MM light chain fluctuation/rising

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😂

Welcome to Mayo Clinic Connect, @meg1685. From my understanding, they want to make sure everything is "good to go" before your SCT, so having to back off to avoid complications can be seen as a good thing.

Good for you for not going down the Google rabbit hole! It's easy to get lost and misinformed there. @auntieoakley Chris is a wealth of information for us all here in the blood cancer group!
Ginger

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

Thank you, Ginger! I'm glad my team made the decision to hold off, I just want this round 2 regimen to work and I was upset to see those light chain numbers going up. Damnation! I know with the moving parts (as @auntieoakley describes them) that it's probably not worth losing my mind over just yet, but I have trouble feeling optimistic about it since those numbers have only gone down since my first week of round 1 chemo back in June.

Interestingly, one of my students' husband was a major leader in the pharmaceuticals we're all benefiting from. (Now he's the chair of the Smithsonian National Board!) I always run my drug regimens by him and he called my latest one "state of the art" and, after it, I'd be "good to go." I love his vibe!! Anyway, it's thanksgiving and he's high up on my list!

Best,
Meg

@meg1685 Having a doctor who can convey things in a positive manner is nice to have. I am blessed that my medical team works together with me to coordinate treatments, medications, and we all share information. Unfortunately, the records management system is two different ones.

You'll miss your retired doc, definitely. And guess what? You have the opportunity to train up your new one to be like the one retiring, playing "good doctor"! You'll be doing yourself and countless others a service to do so.

Deep breath, grab a cup of tea with a few cookies. You got this!
Ginger

@meg1685 My wishes that your MM is brought under control. It is difficult to transition to a new oncologist for a number of reasons, I sincerely hope your new one is as helpful as the one who is retiring. Your are right to be wary of what you read on Google, to know what really applies to you but more knowledge is generally beneficial. Then there are sites such as this one, https://www.mymyelomateam.com, and https://www.myeloma.org/ as well as numerous groups regarding autoimmune disorders. These sites have proctored information from physicians and researchers well versed in these disorders. They have members who have the disease and are so giving of their time to explain what they have gone through with the disease and provide so much support.