No red skin just pain like a light sunburn. This can only be nerve issues i just hope when treatment stops it doesn’t live with me forever like neuropathy.. I’ve mentioned it to my care team that and the shaking also. The only answer I got was increase the Lyrica. I did for a few days and fell, luckily I had a soft landing. I’m done with that. I weaned myself back to two pills a day.
Thanks for caring. We can all do this.
He’s hanging in but it’s not easy as you know.
Oh my goodness. You are over this for sure! It really stinks that you haven't seen your specialist. I hope the 12 year old knew how to give your shot. I actually get the butterfly from the nurse and stick myself. I'm over it too. I hope you do okay with the lower dose of Lyrica. It probably doesn't matter, but I can only use Dove for sensitive skin. The bar, not the body wash. You will have to call them back if the burning continues. 😏
Maryanne, hoping he has excellent results with this new treatment. I bet he is tired. 💜
Hi Bob and Donna, My husband is on 4mg of Pomalyst presently. He just finished his 21 day first cycle today, and starts his the first day of his week off of the 28 day cycle. Empliciti infusion is every week for the first 2cycles and then once a month thereafter. When he was on Darzalex, he was also taking 10mg of Lenalidomide. After about 2 years, three months, his kappa light chains increased, no m-protein detected, but a ClonalSEQ bone marrow biopsy showed 1765 cells per million indicating a first relapse. The year before a ClonalSEQ showed 54 per million. We are waiting for results from his kappa lambda ratio and his IFE SPEP to see if the new treatment is working to bring down his kappa/ratio numbers. They should be in by the end of the week. We have an appointment with his MM specialist next week and another referral appointment with another doctor to discuss CAR-T.
This treatment is a lot harder on him than the Darzalex and 10mg of Lenalidomide that’s for sure. We’re not sure if the Pomalyst or the Empliciti is harder on him. MM is a challenging opponent and the choice of weapons to fight it are daunting. All we can do is try our best to be knowledgeable and pray we make the right decisions. Best wishes to everyone in our situation.
Maryanne