My father was just dx with multiple myeloma. My mother has been in remission from multiple myeloma for 6 years. What questions should we ask the dr. when he goes to the onocologist next week. Mom went for treatment at UMAS in AR and had a stem cell transplant. My dad started losing weight and has dropped about 50 lbs in two months. They did a bone scan and found lesions on his back (had been complaining for several months), shoulder, femur and a rib. They did a bone marrow biopsy last Friday and we got the results yesterday that he has multiple myeloma. What are the odds of them both getting multiple myeloma?
Mom and Dad did most of her care alone at UAMS and now both my brother and I are here to help them. We go to the dr. next week and wondered what questions are beneficial to ask. I know that he is anemic, has high calcium and potassium levels (found he had an overactive thyroid and have him on medicne for that now) and is retaining fluids. He does have congestive heart failure but his lungs are clear. I remember mom having the swelling and her kidneys were failing. Any help would be greatly appreciated as I know the treatments must be much better. She was treated with thalidomide and now has nerophathy so bad that she can't fell her feet most of the time. I'm praying that we will not have to go through the same as she did.
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Re: What questions should we ask?
I feel so bad for your family to have to go through this again with your dad. The fact that your dad has heart issues will most probably mean he is not a candidate for a transplant. We had a gentleman in our support group that couldn’t have a transplant because of his heart issues, and he couldn’t use some of the drugs available for the treatment of multiple myeloma.
I would be asking the doctor:
Once you know what numbers are important to track for your dad, set up a spreadsheet… I know the IMF has the multiple myeloma Manager, but I had set my own up a long time ago, before that came around. I attached a copy of my spreadsheet.
Of course I would want to know what the plan of attack is going to be and what side affects to expect from some of the drugs. I know they list the side affects on the packages, but a lot of times there are some other side affects that the doctor might know of from his experience with other patients, and the doctor might also have some helpful advice on how to get through some of these nasty affects. I know in my support group, we share helpful tips on some of these nasty side affects.
If he goes on dex, your family should know that at times dad won’t be the same person. He will be irritable (nasty), quiet, sad. Keep repeating to yourselves, “It is just the drugs, it’s not my dad being miserable to us.” I personally had the hardest time with the dex. Yes, you read on the bottle what the drugs can do, but you don’t really know what to expect until you take it. I don’t like not being in control like that. It’s hard to explain unless you have to take them. I can remember when I was taking the dex and I would come home from work and I would be a wreck, crying and shaking. My son (who was in college) would take me by the hand and sit down with me on the couch and say “Now mom, you are coming off the dex, and you are crashing. You will get through this. Mom, I love you!”
I’m blessed to have had this. My husband isn’t so good with this type of support. So, you might have to help your dad out when he is coming off the dex. I haven’t met a multiple myeloma survivor that hasn’t had issues with steroids.
I hope some of this will help in some way.
I would be asking the doctor:
- What stage he is your dad, which would include % myeloma cells in his marrow…
- What kind does he have…IGG, IGA…etc…does he have the chromosome 13 deletion? Light chain…etc…
Once you know what numbers are important to track for your dad, set up a spreadsheet… I know the IMF has the multiple myeloma Manager, but I had set my own up a long time ago, before that came around. I attached a copy of my spreadsheet.
Of course I would want to know what the plan of attack is going to be and what side affects to expect from some of the drugs. I know they list the side affects on the packages, but a lot of times there are some other side affects that the doctor might know of from his experience with other patients, and the doctor might also have some helpful advice on how to get through some of these nasty affects. I know in my support group, we share helpful tips on some of these nasty side affects.
If he goes on dex, your family should know that at times dad won’t be the same person. He will be irritable (nasty), quiet, sad. Keep repeating to yourselves, “It is just the drugs, it’s not my dad being miserable to us.” I personally had the hardest time with the dex. Yes, you read on the bottle what the drugs can do, but you don’t really know what to expect until you take it. I don’t like not being in control like that. It’s hard to explain unless you have to take them. I can remember when I was taking the dex and I would come home from work and I would be a wreck, crying and shaking. My son (who was in college) would take me by the hand and sit down with me on the couch and say “Now mom, you are coming off the dex, and you are crashing. You will get through this. Mom, I love you!”
I’m blessed to have had this. My husband isn’t so good with this type of support. So, you might have to help your dad out when he is coming off the dex. I haven’t met a multiple myeloma survivor that hasn’t had issues with steroids.
I hope some of this will help in some way.
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kaygcromie - Name: Kay Cromie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11/03/03
- Age at diagnosis: 49
Re: What questions should we ask?
Hi Sherry-
The odds of this happening are very slim. So sorry! Hey, things are much better and easier and more effective than they were when your mom was diagnosed. I would ask about treatment options. Revlimid or Velcade? Some other combination? It may not be so bad if he isn't a candidate for transplant. Just try and remember his path may, in fact, be easier than your mother's was. Good luck! Pat
The odds of this happening are very slim. So sorry! Hey, things are much better and easier and more effective than they were when your mom was diagnosed. I would ask about treatment options. Revlimid or Velcade? Some other combination? It may not be so bad if he isn't a candidate for transplant. Just try and remember his path may, in fact, be easier than your mother's was. Good luck! Pat
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: What questions should we ask?
I would like to echo Pat's comment, the treatment options available to all of us Myeloma Surivors is unbelievable. Research has come so far in the past 10 years, I was diagnosed 7 years ago and the front line treatment I received they stopped using shortly after my Transplant in 2004. There are so many Clinical Trials going on all the time. I know many survivors that haven't had a transplant and are doing very well. We have a 18 year survivor in my Support Group who is 76 years old and he has never had a transplant.
I will keep your family in my prayers.
I will keep your family in my prayers.
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Kay
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