This week’s poll is about which treatment-related side effects have the largest impact on the lives of people with multiple myeloma.
A few clarifications:
First, this poll is for people who have received treatment for multiple myeloma.
Second, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
In particular, why has the side effect you chose had such an impact on your day-to-day life? Have you found ways to manage the side effect? What has worked best?
We previously ran this same poll before, but are running it again so that Beacon readers have access to the latest information and can compare it to the previous data:
https://myelomabeacon.org/forum/weekly-poll-life-altering-side-effects-t1137.html
Forums
7 posts
• Page 1 of 1
Re: Weekly Poll - Life Altering Side Effects - 2013
I have more than one side effect so really I could have chosen about five. 
-
Music meme - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2010
- Age at diagnosis: 53
Re: Weekly Poll - Life Altering Side Effects - 2013
I didn't have to ask my husband (beginning 8th year since diagnosis) about answering this question. By far, what has had the most impact on his daily routine is : Peripheral neuropathy in his feet. (He does have fatique, but he manages it). He is an older guy, but still working every day running his contracting business. The most limiting side effect is the loss of nerve conductivity in his feet. He states "I have to walk like a duck" (when going to job sites) or anywhere else. He tolerates it as best he can -- it is not yet a trade off for "quality of life".
I would very much appreciate hearing if anyone in the PN category has found relief. My husband can't feel his feet - therefore walking and balance are big problems. We will consider anything, even meds that we might not have tried. Others might consider us lucky that we list PN as the most signifiant side effect-- however, hearing from anyone in any group is important to us .
We have access to a medical doctor who left his practice and is now practicing acupuncture. We are on his waiting list.
(FYI regarding our treatment): My husband has not had a SCT. He has done well with Rev/Dex and now Carfilzomib and Dex. Thank you for any input. God Bless you all.
I would very much appreciate hearing if anyone in the PN category has found relief. My husband can't feel his feet - therefore walking and balance are big problems. We will consider anything, even meds that we might not have tried. Others might consider us lucky that we list PN as the most signifiant side effect-- however, hearing from anyone in any group is important to us .
We have access to a medical doctor who left his practice and is now practicing acupuncture. We are on his waiting list.
(FYI regarding our treatment): My husband has not had a SCT. He has done well with Rev/Dex and now Carfilzomib and Dex. Thank you for any input. God Bless you all.
-
rose1915
Re: Weekly Poll - Life Altering Side Effects - 2013
My husband was diagnosed with multiple myeloma in 2011. The overwhelming change to his life is immobility. His bone damage is extensive. This is not something anyone will want to hear but he is very fortunate to be able to walk at all. I could tick a lot of other boxes for him too but, heigh ho - sunny side up!
-
Sally
Re: Weekly Poll - Life Altering Side Effects - 2013
I could have put down at least 4. In the end I put down weight gain as it also affects; my energy levels (fatigue), my heart, the added weight doesn't help the PN nor my steroid induced diabetes. Currently I am working with a dietician and an exercise physiologist to get rid of some of the excess kilos. Its working but I am sooooo hungry (I tell myself it is a steroid induced fake hunger - sometimes that works 
).
).-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Weekly Poll - Life Altering Side Effects - 2013
Rose , I consider your husband lucky he cannot feel his feet as mine are really in bad shape and hurt any time l try to stand on them due to large bullous protrusions on the bottoms of my feet , l would welcome a loss of feeling , these blister like protrusions are so large that in order to keep my ballance l must keep my toes pressed down inside my over sized shoes at all times to maintain a stable and up right position , this is extremely tiring and limits my walking to about 40 to 80 feet at a time then l must sit down for both my feet and back pain plus I'm out of breath. regards NG
-
Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
7 posts
• Page 1 of 1