/21, my Kappa Lt Chains were 2487.7, Lambda Lt Chains 6.0 and the ratio was 214.68.
Currently Kappa is 4.8, Lambda is 2.9 and ratio of 1.66.
I have had no side effects with any of the drugs other than Dex can make it a little difficult to go to sleep so I take Melatonin for 3 nights when I take the Dex.
My MM was found when my Nephrologist had an additional blood test made and after a bone marrow biopsy MM was confirmed. When I read all the stories about how people find out about MM and for so many, like yourself, by some serious symptoms like bone breaks etc. I know that my situation is not the norm. I'm thankful for this and do not take it lightly that it is by God's grace and nothing I have done to deserve it.
The VA has determined that my MM is the result of Agent Orange exposer when I was in Vietnam 67-68. All my treatments are at the Long Beach CA VA.

May 14, 2025

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