Hi All
I am smoldering right now but thought I should put this post in the multiple myeloma category.
I am trying to get myself and my home environment ready for when/if I ever need treatment, a stem cell transplant (SCT), etc. I am IgA kappa and my K/L ratio is approx 49, but has been stable since I was diagnosed back in January 2015. But I figure I will likely progress eventually.
I am trying to clean out all the old junk, sports equipment, and items no longer used, etc from our home, and am planning to get rid of the carpet and install hardwood floors to make it easier to clean and vacuum.
I am sure lots of folks here have already gone thru this process, so I am wondering if there is a list of things to do that has already been developed to prepare for this eventuality. I am sure there is a lot I have not thought of.
Any ideas appreciated, thx.
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6 posts
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Re: How to prepare for multiple myeloma treatment?
Hello, MD:
I don't know your entire medical profile, but just based on your kappa-lambda ratio, it does look somewhat high, so I understand your concern, and I understand that you are a "planner".
My suggestion to you is to research and find if there is a smoldering multiple clinical trial that you might be comfortable with, that would delay the onset of symptomatic multiple myeloma. I did a quick google and found one: NCT01718899. I am not specifically endorsing this one, because I did not research it in detail, but, I do find it interesting in that it is immunotherapy, which is "cutting edge". Generally, immunotherapy in most cases causes rashes, and maybe fever (like a flu vaccine), but does not have many of the other side effects associated with more established drugs. The locations for this particular study are: Dana Farber, MGH and Beth Israel (all in Boston), Emory (Atlanta) and MD Anderson (Houston). This type of approach has the potential to delay the onset of active multiple myeloma.
There are also clinical trials treating smoldering multiple myeloma in some cases with regular drugs (Revlimid, dex, and Velcade), but these do have side effects associated with them.
My only other thoughts for you is to be sure you have a myeloma specialist in your corner, and to stay active and enjoy your life. In some cases, smoldering myeloma patients move up quickly to active multiple myeloma, but in other cases it takes a good many years. Although many people do very well after needing treatment, the initial 3 to 6 months of induction treatment (whatever that happens to be) is somewhat of a grind.
Good luck
I don't know your entire medical profile, but just based on your kappa-lambda ratio, it does look somewhat high, so I understand your concern, and I understand that you are a "planner".
My suggestion to you is to research and find if there is a smoldering multiple clinical trial that you might be comfortable with, that would delay the onset of symptomatic multiple myeloma. I did a quick google and found one: NCT01718899. I am not specifically endorsing this one, because I did not research it in detail, but, I do find it interesting in that it is immunotherapy, which is "cutting edge". Generally, immunotherapy in most cases causes rashes, and maybe fever (like a flu vaccine), but does not have many of the other side effects associated with more established drugs. The locations for this particular study are: Dana Farber, MGH and Beth Israel (all in Boston), Emory (Atlanta) and MD Anderson (Houston). This type of approach has the potential to delay the onset of active multiple myeloma.
There are also clinical trials treating smoldering multiple myeloma in some cases with regular drugs (Revlimid, dex, and Velcade), but these do have side effects associated with them.
My only other thoughts for you is to be sure you have a myeloma specialist in your corner, and to stay active and enjoy your life. In some cases, smoldering myeloma patients move up quickly to active multiple myeloma, but in other cases it takes a good many years. Although many people do very well after needing treatment, the initial 3 to 6 months of induction treatment (whatever that happens to be) is somewhat of a grind.
Good luck
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JPC - Name: JPC
Re: How to prepare for multiple myeloma treatment?
Remember, only a small percentage advance from smoldering to full blown. But, start eating better, organic – (real organic), not labeled natural ... no GMOs. Start exercising, lose any weight you have been putting off on getting rid of, and get lots of sleep and have as much fun as you can.
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Joneman
Re: How to prepare for multiple myeloma treatment?
Joneman wrote:
Unfortunately, this just isn't true. Under the old definition of smoldering myeloma, the one before the new diagnostic criteria for myeloma were published last year, the probability of progressing from smoldering myeloma to symptomatic myeloma sometime within 20 years was estimated to be about 80 percent. That percentage is lower now with the new criteria. But it's still probably something like 65 to 75 percent (sorry, I don't feel like doing the math right now).
Smoldering myeloma is not the same as MGUS. With MGUS, your chances of progressing to multiple myeloma really are very low – something like 1 percent per year. But, again, smoldering myeloma and MGUS are not the same thing.
mdszj - It sounds like you're watching your lab results carefully, and that's one of the most important things you can do right now. Your K/L ratio is high, but if it's stable, then it's possible you could stay asymptomatic for a long time. Also, if your labs are stable, I'd think long and hard whether it makes sense to enter a trial for early treatment of smoldering myeloma. Despite what I just said, there are smoldering myeloma patients who stay stable for very long periods of time, or just don't progress at all. How stable your labs are is almost certainly a key sign of whether you fall into that category of smolderers.
It's different, of course, if your labs are changing and showing signs that the disease is progressing. Then I'd definitely at least think about doing a trial testing early treatment of smoldering myeloma. I don't know whether I'd do it, but I think it's worth considering.
Remember, only a small percentage advance from smoldering to full blown.
Unfortunately, this just isn't true. Under the old definition of smoldering myeloma, the one before the new diagnostic criteria for myeloma were published last year, the probability of progressing from smoldering myeloma to symptomatic myeloma sometime within 20 years was estimated to be about 80 percent. That percentage is lower now with the new criteria. But it's still probably something like 65 to 75 percent (sorry, I don't feel like doing the math right now).
Smoldering myeloma is not the same as MGUS. With MGUS, your chances of progressing to multiple myeloma really are very low – something like 1 percent per year. But, again, smoldering myeloma and MGUS are not the same thing.
mdszj - It sounds like you're watching your lab results carefully, and that's one of the most important things you can do right now. Your K/L ratio is high, but if it's stable, then it's possible you could stay asymptomatic for a long time. Also, if your labs are stable, I'd think long and hard whether it makes sense to enter a trial for early treatment of smoldering myeloma. Despite what I just said, there are smoldering myeloma patients who stay stable for very long periods of time, or just don't progress at all. How stable your labs are is almost certainly a key sign of whether you fall into that category of smolderers.
It's different, of course, if your labs are changing and showing signs that the disease is progressing. Then I'd definitely at least think about doing a trial testing early treatment of smoldering myeloma. I don't know whether I'd do it, but I think it's worth considering.
Re: How to prepare for multiple myeloma treatment?
I went from smoldering after diagnosis for almost two years [July 2011 to February 2013]. When a March 2013 blood draw showed my chemistry numbers taking a steep spike I was able to enter a clinical trial for carfilzomib (Kyprolis). I went for this chemo-combo [with dexamethesone and thalidomide] for 5 months - 2 days in a row for each 3 week course.
For the months prior to my spike, I kept busy [I'm a writer, so I wrote]. I visited with friends and family, ate fresh fruits, vegetables and fish [no pork, no chicken, no beef], drank a little wine regularly, and walked twice a day each day. If the weather was good outside, I walked outside; if not I walked on my treadmill.
When signs of the multiple myeloma returned in my blood work [February 2014], I took Revlimid until June 2015, but my doctor took me off Revlimid because it was not working for me. Since then, I have not been on any multiple myeloma-related medication. The clinical trial chemo program basically turned back my multiple myeloma clock, and presently I feel fine even though my [chemistry] numbers are heading slowly in the wrong direction.
Mentally preparing for each day and what maybe ahead is BIG. I savor each day, help my body help itself with moderate but regular exercise, eat light, and keep busy.
For the months prior to my spike, I kept busy [I'm a writer, so I wrote]. I visited with friends and family, ate fresh fruits, vegetables and fish [no pork, no chicken, no beef], drank a little wine regularly, and walked twice a day each day. If the weather was good outside, I walked outside; if not I walked on my treadmill.
When signs of the multiple myeloma returned in my blood work [February 2014], I took Revlimid until June 2015, but my doctor took me off Revlimid because it was not working for me. Since then, I have not been on any multiple myeloma-related medication. The clinical trial chemo program basically turned back my multiple myeloma clock, and presently I feel fine even though my [chemistry] numbers are heading slowly in the wrong direction.
Mentally preparing for each day and what maybe ahead is BIG. I savor each day, help my body help itself with moderate but regular exercise, eat light, and keep busy.
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Sherrie Todd-Beshore
Re: How to prepare for multiple myeloma treatment?
Thx to all who replied, some good ideas were presented which I will incorporate. Hopefully my K/L ratio and various immunoglobulins will remain stable for as long as possible.
6 posts
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