Hi Everyone,
My father was diagnosed with multiple myeloma in 2007 at 59 years. His has been on Revlimid for some time but treatments are no longer working. My mother's mother (my Grandmother) died from multiple myeloma back in 1993. I am wondering how much more at risk I am for being diagnosed with multiple myeloma since it is on both sides of my family and is there any kind of screening available?
Thanks,
Lisa
Forums
10 posts
• Page 1 of 1
Re: Dad and Grandmother Diagosted - What are My Chances?
Hi Lisa,
As far as I know multiple myeloma has not been idenified as being hereditary by the experts. Saying that I've read several articles and post that believe that multiple myeloma can be hereditary.
My mother had multiple myeloma and passed away 3 yrs ago. I was dx'ed app. a year and a half ago and have had a stem cell transplant.
I have encouraged my children when having blood work done to have the SPEP test included also.
It shows the m-protein spike and hopefully the lack of. Hope this helps.
As far as I know multiple myeloma has not been idenified as being hereditary by the experts. Saying that I've read several articles and post that believe that multiple myeloma can be hereditary.
My mother had multiple myeloma and passed away 3 yrs ago. I was dx'ed app. a year and a half ago and have had a stem cell transplant.
I have encouraged my children when having blood work done to have the SPEP test included also.
It shows the m-protein spike and hopefully the lack of. Hope this helps.
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Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
Re: Dad and Grandmother Diagnosed - What are My Chances?
Yes this helps - thank you for your reply and for your advice. I will definitely request the SPEP test the next time I have blood work done and will suggest it to my sibblings also.
All of my best to you and your family,
Lisa
All of my best to you and your family,
Lisa
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Anonymous
Re: Dad and Grandmother Diagosted - What are My Chances?
Hi Lisa, ask for more than the SPEP. It should include immunofixation. My SPEP's are always perfectly normal....but guess what? I have myeloma--- called light chain only...about 20% of MMers, not an insignificant number of us. Good luck. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 8/11
- Age at diagnosis: 49
Re: Dad and Grandmother Diagosted - What are My Chances?
Dear Lisa,
The risk of myeloma precursor disease (MGUS) and myeloma is higher in relatives of those affected with myeloma. I think your father's history has more of an impact than that of your maternal grandmother in this regard. However, the absolute risk of any random person getting myeloma is quite low. As such, even if your risk of getting myeloma is 2 to 3 times higher than someone who does not have a family history of myeloma, your actual risk of getting myeloma is still quite low. If I told you that your chances of winning the lottery were two to three times higher than normal, odds are that you are still not going to win the lottery.
I think this is an important issue to discuss with your physician or an oncologist, so that you can weigh the advantages and disadvantages of screening carefully. Since most family members of those affected by myeloma do not go on to develop myeloma themselves, screening is not routinely done.
I hope this helps. Let us know how things go!
Pete V.
The risk of myeloma precursor disease (MGUS) and myeloma is higher in relatives of those affected with myeloma. I think your father's history has more of an impact than that of your maternal grandmother in this regard. However, the absolute risk of any random person getting myeloma is quite low. As such, even if your risk of getting myeloma is 2 to 3 times higher than someone who does not have a family history of myeloma, your actual risk of getting myeloma is still quite low. If I told you that your chances of winning the lottery were two to three times higher than normal, odds are that you are still not going to win the lottery.
I think this is an important issue to discuss with your physician or an oncologist, so that you can weigh the advantages and disadvantages of screening carefully. Since most family members of those affected by myeloma do not go on to develop myeloma themselves, screening is not routinely done.
I hope this helps. Let us know how things go!
Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill
University of North Carolina at Chapel Hill
Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgable physician.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Dad and Grandmother Diagosted - What are My Chances?
Hi Lisa! My father was diagnosed with multiple myeloma early 2009 (age 59). In december 2009 i suffered a pathological femur fraktur. It turned out to be a solitary plasmacytoma. I was 39. In the spring 2011 I had another solitary recurring Plasmacytoma. Vertebra L1. I consider my disease to be linked to my father's disease. I also believe that I've had bad luck at the lotteries! I've been treated succesfully two times with surgery and radiation. I feel great, no m-spike or flc. Almost full funktion. I can run, play tennis and golf. Try not to worry to much! I have four unaffected siblings! Best regards from Mattias
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Mattias - Name: Mattias
- When were you/they diagnosed?: Solitary plasmacytoma 2009
- Age at diagnosis: 39
Re: Dad and Grandmother Diagosted - What are My Chances?
Sorry about the spelning above. It's supposed to be "femur fracture"
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Mattias - Name: Mattias
- When were you/they diagnosed?: Solitary plasmacytoma 2009
- Age at diagnosis: 39
Re: Dad and Grandmother Diagosted - What are My Chances?
Mattias wrote:
> Sorry about the spelning above. It's supposed to be "femur
> fracture"
Well swedish T9 function can be a bit odd. I mean spelling and function!
> Sorry about the spelning above. It's supposed to be "femur
> fracture"
Well swedish T9 function can be a bit odd. I mean spelling and function!
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Mattias - Name: Mattias
- When were you/they diagnosed?: Solitary plasmacytoma 2009
- Age at diagnosis: 39
Re: Dad and Grandmother Diagosted - What are My Chances?
Lisa,
My father was diagnosed in 2001 at age 46 and died at age 47 after a transplant. I was 20 years old when he passed away and haven't thought much of the genetics involved until recently.
Having just turned 31 and paying more attention to my health, I too am wondering what tests to ask for, what to look out for and how to advocate for myself. Statistics may show this disease strikes older people, but the personal stories I've read say it can occur at all ages--another forum post was a 13 year old boy-- and the fact that there isn't a known link for those with 1st generation relatives doesn't make me feel any better. We don't know enough about this disease to say relatives are at low risk.
Many primary care docs know little about multiple myeloma other than it's rare, it's cancer...
So as an advocate for my own health, I'm wondering what to look out for. What to ask for in terms of tests, And what to be aware of in terms of potential symptoms or red-flags as I go on living.
I'm generally in good health, but having a colonoscopy in a few weeks--at age 31. This has gotten me thinking more about my father's multiple myeloma and me. Could I have it...get it...
I've been searching the internet recently to find out what tests family members of multiple myeloma should have and haven't found much. Any suggestions are most appreciated.
And to those that are battling multiple myeloma, thank you for sharing your stories and showing amazing courage as you battle this disease.
-Daryl
My father was diagnosed in 2001 at age 46 and died at age 47 after a transplant. I was 20 years old when he passed away and haven't thought much of the genetics involved until recently.
Having just turned 31 and paying more attention to my health, I too am wondering what tests to ask for, what to look out for and how to advocate for myself. Statistics may show this disease strikes older people, but the personal stories I've read say it can occur at all ages--another forum post was a 13 year old boy-- and the fact that there isn't a known link for those with 1st generation relatives doesn't make me feel any better. We don't know enough about this disease to say relatives are at low risk.
Many primary care docs know little about multiple myeloma other than it's rare, it's cancer...
So as an advocate for my own health, I'm wondering what to look out for. What to ask for in terms of tests, And what to be aware of in terms of potential symptoms or red-flags as I go on living.
I'm generally in good health, but having a colonoscopy in a few weeks--at age 31. This has gotten me thinking more about my father's multiple myeloma and me. Could I have it...get it...
I've been searching the internet recently to find out what tests family members of multiple myeloma should have and haven't found much. Any suggestions are most appreciated.
And to those that are battling multiple myeloma, thank you for sharing your stories and showing amazing courage as you battle this disease.
-Daryl
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Daryl
Re: Dad and Grandmother Diagosted - What are My Chances?
Hi Daryl,
My suggestion would be to let your doctor know about your concerns so that he can monitor you for anemia or kidney problems. I don't know that he has to run any special tests to do this, just part of your normal yearly physical. Also, watch for any pains that just don't go away. EJ thought he had a pulled muscle under his arm from playing volleyball, but it turned out to be a plasmacytoma (spelling?) from the myeloma. Others on this site often mention unrelenting pains prior to receiving their diagnosis.
And ALWAYS get copies of any tests your doctor runs so you can monitor too.
Lyn
My suggestion would be to let your doctor know about your concerns so that he can monitor you for anemia or kidney problems. I don't know that he has to run any special tests to do this, just part of your normal yearly physical. Also, watch for any pains that just don't go away. EJ thought he had a pulled muscle under his arm from playing volleyball, but it turned out to be a plasmacytoma (spelling?) from the myeloma. Others on this site often mention unrelenting pains prior to receiving their diagnosis.
And ALWAYS get copies of any tests your doctor runs so you can monitor too.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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