Mom101,
Regarding what questions and requests to make at the hospital visit, you definitely want to walk away from your appointment with copies of all your lab reports, including any radiological reports. You also specifically want to know the following lab values, so be sure to ask your doc what these values are (including the units of measure). These are the key markers you will want to personally understand and track over time:
- M-spike (aka paraprotein, M-protein, abnormal protein band, etc)
- Serum lambda and kappa free light chain values, including the kappa/lambda ratio
- Immunoglobulin levels (IgG, IgA, IgM)
- Hemoglobin and red blood cell levels, creatinine and calcium levels.
You want to also know what kind of multiple myeloma “isotype” (IgG-kappa, IgG-lambda, etc) he has. This shows up on what is called an immunofixation test.
If a bone marrow biopsy hasn’t been performed yet, then you will want to get one. From the biopsy results, you will want to know his bone marrow plasma cell percentage and what, if any, adverse cytogenetics (genetic mutations) he may have. This will help determine the extent of the disease as well as help guide any treatment.
Assuming he has symptomatic multiple myeloma based on the presence of lesions in the spine, you would want to know what drug treatment combination (there are many) the doctor is considering for “induction treatment” and whether the doctor is suggesting the use of any bisphosphonates at this time (these questions might occur later if the doctor defers to a multiple myeloma specialist for the treatment plan). You would also want to know if the doctor is recommending a bone marrow transplant….and if so, whether that would be an “auto” or “allo” transplant.
Lastly, I woudn't get caught up in discussing and researching survival statistics. Every multiple myeloma patient is very unique and many of the statistics out there don't reflect the impact of the current state-of-the-art treatments that are available to patients these days.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Husband just diagnosed today
Welcome to the forum, Mom101. I'm sorry you have to be here, but as you've already seen, it's an amazing, supportive, and incredibly informed group of people.
As for the hospital your husband will be going to, he will in good hands there. It has a number of well respected myeloma specialists.
I see that Multibilly already has provided great feedback on what to ask at the first appointment. I'll just add another suggestion he has made in the past which I think is great. If it's okay with your husband's doctor, record the appointment on your phone or with something else. The appointment will go fast, and so much information will be new and foreign. So it will be helpful to go back and listen to what was said.
I just wanted to add that it's great that you're already learning and getting involved in a community like this now, rather than waiting for a long time or until the last minute. Getting involved now will give you a chance to start learning a little at a time, and all that knowledge you gain over time will make a big difference on many occasions during your husband's battle with the disease.
Good luck, and keep us posted on how you and your husband are doing.
As for the hospital your husband will be going to, he will in good hands there. It has a number of well respected myeloma specialists.
I see that Multibilly already has provided great feedback on what to ask at the first appointment. I'll just add another suggestion he has made in the past which I think is great. If it's okay with your husband's doctor, record the appointment on your phone or with something else. The appointment will go fast, and so much information will be new and foreign. So it will be helpful to go back and listen to what was said.
I just wanted to add that it's great that you're already learning and getting involved in a community like this now, rather than waiting for a long time or until the last minute. Getting involved now will give you a chance to start learning a little at a time, and all that knowledge you gain over time will make a big difference on many occasions during your husband's battle with the disease.
Good luck, and keep us posted on how you and your husband are doing.
Re: Husband just diagnosed today
As it pertains to "how to comfort him?" here's a couple of do's and dont's. Just for your information, I do not have multiple myeloma (I have MGUS), but within the last year I had a colon tumor that could've been a real bad situation if not gotten sooner. So I had my own "I don't want to die" moments. Anyhow:
DO:
DO:
- Listen to his concerns when he clearly wants to talk.
- Be available to handle many household mundane tasks if he just doesn't feel up to it, but ...
- DO encourage him to [insert his favorite activities here] and also to continue his chores etc
- Be a shoulder to cry on
- Write down what you are being told at the hospital
- Tell him everything will be fine
- Tell your child (yet). Too young. right now, daddy is just not feeling good.
- Expect to get through this alone. Family and friends are great resources to help with meals, childcare, etc
- Resist the idea of medication to relieve anxiety and/or depression.
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Entropy - Who do you know with myeloma?: Me (MGUS)
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 48
Re: Husband just diagnosed today
I can't thank you all enough for your support and answers. Unfortunately, we were summoned to the hospital today to receive the news that it has spread to the liver, lungs, and bone, which is not compatible with myeloma. We were told it is stage four and being admitted immediately in hopes it is a curable cancer.
Thank you all again and I wish you all good health and great life!
Thank you all again and I wish you all good health and great life!
Re: Husband just diagnosed today
Hello Mom101,
I am so sorry to hear about this finding or widespread cancer in your husband's system, and hope that it can be treated well too. Sending best wishes your way for that.
I am so sorry to hear about this finding or widespread cancer in your husband's system, and hope that it can be treated well too. Sending best wishes your way for that.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband just diagnosed today
Mom101,
I agree with all who have posted before me. They have come such a long way with myeloma treatment. I was in you shoes a little over a year ago and so afraid I would not have my husband for long. Everyone here is so nice and supportive. You have found a good place.
After induction treatment and a stem cell transplant, my husband has no evidence of disease. He had severely compromised kidney function and lesions on his back and ribs at diagnosis. His kidneys have returned to normal and his lesions are no longer painful. Even stage 3 multiple myeloma is not like stage 3 other cancers. People with later stage myeloma go on to do very well.
Take a breath, but I do agree knowledge is power, so ask all the questions you need to to find out what you need to know to make informed decisions concerning his treatment. I got copies of all my husband's test results and poured over them and if I did not understand a phrase or word, I found out what it meant and how it applied to my husband's case and treatment plan.
Good luck to you both.
I agree with all who have posted before me. They have come such a long way with myeloma treatment. I was in you shoes a little over a year ago and so afraid I would not have my husband for long. Everyone here is so nice and supportive. You have found a good place.
After induction treatment and a stem cell transplant, my husband has no evidence of disease. He had severely compromised kidney function and lesions on his back and ribs at diagnosis. His kidneys have returned to normal and his lesions are no longer painful. Even stage 3 multiple myeloma is not like stage 3 other cancers. People with later stage myeloma go on to do very well.
Take a breath, but I do agree knowledge is power, so ask all the questions you need to to find out what you need to know to make informed decisions concerning his treatment. I got copies of all my husband's test results and poured over them and if I did not understand a phrase or word, I found out what it meant and how it applied to my husband's case and treatment plan.
Good luck to you both.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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