Hello,
My dad was just diagnosed with multiple myeloma at age 61. He had an elevated PSA level, so his doctor sent him to a urologist and he did 24-hour urine on him that showed protein, so the urologist sent him to a nephrologist who drew a kappa light chain level and it was 222.75. The nephrologist sent him to a hematologist and they said we need to rule this out.
So dad did a biopsy and it came back kappa light chain 50% and negative FISH and others. My dad has no CRAB symptoms and feels great. The oncologist wants him to just get blood work and watch, but a myeloma specialist at Ohio State said he needs to start treatment. We live 2.5 hours from Ohio State, so the specialist at Ohio State also recommended a specialist at the University of Michigan (we are 45 minutes from U of M). There is also a Detroit hospital and Cleveland Clinic, which is less than 3 hours.
How do you choose a place? Do you only go to the myeloma specialist or do you keep a local oncologist too?
How do you decide what to do when advice is conflicting and there are different treatments out there?
My dad's not medical at all so I am trying to help and figure this out. What does his future hold? It's been really hard to think about this. Oh, he is only kappa light chain / Bence Jones myeloma. Do we consider a stem cell transplant? Do you do chemo first or harvest stem cells?
So many questions ...
Forums
5 posts
• Page 1 of 1
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brutus1760 - Name: Jen
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 61
Re: Choosing a myeloma specialist and treatment
Hi Jen,
Welcome to the forum. Sorry to hear your dad is dealing with this, but glad he has no FISH issues.
First off, you can often keep you current local oncologist for treatment and testing purposes and then only occasionally see a specialist now and then to help direct your treatment. But you need to check with both your local onc and the specialist.
Secondly, I'm wondering if there is more to the diagnosis than meets the eye in your post?
Do you know what his serum kappa, lambda and kappa/lambda free light chain ratios are (including units of measure)?
Has he had PET/CT or whole body MRI scan, and were any focal lesions detected on one of those scans?
Has he had a a lot repeated infections (I'm guessing "not" if he's feeling great).
You can get an idea of why I'm asking some of these questions by looking at the new new diagnostic criteria for multiple myeloma, which are explained in the article I've listed below. But having read this, note that not every specialist agrees that treatment should begin automatically if one meets on of the new "myeloma defining events" (MDEs).
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
While this isn't for everybody, I personally like getting the opinion of multiple specialists (I saw three when first being diagnosed). I would therefore likely also seek out both UM and Cleveland Clinic if it were me. Folks on this forum might be able to make specific specialist recommendations for top specialists in your area and nearby.
Then I would start to do your homework on this forum and elsewhere on treatment philosophies and whether to transplant or not (it's not a simple question and there is no perfect answer - folks can point you to many threads on this forum to address the subject of stem cell treatments and front line treatment choices).
If you aren't the kind of person that wants to deal with several different opinions and would feel overwhelmed by three professional opinions (you need to be honest with yourself on this point), then I might suggest getting just two opinions and going with the doc that you feel most comfortable with.
I would also ask your Ohio State specialist point blank why he/she wants to start treatment now, given the latest IMWG criteria mentioned above. And if he/she started treatment now and you didn't meet any of the IMWG criteria listed above, would it be in a clinical trial or not?
Hope this helps get you started. This forum is a wealth of info for folks starting on this journey. Others on the forum also may have some different opinions than what I've expressed here.
Welcome to the forum. Sorry to hear your dad is dealing with this, but glad he has no FISH issues.
First off, you can often keep you current local oncologist for treatment and testing purposes and then only occasionally see a specialist now and then to help direct your treatment. But you need to check with both your local onc and the specialist.
Secondly, I'm wondering if there is more to the diagnosis than meets the eye in your post?
Do you know what his serum kappa, lambda and kappa/lambda free light chain ratios are (including units of measure)?
Has he had PET/CT or whole body MRI scan, and were any focal lesions detected on one of those scans?
Has he had a a lot repeated infections (I'm guessing "not" if he's feeling great).
You can get an idea of why I'm asking some of these questions by looking at the new new diagnostic criteria for multiple myeloma, which are explained in the article I've listed below. But having read this, note that not every specialist agrees that treatment should begin automatically if one meets on of the new "myeloma defining events" (MDEs).
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
While this isn't for everybody, I personally like getting the opinion of multiple specialists (I saw three when first being diagnosed). I would therefore likely also seek out both UM and Cleveland Clinic if it were me. Folks on this forum might be able to make specific specialist recommendations for top specialists in your area and nearby.
Then I would start to do your homework on this forum and elsewhere on treatment philosophies and whether to transplant or not (it's not a simple question and there is no perfect answer - folks can point you to many threads on this forum to address the subject of stem cell treatments and front line treatment choices).
If you aren't the kind of person that wants to deal with several different opinions and would feel overwhelmed by three professional opinions (you need to be honest with yourself on this point), then I might suggest getting just two opinions and going with the doc that you feel most comfortable with.
I would also ask your Ohio State specialist point blank why he/she wants to start treatment now, given the latest IMWG criteria mentioned above. And if he/she started treatment now and you didn't meet any of the IMWG criteria listed above, would it be in a clinical trial or not?
Hope this helps get you started. This forum is a wealth of info for folks starting on this journey. Others on the forum also may have some different opinions than what I've expressed here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Choosing a myeloma specialist and treatment
Jen
While Multibilly covered the medical aspects thoroughly, I would just like to add my insurance, and others, have a travel provision for transplants procedures where they reimbursed me up to $10,000 for rooms and travel for treatment at accredited facilities over a certain number of miles from home(100 or 150 miles).
Hopefully your dad won't require this insurance feature. I wouldn't want you to choose your healthcare options without knowing what I learned regarding insurance travel coverage.
Best of Luck
While Multibilly covered the medical aspects thoroughly, I would just like to add my insurance, and others, have a travel provision for transplants procedures where they reimbursed me up to $10,000 for rooms and travel for treatment at accredited facilities over a certain number of miles from home(100 or 150 miles).
Hopefully your dad won't require this insurance feature. I wouldn't want you to choose your healthcare options without knowing what I learned regarding insurance travel coverage.
Best of Luck
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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: Choosing a myeloma specialist and treatment
Multibilly always gives good advice and information. It really is very important to have a myeloma specialist on your treatment team even if you don't see this oncologist very often. The specialist that you choose likely will be happy to coordinate your father's care with his local oncologist. Just make sure that your local oncologist is open to this arrangement.
I would also suggest that you get copies of the results of all of your father's testing. This is also important so that your father, or you, can keep track of the trends in his lab results. Most of us track the CBC results, kidney results, total protein and SPEP and/or UPEP results, and the free lite levels and ratio, plus others depending on our particular situations.
If your father was diagnosed with MGUS, monoclonal protein with undetermined significance, or smoldering myeloma, the watch and wait monitoring is common. There are more oncologists who are now beginning treatment in the smoldering myeloma phase if the person has genetic markers in the myeloma cells that suggest that the person is in the high risk category of progressing to active myeloma soon. There is no set time or treatment regimen for beginning treatment. A lot of it depends on the results of all of the initial tests that were done to diagnose myeloma and the individual oncologist's treatment philosophy.
Lots to learn and understand not only now at initial diagnosis, but as your father progresses through his journey with myeloma. Treatment options are changing quickly with 4 new drugs approved in 2015. Research in myeloma is hot!
If you can give us the results of your father's tests with the units of measurement, that would help us respond to your questions. But, you will learn quickly that everyone's myeloma is different and everyone responds to treatment differently.
All the best to your father and to you in starting his new path,
Nancy in Phila
I would also suggest that you get copies of the results of all of your father's testing. This is also important so that your father, or you, can keep track of the trends in his lab results. Most of us track the CBC results, kidney results, total protein and SPEP and/or UPEP results, and the free lite levels and ratio, plus others depending on our particular situations.
If your father was diagnosed with MGUS, monoclonal protein with undetermined significance, or smoldering myeloma, the watch and wait monitoring is common. There are more oncologists who are now beginning treatment in the smoldering myeloma phase if the person has genetic markers in the myeloma cells that suggest that the person is in the high risk category of progressing to active myeloma soon. There is no set time or treatment regimen for beginning treatment. A lot of it depends on the results of all of the initial tests that were done to diagnose myeloma and the individual oncologist's treatment philosophy.
Lots to learn and understand not only now at initial diagnosis, but as your father progresses through his journey with myeloma. Treatment options are changing quickly with 4 new drugs approved in 2015. Research in myeloma is hot!
If you can give us the results of your father's tests with the units of measurement, that would help us respond to your questions. But, you will learn quickly that everyone's myeloma is different and everyone responds to treatment differently.
All the best to your father and to you in starting his new path,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Choosing a myeloma specialist and treatment
Hi and sorry you need to be dealing with this. If I were in your Dad's shoes, I'd probably follow the advice of the myeloma specialist. As many have noted, myeloma is a very complex disease, and medical thinking and treatment are changing for the better rapidly. Regular oncologists may not be up to speed on important facets of care.
A couple of thoughts immediately came to my mind:
1. I'm assuming your Dad's biopsy samples were tested for AL amyloidosis, a condition that can be associated with myeloma. But I'd make sure. Amyloidosis is where the abnormal protein (free light chain, either kappa or lambda) produced by the cancerous plasma cells folds into a particular pattern called amyloid. This particular shape is very difficult for the body to clear, and so it builds up all over the place and clogs things up. The most common places are the kidneys and the heart. The biopsy sample would have needed to have the Congo red stain. There are special considerations when a person has myeloma with amyloidosis.
2. Auto transplant should definitely be considered, as the myeloma disease process is already harming your Dad's kidneys. Normally the kidneys should be able to retain all the protein that filters through them, resulting in zero protein remaining in the urine. When the kidneys start spilling protein into the urine, they are already compromised. Whether or not to proceed with a transplant would depend on so many individual factors ... again coming around to the importance of getting the advice of a myeloma expert.
Be patient with yourself, a patient patient so to speak. The learning curve here is steep indeed, but you aren't alone.
Tracy
A couple of thoughts immediately came to my mind:
1. I'm assuming your Dad's biopsy samples were tested for AL amyloidosis, a condition that can be associated with myeloma. But I'd make sure. Amyloidosis is where the abnormal protein (free light chain, either kappa or lambda) produced by the cancerous plasma cells folds into a particular pattern called amyloid. This particular shape is very difficult for the body to clear, and so it builds up all over the place and clogs things up. The most common places are the kidneys and the heart. The biopsy sample would have needed to have the Congo red stain. There are special considerations when a person has myeloma with amyloidosis.
2. Auto transplant should definitely be considered, as the myeloma disease process is already harming your Dad's kidneys. Normally the kidneys should be able to retain all the protein that filters through them, resulting in zero protein remaining in the urine. When the kidneys start spilling protein into the urine, they are already compromised. Whether or not to proceed with a transplant would depend on so many individual factors ... again coming around to the importance of getting the advice of a myeloma expert.
Be patient with yourself, a patient patient so to speak. The learning curve here is steep indeed, but you aren't alone.
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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