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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
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!
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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.