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Smoldering Multiple Myeloma and symptoms
Blood Cancers & Disorders | Last Active: Aug 7 11:58am | Replies (65)Comment receiving replies
@maddogstormy
I am also enrolled in the Dana Farber clinical trial 24-135. Just received my second step up dose of Linvoseltamab 4 mg along with the steroid and antihistamine.
I have intermediate SMM with gain 1q and monosomy 13. IGG Lambda. M-spike 1.8 and flc ratio of 30.1. Plasma cell percentage 10-15%.
Randomized into 200 mg track. One more step up dose, 25 mg, next week before my first full dose, 200 mg, on 8/10.
Just curious, what did you find most challenging about your experience.
Replies to "@maddogstormy I am also enrolled in the Dana Farber clinical trial 24-135. Just received my second..."
@righty01
Hi,
I am high intermediate with 4/14 translocation and 13qdel.
K/l is 0,025 and at 0,1 they will start treatment. How high were your lambda and your kappa respectively?
Thanks and all the best
Mascot
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Hi. Congratulations on beginning your treatment. For me the treatment hit my immune system harder than I expected. It helped a lot when I was given IVIG infusions which will continue until my immune system begins to function.
Fatigue was and continues to be significant.
I am finally designated CR. My bone marrow biopsy last week results are not yet complete. Although it is clear I am not yet MRD Negative.
I am describing this stage as a kind of recovery. It’s different and unfamiliar territory for me. I am shocked at how short this has been and how long it feels.
I would say I am not even sure how to talk about it or make sense of this yet.
I do think and I might even feel like I am getting better.
I hope that is helpful. I am sure every person who receives this treatment will have a different experience.
I also know that the whole team at Dana Farber is amazing. I am fortunate to be there.