[pt_m]

Loved one with a myeloma diagnosis

by pt_m on Tue Dec 20, 2016 3:47 pm

Hi everyone,

My name is Pat and I want to preface this post by saying I'm incredibly new to this entire ex­perience. I'm 18 and just found out on Friday that my mother has been diagnosed with multiple myeloma and plasma cell leukemia. This has been absolutely shocking for myself, my siblings, and of course my parents. I have taken some comfort in reading the stories of others who have gone through this themselves or with a loved one.

I do not pretend to understand multiple myeloma, or cancer in general, but if what I have been told by my parents is it started with my mother's blood test results (from a physical) coming back with very high levels of protein. She went to the hospital on Wednesday and was there for a few days while they performed multiple tests, etc. to test what the problem was. I was told that the levels of protein in her blood were indicative of someone that is late in the stage of myeloma (and potentially terminal), however the results of the tests she had done were showing the opposite to be true. I believe they said that she has cancer in two very small spots.

Yesterday, she returned to the hospital to receive a prognosis and to go over treatment options with the doctor. I haven't heard anything on the prognosis, but my father has maintained that the disease is NOT presenting in the typical way but that it's seeming as if there is a relatively positive outlook.

A little later yesterday afternoon, the doctor called and said that the protein levels in her blood were high again, although not as high as they were before (she had just undergone the procedure where they filter your blood to take the protein and what not out, I'm not sure what the name of this procedure is), so that was somewhat of a cause of concern for the doctor.

He then recommended that we seek out a clinical trial and get a doctor that specializes in multiple myeloma because he wasn't entirely familiar (and also it has not been presenting in the way that it typically would). My mother is not "sick", she feels healthy and has been trying to go back to her usual routine.

I have been struggling a lot to keep my mindset positive, which is what I keep telling myself I need to do. I really want to support her and be a source of strength for her, however at the same time I feel incredibly lost and almost like I have no one to go to and unload some of this mental burden on (so here you find me on this forum writing to you all). I don't know what most of this information means, so anyone who can try and provide me some clarity (or comfort) would be greatly appreciated.

Thank you

Last edited by pt_m on Wed Dec 21, 2016 2:14 am, edited 1 time in total.

[Multibilly]

Re: Loved one with a myeloma diagnosis

by Multibilly on Tue Dec 20, 2016 4:27 pm

Hi Pat,

Welcome to the forum. An initial diagnosis of myeloma and plasma cell leukemia (PCL) is quite a bit to swallow and I can certainly understand all the angst that you and your family are ex­peri­encing.

What jumped out at me in your post was that your mom's doctor was not familiar with her pre­sentation and that she therefore should consider a clinical trial. I'm not suggesting that a clinical trial wouldn't make sense for her particular situation (especially given her dual diag­nosis), but I would encourage your mom and dad to first seek out a second opinion from a myeloma specialist before pulling the trigger on a particular treatment program. If you let us know what city your mom is in, folks on this site can recommend some specialists.

Treatments for myeloma have come a very long way in the past few years, and many folks on this forum are living quite excellent and long lives in spite of being initially diagnosed with stage 3 myeloma. So, there is clearly solid hope for your mom. But there is no substitute for working with a myeloma specialist to get the most out of the modern treatments available to myeloma and PCL patients.