Yes your body needs the rest it’s 6months for me in remission and you will get tied but you will slowly recover.. My mine wants to go full force but your body will let you know …. And then it takes me… read more
How quickly did your Kappa Light Chain numbers come down from initial diagnosis before treatment, more specifically after how many cycles? Did they keep coming down or did they plateau? My husband's Kappa Light Chain was 998 at diagnosis before treatment began. After one cycle it went to 166.9, and after almost the end of the third cycle it went to 23.9. Presently on RVD 21 day cycle.
I was diagnosed in Oct 2020 with IGG/Kappa myeloma after a total collapse of my T5 vertebrae and spinal cord compression leaving me unable to stand and walk for a couple of months. I am on my 4th line of treatment (including Stem Cell Transplant june 2021) and I am currently preparing for T cell collection on May 10.
Thankfully I am able to walk on my own now! My myeloma is very aggressive and I have not had a break In treatment since my diagnosis except for 3 months when I was battling PAH… read more
My husband is awaiting his CARt cells as we speak...he is scheduled to go into hospital 5 /16...so far the collection and testing has gone well...praying this therapy will give him success...he had… read more
I take 16 mgs of Dexamethasone once a week during Chemo.
It literally sets my face on fire and I look like I have an incredible sunburn. It truly hurts and my skin on my face is cracking. (Won't even start on the no sleeping for 3 days).
Oncologist won't take me off of it as my MM is responding well to the Revlimid, Dexamethasone, bortezomib injections and Acloyvir.
Is there a special lotion or cream I can use to help with this reaction?
When using dex common to have trouble falling asleep although mine only lasts on e night. For me used with daratumamab
Sorry I don't know what this is, have you googled it? or talked with your oncology team.
I started this journey 15-16 years ago. They FINALLY figured it out after I had 7 compression fractures. The back pain would bring me to my knees. They finally sent me to a pain doctor who started me… read more
There are different translocations, some are high-risk, and others are not
For instance, translocation of 11/14 is one of the most common and more benign genetic translocations
I have light chain MM, which if I recall,, is more prone to amyloidosis. Fat pad biopsies every year since MM diagnosis. After 11 yrs, fat pad was positive. Upper and lower intestinal bx concluded… read more
I will have the central line placed tomorrow and the collection, apheresis, 6/15 16. My question is, how do you feel over the next week following the collection?
I hope you do great with harvesting JD🙏💕
Wow Cheryl. What a story. Praise God your husband is doing well.