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Myeloma runs in the family - what should we do?

by anil on Fri Nov 01, 2013 7:38 am

My father has multiple myeloma and my uncle died suffering from it. Can we proactivly do anything like preserving bone marrow stem cells for future use.? As child's stem cell preservation happens normally. We are three siblings and in our 30s.

anil

Re: Myeloma runs in the family - what should we do?

by Wayne K on Fri Nov 01, 2013 11:19 am

That's a good question. I lost a sister to the disease and have a younger one who is free of it now, but much younger, 13 years.
I would think the idea is sound up until one meets the expense.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Myeloma runs in the family - what should we do?

by sandyramdass on Fri Nov 01, 2013 7:44 pm

My mom is a survivor of myeloma for 5 years now. She did 2 SCT so far and is on Revlimid 5mg. But she doesnt really drink it because of the side effects.

I have spoken to my family doctor about concerns for mysef and my 5 sisters but she said we don't have to worry which makes no sense to me. I proposed that I do an SPEP blood test I don't think I have the name right though.

Any thoughts ? I am 23 and my older sisters are early 30's

Thanks

sandyramdass

Re: Myeloma runs in the family - what should we do?

by Wayne K on Fri Nov 01, 2013 9:19 pm

Multiple myeloma is not thought to be genetic. In my case I suspect either coincidence or the same environmental exposure.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Myeloma runs in the family - what should we do?

by bobolink on Sat Nov 02, 2013 8:47 am

My father and brother both had multiple myeloma. I have trending up MGUS, with rising Kappa ratios and some abnormal cells , etc. I have explored stem cell preservation but do not have the money, as insurance
WILL NOT cover this procedure. My brother in the mid-90's was told by oncologists in KY . TO
NOT worry and TO not harvest stem cells. He was financially able to harvest them!!!! He followed Bad medical advice, since he now is dead. I do not know if it inherited, I do believe it is a combination of chromosome malfunctions inherited that make us percepitable to environmental toxins.

bobolink

Re: Myeloma runs in the family - what should we do?

by dnalex on Sat Nov 02, 2013 11:36 am

[quote="anil"]My father has multiple myeloma and my uncle died suffering from it. Can we proactivly do anything like preserving bone marrow stem cells for future use.? As child's stem cell preservation happens normally. We are three siblings and in our 30s.[/quote]

I think that this is an interesting idea, but an issue with be insurance coverage, both for the stem cell isolation and for the storage.

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56

Re: Myeloma runs in the family - what should we do?

by Maggieinphx on Sat Nov 02, 2013 11:54 pm

Multiple Myeloma runs in my family as well. I lost both my mother and my maternal grandmother to multiple myeloma. I would like to be considered for a study on this disease but apparently there are none studying generic links.

Maggieinphx
Name: Maggieinphx
Who do you know with myeloma?: My mother and my grandmother both l
Age at diagnosis: 63

Re: Myeloma runs in the family - what should we do?

by Mattias on Sun Nov 03, 2013 2:04 pm

Hi

My father had multiple myeloma for four years. The last couple of months in his life he rapidly lost more and more of his vitality. He died of plasma cell leukemia. He was only 63. Diagnosed with myeloma in 2009.

I have had two solitary plasmacytomas treated with surgery and radiation (Dec 2009, June 2011). I went into complete remission after the two treatments.

Now I´m in for a third round with multiple plasmacytomas....

We have donated bonemarrow for research. // Mattias in Sweden

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: Myeloma runs in the family - what should we do?

by Dr. Jason Valent on Sun Nov 03, 2013 4:31 pm

There is a small but increased risk of multiple myeloma developing over the general population if you have a first-degree relative [parent, brother, sister, or child] with a plasma cell disorder.

From a pro-active standpoint, there is not evidence to suggest that "screening" for myeloma is necessary. But routine chemistries and blood counts yearly are reasonable.

Dr. Jason Valent
Name: Jason Valent, M.D.
Beacon Medical Advisor

Re: Myeloma runs in the family - what should we do?

by Melissa64 on Thu Nov 07, 2013 11:51 pm

My maternal great-grand­mother and maternal grand­mother have died from multiple myeloma and now my mom has it. My brother has Grave's disease and I have cousins that have immune diseases and red blood cell issues. All of these immune diseases are on the maternal side of the family. But then again my father and grandfather died from lung cancer.

What do you think is the risk of me getting some kind of cancer especially multiple myeloma?

Melissa64
Name: Melissa
Who do you know with myeloma?: Mother
When were you/they diagnosed?: August 2013
Age at diagnosis: 69

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