I am currently undergoing treatment for a plasmacytoma in my T7 vertebra with a quarterly IV drip of Zometa. The schedule is mainly due to my kidney function being at 40 percent and a heart condition.
My current blood tests (March 2017) and a PET scan in December 2016 do not indicate any significant change since my radiation treatment in December 2015. My oncologist, who is not a multiple myeloma specialist, assures me that all is well for now. My concern is:
Kappa Free Light Chain - 51.46 increased from 38.54 mg/l in Dec 2016 - normal 3.30-19.40
Lambda Free Light Chain - 23.83 - increased from 21.15 mg/l in Dec 2016 - normal 5.71-26.30
Kappa/Lambda Ratio - 2.16 increased from 1.82 Dec 2016.
No M - spike observed.
While these results are not real serious, they are on the rise.
I was diagnosed in November 2014. When do I need to establish a relationship with a multiple myeloma specialist? I know it could be a long time, if ever, until I progress to multiple myeloma. Should I wait until that day comes? My current doctor is close by and convenient for my present treatment.
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TheQuill - Who do you know with myeloma?: No one
- When were you/they diagnosed?: Nov 16, 2015
- Age at diagnosis: 68
Re: When should you see a multiple myeloma specialist?
TheQuill,
Did the doctors rule out your excess free light chain as being a contributor to your reduced kidney function? That is, did they rule out renal insufficiency (the "R" in CRAB) due to your plasma cell disorder?
Putting the above question aside, I think most on this forum would suggest seeing a multiple myeloma specialist when first diagnosed, if not as soon as possible to establish a relationship and get a second opinion regarding one's current diagnosis and treatment.
Seeing a specialist certainly doesn't mean that you still can't be seen and treated by your local oncologist. But it might result in the specialist conferring with your local oncologist regarding your current and/or future treatment.
Did the doctors rule out your excess free light chain as being a contributor to your reduced kidney function? That is, did they rule out renal insufficiency (the "R" in CRAB) due to your plasma cell disorder?
Putting the above question aside, I think most on this forum would suggest seeing a multiple myeloma specialist when first diagnosed, if not as soon as possible to establish a relationship and get a second opinion regarding one's current diagnosis and treatment.
Seeing a specialist certainly doesn't mean that you still can't be seen and treated by your local oncologist. But it might result in the specialist conferring with your local oncologist regarding your current and/or future treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: When should you see a multiple myeloma specialist?
The Quill,
You should see a myeloma specialist the first thing you do after you are diagnosed with myeloma.
Generally you have weeks to decide on the course of action you are comfortable pursuing. During that time you we be thoroughly evaluated. Your risk status can be determined through various tests, and based on those results a treatment plan (best drugs for your disease) can be designed.
I would not start any treatment until a thorough treatment plan was laid out.
I remember my first instinct was to do something now. In my case that would have been a terrible decision. Had I started any treatment, I would have been ineligible to enter the clinical trial I participated in. I volunteered for the clinical trial. Had I not, my myeloma clinic said they would have treated me the same anyhow. However, I think insurance would have been a hassle. As it turned out, insurance was no problem what so ever.
Myeloma is a very inconvenient disease. Arranging to see a myeloma specialist might be one of those inconveniences, but well worth it
Craig
You should see a myeloma specialist the first thing you do after you are diagnosed with myeloma.
Generally you have weeks to decide on the course of action you are comfortable pursuing. During that time you we be thoroughly evaluated. Your risk status can be determined through various tests, and based on those results a treatment plan (best drugs for your disease) can be designed.
I would not start any treatment until a thorough treatment plan was laid out.
I remember my first instinct was to do something now. In my case that would have been a terrible decision. Had I started any treatment, I would have been ineligible to enter the clinical trial I participated in. I volunteered for the clinical trial. Had I not, my myeloma clinic said they would have treated me the same anyhow. However, I think insurance would have been a hassle. As it turned out, insurance was no problem what so ever.
Myeloma is a very inconvenient disease. Arranging to see a myeloma specialist might be one of those inconveniences, but well worth it
Craig
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: When should you see a multiple myeloma specialist?
Thanks for the advice. I am not sure about the kidney function being affected by the "R" in CRAB.
I will consult my nephrologist when I see him next month. So far the nephrologist is not seeing any increase or serious problems with my kidneys. I am on so many drugs for my heart disease and other ailments that affect the kidneys, it is hard to find one culprit that is causing the problem.
I will consult my nephrologist when I see him next month. So far the nephrologist is not seeing any increase or serious problems with my kidneys. I am on so many drugs for my heart disease and other ailments that affect the kidneys, it is hard to find one culprit that is causing the problem.
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TheQuill - Who do you know with myeloma?: No one
- When were you/they diagnosed?: Nov 16, 2015
- Age at diagnosis: 68
Re: When should you see a multiple myeloma specialist?
I agree with the others that the time to see a specialist is as soon as possible. Your local oncologist would work with the specialist in following / coordinating agreed upon strategy and treatment.
My local oncologist / hematologist is wonderful, smart, with an impressive CV, and we have an excellent relationship, but she has perhaps 10-12 myeloma patients in her practice, which simply can't give her the clinical experience to evaluate my case and guide treatment decisions with the same depth of knowledge my specialist does.
My local oncologist / hematologist is wonderful, smart, with an impressive CV, and we have an excellent relationship, but she has perhaps 10-12 myeloma patients in her practice, which simply can't give her the clinical experience to evaluate my case and guide treatment decisions with the same depth of knowledge my specialist does.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
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