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Multiple Myeloma: why do light chain fluctuate?
Blood Cancers & Disorders | Last Active: Jan 6 10:58am | Replies (9)Comment receiving replies
Hello @meg1685 this is a really complicated cancer with a lot of moving parts, but there is good news here too. Many, many people are living a very long time with MM. My husband was diagnosed may of 2010. It sounds like you have a good team and are planning for ASCT.
My husband did one and then 11 months later, a second. He was 68 and 69 respectively at that time. He said it was hard but he would do it again. He had lesions in almost every bone in his body, and a broken back. That is how he was diagnosed.
I love how organized you sound in regards to your testing. One of the things we learned from a seminar by the international myeloma foundation.is to get organized. You are in it for the long haul. They also have tons of available info for you on the website.
https://www.myeloma.org/
Have you had a skeletal survey yet? Was this your first PET scan? Where are you planning yourASCT? So many questions😂
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Dear @auntieoakley ,
Thanks for responding with such an encouraging vibe! Haha, my oncologist (who's officially now retired today), is like that - he's my "good cop," and my PhD/MD brilliant transplant doc at Johns Hopkins is my "bad cop" - always presents information in a dire fashion that makes me practically lose the will to live! I hope the new oncologist steps in and provides the "good cop" perspective!
This was my fourth PET - one at diagnosis, one halfway through my first round of chemo, one right before the now-delayed transplant. My numbers from biopsy, urine, and serum labs were showing virtually complete remission. But the PET scan showed these two new lesions in my femurs that measured about 7mm. At diagnosis, I was full of lesions from skull to hips - they didn't scan my thighs - and now I only have 2 lesions, so obviously my first round worked, I just have a relapsed or refractory condition. I went from thinking my ribs were broken, and then couldn't walk AT ALL, to feeling perfectly fine and better than I have in a year!
My ASCT - if it goes ahead this time - will be at Johns Hopkins.
I am so happy for your husband, and for your family, that things have gone so well for him! He is an inspiration to me at a time when I need it!!
Best,
Meg