[mojo72]

Father & mother both with myeloma: how can this be?

by mojo72 on Fri Sep 21, 2018 1:04 pm

Hi Everyone,

I am Jodi, I lost my dad two years ago to multiple myeloma, he was 72. He was left undiagnosed until his cancer was very advanced. He died within weeks of being diagnosed. Since his passing, my family has been plugging along and celebrating all our great memories of my father.

My mother (not biological) fell last weekend and a CT scan showed a spinal lesion. Fast forward to yesterday, she has been diagnosed with multiple myeloma. She just turned 72.

I am sorry, but I am having a very hard time wrapping my brain around this. She, unlike my father, feels well and thinks the doctors are all crazy, but blood work indicates differently. She is scheduled for a bone marrow biopsy next Friday. I remember my dad telling me that he felt like a flip was switched off on his energy just two years before being diagnosed. He attributed this to being 70.

I have done a lot of research on the disease to understand what happened with my dad, so have a clear understanding of treatments, lab work, etc.

However, I am now worried not only about my mother's prognosis, but I have a 30-year-old sister who has Down Syndrome and lives at home. I am concerned if there could be an environmental issue at play here? Does this seem likely?

I am simply looking to make sense of something that seems so impossible.



Thank you, Jodi

[Pepperink]

Re: Father & mother both with myeloma: how can this be?

by Pepperink on Fri Sep 21, 2018 4:10 pm

Mojo,

I really think it is just a lousy coincidence, but probably two cases of multiple myeloma.

When I was diagnosed, my bad numbers were really high and my good numbers were low. My biopsy showed that 90% of my bone marrow was saturated with myeloma plasma cells. (It appears the sample happened to hit where there was a high concentration.)

Yet I had no bone or kidney issues, and still don't after 15 months of treatment.

I was slightly anemic at least two years prior to diagnosis, and sometimes got a little out of breath climbing stairs. Like a lot of other folks, I attributed it to age.

The biopsy is really important and will likely confirm the situation. Your mother is apparently lucky, as I was, to get this far without bad things happening.

Keep us posted!

[mojo72]

Re: Father & mother both with myeloma: how can this be?

by mojo72 on Thu Sep 27, 2018 4:26 pm

Thank you for the reply, I appreciate you sharing your experience.

So, it has been biopsy confirmed now and she will be starting treatment soon.

We have a lot of hope right now as I am told this is fairly early and she is feeling well. My Mom is in really good spirts and we're all staying positive as this seems to be a much different scenario than my Father.

Thanks again!

[Gala]

Re: Father & mother both with myeloma: how can this be?

by Gala on Wed Oct 03, 2018 7:57 am

So sorry to hear that both your parents have been diagnosed with myeloma.

My mother always suspected that my grandmother died from 'some form of bone cancer'. She was never diagnosed, but had severe bone pain before she died. My sister has been diagnosed with very advanced multiple myeloma at the age of 48. I have done a lot of research into familial multiple myeloma. There have been cases where spouses were both diagnosed with the disease. Un­fortu­nately, as of today the scientists have not yet found any clear answers as to what causes myeloma, though a combination of genetic and environmental factors have been explored. For example, certain occupations or exposures lead to higher instances of myeloma in the relevant groups. Exposure to radiation has been named as one of the possible environmental factors. But a clear link, similar to smoking and lung cancer, for example, or asbestos and mesothelioma, has not yet been established with multiple myeloma. You might not be able to get an answer.

I understand your worry about your sister. Now that you know what to look for with myeloma, you will be able to see the signs early, hopefully. Talk to your sister's doctor about your concerns. They might keep an eye on any blood test results that might be out of wack. I hope your mum will respond better to treatment, as it sounds that she might have been diagnosed at an earlier stage compared to your dad. Some people do very well when treated and live fulfilling lives.

[Johnharlin]

Re: Father & mother both with myeloma: how can this be?

by Johnharlin on Mon Oct 08, 2018 10:03 am

It is not impossible that a bad diet could be responsible. If they had bad nutrition for a number of years, this could be the reason.

There are a number of stories I've read about protein and iron deficiency in vegetarians that have caused tremendous problems, especially over long periods of time.

My mother had multiple myeloma but didn't know it. In the last year of her life she could hardly cook for my father, who was suffering from nutritional deficiency as a result. The result of that was that his eyesight went way down and for some strange reason his creatinine level started going up. We have him on a better diet now. Hopefully his creatinine level will go down, but there doesn't seem to be any way that his macular degeneration can be reversed.

My mother was a vegetarian.

You cannot avoid the consequences if you go with nutritional deficiency for long periods of time. And it is my strongest opinion that if cancer doesn't get you in this state then something else surely will.

[Jhubble]

Re: Father & mother both with myeloma: how can this be?

by Jhubble on Mon Oct 08, 2018 10:13 am

My husband has multiple myeloma and his aunt died of it a year before. The myeloma specialists told us it's more environmental, i.e., both my husband and his aunt lived where crop-dusting was prevalent. They feel that research shows no genetic link for multiple myeloma.