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
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Re: Dad and grandmother diagnosed - what are my chances?
Hi Lisa,
As far as I know multiple myeloma has not been identified as being hereditary by the experts. Saying that, I've read several articles and posts that believe that multiple myeloma can be hereditary.
My mother had multiple myeloma and passed away 3 yrs ago. I was diagnosed approximately 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 identified as being hereditary by the experts. Saying that, I've read several articles and posts that believe that multiple myeloma can be hereditary.
My mother had multiple myeloma and passed away 3 yrs ago. I was diagnosed approximately 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 diagnosed - 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?: August 10, 2011
- Age at diagnosis: 49
Re: Dad and grandmother diagnosed - 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.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Dad and grandmother diagnosed - 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 fracture. It turned out to be a solitary plasmacytoma. I was 39.
In the spring of 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 function. I can run, play tennis and golf.
Try not to worry to much! I have four unaffected siblings!
Best regards from Mattias
In the spring of 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 function. 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
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: Dad and grandmother diagnosed - 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 diagnosed - 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 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 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
Re: Dad and grandmother diagnosed - what are my chances?
My mother was diagnosed with multiple myeloma about 2 years ago. Neither of her parents ever had any kind of cancer. I was just diagnosed with multiple myeloma a few weeks ago. I am 49.
I actually found mine by looking at my yearly blood test myself by noticing my gamma was high and another was high, not by much, just a few points, but I got to looking what it could be if they were high and it pointed to multiple myeloma. I had my mothers cancer doctor look at my test and if he thought I should have it looked into. He said yes and suggested what tests to do and it turned out to be multiple myeloma. By the time I went to cancer doctor and they did the urine test the protein count I had was over 7000. He said in another week I would be in renal failure.
I never thought I would have the same kind of cancer as my mother. I will be getting a stem cell transplant in about 5 months.
I actually found mine by looking at my yearly blood test myself by noticing my gamma was high and another was high, not by much, just a few points, but I got to looking what it could be if they were high and it pointed to multiple myeloma. I had my mothers cancer doctor look at my test and if he thought I should have it looked into. He said yes and suggested what tests to do and it turned out to be multiple myeloma. By the time I went to cancer doctor and they did the urine test the protein count I had was over 7000. He said in another week I would be in renal failure.
I never thought I would have the same kind of cancer as my mother. I will be getting a stem cell transplant in about 5 months.
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delynn
Re: Dad and grandmother diagnosed - what are my chances?
First, I'm sorry to hear so many have experienced or are currently going through this themselves. Multiple myeloma is the worst.
Second, thank you all for your input in the conversation. It is helpful to get insights from so many in similar circumstances.
My father passed away from multiple myeloma after two stem cell transplants and a short stint in remission only 4 years after my grandmother (father's mother) passed from the same. We only recently discovered that my father's sister has been diagnosed as well, which means the rest of the family is on their way to be tested.
I'm no doctor, however I am convinced that it's not just about "odds" in these circumstances. If my father, grandmother, and aunt had all won the lottery, my odds would remain unchanged. This is not the lottery, however, and it is clear by so many common cases here that there is more hereditary attributes to this cancer than we currently know. I would recommend screening if it runs in your family.
Second, thank you all for your input in the conversation. It is helpful to get insights from so many in similar circumstances.
My father passed away from multiple myeloma after two stem cell transplants and a short stint in remission only 4 years after my grandmother (father's mother) passed from the same. We only recently discovered that my father's sister has been diagnosed as well, which means the rest of the family is on their way to be tested.
I'm no doctor, however I am convinced that it's not just about "odds" in these circumstances. If my father, grandmother, and aunt had all won the lottery, my odds would remain unchanged. This is not the lottery, however, and it is clear by so many common cases here that there is more hereditary attributes to this cancer than we currently know. I would recommend screening if it runs in your family.
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Deseray
10 posts
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