I was diagnosed smoldering myeloma last April. I see Dr Jason Valent at the Cleveland Clinic every three months. At my last visit, I was told I am high risk for progression. I am IgA kappa - light chain - M-spike. Both of my other immuglobunis are decreased.
My last labs: Normal calcium, low normal RBC, kappa free serum 229, K/L ratio 39, IgA 1500, beta globulin 1.83.
About a week before my labs and doctor visit, I get so emotional, weepy, and I guess fearful. I have stopped making any long-range plans. I feel guilty when I read the posts from all of you with active myeloma. I have faith and a great support ... I just cannot seem to turn off my mind...it seems I am just inching along toward the inevitable.
Any advice?
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MQuarter - Name: MaryQ
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/2015
- Age at diagnosis: 58
Re: Controlling the three-month crazies
MaryQ,
I can totally relate as I remember feeling this way the first year after being diagnosed with smoldering multiple myeloma. I then started to realize that a lot of my anxiety was centered on the possibility that the doc may deliver some unwelcome news based on my latest test results (a situation similar to when I first got diagnosed with smoldering myeloma, when I was like Bambi caught in a car's headlights and I completely forgot to ask a lot of important questions because my head was spinning).
I then started getting my labs done about 10 days prior to my regularly scheduled appointments and arranged to get access to those lab results prior to my regular doctor's visit so I would have a few days to digest the lab results, write down any questions, and be able to go into the doctor appointment knowing that I wasn't going to be handed some sort of unwelcome, surprise bombshell that I was unprepared for. After all, if you start graphing your lab results, any really worrisome changes will pretty much jump out at you.
I think it's also really helpful to know just what your game plan will likely be should you progress to symptomatic multiple myeloma. Coming to terms on which specialist I would use, knowing where I stand on the early vs. late transplant and transplant vs. drug-only decisions, having an idea of which drugs I may use in a front line setting and which questions I would ask at that time, was also quite liberating for me.
Doing all this has taken a lot of the stress out of my regular appointments and I can't imagine doing it any other way. I now actually sort of look forward to my regular visits and helpful chats with my onc. Do I still worry a bit 2-3 days before my lab draws and while I wait for the lab results? Sure, but that worry has lessened over time.
I can totally relate as I remember feeling this way the first year after being diagnosed with smoldering multiple myeloma. I then started to realize that a lot of my anxiety was centered on the possibility that the doc may deliver some unwelcome news based on my latest test results (a situation similar to when I first got diagnosed with smoldering myeloma, when I was like Bambi caught in a car's headlights and I completely forgot to ask a lot of important questions because my head was spinning).
I then started getting my labs done about 10 days prior to my regularly scheduled appointments and arranged to get access to those lab results prior to my regular doctor's visit so I would have a few days to digest the lab results, write down any questions, and be able to go into the doctor appointment knowing that I wasn't going to be handed some sort of unwelcome, surprise bombshell that I was unprepared for. After all, if you start graphing your lab results, any really worrisome changes will pretty much jump out at you.
I think it's also really helpful to know just what your game plan will likely be should you progress to symptomatic multiple myeloma. Coming to terms on which specialist I would use, knowing where I stand on the early vs. late transplant and transplant vs. drug-only decisions, having an idea of which drugs I may use in a front line setting and which questions I would ask at that time, was also quite liberating for me.
Doing all this has taken a lot of the stress out of my regular appointments and I can't imagine doing it any other way. I now actually sort of look forward to my regular visits and helpful chats with my onc. Do I still worry a bit 2-3 days before my lab draws and while I wait for the lab results? Sure, but that worry has lessened over time.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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