[rosaliee]

Hate multiple myeloma

by rosaliee on Mon Aug 31, 2015 6:27 pm

As a caregiver for my husband who has multiple myeloma, its been a very difficult time.

He was diagnosed in 2011 after having 4 fractures in his back. He had surgery (kyphoplasty) done, which caused him to lose height and lung space, which makes his breathing hard so he is on oxygen. And then he received some radiation and then chemo. He was given different chemos – some of them were Velcade, Revlimid, and others which I do not remember. He also had a stem cell transplant which did nothing for him.

He is now on a clinical trial with dex, Revlimid, and panobinostat (Farydak). His numbers (IgA , M-spike) are within normal range, but his kappa light chain isn't.

To watch him in pain, which he gets in his back, and so much fatigue and other things at times makes me very upset and so angry with this cancer. Just wish he would go into remission and he could get back some of his life, but I am starting to realize he will never be where he was before he was diagnosed with cancer.

I am grateful he is alive and that I have him, but just wish he would have days of no pain. He walks with a walker and really does not do any form of exercises, although at times he pushes himself to walk around our neighborhood.

I have bad days where I want to scream (not at him), but then I get control of myself and realize how lucky I am to have him alive. They say God gives us what we can handle. I take each day and pray for tomorrow. It's not easy for any of us, I am sure.

[Nancy Shamanna]

Re: Hate multiple myeloma

by Nancy Shamanna on Tue Sep 01, 2015 12:19 pm

Hi Rosalee, welcome to the forum and thanks for sharing your concerns. I think it is very difficult to look after your husband, when he is in such pain and distress. Are you able sometimes to get a break and let someone else look after your husband? Caregivers need to get a rest too, and a way to bounce back a bit. Also, is your husband taking bisphosphonates (Aredia, Zometa) to help build up his bones? These drugs are taken by IV at a day medicine clinic. Best wishes!

[Little Monkey]

Re: Hate multiple myeloma

by Little Monkey on Thu Sep 03, 2015 12:12 pm

Are you and your husband getting any counselling to help you through this ?

[rosaliee]

Re: Hate multiple myeloma

by rosaliee on Fri Sep 04, 2015 2:33 pm

Hi,

We really don't need any counselling. We have come to terms with myeloma and what it does to your family life. I just feel bad for my husband who, after 4 years, still can't get around like he did. He just wants his life back the way it was.

Thank you very much for your response.