Hi all,
My mother passed away from multiple myeloma almost two years ago at the age of 78. She battled this disease with grace, dignity and courage for 2 1/2 years. Her case was very different in that she never really responded well to any of the drug therapies available. Apparently she had a gene mutation that made it more difficult (I am unaware of what that was). She had excellent care from a local oncology group and also consulted (and visited) with a well known multiple myeloma specialist in the area.
As it turns out, her multiple myeloma transformed into lymphoma as well, and the best I can explain it is she had a combination of both, multiple myeloma with lymphoma. I have never heard of that and apparently it is rare.
My mother was diagnosed in 2012. My aunt (her sister) at the time was in perfect health, jogging, traveling, etc. Fast forward to 2013, and my aunt became very ill, very fast. I won't bore you with all the details, but she went to doctors for several months before someone finally had her do a heart biopsy. She had cardiac amyloidosis. With all the reading I have done, she may have had multiple myeloma as well, but they never did test her for that. And believe it or not, she died almost a year before my mother. I never thought something like that would happen.
I have wondered if there is a genetic link there and that maybe they BOTH had multiple myeloma but one was undiagnosed. My aunt did not have any of the classic multiple myeloma symptoms that I am aware of.
Thanks for listening.
Forums
5 posts
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Re: Sisters with multiple myeloma & amyloidosis
Hi Lisa,
A few other posters have also brought up this question of genetic links to myeloma. As I understand it, the jury is still out on that question. I know I would be wondering, too, if I were in your situation.
You also need to remember that your mom and aunt shared a childhood together. They would have been exposed to similar environmental influences. For example, their family house could have been in an area with high radon emissions. I am not saying this was so; I’m just trying to point out the difficulties in establishing genetic links. Environment counts as well.
I am somewhat like your mom in that I am battling other blood cancers besides myeloma. In my case, I have clonal expansions of both T and B cell lymphocytes. Of the three blood cancers that I have, my myeloma is the most threatening. Also, like your mom, I have a chromosomal alteration in my clonal plasma cells. I gather that means my prognosis is somewhat poorer than the average myeloma patient.
During my treatment for myeloma, I met a fellow who has cardiac amyloidosis. He is actually getting the same chemo drugs that I do. Over the last few weeks we’ve compared notes and have tried to learn from each other’s experiences. Cardiac amyloidosis is truly a nasty disease.
There are some mighty knowledgeable posters on this site. I hope they will be able to help you with the question of genetic links.
Joseph
A few other posters have also brought up this question of genetic links to myeloma. As I understand it, the jury is still out on that question. I know I would be wondering, too, if I were in your situation.
You also need to remember that your mom and aunt shared a childhood together. They would have been exposed to similar environmental influences. For example, their family house could have been in an area with high radon emissions. I am not saying this was so; I’m just trying to point out the difficulties in establishing genetic links. Environment counts as well.
I am somewhat like your mom in that I am battling other blood cancers besides myeloma. In my case, I have clonal expansions of both T and B cell lymphocytes. Of the three blood cancers that I have, my myeloma is the most threatening. Also, like your mom, I have a chromosomal alteration in my clonal plasma cells. I gather that means my prognosis is somewhat poorer than the average myeloma patient.
During my treatment for myeloma, I met a fellow who has cardiac amyloidosis. He is actually getting the same chemo drugs that I do. Over the last few weeks we’ve compared notes and have tried to learn from each other’s experiences. Cardiac amyloidosis is truly a nasty disease.
There are some mighty knowledgeable posters on this site. I hope they will be able to help you with the question of genetic links.
Joseph
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Sisters with multiple myeloma & amyloidosis
Hello, Lisa:
There is some excellent commentary from Wobbles, I will add a couple of more thoughts. Speaking off the top of my head, the statistic to get multiple myeloma in a lifetime are something like 5 or 6 in 100,000 people. If it occurs in a family, there is a mild correlation where that number goes up about 25%. So if a close family member gets it, there is a slightly increased risk of getting it, though still a small number and relatively rare. That would suggest that you, your siblings, and your cousins (and maybe their kids too) get the relatively cheap SPEP test, just to be on the safe side, and be prepared.
Secondly, there are articles on the logistics of the condition that explain that as one gets older, they tend toward having the operation of the blood / immune system move toward development and advancement of MGUS, smoldering multiple myeloma, and multiple myeloma. Multiple myeloma is an older person's disease / illness (though we know of course, not exclusively). There is natural progression towards this in the aging process. For example, doctors who study this have projected that if everyone got screened, at about the age of 80 years old, MGUS would be present in more than 50% of that population. And, if you are lucky enough to make it to the 85+ population, the incidence of this disorder goes up, and so on, with older ages. Your mom and your aunt (I think) got to their 70's before they were inflicted, which is in the range where it becomes more frequent. I will also guess that because of the other effects of aging, that some of the signs of multiple myeloma may not be as easily recognized (or dismissed) as just the natural aging process. So thank you very much for sharing your story. My condolences for your mother and aunt, and best of luck to the rest of the family.
One last thought. If God forbid, this comes back for any of your other family members, a new class of drugs, the monoclonal antibodies, have early indication that they work well against the bad cytogenetics. The approved monoclonal antibodies are Darzalex (daratumumab) and Empliciti (elotuzumab). They were approved in the U.S. first in 2015, and were not generally available for your relatives. They were in clinical trial, and there was not a huge amount of data on them at that time. There are others in the research pipeline, as well, that will be available in the coming years.
There is some excellent commentary from Wobbles, I will add a couple of more thoughts. Speaking off the top of my head, the statistic to get multiple myeloma in a lifetime are something like 5 or 6 in 100,000 people. If it occurs in a family, there is a mild correlation where that number goes up about 25%. So if a close family member gets it, there is a slightly increased risk of getting it, though still a small number and relatively rare. That would suggest that you, your siblings, and your cousins (and maybe their kids too) get the relatively cheap SPEP test, just to be on the safe side, and be prepared.
Secondly, there are articles on the logistics of the condition that explain that as one gets older, they tend toward having the operation of the blood / immune system move toward development and advancement of MGUS, smoldering multiple myeloma, and multiple myeloma. Multiple myeloma is an older person's disease / illness (though we know of course, not exclusively). There is natural progression towards this in the aging process. For example, doctors who study this have projected that if everyone got screened, at about the age of 80 years old, MGUS would be present in more than 50% of that population. And, if you are lucky enough to make it to the 85+ population, the incidence of this disorder goes up, and so on, with older ages. Your mom and your aunt (I think) got to their 70's before they were inflicted, which is in the range where it becomes more frequent. I will also guess that because of the other effects of aging, that some of the signs of multiple myeloma may not be as easily recognized (or dismissed) as just the natural aging process. So thank you very much for sharing your story. My condolences for your mother and aunt, and best of luck to the rest of the family.
One last thought. If God forbid, this comes back for any of your other family members, a new class of drugs, the monoclonal antibodies, have early indication that they work well against the bad cytogenetics. The approved monoclonal antibodies are Darzalex (daratumumab) and Empliciti (elotuzumab). They were approved in the U.S. first in 2015, and were not generally available for your relatives. They were in clinical trial, and there was not a huge amount of data on them at that time. There are others in the research pipeline, as well, that will be available in the coming years.
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JPC - Name: JPC
Re: Sisters with multiple myeloma & amyloidosis
Thank you for the interesting and informative perspectives. I am not so much worried about the genetics but more interested I guess as to why some respond and some don't. The posts were helpful. I have decided (previously) not to do the genetic testing because why worry about something you can't do anything about.
I have however thought about the breast cancer testing as my mother had breast cancer in the late 1970s. Someone mentioned ages; my aunt was just a few weeks shy of 70 when she died of cardiac amyloidosis. We feel that delay in diagnosis made her problem even worse. But that is another story.
When my mom was diagnosed, I thought well, that is not the worst it could be. Geraldine Ferraro lived for about 15 years (give or take) with multiple myeloma and was diagnosed even before all of the treatments my mom tried. I guess she was one of the "lucky" ones.
Thanks all!
I have however thought about the breast cancer testing as my mother had breast cancer in the late 1970s. Someone mentioned ages; my aunt was just a few weeks shy of 70 when she died of cardiac amyloidosis. We feel that delay in diagnosis made her problem even worse. But that is another story.
When my mom was diagnosed, I thought well, that is not the worst it could be. Geraldine Ferraro lived for about 15 years (give or take) with multiple myeloma and was diagnosed even before all of the treatments my mom tried. I guess she was one of the "lucky" ones.
Thanks all!
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Lisa H
Re: Sisters with multiple myeloma & amyloidosis
Wobbles,
What you wrote about my mom and aunt sharing a childhood together reminded me that my grandmother (RIP, a wonderful lady) had OCD (before it was talked about) and always had mothballs in the house, so everything they owned smelled like mothballs (clothing wise). You could smell it immediately when you walked into the house. I wonder ...
What you wrote about my mom and aunt sharing a childhood together reminded me that my grandmother (RIP, a wonderful lady) had OCD (before it was talked about) and always had mothballs in the house, so everything they owned smelled like mothballs (clothing wise). You could smell it immediately when you walked into the house. I wonder ...
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Lisa H
5 posts
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