Hello,
My 78-year-old mother in law was just diagnosed with multiple myeloma 8 days ago.
She has been experiencing debilitating back pain for over a year now. She has not slept in a bed since last July – can only sleep in an electric recliner. After seeing spinal surgeons, having other tests done, etc., someone finally noticed in her recent blood / urine tests that she had high calcium levels in her urine. The multiple myeloma diagnosis followed shortly thereafter.
Since last week, she has had a PET Scan, skeletal survey, and MRI. Several lytic lesions were identified in her bones. She has 3 compression fractures in her spine and 3 in her ribs. She has been told she will need a bone marrow biopsy as well. Not sure at this point whether the lesions and the fractures are the same thing, or different.
She's had a CBC done, but some of the tests I see referred to here on the forums were ordered, although I do not see the results in her profile (immunoglobins and free light chains as examples). We don't know what stage she is at or what variety of multiple myeloma she has.
We are scheduled to meet with the chief oncologist at our local Kaiser facility tomorrow (I realize folks will recommend seeing a specialist, but we aren't able / ready to do that yet).
My question is a simple one: What types of questions should we be asking at this initial appointment?
Thanks in advance for any perspective.
Forums
5 posts
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Gigi927 - Name: Gigi
- Who do you know with myeloma?: MIL
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 78
Re: What to ask at first oncology appointment post diagnosis
Hello Gigi:
At 78 years young, your mother-in-law is at a stage where they usually try and give a treatment, but try and dial it down based on concerns with side effects. In this day and age, however, if she is a "young" 78, they might go aggressive.
As you may research the Beacon and read about other cases, many people get this diagnosis when they are in a very bad state. The primary step is to suppress the myeloma with treatment. So you have to get treatment started quickly. Exactly what treatment, I am not sure. You'll have to discuss that with your mother-in-law's doctor.
On a very high and simplistic level, if your mother-in-law is a "responder", then the myeloma will go away quickly, and she will try and get back to normal. If the initial treatment does not give a good response, then they will try a 2nd, 3rd, etc, until they find something that works. If you are fortunate and get a good initial response, then there will be some type of "maintenance" or continuous treatment that might be recommended.
Tom Brokaw was diagnosed at 72 years young. You may want to read up on that approach for specifics as to what might apply in your case. Best of luck to you and your family.
JPC
At 78 years young, your mother-in-law is at a stage where they usually try and give a treatment, but try and dial it down based on concerns with side effects. In this day and age, however, if she is a "young" 78, they might go aggressive.
As you may research the Beacon and read about other cases, many people get this diagnosis when they are in a very bad state. The primary step is to suppress the myeloma with treatment. So you have to get treatment started quickly. Exactly what treatment, I am not sure. You'll have to discuss that with your mother-in-law's doctor.
On a very high and simplistic level, if your mother-in-law is a "responder", then the myeloma will go away quickly, and she will try and get back to normal. If the initial treatment does not give a good response, then they will try a 2nd, 3rd, etc, until they find something that works. If you are fortunate and get a good initial response, then there will be some type of "maintenance" or continuous treatment that might be recommended.
Tom Brokaw was diagnosed at 72 years young. You may want to read up on that approach for specifics as to what might apply in your case. Best of luck to you and your family.
JPC
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JPC - Name: JPC
Re: What to ask at first oncology appointment post diagnosis
Hi Gigi,
Sorry to hear about your MIL's situation and condition. She is lucky to have your help though! It's too bad it took so long to diagnose, but that is a story I have read over and over. It is not a very common condition and not perhaps considered as a diagnosis and for testing early on.
She'd been to a spinal surgeon, but they did not find the damage to her spine and ribs until now – did they do x-rays that failed to show that, did it only show up on the advance imaging tests? Or they just didn't do imaging until they found the abnormal calcium?
I second what JPC has said. You asked about questions: Given that your MIL has spinal compression fractures, I would be asking about kyphoplasty. It is a procedure that injects a cement to restore the vertebrae and can do wonders for the pain. It has to be done within a certain amount of time. I think once treatment gets underway she will improve and feel MUCH better.
I too am a Kaiser patient. What region are you in ? I'm in Southern California, and at the smoldering stage, so not the same situation.
Sorry to hear about your MIL's situation and condition. She is lucky to have your help though! It's too bad it took so long to diagnose, but that is a story I have read over and over. It is not a very common condition and not perhaps considered as a diagnosis and for testing early on.
She'd been to a spinal surgeon, but they did not find the damage to her spine and ribs until now – did they do x-rays that failed to show that, did it only show up on the advance imaging tests? Or they just didn't do imaging until they found the abnormal calcium?
I second what JPC has said. You asked about questions: Given that your MIL has spinal compression fractures, I would be asking about kyphoplasty. It is a procedure that injects a cement to restore the vertebrae and can do wonders for the pain. It has to be done within a certain amount of time. I think once treatment gets underway she will improve and feel MUCH better.
I too am a Kaiser patient. What region are you in ? I'm in Southern California, and at the smoldering stage, so not the same situation.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: What to ask at first oncology appointment post diagnosis
Thank you JPC for your input. Sadly, my MIL is not a "young" 78. She has high blood pressure, a thyroid condition, and is overweight. So I imagine the treatment will not fall on the aggressive side of the spectrum. We are hopeful that she can get started quickly, if for nothing else than to relieve the pain she has been withstanding for so long!
Carol, we are Kaiser Southern California as well (north San Diego county). She saw a spinal surgeon in November. At that time, they found one small compression fracture which they could not attribute to anything specific, but said that these often will improve in 3-6 months with rest. They gave her a special (expensive) brace and asked her to check back in a few months.
Unfortunately, she refused to go back to the surgeon. He was fantastic, but she got frustrated about the pain and tends to be stubborn about things. So I don't think the puzzle pieces got put together until the elevated calcium levels showed up on her tests. Personally, I think that had she gone back to the surgeon, we might have caught this sooner. But that is something we can't control now.
I will ask about the kyphoplasty. This sounds like something that the surgeon may have mentioned back at that time as an option down the road. I haven't found that Kaiser here has a myeloma specialist, but we are seeing the chief of oncology, and her endocrinologist did say that we were fortunate to be assigned the "best guy."
I appreciate the input and hope to have a lot more answers (and questions, of course) in a few hours!
Carol, we are Kaiser Southern California as well (north San Diego county). She saw a spinal surgeon in November. At that time, they found one small compression fracture which they could not attribute to anything specific, but said that these often will improve in 3-6 months with rest. They gave her a special (expensive) brace and asked her to check back in a few months.
Unfortunately, she refused to go back to the surgeon. He was fantastic, but she got frustrated about the pain and tends to be stubborn about things. So I don't think the puzzle pieces got put together until the elevated calcium levels showed up on her tests. Personally, I think that had she gone back to the surgeon, we might have caught this sooner. But that is something we can't control now.
I will ask about the kyphoplasty. This sounds like something that the surgeon may have mentioned back at that time as an option down the road. I haven't found that Kaiser here has a myeloma specialist, but we are seeing the chief of oncology, and her endocrinologist did say that we were fortunate to be assigned the "best guy."
I appreciate the input and hope to have a lot more answers (and questions, of course) in a few hours!
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Gigi927 - Name: Gigi
- Who do you know with myeloma?: MIL
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 78
Re: What to ask at first oncology appointment post diagnosis
Many people are being treated for myeloma through Kaiser in Southern California and have found that with persistence they could get Kaiser to agree to at least a second opinion from a myeloma specialist.
The bone marrow biopsy, chemistry blood tests, thyroid test, 24 hour urine collection, SPEP for m-spike level/presence, IFE for immunoglobulin breakdown and levels, and free lite test for kappa and lambda levels and ratio should all be done. The bone marrow biopsy will show the percentage of abnormal cells in the marrow and should have gene testing done to see if there are any abnormalities in those cells. This is pretty much the definitive test for myeloma and can guide the oncologist as to what type of treatment your MIL should start on.
With bone lesions apparent and a fracture in the spine, she might be started on a bisphosphonate, Zometa or Aredia, infusion to strengthen her bones. This can help with the bone pain she has been experiencing. She may also be a candidate for the kyphloplasy procedure for her spinal fractures. This was already mentioned. She also might be a candidate for a few radiation treatments to the symptomatic lesions. But, if to the spine and she is a candidate for the kyphoplasty procedure, people recommend having the procedure done prior to radiation so that her spine is stable. In addition if she is started on treatment quickly, her response to treatment will have a positive effect on her pain levels. I had a broken arm from myeloma lesions when I started on treatment with Revlimid and Dexamethasone and within a couple of weeks of starting treatment the intractable pain from the fracture began to decrease and disappeared within a few weeks as the myeloma was decreasing in response to the drugs.
Don't be concerned whether the oncologist is going to be aggressive with your MIL's treatment, or not. He will recommend what he thinks is appropriate for her and will be monitoring her response and side effects closely. What likely is not on the table with her is a stem cell transplant because of her age and her co-morbidities. If she was younger that probably wouldn't be off the table, either. I, too, have high blood pressure and am overweight, no thyroid condition, and have been treated well. My oncologist always orders a thyroid test every time I have bloodwork done. I have responded well to my treatment and have minimal side effects from my treatment regimen.
Ask to receive the results of your MIL's tests sent to her after each appointment. Ask if they have a patient portal where test results are posted online when you sign up for access. I would bet that they have that where your MIL is being seen.
All of this to say, I wish your MIL a good start to her treatment and a good response.
Nancy in Phila
The bone marrow biopsy, chemistry blood tests, thyroid test, 24 hour urine collection, SPEP for m-spike level/presence, IFE for immunoglobulin breakdown and levels, and free lite test for kappa and lambda levels and ratio should all be done. The bone marrow biopsy will show the percentage of abnormal cells in the marrow and should have gene testing done to see if there are any abnormalities in those cells. This is pretty much the definitive test for myeloma and can guide the oncologist as to what type of treatment your MIL should start on.
With bone lesions apparent and a fracture in the spine, she might be started on a bisphosphonate, Zometa or Aredia, infusion to strengthen her bones. This can help with the bone pain she has been experiencing. She may also be a candidate for the kyphloplasy procedure for her spinal fractures. This was already mentioned. She also might be a candidate for a few radiation treatments to the symptomatic lesions. But, if to the spine and she is a candidate for the kyphoplasty procedure, people recommend having the procedure done prior to radiation so that her spine is stable. In addition if she is started on treatment quickly, her response to treatment will have a positive effect on her pain levels. I had a broken arm from myeloma lesions when I started on treatment with Revlimid and Dexamethasone and within a couple of weeks of starting treatment the intractable pain from the fracture began to decrease and disappeared within a few weeks as the myeloma was decreasing in response to the drugs.
Don't be concerned whether the oncologist is going to be aggressive with your MIL's treatment, or not. He will recommend what he thinks is appropriate for her and will be monitoring her response and side effects closely. What likely is not on the table with her is a stem cell transplant because of her age and her co-morbidities. If she was younger that probably wouldn't be off the table, either. I, too, have high blood pressure and am overweight, no thyroid condition, and have been treated well. My oncologist always orders a thyroid test every time I have bloodwork done. I have responded well to my treatment and have minimal side effects from my treatment regimen.
Ask to receive the results of your MIL's tests sent to her after each appointment. Ask if they have a patient portal where test results are posted online when you sign up for access. I would bet that they have that where your MIL is being seen.
All of this to say, I wish your MIL a good start to her treatment and a good response.
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
5 posts
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