[JinMingDao]

Re: Relapse 9 months after transplant - now nonsecretory

by JinMingDao on Wed Sep 23, 2015 9:57 am

Thank you, Ian, for that fount of information! The more treatments one has, the more likely patients are to become nonsecretory explanation might be the key to why I flip flopped from secretory to nonsecretory. I truly appreciate the time you took to detail this explanation.

[Ladyaero]

Re: Relapse 9 months after transplant - now nonsecretory

by Ladyaero on Wed Sep 23, 2015 6:48 pm

My husband also relapsed from his SCT very quickly (7 months in his case) and has been non­secretory since. His shows up as many (many) plasmacytomas that are visible to the naked eye. Some are soft tissue (like in his cheek and on his chest), some bone related (skull and shin), but he hasn't had an M-spike since his SCT (he had one at diagnosis in 2010 and before his SCT in 2012).

He has done 3 different types of chemo – carfilzomib (Kyprolis); Velcade w/dex; and Velcade / dex / Cytoxan (my husband is allergic to Revlimid and Pomalyst) – switching each time the plasma­cytomas started coming back while still on chemo.

Since last Thanksgiving, when the last chemo stopped working, we decided to try to keep things in check via radiation for a while. It seems to follow the pattern of radiation for 2 weeks, takes another 4 weeks for the plasmacytomas to disappear, and another 4 weeks for them to come back. He has had about a dozen new (visible) tumors pop up in the last 2 weeks, so it's time to decide whether to try one more round of radiation or go back to chemo.

My husband and his doctor have been avoiding too many scans for fear of secondary cancers, so we really don't know what might be happening internally, aside from when my husband can say "this area hurts."

Cancer is already such a big unknown, having it be nonsecretory makes it even more frustrating (I hate not knowing things!).

[JinMingDao]

Re: Relapse 9 months after transplant - now nonsecretory

by JinMingDao on Thu Sep 24, 2015 12:06 am

So very sorry to hear of your and your husband's struggles, LadyAero. Evil disease. I originally had 5 areas of concern before chemo and transplant. I now have 2 areas that showed activity in my PET scan: the rear mandible (right jaw), and my femur. I have a fractured rib, but that didn't show as active this time.

The jaw swelling and my lip/facial numbness is the clue I monitor, and noticed that something was wrong. The jawbone still feels hard though, so the tumor may not be soft tissue, unless it is hiding underneath the bone.

They've suggested thalidomide or Pomalyst for me, but we haven't definitively discussed which yet. I'm hoping, whatever we choose, that I have fewer reactions than I did with the Revlimid.

I do feel like I too have had a lot of scans, and I will add that to the list of concerns to discuss with my doc. I understand what you've said about the not knowing. I am there too, believe me. I am not known for my patience.

Thanks again for responding, and best wishes to you both.

[GaryH]

Re: Relapse 9 months after transplant - now nonsecretory

by GaryH on Sat Sep 26, 2015 11:50 am

I suppose that it doesn't really matter which type of myeloma one has, it's still a raw deal! I have nonsecretory multiple myeloma. We keep track of it via the free light chain tests on a regular basis. That and if I feel some new area that is starting to hurt, I will get an x-ray.

Speaking of which, I question the thought that we (as myeloma patients) can get too much radiation! In the last 17-18 years, I have had numerous (well over a thousand) x-rays, CT scans, and radiation treatments and I still don't glow in the dark! It comes down to either the tumor gets blasted, or it grows and destroys the bone and eventually you. Tough choice.

It is very important to have complete faith in your oncologist! Mine has saved my life so many times that I don't question the treatment prescribed, I just do it. And then I turn the results over to my Higher Power. It is a formula that has worked for me for the last 17 years (coming up to 18!).

I, somewhere along the course of my treatment, got hepatitis C (too many needle pricks?). That has stopped me from getting full-strength treatment of some chemo. I am currently on the new hepatitis C drugs, which are working great, but it is doing a number on my Hg levels and I find myself getting blood transfusions weekly. But, after the hepatitis C is gone (it is a cure!), I will be taking some more aggressive chemo. I am currently on pomalidomide and I think they want to increase the dose.

I have been on numerous clinical trial drugs and have been fortunate that they have worked to prolong my quality of life. But this disease is tricky in that the drugs work for a while, and then the myeloma does an end run around them and we have to start looking at new, different chemo.

I try and wake up every day and say a prayer of thanks that I am still enjoying life. It's worked for me so far and I suspect it will continue as long as I have this attitude of gratitude!

Thanks, Gary

[mikeb]

Re: Relapse 9 months after transplant - now nonsecretory

by mikeb on Mon Sep 28, 2015 4:41 pm

GaryH hit the nail on the head - no matter which form of myeloma you have, it still stinks.

And there are so many variables, it seems almost like each of us has our own individual variant of this disease.

Best wishes to Kim and to LadyAero and your husband. It sounds like you've all been through a lot.

I have a question for my friend, TracyJ, if you are still monitoring this thread. Sorry to be slow with this - I've been traveling for most of the past week.

Tracy, you mentioned that you have nonsecretory myeloma and that all of your BMBs have been normal. Wow! That's very interesting. There's something for me to learn from your case. Your situation does not fit my mental model of how multiple myeloma works. I would have thought that if they can't find any myeloma clones in your bone marrow, then you would have a very low myeloma burden - like someone who is MRD negative. And then in that case, you would not be having any ongoing organ damage or other CRAB symptoms or plasmacytomas.

But clearly that's not how things have worked in your case. So my mental model is messed up. In your case, where is the myeloma? Or is that a question that doesn't even make sense to ask in your case?

Mike

[Tracy J]

Re: Relapse 9 months after transplant - now nonsecretory

by Tracy J on Mon Sep 28, 2015 11:37 pm

MikeB,

Ha, you caught me! It IS strange that ALL my marrow biopsies have had a normal percentage of plasma cells. However, I may have overstated the normalcy of some of my biopsies. The pre-treatment biopsies, both for AL amyloidosis as well as for multiple myeloma, in fact DID show monoclonal plasma cells. Lambda for AL amyloidosis, and kappa for multiple myeloma. After treatment was started, the monoclonal cells were no longer detectable in both cases.

So the myeloma is indeed in my marrow, just not very much of it. My light chains have been normal since diagnosis of multiple myeloma. Does this clarify a little for you?

This doesn't change the fact that my case is very strange.

1. I started with AL amyloidosis
2. I already had an auto transplant prior to developing multiple myeloma
3. My amyloidosis was lambda
4. My multiple myeloma is kappa subtype, so this must be a different clone than the one that caused amyloid
5. I've never had a an abnormal burden of plasma cells in my marrow, despite having a lot of bone findings.

At diagnosis of multiple myeloma, I had fairly high tumor burden - large bone-destroying plasmacytoma in my sacrum, another spot in right pelvis, three skull lesions, C4, T10, L2, right shoulder, left femur, right ribs in numerous places with a pathologic fracture. The sacral biopsy gave the diagnosis. So my bone findings are way out of proportion to my bone marrow biospy, and of course my light chains.

Even my team at Dana Farber (DFCI) cannot really figure out what is going on, exactly. This actually does make a difference to treatment.

Let's talk about the two reasonable possibilities:

1. The multiple myeloma is a whole, brand new cancer. Possibly a "secondary primary malignancy" as a result of being exposed to so many carcinogenic things during my treatment for amyloid. If this is the case, then I should follow the treatment guidelines for new multiple myeloma, and I should be having an auto transplant.
     
2. On the other hand, if multiple myelomais a continuation of previous disease, my diagnosis of multiple myeloma is sort of like a relapse of plasma cell disease. This changes the treatment options and my prognosis. Specifically, repeating an auto transplant is unlikely to help me much more.

After MUCH debate between my husband, myself, and my oncologist at DFCI, we are thinking of my disease as relapsed plasma cell disease. Hence my decision to not repeat an auto transplant. Although I still have 14 million stem cells frozen at Boston Medical Center which I can use if we change our minds in the future.

Here's what I think happened: my plasma cell disease was polyclonal in the beginning, but clinically only AL amyloidosis was detectable. I had an auto transplant. The melphalan killed most of my plasma cells, but there was one clone that was resistant to melphalan. This clone is kappa subtype and capable of destroying bone. It grew without any competition from its neighbors, rising out of the ashes of the auto transplant like an evil phoenix. Then it took over and caused my multiple myeloma. It was my own little experiment in natural selection. But we'll never really know.

[Edna]

Re: Relapse 9 months after transplant - now nonsecretory

by Edna on Tue Sep 29, 2015 4:24 am

Tracy,

What a complex and challenging scenario you are having to face. At least you have worked out some reasonable working theories.

BMB's are a local snapshot in assessing tumour burden. Whole body MRI / PET etc are commonly used, as the picture (in my case certainly) can show up more accurate burden of myeloma plasma cells due to the uneven distribution throughout the skeleton. I assume in your case the BMB alone was not relied upon to assess tumour burden?

Since this thread is about nonsecretory myeloma, tell me if I am wrong but true nonsecretory disease (rare) cannot be followed by blood or urine monitoring of immunoglobulins and or light chains. Then PET / CT scans are needed?

Wishing you well in the journey with this disease.

Edna

[Ian]

Re: Relapse 9 months after transplant - now nonsecretory

by Ian on Tue Sep 29, 2015 5:48 am

I believe you are correct about the definition of "true" nonsecretory disease, Edna. You can't track true nonsecretory multiple myeloma with either serum or urine protein electrophoresis (UPEP or SPEP) tests, nor can you track it with free light chain testing. You have to use imaging or bone marrow biopsies.

In newly diagnosed myeloma patients, this "true" form of nonsecretory disease is only maybe 3-5% of patients. So, yes, it's rare, but not like one-in-a-million-patients rare.

If you can track your disease with light chain levels, for example, but not monoclonal protein (M-protein, M-spike) levels, then you really have light chain multiple myeloma, not nonsecretory multiple myeloma.

I think the confusion on this point is due to the fact that tracking free light chain levels wasn't easily accomplished until the Freelite assay became available a decade or so ago. Before then, it was hard to track the disease in many people with light chain myeloma, just like it is with true nonsecretory patients. So many light chain myeloma patients often ended up being grouped together with true nonsecretory patients, even though most myeloma specialists today wouldn't do that.

I suspect that some older physicians, particularly those who are not myeloma specialists, may still classify people with light chain disease as "nonsecretory", and their confusion on this point gets passed along to their patients.

[Tracy J]

Re: Relapse 9 months after transplant - now nonsecretory

by Tracy J on Tue Sep 29, 2015 9:37 am

There is an intermediate category called "oligosecretory" which means very little M-protein is secreted. They would have some abnormal findings with the free light chain assay, but not in proportion to the extent of disease. I suspect a lot of people who are called nonsecretory actually fall into the oligosecretory category. But this is drilling way down into the nitty gritty details of myeloma, so it's easier to lump these two categories together. This is especially true since measuring response to treatment is similar in both cases. Serum free light chains and M-spike are not really helpful because they don't track with disease well, the way they do with "normal" myeloma. Imaging or BMB is the only way to measure disease.

My disease is true nonsecretory, since I've never had abnormal serum free light chains (during myeloma), and my m-spike was always tiny. Just as a side note, my lambda serum free light chains were through the roof when I had amyloid. In addition, most people with nonsecretory have traditionally abnormal bone marrow biopsies, so disease can be tracked that way. But I don't. I've never had an abnormal percentage of plasma cells in my bone marrow, ever. I guess I should count myself lucky that I it's not necessary to have a bone marrow biopsy every time we want to measure my response to treatment!

Imaging as a way of following disease is problematic in several ways:

1. A LOT of radiation. Imagine if you had to get a PET CT instead of labs every time you wanted to check on things. You'd check on things less often, and you'd still get a s**tload of radiation.
2. It's less precise than labs, and more subject to interpretation.
3. It's not really comparable to the general population of myeloma, since you are comparing apples with asparagus.
4. It eliminates us from the vast majority of clinical trials.

Think about this: IF we are supposing that my plasma cell disease was polyclonal to begin with, AND it included both lambda and kappa cells, then the progenitor cell (the one BEFORE plasma cells split into lambda and kappa) must be faulty. It makes me wonder how far up the family tree the faulty cell lies. I'm just guessing here, but I think that makes more sense than to assume that I independently, separately developed lambda AND kappa plasma cell disease. That's just another reason for me to NOT have another auto stem cell transplant - maybe the faulty cells are in that bag of frozen stem cells in storage in Boston.

When I summarize all the ways in which I'm weird, it's impressed upon me again that my case is at the boundary of medicine's understanding of plasma cell behavior and misbehavior. I'm waiting for some research scientist to seize on my case and try to understand plasma cell function better through my weirdness.

[Tracy J]

Re: Relapse 9 months after transplant - now nonsecretory

by Tracy J on Tue Sep 29, 2015 9:45 am

Here's a nice article about oligosecretory myeloma.

"Oligosecretory Myeloma Can Often Be Detected With Free Light Chain Assay," The Myeloma Beacon, Aug 24, 2012