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?
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Re: Weekly Poll - Life Altering Side Effects
My husband has neuropathy in his legs and feet. He needs a walker to get around. He was diagnosed in February with Stage 3 Myeloma. He was treated with Velcade Sub-Q, and his lab numbers are good.
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blueridge - Name: blueridge
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 67
Re: Weekly Poll - Life Altering Side Effects
I think that limiting it to one side effect is too restricting as depending on what I am wanting to accomplish 3 different ones would be life altering; each one would be life altering for a different activity.
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bond007
Re: Weekly Poll - Life Altering Side Effects
Hi bond007,
For the purpose of the poll, we wanted to see what people felt was the worst side effect.
Feel free, however, to use this discussion part of the poll to describe the three side effects that you feel are the most life altering and under what circumstances.
For the purpose of the poll, we wanted to see what people felt was the worst side effect.
Feel free, however, to use this discussion part of the poll to describe the three side effects that you feel are the most life altering and under what circumstances.
Re: Weekly Poll - Life Altering Side Effects
Diffiicult to choose just one. Mornings are Ok but Afternons i need to do very little. Tried to go back to work for two days a week but ony last about 4 hour a day before I loose concentration and need to go home. Stem Cell Transplant was in April 2012.
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GeoGerry - Name: Gerry Ligtermoet
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2011.
- Age at diagnosis: 64
Re: Weekly Poll - Life Altering Side Effects
From a caregiver's point of view, the hyperness (followed by grumpyness and then a crash) from the Dex. is most bothersome.
From the patient's point (my husband), the ongoing rash he has had since the autologous stem cell transplant last October has bothered him the most.
From the patient's point (my husband), the ongoing rash he has had since the autologous stem cell transplant last October has bothered him the most.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Weekly Poll - Life Altering Side Effects
.I'm not sure which is worse; chemo brain or peripheral neuropathy.
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erconners
Re: Weekly Poll - Life Altering Side Effects
That multiple myeloma is death row is a bit irksome.
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Joe Blow
Re: Weekly Poll - Life Altering Side Effects
Chemo induced menopause - in my early 30's!
Not just the infertility part (we did IVF frozen fertility preservation cycle before my stem cell and may try and have a baby next year if I'm still in remission), but I've been having hot flashes for over a year quite badly (can be several an hour), and things like my skin is so dry! I am now on some hormone replacement and it helps abit, but worried about heart or breast cancer issues since I"m only 34 now. Because my age makes myeloma rare, many issues I deal with are not frequently talked about, or are glossed over by doctors / brochures. I have met some other young cancer surviviros (women) who had other cancers and they have informed me about some of these hormone issues.
Not just the infertility part (we did IVF frozen fertility preservation cycle before my stem cell and may try and have a baby next year if I'm still in remission), but I've been having hot flashes for over a year quite badly (can be several an hour), and things like my skin is so dry! I am now on some hormone replacement and it helps abit, but worried about heart or breast cancer issues since I"m only 34 now. Because my age makes myeloma rare, many issues I deal with are not frequently talked about, or are glossed over by doctors / brochures. I have met some other young cancer surviviros (women) who had other cancers and they have informed me about some of these hormone issues.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Weekly Poll - Life Altering Side Effects
Hi I had fairly bad Perf Neuropathy in my feet originally but it has subsided to the point that I only occasionally get shooting pains in my feet and lower legs, actually more bothersome is the fact that my feet and lower legs are quite swollen most of the time-the bottoms so bad that I had to replace my shoes with special ones that allowed the use of thick sponge pads in the shoes so that I can walk at all ,that fact along with my shattered back vertibrae keep me sitting quite a bit of the time & my weight has climbed. yard work is pretty well limited to riding my mower -watching out for bumps- & doing some minor equipment maint. while sitting on a stool.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
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