Hello Bill7.
I completely concur with your decision since I made the same choice a little over 2 years ago. And one can always opt for the transplant later. I didn't even have my stem cells harvested. I wasn't for it and my HMO didn't even allow the stem cell harvest.
I am about your age now and I, too, responded to the Revlimid, Velcade, and dexamethasone (RVD) Induction almost as well. I needed extra 2 cycles due to a nasty flu-like infection after the 4th cycle. I started the RVD on December 17, 2014 and my last Velcade was July 7, 2015. I have been on Revlimid-only maintenance since October 26, 2015.
I was diagnosed with the 'standard risk' (normal cytogenetics) nonsecretory IgG kappa multiple myeloma. As of the most recent tests of early this week, my kappa is higher than normal, but stable around 45 mg/L (normal range 3.3 - 19.4 mg/L) for 11 cycles, and my kappa-lambda ratio of 1.44 is quite normal (normal range 0.26 - 1.65). I had achieved "normal" levels of these parameters and stayed there for a few cycles till my oncologist decided to remove the dex from my maintenance therapy. Therefore, I already have had over 2 years and 3 months of 'stable' maintenance.
The mSmart guidelines from the Mayo Clinic also suggest that the transplant, after Induction, is 'optional' for my case. I assume you are in the same category. Everyone, with or without transplant, seems to end up on Revlimid or Velcade maintenance; some transplant patients do get quite a few drug-free years before relapse and maintenance.
My myeloma was diagnosed after a routine test showed high protein in my urine test in October 2014. My skeletal x-rays showed multiple lytic lesions on the skull, pelvic bones, and arms, but none on the spine, thighs, or legs. The 'monoclonal' plasma level was 30%. My main marker is the kappa free light chain and the high kappa-lambda ratio. My kappa reading was 1,070 mg/L at the start of the Induction, and that number dropped to 127, 48, and 25 till I got the flu. It all dropped to normal and stayed there for 4 cycles with the dex supplementing the Revlimid. The early treatment has kept everything in check as confirmed by my annual skeletal x-rays this week. I have been cleared to play golf from the beginning. However, I think I tore up my arm muscle with a severe pain and a lot of internal bleeding recently, but fortunately there is no fracture of the arm bone.
I have been on a 15 mg alternate day Revlimid maintenance and its main side effect has been a severe diarrhea that seems to get worse. I often take half the adult dose of Benadryl (diphenhydramine) to fall asleep.
I have been able to play a round of golf (riding the cart only) about once a week. I also manage to make a 270 mile round trip (2+ hours each way) every week or every other week and have also managed 2 x 4-hour non-stop drives. The 4-hour non stop trips were very tiring, particularly feeling the fatigue the next day and muscle cramps, too. The rubbing a soap bar (soap therapy) on the cramped muscle helps me a lot and almost immediately.
The Beacon has been a very valuable source of information and there are a number of posts about the Velcade rash, insomnia, diarrhea, muscle cramps, biking with myeloma, etc. I finally figured out a way to use the "advanced search" to find some of the reference articles. The advice from the myeloma experts, the Beacon's and the other patient's research,. and the first-hand myeloma patient's experience has been extremely helpful to me.
I hope you have a great time at the reunion. Please post what dosing of dex and Revlimid your oncologist recommends for your maintenance.
Forums
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Bill, 71 years old, diagnosed two months ago
Hi K_Shash,
Glad to see that you are doing well (relatively speaking, of course!).
I wanted to clear something up that you said that might be confusing to others here in the forum who are new to multiple myeloma. In particular, you described your multiple myeloma as "nonsecretory". That's incorrect. What you have is light chain multiple myeloma, which means that at diagnosis you didn't have an M-spike, but you did have elevated kappa or lambda free light chain levels (leading to a kappa-lambda ratio that was outside the normal range).
Someone with true nonsecretory multiple myeloma has neither an M-spike nor an out-of-range free light chain ratio. It's a rare form of myeloma at diagnosis, accounting for perhaps 2 or 3 percent of cases. Light chain multiple myeloma occurs in about 15 to 20 percent of newly diagnosed myeloma patients.
Take care, and thanks for all your updates here in the forum.
Glad to see that you are doing well (relatively speaking, of course!).
I wanted to clear something up that you said that might be confusing to others here in the forum who are new to multiple myeloma. In particular, you described your multiple myeloma as "nonsecretory". That's incorrect. What you have is light chain multiple myeloma, which means that at diagnosis you didn't have an M-spike, but you did have elevated kappa or lambda free light chain levels (leading to a kappa-lambda ratio that was outside the normal range).
Someone with true nonsecretory multiple myeloma has neither an M-spike nor an out-of-range free light chain ratio. It's a rare form of myeloma at diagnosis, accounting for perhaps 2 or 3 percent of cases. Light chain multiple myeloma occurs in about 15 to 20 percent of newly diagnosed myeloma patients.
Take care, and thanks for all your updates here in the forum.
Re: Bill, 71 years old, diagnosed two months ago
Marilyn,
If your husband has a bone lesion, especially one that is impacting his ability to stand long enough to shower and dress, I think this may not smoldering multiple myeloma. I am not a doctor, but the bone lesion could be a myeloma defining event. I don't know where you live, but if you indicate where that is, there are probably people on the forum who can direct you to a cancer center in your area that has myeloma specialists. There is no harm in getting a second opinion. Your husband (and you) should not have to suffer. There are some excellent treatments available to address his symptoms and the progress of his disease.
If your husband has a bone lesion, especially one that is impacting his ability to stand long enough to shower and dress, I think this may not smoldering multiple myeloma. I am not a doctor, but the bone lesion could be a myeloma defining event. I don't know where you live, but if you indicate where that is, there are probably people on the forum who can direct you to a cancer center in your area that has myeloma specialists. There is no harm in getting a second opinion. Your husband (and you) should not have to suffer. There are some excellent treatments available to address his symptoms and the progress of his disease.
Re: Bill, 71 years old, diagnosed two months ago
Hello TerryH,
I am not so sure about the exact classification or sub-classification of "kappa light chain only myeloma" vs. the nonsecretory myeloma. The following article seems to indicate that the light chain only myeloma, without any M-spike, is a type of nonsecretory myeloma. Once again, I am not quite sure if that is the case, but the I think the light chain-only myeloma without an M-spike would be likely classified as Non-Secretory.
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
We do have other myeloma patients with kappa light chain-only myeloma WITH an M-spike, MMFeb16,15, for example. Wouldn't that be classified as secretory kappa light chain-only myeloma?
According to the referenced article, the treatment is really no different in wither case. I will certainly refer to mine as nonsecretory, kappa light chain-only multiple myeloma.
I am not so sure about the exact classification or sub-classification of "kappa light chain only myeloma" vs. the nonsecretory myeloma. The following article seems to indicate that the light chain only myeloma, without any M-spike, is a type of nonsecretory myeloma. Once again, I am not quite sure if that is the case, but the I think the light chain-only myeloma without an M-spike would be likely classified as Non-Secretory.
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/
We do have other myeloma patients with kappa light chain-only myeloma WITH an M-spike, MMFeb16,15, for example. Wouldn't that be classified as secretory kappa light chain-only myeloma?
According to the referenced article, the treatment is really no different in wither case. I will certainly refer to mine as nonsecretory, kappa light chain-only multiple myeloma.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Bill, 71 years old, diagnosed two months ago
Hi K_Shash,
What I seem to have found in reading various articles over the years is that different professionals have different definitions of nonsecretory myeloma. This has always tended to confuse me over the years. This article bears out this confusing lack of clarity on the definition of nonsecretory myeloma:
Caldas, AR, et al, "Non-Secretory Myeloma or Light Chain-Producing Multiple Myeloma: A Case Report," Journal of Medical Cases, June 2011 (full text of article)
Excerpt:
"While some authors consider NSMM [nonsecretory multiple myeloma] as an entity that secretes neither entire immunoglobulins nor immunoglobulin light chains, others assume that all the ones that do not have the M-protein in electrophoresis can be classified as NSMM, in spite of having small elevations of monoclonal free light chains in serum and/or urine . In the first case, plasmocytes fail to produce or secrete an immunoglobulin, so there is no any kind of monoclonal spike. In the second case there is lack of a detectable M-protein because the cell does not produce the entire immunoglobulin, but a monoclonal free light chain peak can be detected in serum or urine, using techniques other then agarose gel electrophoresis, like immunoelectrophoresis or immunofixation."
What I seem to have found in reading various articles over the years is that different professionals have different definitions of nonsecretory myeloma. This has always tended to confuse me over the years. This article bears out this confusing lack of clarity on the definition of nonsecretory myeloma:
Caldas, AR, et al, "Non-Secretory Myeloma or Light Chain-Producing Multiple Myeloma: A Case Report," Journal of Medical Cases, June 2011 (full text of article)
Excerpt:
"While some authors consider NSMM [nonsecretory multiple myeloma] as an entity that secretes neither entire immunoglobulins nor immunoglobulin light chains, others assume that all the ones that do not have the M-protein in electrophoresis can be classified as NSMM, in spite of having small elevations of monoclonal free light chains in serum and/or urine . In the first case, plasmocytes fail to produce or secrete an immunoglobulin, so there is no any kind of monoclonal spike. In the second case there is lack of a detectable M-protein because the cell does not produce the entire immunoglobulin, but a monoclonal free light chain peak can be detected in serum or urine, using techniques other then agarose gel electrophoresis, like immunoelectrophoresis or immunofixation."
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bill, 71 years old, diagnosed two months ago
Hi everyone,
I gotta agree with Terry on this. These days, at least among myeloma specialists, I think the term "nonsecretory" is reserved for patients who have no evidence of a monoclonal protein, meaning no M-spike, no evidence of a monoclonal protein in serum and urine immunofixation results, and no elevations in serum free light chain levels. It's meant to refer to disease that has to be tracked via bone marrow biopsies and/or imaging, rather than readily available blood tests.
I don't know the exact history of the free light chain assay, but I believe it didn't start coming into regular use until about 10-15 years ago. So the timing of a journal article or news article matters when researching how nonsecretory myeloma is defined. Publications from even three or four years ago can reasonably be considered dated when it comes to this topic.
So, for example, this article from late last year is helpful:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5171196/
It says:
"the advent of the serum free light chain assay has resulted in the majority of NSMM patients being recategorized as light-chain multiple myeloma – that is, multiple myeloma cells that produce only the light-chain component of Ig. True forms of NSMM [are] multiple myeloma that secretes no monoclonal proteins whatsoever"
This more narrow definition of nonsecretory myeloma is reflected in the fact that we now see explicit definitions of "light chain MGUS" and even "light chain smoldering multiple myeloma" in addition to "light chain multiple myeloma". The narrow definition is also reflected in treatment response criteria, for example,
https://www.cibmtr.org/manuals/fim/1/en/topic/multiple-myeloma-response-criteria
where there are separate response definitions for patients with light chain and nonsecretory multiple myeloma, and free light chain levels play no role -- not even a role in certain cases -- in defining response in patients with nonsecretory myeloma.
I gotta agree with Terry on this. These days, at least among myeloma specialists, I think the term "nonsecretory" is reserved for patients who have no evidence of a monoclonal protein, meaning no M-spike, no evidence of a monoclonal protein in serum and urine immunofixation results, and no elevations in serum free light chain levels. It's meant to refer to disease that has to be tracked via bone marrow biopsies and/or imaging, rather than readily available blood tests.
I don't know the exact history of the free light chain assay, but I believe it didn't start coming into regular use until about 10-15 years ago. So the timing of a journal article or news article matters when researching how nonsecretory myeloma is defined. Publications from even three or four years ago can reasonably be considered dated when it comes to this topic.
So, for example, this article from late last year is helpful:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5171196/
It says:
"the advent of the serum free light chain assay has resulted in the majority of NSMM patients being recategorized as light-chain multiple myeloma – that is, multiple myeloma cells that produce only the light-chain component of Ig. True forms of NSMM [are] multiple myeloma that secretes no monoclonal proteins whatsoever"
This more narrow definition of nonsecretory myeloma is reflected in the fact that we now see explicit definitions of "light chain MGUS" and even "light chain smoldering multiple myeloma" in addition to "light chain multiple myeloma". The narrow definition is also reflected in treatment response criteria, for example,
https://www.cibmtr.org/manuals/fim/1/en/topic/multiple-myeloma-response-criteria
where there are separate response definitions for patients with light chain and nonsecretory multiple myeloma, and free light chain levels play no role -- not even a role in certain cases -- in defining response in patients with nonsecretory myeloma.
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Jonah
Re: Bill, 71 years old, diagnosed two months ago
I have not posted in some time. In October 2017, my wife’s health began to deteriorate much more rapidly, this was both mental and physical. She went through hospitalization and skilled nursing facilities. Finally in December she was diagnosed with Parkinson’s and was discharged to skilled nursing. She developed a urinary tract infection, which was not diagnosed or treated for some time, and she became septic. She passed away on March 15 from Parkinson’s and sepsis. It was not a good death.
In the meantime, I have developed osteonecrosis of the jaw (ONJ), which has also progressed. I am, however, still in maintenance for the myeloma. I am going for a consult about the ONJ this Thursday, and have another visit with my oncologist this coming Monday. I am still hopeful and maintaining a good attitude (so everyone says), but it has been a tough 10 months since my last post here. God willing I hope to begin taking part in discussions here again. I am still working - no retirement for me. Keeping busy keeps my mind off of these past months.
Peace and all good to all of you.
Bill
In the meantime, I have developed osteonecrosis of the jaw (ONJ), which has also progressed. I am, however, still in maintenance for the myeloma. I am going for a consult about the ONJ this Thursday, and have another visit with my oncologist this coming Monday. I am still hopeful and maintaining a good attitude (so everyone says), but it has been a tough 10 months since my last post here. God willing I hope to begin taking part in discussions here again. I am still working - no retirement for me. Keeping busy keeps my mind off of these past months.
Peace and all good to all of you.
Bill
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Bill7 - Name: BillB
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 71
Re: Bill, 71 years old, diagnosed two months ago
Bill,
Your update is quite sobering. It is a stark reminder of how brutal illness and disease often is.
You and your wife have been through such suffering that there is little, if anything, one can say in the way of condolences. I applaud your courage in relating this update to us.
Participants in this forum tend to put a positive, optimistic slant on their experiences, but we do need to face the ugly end-game as well.
You have been the helpmate to your wife, and now you must go forward without her reciprocal aid and comfort.
I want to say more in sympathy, but words fail in this case.
God Bless.
Your update is quite sobering. It is a stark reminder of how brutal illness and disease often is.
You and your wife have been through such suffering that there is little, if anything, one can say in the way of condolences. I applaud your courage in relating this update to us.
Participants in this forum tend to put a positive, optimistic slant on their experiences, but we do need to face the ugly end-game as well.
You have been the helpmate to your wife, and now you must go forward without her reciprocal aid and comfort.
I want to say more in sympathy, but words fail in this case.
God Bless.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
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