[hhodge1104]

Are there any treatment options left?

by hhodge1104 on Sat Jan 24, 2015 11:56 pm

Hello,

I guess I am at the point where I am looking for support for my mother. She is now 12 years fighting, which, after seeing that someone had fought for 21 years, makes me feel more positive already.

Either way, my mother has been fighting since 2002 when she was first diagnosed with multiple myeloma. She has had two stem cell transplants and so many different chemo regimens, I can't name them all. She spent quite a bit of time at the UAMS multiple myeloma clinic in Little Rock, Arkansas, until I convinced her to return to my home in Nashville, Tennessee, where she could see the specialists at Sarah Cannon Research Center.

She recently has finished two months of carfilzomib (Kyprolis). The first round knocked her light chain count from 1700 to 600, and the most recent put her back up to 1400. We are in the process of getting back in to the head research oncologist to discuss options to move further.

She has dropped over 10 pounds in the last month and is in quite a bit of pain. My biggest concern is these two growing lumps or painful nodules on her forehead that have showed up in the past few weeks. Has anyone experienced these?

I know there are other trials out there, as I have done TONS of research and refuse to give up on her. My fear is that she will have no quality of life at this point. If we are not at the doctor, she is just in bed asleep.

Any words of wisdom or opinions would be great. I would love to get her in contact with some­one who has been going through it longer than her, to perhaps give her a spark of positive, as she feels as though she has hit the end.

Thank you and God Bless.

[James S]

Re: Are there any treatment options left?

by James S on Sun Jan 25, 2015 10:07 pm

I'm sure it is nice to have your Mom close to you for her treatment and the center has a well deserved reputation, but do they have multiple myeloma specialist?

I have been treated at UAMS for 3 years after having a stem cell transplant. Am going next month for 6 months check up and expect to be taken off all meds as my numbers are all in low normal range.

Since your mother has been at UAMS, I don't have to tell you how large their research and treatment facilities are. I feel they have saved my life and will continue to be treated there forever. I'm 72 and don't expect to die from multiple myeloma.

With all the research and clinical trials going on, tell her to hang in there