[Madison]

First multiple myeloma, then stomach cancer

by Madison on Thu Dec 25, 2014 1:27 pm

I don't know about you, but I see multipe myeloma as a gold mine to the medical field and doctors and I'm about fed up with it all.

I think they could cure it tomorrow, but there's too much money made off it. I realized this when my 63 year old brother died from it 2 years ago.

They weren't the least interested in any history of our environment or anything. He was exposed to Agent Orange in Vietnam War. Well I wasn't, but aren't you interested in our environmental factors we were exposed to, like well water, etc. Not one question asked, nor did they want to hear my comments.

I'm 74, just ended my 5th year with it, very active. I've been through the wringer, getting stomach cancer on top of that 1 1/2 years after stem cell transplant after taking chemo melphalan. 75% of stomach removed, brought multiple myeloma back full blast.

Now my stomach won't tolerate chemo for multiple myeloma. My stomach cancer was in Stage 1. I don't think 75% removal was necessary. I go to Karmanos, supposed to be experimental hospital. I'm about fed up with it all.

Haven't had chemo in 3 weeks, won't give until have scope. Multiple myeloma doctor thinks stomach cancer back. Lost 61 lbs. (28 kg), weigh 90 lbs. (41 kg), can't enjoy food whatsoever, can't gain an ounce.

Any ideas? I've ran out, plus no family support at all. Can't find social worker. I carry this entire load alone, wouldn't you give up?

Fed up!

[nomm]

Re: First multiple myeloma, then stomach cancer

by nomm on Thu Dec 25, 2014 2:57 pm

Hi Madison.

Sorry to hear your story.

Did you actually ask for help from family and friends? Maybe they don't realise how difficult your situation is.

You have mentioned that nobody asked you for common causes for your and your brother's myeloma. I agree with you that researchers don't do enough to investigate family clusters with this cancer. Do you have somebody else in your family who suffers from this disease?

[cindylouise]

Re: First multiple myeloma, then stomach cancer

by cindylouise on Fri Dec 26, 2014 8:27 am

Hi,

Sorry for all that you are going through. I don't intend any of this to sound harsh, so please don't misunderstand my questions.

Have you tried asking your oncologist to set you up to see a social worker? If you appear to be strong, and you sound like you are, the doctor may not realize you are struggling as much as you are.

The same goes for the family and environmental history. Tell them you want to talk about it. It is unfortunate when we feel like we have to ask for every little thing we need. But sometimes doctors just don't pick up on it (and they aren't mind readers).

At my husband's first oncology appointment, I had been struggling with his care at home for so long that I nearly fell apart. This is not a hard thing for a doctor to see, and off to the social worker they sent me! But, other times, they just don't know you need it.

One of my greatest concerns for all people having to deal with serious and long-term health issues is the need to advocate for themselves. I work in long-term care, and have often sent patients and family members to speak with our social worker. Through my interactions with her, I have learned to be my husband's best advocate. Sometimes, we just have to learn how to do that.

I hope you see things turn around a bit in the new year!