My mom was diagnosed recently with multiple myeloma. We aren't quite sure but it seems like stage 2 or 3.
Our family is going to her first meeting with the oncologist to hear the prognosis and treatment recommendations. Are there questions we should ask to help us understand this better?
As info she is elderly but until recently seemed to be in good shape. Thank you.
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Kev's Mom - Name: Kevin
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2 weeks ago
- Age at diagnosis: 80
Re: Preparing for first meeting with oncologist
Sorry to hear about your mom. May I ask how old is she and what city you are in?
You are likely to be caught a bit off guard with new information and choices during your debrief with the oncologist.
I would suggest:
1. Record the conversation if you can. The next best thing would be for the family members to take a copy of all your questions and take lots of notes.
2. Ask for copies of all the lab reports, the doctor’s diagnosis and CDs of the imaging results before you leave. Your mom is entitled to them and they will prove invaluable to have as you research your options afterwards. You want to do this each time you meet with your doc.
3. Ask the following:
a. Which of the CRAB criteria does she have?
b. What stage is she at?
c. What is her risk level and how did you make that determination?
d. What are her cytogenetic results and specifically which genetic mutations (if any) are of
concern?
e. What are the top 4-5 markers in the reports that gives the doctor concern and ask him to
highlight each of these in your copies of the lab reports so that you can easily find them
later (it takes a while to learn how to pick out the key data in these lab reports)
4. Is the doctor considering chemo and/or stem cell transplant? (transplant may not be an option due to age). Matt had a really good, recent post on the options at hand (read the whole thread): https://myelomabeacon.org/forum/i-survived-2-years-what-i-ve-learned-t348.html
5. Which specific drugs are you considering? Are there other combinations to consider? Velcade, Revlimid and Dex used together is a typical combination of drugs, but there are other combinations and her age and specifics may dictate the choice. If she has bone issues (lesions, fractures, etc) due to the disease, are you recommending any drugs such as Zometa to treat the bones?
6. Discuss the issues of peripheral neuropathy and other side effects associated with the drugs. Ask about how to minimize these side effects through different choices in drugs and/or doses and what his philosophy is on this.
7. Ask the doc if he/she is OK working with another specialist (it’s always good to get a second opinion).
8. Don’t get caught up in life expectancy issues and stats. All the stats that are out there are dated and folks are living much longer with better qualities of life than what you will likely find on the web.
If your doctor isn’t a myeloma specialist that sees a lot of myeloma patients on a daily basis, you likely want to find one before you embark on this journey. This is probably the single most important thing you can do. Folks on this site can help you locate these multiple myeloma specialists.
Best of luck to you.
You are likely to be caught a bit off guard with new information and choices during your debrief with the oncologist.
I would suggest:
1. Record the conversation if you can. The next best thing would be for the family members to take a copy of all your questions and take lots of notes.
2. Ask for copies of all the lab reports, the doctor’s diagnosis and CDs of the imaging results before you leave. Your mom is entitled to them and they will prove invaluable to have as you research your options afterwards. You want to do this each time you meet with your doc.
3. Ask the following:
a. Which of the CRAB criteria does she have?
b. What stage is she at?
c. What is her risk level and how did you make that determination?
d. What are her cytogenetic results and specifically which genetic mutations (if any) are of
concern?
e. What are the top 4-5 markers in the reports that gives the doctor concern and ask him to
highlight each of these in your copies of the lab reports so that you can easily find them
later (it takes a while to learn how to pick out the key data in these lab reports)
4. Is the doctor considering chemo and/or stem cell transplant? (transplant may not be an option due to age). Matt had a really good, recent post on the options at hand (read the whole thread): https://myelomabeacon.org/forum/i-survived-2-years-what-i-ve-learned-t348.html
5. Which specific drugs are you considering? Are there other combinations to consider? Velcade, Revlimid and Dex used together is a typical combination of drugs, but there are other combinations and her age and specifics may dictate the choice. If she has bone issues (lesions, fractures, etc) due to the disease, are you recommending any drugs such as Zometa to treat the bones?
6. Discuss the issues of peripheral neuropathy and other side effects associated with the drugs. Ask about how to minimize these side effects through different choices in drugs and/or doses and what his philosophy is on this.
7. Ask the doc if he/she is OK working with another specialist (it’s always good to get a second opinion).
8. Don’t get caught up in life expectancy issues and stats. All the stats that are out there are dated and folks are living much longer with better qualities of life than what you will likely find on the web.
If your doctor isn’t a myeloma specialist that sees a lot of myeloma patients on a daily basis, you likely want to find one before you embark on this journey. This is probably the single most important thing you can do. Folks on this site can help you locate these multiple myeloma specialists.
Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Preparing for first meeting with oncologist
Multibilly,
Thank you for your response. Mom 80+ years old. She lives in Salem, Oregon. From what we have been able to gather so far Chemo and SCT are not options because of mom's age (not sure about that, will know more today). We have started looking for a second opinion Dr. and have Oregon Health Sciences University in Portland, OR as a possible option. Mom has been resistant because of the drive, 90 miles round trip. She has fractured ribs originally misdiagnosed as rhuematoid arthritis and so travel is difficult for her. We obviously have a lot to learn. We will follow your suggestion and take notes and ask for copies of the reports and images. I want to hope that the life expectancy will be longer than what we have been hearing from people familiar with multiple myeloma so far. Thanks again for your response.
Thank you for your response. Mom 80+ years old. She lives in Salem, Oregon. From what we have been able to gather so far Chemo and SCT are not options because of mom's age (not sure about that, will know more today). We have started looking for a second opinion Dr. and have Oregon Health Sciences University in Portland, OR as a possible option. Mom has been resistant because of the drive, 90 miles round trip. She has fractured ribs originally misdiagnosed as rhuematoid arthritis and so travel is difficult for her. We obviously have a lot to learn. We will follow your suggestion and take notes and ask for copies of the reports and images. I want to hope that the life expectancy will be longer than what we have been hearing from people familiar with multiple myeloma so far. Thanks again for your response.
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Kev's Mom - Name: Kevin
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2 weeks ago
- Age at diagnosis: 80
Re: Preparing for first meeting with oncologist
See Dr. Libby's comments here re elderly treatment:
https://myelomabeacon.org/forum/mother-83-just-diagnosed-what-to-expect-t2674.html#p14456
https://myelomabeacon.org/forum/mother-83-just-diagnosed-what-to-expect-t2674.html#p14456
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Preparing for first meeting with oncologist
Kev,
Multibilliy’s response to your question is really good, especially for a first visit. There is a lot to know about myeloma if you have it and the doctor may not have time do a full “Myeloma 101” course to explain it all to you in terms you can understand in one visit or even a few visits. This would take some time to do and he/she may only have about a half hour to spend with you. Maybe there will be support staff who can spend more time answering questions and explaining things after the doctor visit, maybe not.
I see that other people’s experiences vary a great deal. It is likely to get all the information about myeloma you will want to know to be able to navigate your way through this you will need to use the information resources available on the internet such as the Myeloma Beacon, Multiple Myeloma Research Foundation, and the Mayo clinic and other major hospitals have web sites with myeloma educational information.
In my case right after my first visit they had me meet with a counselor/social worker who provided a great deal of information about support groups and financial assistance programs. She also inquired about my support network and wanted to meet with who would be my primary caregiver through all of this. I learned there were support groups not only just for those with myeloma but caregivers as well. In my medical records I read later I saw she was also evaluating my emotional and mental state, probably to evaluate if I was expressing suicidal thoughts.
Of course the burning question I think in everyone’s mind on their first visit to ask is what is my life expectancy, and I going to die or not? I never asked this question, at least not directly, and I do not believe oncologists can really answer this question on an individual basis but only for the statistics of the myeloma population at large. Until treatment starts and the oncologist has time to see how the patient is responding you really cannot do much to predict future outcomes, and even then I do not see how you can pin down a percentage number or how many months or years one would have to live. Only that you are responding well and the disease is subsiding, is stable and controlled, or is increasing and is not controlled.
For me this is just the way it is with having myeloma and I have gotten used to living with this and making the best use of the time I have left whatever that may be, which something we all live with really.
Multibilliy’s response to your question is really good, especially for a first visit. There is a lot to know about myeloma if you have it and the doctor may not have time do a full “Myeloma 101” course to explain it all to you in terms you can understand in one visit or even a few visits. This would take some time to do and he/she may only have about a half hour to spend with you. Maybe there will be support staff who can spend more time answering questions and explaining things after the doctor visit, maybe not.
I see that other people’s experiences vary a great deal. It is likely to get all the information about myeloma you will want to know to be able to navigate your way through this you will need to use the information resources available on the internet such as the Myeloma Beacon, Multiple Myeloma Research Foundation, and the Mayo clinic and other major hospitals have web sites with myeloma educational information.
In my case right after my first visit they had me meet with a counselor/social worker who provided a great deal of information about support groups and financial assistance programs. She also inquired about my support network and wanted to meet with who would be my primary caregiver through all of this. I learned there were support groups not only just for those with myeloma but caregivers as well. In my medical records I read later I saw she was also evaluating my emotional and mental state, probably to evaluate if I was expressing suicidal thoughts.
Of course the burning question I think in everyone’s mind on their first visit to ask is what is my life expectancy, and I going to die or not? I never asked this question, at least not directly, and I do not believe oncologists can really answer this question on an individual basis but only for the statistics of the myeloma population at large. Until treatment starts and the oncologist has time to see how the patient is responding you really cannot do much to predict future outcomes, and even then I do not see how you can pin down a percentage number or how many months or years one would have to live. Only that you are responding well and the disease is subsiding, is stable and controlled, or is increasing and is not controlled.
For me this is just the way it is with having myeloma and I have gotten used to living with this and making the best use of the time I have left whatever that may be, which something we all live with really.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Preparing for first meeting with oncologist
Thank you for your responses. We are grateful for the knowledge and experiences you have/are sharing. Now I'm off to see mom and do something normal, like grocery shopping.
Thanks again
Thanks again
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Kev's Mom - Name: Kevin
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2 weeks ago
- Age at diagnosis: 80
Re: Preparing for first meeting with oncologist
Kev,
I am so sorry to hear about your mom, very scary diagnosis. I have family in Salem and am familiar with the area. It would be good to see a myeloma specialist in Portland. They will most likely coordinate care with a hematologist in Salem. You mom would be able to receive treatment in Salem while the Portland MD runs the show.
Check out the American Cancer Society web site. They offer lots of assistance, free rides, housing, wigs, and other things.
I am sure you are very overwhelmed. Take time for yourself. Ask lots of questions and demand answers. Most of all, seek out support. The American Cancer Society has lot to offer.
Best wishes!
Julie
I am so sorry to hear about your mom, very scary diagnosis. I have family in Salem and am familiar with the area. It would be good to see a myeloma specialist in Portland. They will most likely coordinate care with a hematologist in Salem. You mom would be able to receive treatment in Salem while the Portland MD runs the show.
Check out the American Cancer Society web site. They offer lots of assistance, free rides, housing, wigs, and other things.
I am sure you are very overwhelmed. Take time for yourself. Ask lots of questions and demand answers. Most of all, seek out support. The American Cancer Society has lot to offer.
Best wishes!
Julie
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Julessix
Re: Preparing for first meeting with oncologist
Thank you all for your responses. It is clear to me this group has knowledge, experience and is very supportive.
This has been a bit of a rollercoaster for the family. Mom was first diagnosed with osteoarthritis (not RA as I previously wrote). Then the diagnosis was changed to multiple myeloma. We met with the oncologist yesterday and she said not myeloma but breast cancer that has metastasized. The good news (right now) is the oncologist believes she can successfully treat this and slow if not stop the cancer.
Mom still has to go through a battery of tests to confirm this current diagnosis. I don't know if I should be relieved because of this diagnosis or be concerned it will change again. I will say the oncologist was very smart, very competent, and was sensitive to mom's concerns.
This has been a bit of a rollercoaster for the family. Mom was first diagnosed with osteoarthritis (not RA as I previously wrote). Then the diagnosis was changed to multiple myeloma. We met with the oncologist yesterday and she said not myeloma but breast cancer that has metastasized. The good news (right now) is the oncologist believes she can successfully treat this and slow if not stop the cancer.
Mom still has to go through a battery of tests to confirm this current diagnosis. I don't know if I should be relieved because of this diagnosis or be concerned it will change again. I will say the oncologist was very smart, very competent, and was sensitive to mom's concerns.
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Kev's Mom - Name: Kevin
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2 weeks ago
- Age at diagnosis: 80
Re: Preparing for first meeting with oncologist
In my experience actually being in the room with the oncologist or specialist is not that important. It is the test results that are important. If she doesn't want to drive to Salem, I don;'t see that she has to as long as you go and have all of her test results and other medical records. My procedure is to always present the doctor with an email or FAX with my questions before I get there. That way the discussions and answers you really need do not get forgotten. As described before, don't focus on life expectancy but on what are the best options for treatment and who else should you get an opinion from. Most local oncologists see every kind of cancer types and not too many multiple myeloma cases. In my situation I have a local oncologist who prescribes the treatments at a local hospital and follows my progress based on the recommended treatment plan provided by the myeloma specialist in another city. The consensus of people on this forum is that this is the best way to proceed.
Best of luck to you all.
Paul Jorgensen
Best of luck to you all.
Paul Jorgensen
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Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68
Re: Preparing for first meeting with oncologist
My doctor checks me at every visit for other cancers that can be detected without xray. He checks my glands and liver for suspicious growth.
I don't think I would be comfortable with nothing but remote care.
I don't think I would be comfortable with nothing but remote care.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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