Multiple Myeloma: why do light chain fluctuate?

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.

Here's an update on my status: After 2 cycles of carflizomib/pomalidomide/dexamethasone, I had a PET scan and amazingly, this regimen seems to have done its job in a fairly short time. My 2 new lesions have shrunk and there aren't any new ones. I did not read the PET scan, having pledged not to since I only get confused and freaked out, but I waited, and did receive calls from the nurses with my regular oncologist and my transplant oncologist. Both reported to me, that the doctors said the results were good as far as my bones are concerned. The CRNP who is my case manager told me that yes, this is what they're looking for to go ahead with ASCT in early February. I don't have results from my biopsy yet, but since my blood still all looks fine (as far as my limited understanding goes) and there's nothing lighting up on the PET scan, I'm not worried about that.

It's funny, it all seems pretty casual - my oncologist was out of the office all last week, so another doctor I've never met read my scan and asked the nurse to let me know only these words: "It's good in the bones." I know my fabulous Johns Hopkins CRNP told my transplant oncologist, "We need to call this woman," and she reported their conversation about my good bone results. But I haven't gotten any messages or anything from any doctors in my inboxes.

Based on my experience so far, no one reaches out unless something's wrong, so I feel like I'm always in this state of "please respond" but "no news is good news so please don't call me!"

I managed to get influenza A over Xmas - I'm practically completely back to normal now except for coughing, which is lessening all the time, but the inflammation in my lungs that showed on the PET scan was pretty epic, so I have to go to the oncology infectious disease people to make sure I don't have any secondary infections. I'm just trying to rest and drink fluids so that I don't get any sicker and I can get that crossed off my list - wouldn't it SUCK if they had to postpone my transplant because of something like that?! Especially after they directed me to stop getting chemo.

I'll quit this ramble but I did want to update that tentatively, hopefully, I'm set to start mobilization chemo on January 25. Every single thing I can have crossed, is crossed!

Typing this out is a good therapy for me as it turns out!

Hi Meg, I have MM had and an about 19 months out from auto stem cell transplant. Just wanted to affirm that like you, prior to diagnosis.” I was never like this,” meaning I did not get stressed out by every little thing. I do think it’s a way of adapting to a new and life-threatening situation and is positive rather than pathological in someway. So keep asking those questions! your original question about fluctuating Light chains is one I have asked as well, although mine referred to serum light chains rather than urine. Apparently, they can fluctuate a bit with hydration level or in response to more routine immune system challenges, like what occur after an immunization. I get very stressed and perseverative when they do pop up a bit, I think it is the return of active myeloma and I’m always given a wait and see message from the Oncology team. I have found regular discussions with palliative care team to be very helpful in navigating the realities of moving forward with truly living in the context of a potentially life-threatening illness. I wish you the best on your transplant, for what it’s worth I returned to work at about 10 weeks after although I was somewhat limited in energy in cognition. I have had a couple of routine viruses in the last year and a half where I have taken longer to recover then I would have normally, but other than that life is good, after not being able to walk either, I am reasonably active, and able to do what I want to do in my life. Just wanted to be another voice of reassurance that things can and do go well for people with multiple myeloma and that you can be one of them. best wishes and a big hug.

Thanks for your reply! I appreciate your "voice of reassurance," as you say - I sure need all I can get, especially as I prepare for the transplant and all the unknowns ahead. It's true that some of this is attitude adjustment - settling in to the fact that this is a lifelong condition.

I'm so encouraged to hear that you went back to work after 10 weeks! I truly hope I'll be able to follow in your footsteps. I find not working to be very difficult. I'm used to the structure of life that is planned out by calendar, as I guess most people are!

Thanks again for chiming in!!!
Meg