My husband was diagnosed last month and during that doctor visit I think we were in shock. Consequently, we learned very few details about his condition. He has had four Velcade injections and received two units of blood.
We meet with the doctor again this week and I would like to know what questions I should ask, and what is appropriate information for us to have.
Reading a few of the posts I am amazed at how well informed people are. We are feeling pretty clueless. I feel confident in the doctor and nurses, and the cancer center is affiliated with a major university.
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Joannem - Name: Jo Anne
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: February 2016
- Age at diagnosis: 75
Re: New to multiple myeloma - what questions to ask doctor?
Hi,
Your request reminds me of myself one and a half years ago. I was so totally confused and never thought I would understand any of these medical terms. But after much research, I have tackled enough to follow along with the doctor's explanation, and if I do not understand, I ask!
There are many people here who are so qualified to answer any questions you have. Hang in there. In my prayers.
Your request reminds me of myself one and a half years ago. I was so totally confused and never thought I would understand any of these medical terms. But after much research, I have tackled enough to follow along with the doctor's explanation, and if I do not understand, I ask!
There are many people here who are so qualified to answer any questions you have. Hang in there. In my prayers.
Re: New to multiple myeloma - what questions to ask doctor?
I was diagnosed in November last year, and had never heard of multiple myeloma, so my learning curve was (and is) steep! Like you, when I read posts here, I was (and am) overwhelmed by this foreign language.
I would ask what percentage of your doctor's patients have myeloma. Even though the cancer center is affiliated with a major university, s/he still might not be a myeloma specialist. It doesn't mean you should switch physicians, but you could use that information to determine if you want to get a second opinion from someone who sees only, or nearly only, myeloma patients. I have two oncologists: my specialist, and my local one who works together with my specialist on treatment.
I would want copies of all tests, all the way back to when your husband was diagnosed. The tests not only are diagnostic, you'll want them as baseline comparative numbers.
One of the unfortunate things in my case, is that my bone marrow biopsy came back normal and so there were no cells from which to get FISH results (cytogenetic information). Knowing what I know now, I would have asked if we could try to get myeloma cells from my forearm where I have lesions, or perhaps from the site of my plasmacytoma. It's too late now because I've responded so well to chemo (numbers are in range), but I regret not having this information.
Welcome to the forum, though sorry for the reason you came to join us.
I would ask what percentage of your doctor's patients have myeloma. Even though the cancer center is affiliated with a major university, s/he still might not be a myeloma specialist. It doesn't mean you should switch physicians, but you could use that information to determine if you want to get a second opinion from someone who sees only, or nearly only, myeloma patients. I have two oncologists: my specialist, and my local one who works together with my specialist on treatment.
I would want copies of all tests, all the way back to when your husband was diagnosed. The tests not only are diagnostic, you'll want them as baseline comparative numbers.
One of the unfortunate things in my case, is that my bone marrow biopsy came back normal and so there were no cells from which to get FISH results (cytogenetic information). Knowing what I know now, I would have asked if we could try to get myeloma cells from my forearm where I have lesions, or perhaps from the site of my plasmacytoma. It's too late now because I've responded so well to chemo (numbers are in range), but I regret not having this information.
Welcome to the forum, though sorry for the reason you came to join us.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: New to multiple myeloma - what questions to ask doctor?
Hi JoanneM,
I agree with Moonscape. Your first want to be sure you are working with a multiple myeloma specialist and you really want to have copies of all your earlier lab tests and the doctor's diagnosis writeup. Don't be bashful about asking for copies.
Given that treatment is already under way and you may not know the basics of your diagnosis, I would be asking (suggest you write these down and take lots of notes when you see the doc next):
1. How have I responded so far (specifically, what have my M-spike and involved free light chain and free light chain ratio done since starting treatment)?
2. How has my red blood cell count and hemoglobin responded to treatment (you mentioned that two units of blood were required, so I am guessing that the patient was anemic)?
3. Did my radiological imaging (xray, MRI, etc) show any multiple myeloma lesions that I should be concerned about? If so, when do you think I will get re-imaged to re-evaluate these lesions?
4. Do I have any renal (kidney) issues? If so, how have they responded to treatment (look at creatinine, etc)?
5. Was I hypercalcemic (high calcium levels)? If so, how has my calcium level responded to treatment?
6. How long do you think I will be on this current course of treatment?
7. What are the plans after this treatment phase ends? Do you think you will be recommending maintenance therapy or a transplant? If I am to do maintenance, which drug(s) are you suggesting at that time and for how long?
8. Based on the bone marrow biopsy, do I have any worrisome cytogenetics (genetic abnormalities) that I should be concerned about? Specifically, which genetic results are concerning?
9. What was my original bone marrow plasma cell percentage as measured on my bone marrow biopsy test?
10. What kind of multiple myeloma do I have (IgG lambda, IgA kappa, etc)?
I agree with Moonscape. Your first want to be sure you are working with a multiple myeloma specialist and you really want to have copies of all your earlier lab tests and the doctor's diagnosis writeup. Don't be bashful about asking for copies.
Given that treatment is already under way and you may not know the basics of your diagnosis, I would be asking (suggest you write these down and take lots of notes when you see the doc next):
1. How have I responded so far (specifically, what have my M-spike and involved free light chain and free light chain ratio done since starting treatment)?
2. How has my red blood cell count and hemoglobin responded to treatment (you mentioned that two units of blood were required, so I am guessing that the patient was anemic)?
3. Did my radiological imaging (xray, MRI, etc) show any multiple myeloma lesions that I should be concerned about? If so, when do you think I will get re-imaged to re-evaluate these lesions?
4. Do I have any renal (kidney) issues? If so, how have they responded to treatment (look at creatinine, etc)?
5. Was I hypercalcemic (high calcium levels)? If so, how has my calcium level responded to treatment?
6. How long do you think I will be on this current course of treatment?
7. What are the plans after this treatment phase ends? Do you think you will be recommending maintenance therapy or a transplant? If I am to do maintenance, which drug(s) are you suggesting at that time and for how long?
8. Based on the bone marrow biopsy, do I have any worrisome cytogenetics (genetic abnormalities) that I should be concerned about? Specifically, which genetic results are concerning?
9. What was my original bone marrow plasma cell percentage as measured on my bone marrow biopsy test?
10. What kind of multiple myeloma do I have (IgG lambda, IgA kappa, etc)?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New to multiple myeloma - what questions to ask doctor?
Jo Anne,
I agree with Multibilly, specifically point 8. I would want to understand how my treatment plan was customized to address my chromosomal abnormalities.
Good Luck
I agree with Multibilly, specifically point 8. I would want to understand how my treatment plan was customized to address my chromosomal abnormalities.
Good 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: New to multiple myeloma - what questions to ask doctor?
Thanks all for the kind responses.
I do have some lab work and I found the term IgA type kappa and a mention of M-spike. His hemoglobin was 7.8 before transfusions and two weeks of chemo. This morning it was 9.4.
I am going to use the list of questions provided, thanks so very much.
I do have some lab work and I found the term IgA type kappa and a mention of M-spike. His hemoglobin was 7.8 before transfusions and two weeks of chemo. This morning it was 9.4.
I am going to use the list of questions provided, thanks so very much.
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Joannem - Name: Jo Anne
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: February 2016
- Age at diagnosis: 75
Re: New to multiple myeloma - what questions to ask doctor?
Hi Jo Anne,
Let us know how things turn out.
7.8 g/dL was a really low hemoglobin level. I bet your husband is feeling a bit more energetic in recent days.
Let us know how things turn out.
7.8 g/dL was a really low hemoglobin level. I bet your husband is feeling a bit more energetic in recent days.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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