Hi,
My mom was just staged with multiple myeloma, but she doesn't have most of the symptoms I've read about. Could the doctor be wrong with the staging?
She states its due to the levels in her blood and although her kidneys are fine today, they have not been in the past, it's up and down. Now I'm getting worried because I find out there's only 3 stages and yet aside from the fatigue, my mom seems fine. She had surgery at Stanford 2 years ago and they did a major work up on her. Surely they would have noticed abnormal levels at that time?
They want to do chemotherapy asap and I'm having a hard time with it. I can only imagine what my mom is going through. I don't know if my mom has months or years at this point and, quite frankly, I'm a little mad at the doctor for not being clearer with us.
Just hearing the news takes one's breath away. I don't know what to say to my mom at this point. It's her will, not mine, but I at least want her to be informed. She's only 69 and I feel she has some time with us, but now I just don't know. I'm getting the records to get another opinion, but only if they use those records and not test her again. She's tired of the testing.
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Re: Is a multiple myeloma diagnosis & staging subjective?
Hi Victor,
Sorry to hear about your mom.
The staging for myeloma is not subjective. However, unlike other cancers, staging is not that important in myeloma and doesn't generally predict one's outcome, nor will it determine if treatment is required or not. What is important is if your mom is experiencing organ damage or not.
In general, oncologists will make a decision to start myeloma treatment based on meeting one or more of the myeloma "CRAB" (hyperCalcemia, Renal dysfunction, Anemia, Bone lesions) criteria. So, if treatment is being started based solely on her blood lab results and her kidney function is fine, it would be good to know if her calcium level is high or her hemoglobin level is low and what those values are.
Based on the clinical judgement of the oncologist, he/she may also elect to start treatment based on meeting one of the newer "Myeloma Defining Events". In that case, you would want to know what her bone marrow plasma cell percentage and serum free light chain values are. Again, I'm assuming that treatment is being started based solely on her blood lab results and that she has normal kidney function and no bone damage. See this article to get a better idea of what these criteria are:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
BTW, it's almost always a good idea to get a second opinion before starting myeloma treatment and there is no substitute for working with a hematologist/oncologist that specializes in myeloma. If you let us know where your mom is located, folks on this forum can make some recommendations as to where to find some specialists.
With the good care of a specialist and some luck, your mom could very well go on to live a relatively normal life.
Sorry to hear about your mom.
The staging for myeloma is not subjective. However, unlike other cancers, staging is not that important in myeloma and doesn't generally predict one's outcome, nor will it determine if treatment is required or not. What is important is if your mom is experiencing organ damage or not.
In general, oncologists will make a decision to start myeloma treatment based on meeting one or more of the myeloma "CRAB" (hyperCalcemia, Renal dysfunction, Anemia, Bone lesions) criteria. So, if treatment is being started based solely on her blood lab results and her kidney function is fine, it would be good to know if her calcium level is high or her hemoglobin level is low and what those values are.
Based on the clinical judgement of the oncologist, he/she may also elect to start treatment based on meeting one of the newer "Myeloma Defining Events". In that case, you would want to know what her bone marrow plasma cell percentage and serum free light chain values are. Again, I'm assuming that treatment is being started based solely on her blood lab results and that she has normal kidney function and no bone damage. See this article to get a better idea of what these criteria are:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
BTW, it's almost always a good idea to get a second opinion before starting myeloma treatment and there is no substitute for working with a hematologist/oncologist that specializes in myeloma. If you let us know where your mom is located, folks on this forum can make some recommendations as to where to find some specialists.
With the good care of a specialist and some luck, your mom could very well go on to live a relatively normal life.
Last edited by Multibilly on Sat Sep 23, 2017 8:45 am, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is a multiple myeloma diagnosis & staging subjective?
Hello Victor,
I'm sorry to hear about your mother's multiple myeloma diagnosis.
Multiple myeloma can be a difficult disease to diagnose, mainly because some of the most common symptoms, such as back pain and fatigue, have so many other causes. At the same time, it is entirely possible that someone may have multiple myeloma, and not have any significant symptoms. There are many cases here in the forum of myeloma patients where that was the case -- that is, where the diagnosis was found just because of routine blood testing.
Also, as Multibilly mentions above, the criteria for a diagnosis are very specific. See this forum post for the criteria and some additional references:
https://myelomabeacon.org/forum/criteria-for-multiple-myeloma-diagnosis-t8505.html
Note that many of the criteria can be fulfilled without the patient having noticed any symptoms of the disease.
It is actually good news that your mother's disease had not advanced to a point where she was experiencing significant symptoms. Cases like your mother's, where the disease is caught early in its development, usually have a very good prognosis. Also, as I'm sure you've found by reading the postings and articles here at the site, many new treatments for myeloma have been introduced in recent years, and are under development, so there are many weapons in the arsenal for fighting this disease.
Good luck!
I'm sorry to hear about your mother's multiple myeloma diagnosis.
Multiple myeloma can be a difficult disease to diagnose, mainly because some of the most common symptoms, such as back pain and fatigue, have so many other causes. At the same time, it is entirely possible that someone may have multiple myeloma, and not have any significant symptoms. There are many cases here in the forum of myeloma patients where that was the case -- that is, where the diagnosis was found just because of routine blood testing.
Also, as Multibilly mentions above, the criteria for a diagnosis are very specific. See this forum post for the criteria and some additional references:
https://myelomabeacon.org/forum/criteria-for-multiple-myeloma-diagnosis-t8505.html
Note that many of the criteria can be fulfilled without the patient having noticed any symptoms of the disease.
It is actually good news that your mother's disease had not advanced to a point where she was experiencing significant symptoms. Cases like your mother's, where the disease is caught early in its development, usually have a very good prognosis. Also, as I'm sure you've found by reading the postings and articles here at the site, many new treatments for myeloma have been introduced in recent years, and are under development, so there are many weapons in the arsenal for fighting this disease.
Good luck!
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JimNY
Re: Is a multiple myeloma diagnosis & staging subjective?
Victor,
Multibilly and JimNY have expressed what I wanted to tell you far better than I could say it. The only thing I can add is about your mother's being reluctant to have more tests. Testing, and in particular, blood work is a part of the disease and while nobody I know likes getting poked, one just has to deal with it. Blood work will be an ongoing part of any treatment regimen. It sure beats the hell out of determining how effective the treatment is by witnessing some of the unpleasant things that can happen if she does not get the right treatment.
I told my doctor, and I am surely not the only one who has said it, I never knew I was sick until they told me and I never felt bad until some side effects of the treatment hit me.
For the record, my experience started back in 2010 with a plasmacytoma in a rib and after radiation took care of that my blood work showed I needed to start chemo in Sept of 2014. I have had a couple changes in medication and several breaks when I was taking nothing. Blood numbers are now creeping back up and I will begin something new next month. I am almost 71 years old and opted not to go with a transplant, Just medication.
Charlie- (grouchy German)
Multibilly and JimNY have expressed what I wanted to tell you far better than I could say it. The only thing I can add is about your mother's being reluctant to have more tests. Testing, and in particular, blood work is a part of the disease and while nobody I know likes getting poked, one just has to deal with it. Blood work will be an ongoing part of any treatment regimen. It sure beats the hell out of determining how effective the treatment is by witnessing some of the unpleasant things that can happen if she does not get the right treatment.
I told my doctor, and I am surely not the only one who has said it, I never knew I was sick until they told me and I never felt bad until some side effects of the treatment hit me.
For the record, my experience started back in 2010 with a plasmacytoma in a rib and after radiation took care of that my blood work showed I needed to start chemo in Sept of 2014. I have had a couple changes in medication and several breaks when I was taking nothing. Blood numbers are now creeping back up and I will begin something new next month. I am almost 71 years old and opted not to go with a transplant, Just medication.
Charlie- (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Is a multiple myeloma diagnosis & staging subjective?
Hi Victor,
It's great you are researching for your mom.
I just want to say this cancer is not a death sentence, and the treatments are not that bad.
I'm 39 and have been living with this 10 years now! I was diagnosed with "advanced" myeloma, as they didn't bother with a stage for me since I was quite ill and needed treatment immediately. I'm not a typical case so I'll skip the details unless you want to hear them.
I recently started treatment for my relapse. I can tell you for my relapse I had minimal symptoms. Fatigue, some increased bone osteopenia, and irregular blood work (increased protein, anemia, etc. the typical myeloma stuff) but that's it. I did not have a major incident like a broken bone or infection.
The newer drugs are not your typical chemotherapy meds like in the movies. They are very targeted and the side effects for me are feeling like I have a bit of a flu for a few days, but by the weekend, I feel back to myself.
It's great you are researching for your mom.
I just want to say this cancer is not a death sentence, and the treatments are not that bad.
I'm 39 and have been living with this 10 years now! I was diagnosed with "advanced" myeloma, as they didn't bother with a stage for me since I was quite ill and needed treatment immediately. I'm not a typical case so I'll skip the details unless you want to hear them.
I recently started treatment for my relapse. I can tell you for my relapse I had minimal symptoms. Fatigue, some increased bone osteopenia, and irregular blood work (increased protein, anemia, etc. the typical myeloma stuff) but that's it. I did not have a major incident like a broken bone or infection.
The newer drugs are not your typical chemotherapy meds like in the movies. They are very targeted and the side effects for me are feeling like I have a bit of a flu for a few days, but by the weekend, I feel back to myself.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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