Well after almost 10 years with MGUS, my community oncologist elevated me to smoldering myeloma status this fall. Although my wife (Sara) and I have done some basic research during the last ten years, we're only now diving deep into learning more. We were hoping that I would be among those that remain in a MGUS state for a longer period. My change in status lead me to the Beacon and I’m grateful to be in such fine company. Still lot’s to learn from you folks.
My onc referred me to Dr. Bensinger, formerly with the Fred Hutchinson Cancer Research Center, now with Swedish Cancer Institute in Seattle. I was interested in learning more about auto transplant and treatment options. Based on my current risk factors, he thought I am about 2 years away from treatment and transplant.
The weight and reality of my current state is emotionally challenging us; but we’re prepared to buckle up and do the next indicated thing. With the new drugs that have been approved, it does seem like there are treatment options.
We need a reality check in terms of a retirement goal, which for me is nine months away (@ age 65), and for Sara about two years out. We’re selling our home this winter and our intention has been to buy a motor home and travel the US and Canada as full-time RVers for as long as our health and interest permit.
I recognize that we will need to intermittently “land” somewhere for treatment and tests, but is it unrealistic to pursue this dream? I'm unclear about how, and at what rate the disease typically progresses, recognizing of course that ‘typical’ doesn’t necessarily exist. At what point does anemia, pain or other symptoms start affecting quality of life? My instinct is to continue living life as planned, with the addition of watchful waiting. We'd appreciate hearing from folks how our lives may unfold over the next 5 to 10 years.
I’m still learning the language surrounding the disease and risk factors. If more info is needed, let me know. Current labs and test results:
M-protein: 2.57
PET/CT scan: No suspicious focal lesions.
Urine is negative for monoclonal Free Light Chains
Urine is negative for monoclonal Free Light Chains (Bence Jones Protein). Urine IFE shows a faint band in IgG kappa.
Calcium: 9.2 mg/dL
Normal renal function
KAPPA/LAMBDA Free Light Chain Ratio: 30.83
KAPPA FLC 3.70 mg/dL
LAMBDA Free Light Chains 0.12
Bone marrow biopsy: multiple myeloma panel showed involvement of bone marrow by abnormal hyperdiploid clonal cells characterized by trisomy of chromosomes 9, 11, 14 and 15 in 10-22% of cells.
Most other blood work falls within standard ranges.
Dr. Bensinger is recommending that immunoglobulins in my next blood panel.
Thanks, Marc
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NWLanding - Name: Marc
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2006 SMM: 2015
- Age at diagnosis: 54
Re: Introduction & Request for Reality Check
Hello Marc:
Your situation to the point you are in is similar to the situation of my wife. We were observing MGUS for about 10 years. You do not do a huge amount of research for the most part, at the MGUS stage. Or at least most people, I think do not. You get some understanding, but do not do a deep dive, as MGUS for most people progresses very slowly.
At the smoldering multiple myeloma (SMM) stage, you need to understand that you need to crank up your research game. Some people dwell in SMM for 20 years; however, some people dwell in the SMM only about 12 to 18 months. You do not know ahead of time if you are in the slow moving or fast moving category, and you need to prepare if you are in the fast moving category (though I hope you are in the slow category).
In the case of my wife, for example, it was only one year in SMM, and we needed to deal with induction and ASCT starting in September of 2014. After the fact, we learned that there was a fast moving SMM sub-group. We made an assumption based on published data that it probably would be another 10 years, but that was not a really good assumption, as it turned out. We could have done a lot more research in the SMM stage.
First, you should start getting your numbers tracked probably every 3 months, at least. Again, it could be 10+ plus years until progression, but getting your numbers tracked more frequently makes a lot of sense. You want to start treatment before some of the bad symptoms sink in (bone or organ damage, for instance). If you stay ahead of the bad symptoms, that is a big positive. In retrospect, in our case, we did not have any BBAADD symptoms, but it would have been better to start treating about 6 months earlier, as the M-Spike flew up.
Secondly, as you mentioned that you are doing your retirement planning, do that well, make sure that you are covered well. This is a complicated issue in and of itself. You do not want to be limited in treatment options by mediocre insurance.
Third, learn about cytogenetics, and high/risk vs low or standard risk. Outcomes for standard risk are very positive right now, but there is still some challenge for the high risk group. Learn your status and options in that regard, now, to the extent that you can. This will mean getting a bone marrow biopsy, and a FISH test (or equivalent test).
Good luck to you and I hope the variables fall right for you.
Your situation to the point you are in is similar to the situation of my wife. We were observing MGUS for about 10 years. You do not do a huge amount of research for the most part, at the MGUS stage. Or at least most people, I think do not. You get some understanding, but do not do a deep dive, as MGUS for most people progresses very slowly.
At the smoldering multiple myeloma (SMM) stage, you need to understand that you need to crank up your research game. Some people dwell in SMM for 20 years; however, some people dwell in the SMM only about 12 to 18 months. You do not know ahead of time if you are in the slow moving or fast moving category, and you need to prepare if you are in the fast moving category (though I hope you are in the slow category).
In the case of my wife, for example, it was only one year in SMM, and we needed to deal with induction and ASCT starting in September of 2014. After the fact, we learned that there was a fast moving SMM sub-group. We made an assumption based on published data that it probably would be another 10 years, but that was not a really good assumption, as it turned out. We could have done a lot more research in the SMM stage.
First, you should start getting your numbers tracked probably every 3 months, at least. Again, it could be 10+ plus years until progression, but getting your numbers tracked more frequently makes a lot of sense. You want to start treatment before some of the bad symptoms sink in (bone or organ damage, for instance). If you stay ahead of the bad symptoms, that is a big positive. In retrospect, in our case, we did not have any BBAADD symptoms, but it would have been better to start treating about 6 months earlier, as the M-Spike flew up.
Secondly, as you mentioned that you are doing your retirement planning, do that well, make sure that you are covered well. This is a complicated issue in and of itself. You do not want to be limited in treatment options by mediocre insurance.
Third, learn about cytogenetics, and high/risk vs low or standard risk. Outcomes for standard risk are very positive right now, but there is still some challenge for the high risk group. Learn your status and options in that regard, now, to the extent that you can. This will mean getting a bone marrow biopsy, and a FISH test (or equivalent test).
Good luck to you and I hope the variables fall right for you.
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JPC - Name: JPC
Re: Introduction & Request for Reality Check
Hi Marc,
Sorry to hear about your circumstances, but welcome to this forum and the community.
I hope to do a first RV foray with my wife during 2016, so your post caught my attention.
JPC has given you some very good answers and some excellent advice. I have just a few things to add, based on my experience, to give you another data point.
I was diagnosed with MGUS in 2009. A little over a year later, it progressed to the smoldering myeloma stage. In January 2013 a PET scan showed lytic lesions in a few spots, plus I was borderline anemic. So I began treatment then. I've been very fortunate through induction, SCT, consolidation, and maintenance treatments; I'm doing well. I'm on Revlimid maintenance at this point.
What seems "special" about your case is that you and your wife want to be full-time RVers, and you're wondering how smoldering multiple myeloma and/or multiple myeloma further down the road (pun intended
) will affect those plans. I don't have a definite answer for you since I don't have a crystal ball. But I do have a few thoughts.
I think as long as you remain smoldering, you can probably be monitored periodically from practically anyway and have those blood and urine test results sent to Dr. Bensinger. One slight issue is that doctors often like to have blood work done through their own labs so that they can be more confident about the consistency of the results. But it seems like that's for the ideal situation, and you might be able to get away with going to a Quest Diagnostics or Lab Corp facility near wherever you happen to be.
If / when you do need treatment, you're probably going to want to stay in one location for awhile. That might be Seattle, but it might be somewhere else, with your doctor there coordinating treatment with Dr. Bensinger. The main reason why I think you'll want to stay in one place for your treatment is that it might well involve IV infusion or subcutaneous injections, not just pills you can take orally. And, of course, if you receive a stem cell transplant as part of your treatment, you definitely will need to be stationary for awhile.
If / when you move into the maintenance treatment phase, that could mean using an oral agent like Revlimid. If that's the case, I could imagine doing that from the road after the first few months of monitoring.
All of this depends a lot on what Dr. Bensinger (or whoever you work with as your myeloma specialist) is comfortable with. I think your desire to RV is a good thing to talk about with Dr. Bensinger sooner rather than later because that might influence some of his strategy with you.
One final thing to mention - in the past year or so, new guidelines have been published about when to begin treating multiple myeloma as someone moves from smoldering to active myeloma. I'm sure Dr. Bensinger is familiar with these guidelines, but it'll be helpful for you to know about them too.
Best wishes to you and your wife on your journeys, both RV and myeloma. Please keep us posted from the road.
Mike
Sorry to hear about your circumstances, but welcome to this forum and the community.
I hope to do a first RV foray with my wife during 2016, so your post caught my attention.
JPC has given you some very good answers and some excellent advice. I have just a few things to add, based on my experience, to give you another data point.
I was diagnosed with MGUS in 2009. A little over a year later, it progressed to the smoldering myeloma stage. In January 2013 a PET scan showed lytic lesions in a few spots, plus I was borderline anemic. So I began treatment then. I've been very fortunate through induction, SCT, consolidation, and maintenance treatments; I'm doing well. I'm on Revlimid maintenance at this point.
What seems "special" about your case is that you and your wife want to be full-time RVers, and you're wondering how smoldering multiple myeloma and/or multiple myeloma further down the road (pun intended
) will affect those plans. I don't have a definite answer for you since I don't have a crystal ball. But I do have a few thoughts.I think as long as you remain smoldering, you can probably be monitored periodically from practically anyway and have those blood and urine test results sent to Dr. Bensinger. One slight issue is that doctors often like to have blood work done through their own labs so that they can be more confident about the consistency of the results. But it seems like that's for the ideal situation, and you might be able to get away with going to a Quest Diagnostics or Lab Corp facility near wherever you happen to be.
If / when you do need treatment, you're probably going to want to stay in one location for awhile. That might be Seattle, but it might be somewhere else, with your doctor there coordinating treatment with Dr. Bensinger. The main reason why I think you'll want to stay in one place for your treatment is that it might well involve IV infusion or subcutaneous injections, not just pills you can take orally. And, of course, if you receive a stem cell transplant as part of your treatment, you definitely will need to be stationary for awhile.
If / when you move into the maintenance treatment phase, that could mean using an oral agent like Revlimid. If that's the case, I could imagine doing that from the road after the first few months of monitoring.
All of this depends a lot on what Dr. Bensinger (or whoever you work with as your myeloma specialist) is comfortable with. I think your desire to RV is a good thing to talk about with Dr. Bensinger sooner rather than later because that might influence some of his strategy with you.
One final thing to mention - in the past year or so, new guidelines have been published about when to begin treating multiple myeloma as someone moves from smoldering to active myeloma. I'm sure Dr. Bensinger is familiar with these guidelines, but it'll be helpful for you to know about them too.
Best wishes to you and your wife on your journeys, both RV and myeloma. Please keep us posted from the road.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
3 posts
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