Hi.
My name is Gary, I am 65 years old and was recently diagnosed with follicular lymphoma. To complete my staging, my oncologist had a bone marrow biopsy done. If this came back clear, I would be staged at 2A, The bone marrow biopsy came back clear for lymphoma, but it showed that I did have indicators that I had multiple myeloma.
I am scheduled to see the oncologist this Monday to discuss this new problem. I am at a loss. Has anyone else been through this, or does anyone have any suggestions or help for me?
Thank you.
Forums
Re: Recently diagnosed with lymphoma & myeloma
Welcome to the forum, pappystrout.
I am sorry to hear about your lymphoma diagnosis and the fact that you also may have multiple myeloma.
Do you have any additional information right now about what it was in your bone marrow biopsy that led your doctor to say that you have "indicators" of multiple myeloma?
I am not a doctor, but I suspect that what was found in the biopsy is a higher than expected number of plasma cells. Normally, there are not many plasma cells in the bone marrow – maybe a couple of percent. In people with multiple myeloma, however, the body overproduces plasma cells, and you often find 20%, 30%, and up to 90% (and more!) of the bone marrow cells are plasma cells.
You should know, though, that just because there are more than the expected number of plasma cells in your bone marrow, this does not mean you have a form of multiple myeloma that requires treatment. The myeloma could be in an early stage, when its known as either smoldering multiple myeloma, or a very early stage, when it is called "monoclonal gammopathy of undetermined significance" (MGUS). People with the disease at these stages are not typically treated. In fact, many people with the disease at those stages never see it progress to the point where treatment is necessary.
So, most likely, your doctor will want to look not only at the bone marrow biopsy result, but also other test results to determine if the myeloma has reached a point where it needs to be treated. Tests that I think will probably be necessary include a "serum protein electrophoresis" (SPEP), "serum immunofixation" (IFE), and the "serum free light light chain assay".
Also, your doctor will want to check whether there are signs myeloma is causing damage to your body, especially your kidneys and your bones. Kidney health can be checked, for example, through the creatinine level in your blood, and bone health can be checked through xrays, MRIs, or PET/CT scans as well as blood calcium levels, hemoglobin levels, and the blood cell counts for red blood cells, platelets, and the different white blood cells.
You may already have had blood tests done already that report many of the things I just mentioned, and you also may have had SPEP, IFE, and free light chain tests done. When you get a chance, you may want to check your lab results to see if you have had any of these tests. The same goes for any imaging (xrays, MRIs, or PET/CTs) you may have done.
If you have results for any of those tests, feel free to share them with us, and we can give you feedback on them.
The final thing I would recommend is that you consider making an appointment with one or two specialists at a cancer center near you. Because you have a combination of blood diseases that is rare, you really need to be seen by doctors who regularly see a lot of cases of these diseases, and who are completely up to date about the latest research. In most cases, cancer centers are the best place to find doctors with that sort of experience and knowledge. This is actually a point that is made by one of the doctors who helps here in the forum in response to a question a few years ago about another case of lymphoma and myeloma happening at the same time:
"Multiple myeloma & non-Hodgkin's lymphoma at same time" (started Aug 31, 2011)
If you let us know where you live, there are many people here who will be able to point you to a good cancer center near you with myeloma specialists and lymphoma specialists.
Sorry that I have written so much. I hope that it helps a little. Let us know if you have any more questions, and good luck at your appointment tomorrow!
I am sorry to hear about your lymphoma diagnosis and the fact that you also may have multiple myeloma.
Do you have any additional information right now about what it was in your bone marrow biopsy that led your doctor to say that you have "indicators" of multiple myeloma?
I am not a doctor, but I suspect that what was found in the biopsy is a higher than expected number of plasma cells. Normally, there are not many plasma cells in the bone marrow – maybe a couple of percent. In people with multiple myeloma, however, the body overproduces plasma cells, and you often find 20%, 30%, and up to 90% (and more!) of the bone marrow cells are plasma cells.
You should know, though, that just because there are more than the expected number of plasma cells in your bone marrow, this does not mean you have a form of multiple myeloma that requires treatment. The myeloma could be in an early stage, when its known as either smoldering multiple myeloma, or a very early stage, when it is called "monoclonal gammopathy of undetermined significance" (MGUS). People with the disease at these stages are not typically treated. In fact, many people with the disease at those stages never see it progress to the point where treatment is necessary.
So, most likely, your doctor will want to look not only at the bone marrow biopsy result, but also other test results to determine if the myeloma has reached a point where it needs to be treated. Tests that I think will probably be necessary include a "serum protein electrophoresis" (SPEP), "serum immunofixation" (IFE), and the "serum free light light chain assay".
Also, your doctor will want to check whether there are signs myeloma is causing damage to your body, especially your kidneys and your bones. Kidney health can be checked, for example, through the creatinine level in your blood, and bone health can be checked through xrays, MRIs, or PET/CT scans as well as blood calcium levels, hemoglobin levels, and the blood cell counts for red blood cells, platelets, and the different white blood cells.
You may already have had blood tests done already that report many of the things I just mentioned, and you also may have had SPEP, IFE, and free light chain tests done. When you get a chance, you may want to check your lab results to see if you have had any of these tests. The same goes for any imaging (xrays, MRIs, or PET/CTs) you may have done.
If you have results for any of those tests, feel free to share them with us, and we can give you feedback on them.
The final thing I would recommend is that you consider making an appointment with one or two specialists at a cancer center near you. Because you have a combination of blood diseases that is rare, you really need to be seen by doctors who regularly see a lot of cases of these diseases, and who are completely up to date about the latest research. In most cases, cancer centers are the best place to find doctors with that sort of experience and knowledge. This is actually a point that is made by one of the doctors who helps here in the forum in response to a question a few years ago about another case of lymphoma and myeloma happening at the same time:
"Multiple myeloma & non-Hodgkin's lymphoma at same time" (started Aug 31, 2011)
If you let us know where you live, there are many people here who will be able to point you to a good cancer center near you with myeloma specialists and lymphoma specialists.
Sorry that I have written so much. I hope that it helps a little. Let us know if you have any more questions, and good luck at your appointment tomorrow!
Re: Recently diagnosed with lymphoma & myeloma
That is uncommon, but we do see concurrent diagnosis. However, I would absolutely recommend a second opinion in these type of situations, to have the biopsy slides reviewed at a tertiary care center, and to have them seen by a lymphoma / myeloma specialist.
You should ask your physician if there are lymphoma cells in the bone marrow and plasma cells in the lymph node biopsy.
What do PET scan and skeletal survey show? Is this lymphoplasmacytic lymphoma?
This a challenging case and hope you have more details and clarity.
If you can't get to a tertiary care center, at least the slides can be sent for a second opinion to such a place.
All the best.
You should ask your physician if there are lymphoma cells in the bone marrow and plasma cells in the lymph node biopsy.
What do PET scan and skeletal survey show? Is this lymphoplasmacytic lymphoma?
This a challenging case and hope you have more details and clarity.
If you can't get to a tertiary care center, at least the slides can be sent for a second opinion to such a place.
All the best.
-
Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Recently diagnosed with lymphoma & myeloma
The plasma cell in my bone marrow biopsy was 23%. My doctor feels that, since there are no lesions present on my CT/PET scans, and I am not anemic and my kidneys are functioning properly, that the myeloma is probably in the smoldering stage. He is having me do a 24- hour urine collection and he also ordered some additional blood work.
He is associated with University of Kansas Medical Center in Kansas City Kansas. They are a recognized National Cancer Center.
My lymphoma is 3A at the present time. If the urine test and additional blood work come back with the results he expects, then he will put me in a watch-and-wait period with the myeloma. I have chosen to take chemo treatments for the lymphoma using the drug Rituxan.
I appreciate the information from everyone and it is reassuring to have a place that I can turn to for help and information.
He is associated with University of Kansas Medical Center in Kansas City Kansas. They are a recognized National Cancer Center.
My lymphoma is 3A at the present time. If the urine test and additional blood work come back with the results he expects, then he will put me in a watch-and-wait period with the myeloma. I have chosen to take chemo treatments for the lymphoma using the drug Rituxan.
I appreciate the information from everyone and it is reassuring to have a place that I can turn to for help and information.
Re: Recently diagnosed with lymphoma & myeloma
I forgot to add that the lymphoma was diagnosed by biopsy and it was follicular lymphoma. I believe that the lymph nodes are presently about 1.5 to 2.0 cm in size and are causing no problems.
Re: Recently diagnosed with lymphoma & myeloma
How would one go about sending the slides to another doctor for a second opinion?
Re: Recently diagnosed with lymphoma & myeloma
Pappystrout,
You would choose where you would like to have your slides sent based on recommendations from others and your research (such as Mayo in MN or one of the other well-known myeloma centers). Then you would call that center and ask if you can have your slides reviewed. You'll just have to call them and explain your situation.
Alternatively, you could ask your doctor if they could place the initial call. If they say yes, then you go to your pathology department, where your biopsies were initially taken, and ask that they be sent to the other hospital. You'll need to provide the name and address of where the slides should go. They do this sort of thing a lot, so they should be used to it.
Good luck!
Tracy
You would choose where you would like to have your slides sent based on recommendations from others and your research (such as Mayo in MN or one of the other well-known myeloma centers). Then you would call that center and ask if you can have your slides reviewed. You'll just have to call them and explain your situation.
Alternatively, you could ask your doctor if they could place the initial call. If they say yes, then you go to your pathology department, where your biopsies were initially taken, and ask that they be sent to the other hospital. You'll need to provide the name and address of where the slides should go. They do this sort of thing a lot, so they should be used to it.
Good luck!
Tracy
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Recently diagnosed with lymphoma & myeloma
To submit a sample for second review, it is variable from center to center.
For example, to submit to MD Anderson, the way to do it is to have you or your oncologist call the "askMDAnderson" number for general information at the center (1-877-632-6789), and they can coordinate.
For example, to submit to MD Anderson, the way to do it is to have you or your oncologist call the "askMDAnderson" number for general information at the center (1-877-632-6789), and they can coordinate.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Recently diagnosed with lymphoma & myeloma
Thank you Tracy and Dr. Shah for your responses.
I should be seeing my oncologist on the 28th of this month to get the results of the 24-hour urine and additional blood test to verify that the myeloma is in the smoldering stage. If it is, I will start working on the follicular lymphoma and try to get it in remission.
It is so nice and comforting to have a place like this forum to access and just talk with people who are in my position. Sometimes a person just needs someone outside of the family to talk with and a place to go where they can just ask questions. I am really feeling good at this time, and it is hard to believe that there is something inside of me that could change all of that.
Thanks again to everyone for just being there. It really helps.
I should be seeing my oncologist on the 28th of this month to get the results of the 24-hour urine and additional blood test to verify that the myeloma is in the smoldering stage. If it is, I will start working on the follicular lymphoma and try to get it in remission.
It is so nice and comforting to have a place like this forum to access and just talk with people who are in my position. Sometimes a person just needs someone outside of the family to talk with and a place to go where they can just ask questions. I am really feeling good at this time, and it is hard to believe that there is something inside of me that could change all of that.
Thanks again to everyone for just being there. It really helps.
Re: Recently diagnosed with lymphoma & myeloma
I should have also stated that, after getting the results from the 24-hour. urine and additional blood work, I will discuss getting a second opinion with my oncologist.
Thanks again to everyone for their help.
Thanks again to everyone for their help.
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