Diagnosed With Myeloma In 2023. I Have Chosen Not To Do Any Chemotherapy Or Revlimid. Has Anyone Tried Darzalex And Was It Helpful.
I have been on D-VRD for 14 weeks so far for induction therapy (diagnosed Dec 2023). I have been responding to the treatment very well and numbers continue to improve. Scheduled for SCT next month. I think Dara is a very effective drug.
Aloha and thank you so much for the information. I’m going to give Darzalex a try in April and hope for the best.
Mahalo Billy!
RVD (standard induction therapy) didn't work for me, so I then went on RND (Revlamid, Ninlaro and Dex) for one year until progression. Then I started Darzalex prior to ASCT and have been on Dara maintenance for the last 4.5 years post ASCT with minimal side effects since it is a minimally toxic agent.
Aloha Danna,
Thank you so much for answering my question. I was diagnosed with Light chain IgA . I was diagnosed in September 2023. My PCP missed all the warning signs for almost a year. He is no my doctor. I had 17 thoracic and lower lumbar fractures along with 9 rib fractures. I had Kyphoplasty done on December 21 and had 12 vertebraes cemented. The only thing that has kept me going is my wife, three adult children, faith and the fact that I have spent 59 years of my 70 working out and competing in the masters division track and field. My oncologist is surprised that I can even walk with all the fractures. I did start Xgeva five months ago and that has helped tremendously. I will also start Darzalex the first week of April and see how well that works. I did try Revlimid February 19 but had such a bad reaction that my oncologist took me off the next day. Again thank you for your advice. Mahalo Billy!
I have free light chain kappa type myeloma which is one of the very aggressive ones, my research was telling me I might have a year if left untreated. I have noticed that not many people mention the type they have. There are 10 types from what I have read. I suggest asking more questions and doing research and begin some type of treatment immediately. I am stage 2 also and was doing great and was physically active just off a trip abroad until I went down suddenly, one day my back was killing me. I tried ice and rest at first for a couple of weeks and then finally called for an appointment and got in with the PA who scheduled some test and at first the pain location pointed to possible kidney stones. They did an x-ray and scheduled a CT scan which was a week or so wait. Long story short. I went from great to less than 3 months later my kidneys were functioning dangerously low and due to bone damage in my vertebrae had a 55% compression fracture that I had filled with cement. I have height loss in other vertebrae as well. I am not trying to scare you, stay positive but do something and do it soon.
Remission After Stem Cell Transplant
Looking For N-of-1 Stories (We’re All A Unique “Case Of One”)
For Those Of You Who Had Car T-cell Treatment, How Long Was/is Your Remission?