I am going with my parents as an extra set of ears when we meet with my dad's myeloma specialist at Dana Farber this coming Tuesday (well, Wednesday, but the appointment is at 6:15 am so more like Tuesday!). My dad was diagnosed only two weeks ago, but all his test results are in, so we will be receiving a lot of information about treatment plans and whatnot.
I would like to know what questions should I ask.
For example, ones I've thought of so far would be about dietary restrictions and thoughts on the diabetic diet (thanks to post by antelope1225 https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393.html), affects of allergens on the immune system (would an air purifier help him stay healthy?), that's about it.
What else should I be asking?
Thank you for any and all help!
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
Re: New to myeloma - Questions to ask specialist?
Hi Ballerinabrit,
Is your Dad a diabetic? I wonder since you asked about a diabetic diet. If so, he will have to be careful with any dexamethasone treatments. Apparently, one's blood sugar can really spike upwards with dex for a diabetic. Just another side effect to be aware of, and to take preventive actions against. I am sure of course that you would be counselled on this at the cancer center.
Good luck. It's really great for a patient to have caregivers attend appointments with them to catch all of the information possible.
Is your Dad a diabetic? I wonder since you asked about a diabetic diet. If so, he will have to be careful with any dexamethasone treatments. Apparently, one's blood sugar can really spike upwards with dex for a diabetic. Just another side effect to be aware of, and to take preventive actions against. I am sure of course that you would be counselled on this at the cancer center.
Good luck. It's really great for a patient to have caregivers attend appointments with them to catch all of the information possible.
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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: New to myeloma - Questions to ask specialist?
Ballerinabrit,
Dana Farber is a great facility with many very well respected multiple myeloma specialists. You picked a great facility.
My two cents on these kinds of meetings, especially first appointments with a new doc.
1. Write down all your questions beforehand and check them off as you go. It's easy to get sidetracked when you get bombarded with new info.
2. Even with a second set of ears present, it's great if you can record the appointment on a smartphone or other device.
3. I would also ask about things like:
a. Why this particular treatment over another treatment plan?
b. What would be the likely next step if this treatment fails? Do you think any clinical trial makes sense and why?
c. What is your view on transplant versus no-transplant or delayed transplant in this situation?
d. Can you go over the bone marrow biopsy results and explain the key findings/concerns in the report (i.e. which specific genetic factors are of concern)? What risk level would you put me at based on this and is this influencing your treatment plan choice? (note that's it's almost impossible to go back and figure out what these bone marrow biopsy reports mean on your own).
g. Ask for paper copies of all the lab reports so you have them when you leave the appointment.
Dana Farber is a great facility with many very well respected multiple myeloma specialists. You picked a great facility.
My two cents on these kinds of meetings, especially first appointments with a new doc.
1. Write down all your questions beforehand and check them off as you go. It's easy to get sidetracked when you get bombarded with new info.
2. Even with a second set of ears present, it's great if you can record the appointment on a smartphone or other device.
3. I would also ask about things like:
a. Why this particular treatment over another treatment plan?
b. What would be the likely next step if this treatment fails? Do you think any clinical trial makes sense and why?
c. What is your view on transplant versus no-transplant or delayed transplant in this situation?
d. Can you go over the bone marrow biopsy results and explain the key findings/concerns in the report (i.e. which specific genetic factors are of concern)? What risk level would you put me at based on this and is this influencing your treatment plan choice? (note that's it's almost impossible to go back and figure out what these bone marrow biopsy reports mean on your own).
g. Ask for paper copies of all the lab reports so you have them when you leave the appointment.
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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 myeloma - Questions to ask specialist?
Hi Nancy - My dad is actually in perfect health other than the myeloma. I mentioned the diabetic diet because a patient on this forum noted positive effects from following this diet. I know sugar is not good for the immune system, and I assume other changes to my dad's diet will be needed as well.
Multibilly - Thank you for your advice. I do intend on recording our appointment. That's an excellent idea to get copies of his results for my parents to keep at home. Thank you for your suggestions of other questions to ask!
Multibilly - Thank you for your advice. I do intend on recording our appointment. That's an excellent idea to get copies of his results for my parents to keep at home. Thank you for your suggestions of other questions to ask!
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
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