Dara Faspro, Pomalyst, Dexamethasone
Anyone received darafaspro, pomalyst and dexamethasone for relapsed mm and once your m spike light chains and immunoglobulin’s all in the normal range or even below normal for several months in a row been taken of any of these treating drugs?
Cat, here is the name of the lab and the test.
ClonoSEQ B-Cell Tracking (MRD) Report, Blood-Adaptive Biotechnologies
That is what my oncologist told me too was hoping to get off one of the drugs preferably the pomalyst and not sure about long term dexamethasone.
I guess I had it too easy after my stem cell train 2016. My sct was brutal bit I got through it with 7 1/2 years of remission and only on ninlaro for maintenance after being taken off velcade in 2019 for maintenance. I also got and still get xgeva for my bones and since starting darafaspro m pomalyst I get ivig as all my immunoglobulins, rbc, wbc , hemoglobin are way below normal.
Side effects like fatigue, blurry eyes. Weakness, shortness of breath are bothersome.
I was hoping they would be less bothersome after awhile
I really am not complaining but I never seem to have energy and the will to do some of the things I used to do don’t have the energy
I do go to the gym 3 days a week I added another day as I haven’t been playing pickleball for the last 2 months hoping to maybe get back to playing in the winter since we will play inside as playing on the concrete I’d hard on my back and leg pain.
I haven’t had any fractures or any new lesions since my diagnosis in 2015 so am glad about that but I do have the narrowing of my spinal column which puts pressure on the nerves and causes pain in my legs and numbness in my toes.
I am not complaining because there are so many wonderful mm patients that have it much worse than me and I pray for each and everyone diagnosed with this disease.😀
Hello! I relapsed in 2021 and started a regimen of Pomalyst, Darzalex Faspro, and Dexamethasone. There have been tweaks along the way - only taking Dexamethasone on the day I receive Darzalex and reduced milligram dosages of the Pomalyst, but the basic treatment has remained the same. My doctors have told me I will stay on this regimen until one of the following happens -- 1. It stops working or 2. My body cannot tolerate it anymore.
Hope this helps answer your questions. Blessings!! ♥️
Hi Cat, I've been on Darzalex and Pomalyst since before and then after my transplant on December 20th, 2017. I have high risk disease. I get a bone marrow biopsy each year around November. Emory sends a sample to Adaptive Biotechnology in Seattle. I had 43 myeloma cells per million on my last test. They won't let me stop treatment as long as I'm mrd positive. Maybe not even if I go negative. Unless I have side effects. They did let me stay off Dexamethasone. I don't even take it on Darzalex shot day. Anyway, I'm glad you are going to ask about MRD testing. I hope and pray we can both safely come off treatment at some point. I'm very thankful that this treatment has worked so well for me. I do okay with it except for the awful fatigue. Diet and exercise helps tremendously.
I have been doing exactly as you describe as my second therapy since last October. Recently my oncologist had a special test done by a lab in Washington State. Apparently it's the only lab in the US that counts cancer cells in your blood per one million cells. Mine came back at less than one cancer cell per one million cells tested.
They actually found one cancer cell out of 3.3 million blood cells. As of yesterday I am now off pomalyst completely and will continue with once a month darza faspro and dex. Doc said I should feel overall better being off the pomalyst. Now I will enjoy my good news knowing the numbers will go back up and I will start another new and great therapy one of these days. I am soon to be 77 so any time I get is a blessing. Cat, I pray you will be blessed as I have been.
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