[Sluke]

New, trying to find out best way to help my mother.

by Sluke on Tue May 08, 2012 7:39 pm

Hello, my name is Emily. My mother, 62, was just diagnosed with multiple myeloma (light chain?). One day a few months ago, she started seeing double. After several tests they determined she had lesions on her skull, as well as her spine (we are still awaiting further bone scan tests to see if there are lesions in other places). She has completed the first 2 weeks of the Velcade chemotherapy, and with the use of steroids and other medications, the swelling has gone down so she is able to see (so radiation has been discussed, but not necessary at this point).
I'm just trying to find out as much information as possible about "light chain" myeloma; why/how it's different from regular myeloma. Any responses from anyone dealing with that particular myeloma would be appreciated. Also, what can I do for her? I feel helpless. We are way past the flowers, stuffed animals, and cards - I just want to help her feel better and try to help her fulfill any things she feels like she has missed out on in life so far (but I have very limited resources). Any suggestions on how family members can help?
Thanks to everyone for participating in forums like these.....just reading stories and knowing there is a support system like this is very comforting!

[Nancy Shamanna]

Re: New, trying to find out best way to help my mother.

by Nancy Shamanna on Tue May 08, 2012 11:14 pm

Hi Emily, Thanks for sharing your Mom's story. It's good to know that she is getting the treatments to help her vision and to start chemotherapy too. your strong family support is so important to her right now...she is probably not worrying about too much else except just getting better. Any things you can do , such as driving her to appointments, or making her some meals etc. is always appreciated. She is lucky to have a caring daughter like you!

[Christa's Mom]

Re: New, trying to find out best way to help my mother.

by Christa's Mom on Wed May 09, 2012 12:12 pm

Hi Emily,

I'm sorry that you have had to join our family. But as Nancy say's, your mom is truly lucky to have a daughter like you. Many people find that once they start treatment, many of their painful symptoms start to resolve themselves and they can resume many, if not all of their normal activities. It sounds like the Velcade is doing wonders for your mom! I don't know anything about light chain myeloma, but in general, there are lots of effective options for managing myeloma. Although there is no cure (yet) people are living a long time with this disease.

Lyn

[Sluke]

Re: New, trying to find out best way to help my mother.

by Sluke on Wed May 09, 2012 8:33 pm

Thank you Nancy & Lyn for the encouragement. Things sound very promising!

[Anonymous]

Re: New, trying to find out best way to help my mother.

by Anonymous on Thu May 10, 2012 4:08 pm

The "light chain" is just one of the "types" of Myeloma. There are heavy and light chains, IgA, IgG, IgM. My husband has IgA Light Chain Myeloma. It's really complicated at first but you will soon figure it out! My husband did Velcade, became resistent, now on Revlimid. Keep fighting!

[gjensen31]

Re: New, trying to find out best way to help my mother.

by gjensen31 on Thu May 10, 2012 9:06 pm

What we found out was my mom's myeloma is "light chain" deposition, and is crashing her kidneys faster than AOL on a IBM486. She's on dialysis and has to watch everything she eats, and make sure she's eating, since the build up of toxins causes her to lose her appetite.

From what I understand, it's just a type of protein (like said above) and in our case, it's accumulating in her kidneys causing renal failure. So the accumulation of the "chains" is what we have to keep the myeloma from doing now.

Hope that contributed some.