[Beacon Staff]

Weekly Poll - Quality Of Life Now Compared To Before Myeloma

by Beacon Staff on Wed Jul 18, 2012 1:48 pm

This week’s poll is about how multiple myeloma affects quality of life.

A few clarifications:

First, this poll is for people with symptomatic / active multiple myeloma (not MGUS or smoldering myeloma).

Second, quality of life can often be very different at diagnosis, during treatment, during remission, and when myeloma progresses. Please compare your current quality of life (from the last few weeks) to your quality of life before your myeloma symptoms began and you were diagnosed with myeloma.

Third, 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. For instance, please describe both the positive and negative effects multiple myeloma has had on your quality of life.

[kdboca]

Re: Weekly Poll - Quality Of Life

by kdboca on Wed Jul 18, 2012 9:25 pm

To me, a "Beacon" signals in all directions. The polling this site does is more of a directed "Ray" than a "Beacon". You need a data branch based on myeloma stage, especially MGUS, SMM, & Symptomatic. Then ask your poll question. Then branch off to separate blogs. You are doing a HUGE disservice to many people who follow you. Your polls consistently diminish those suffering from MGUS and SMM by excluding them. If you only want to serve those with full symptomatic multiple myeloma then just tell us we are welcome but not to expect much consideration in your discussions. Maybe you already told us this but at first diagnosis we looked for all the help we could find and started following you.

[Beacon Staff]

Re: Weekly Poll - Quality Of Life

by Beacon Staff on Thu Jul 19, 2012 9:51 am

Hi kdboca,

Thanks for your feedback about our weekly poll questions. We're sorry that you have felt excluded from many of the polls and that we have not been serving the smoldering myeloma and MGUS community as best we can.

Our intention when specifying that a particular poll is for patients with only one type of active myeloma, smoldering myeloma, or MGUS is not to exclude people with the other diagnoses but rather to provide more meaningful poll results. For questions where we think the results may differ significantly based on diagnosis, we ask the question individually for each group. If our polling software allowed, we could ask each person voting to also select their diagnosis, then we could break out the results by group. Unfortunately, our software does not have that capability, so we ask the question for the different groups on different weeks. We don't always ask them three weeks in a row, just to provide some variety.

Here's a link to the weekly polls specifically for smoldering myeloma patients:
https://myelomabeacon.org/forum/search.php?keywords=smoldering&fid%5B%5D=19&sf=titleonly

Here's a link to the weekly polls specifically for MGUS patients :
https://myelomabeacon.org/forum/search.php?keywords=MGUS&fid%5B%5D=19&sf=titleonly

Admittedly, last week's poll was the first one specifically for MGUS patients, but there are additional polls that were open to all three groups. We do tend to ask more poll questions specifically for active myeloma patients, given that treatment-related questions do not apply to MGUS patients and a significant portion of smoldering myeloma patients. In addition, one of our previous polls showed that a very large majority of our readers have active myeloma:
https://myelomabeacon.org/forum/weekly-poll-type-of-myeloma-t864.html

We'll be sure in the coming weeks to poll smoldering myeloma and MGUS patients on some of the topics that we have already asked of one or two of other groups.

It can be interesting then to compare the results for the three groups, such as age at diagnosis for
MGUS: https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-mgus-t1171.html
Smoldering myeloma: https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-smoldering-myeloma-t754.html
Active myeloma: https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-active-multiple-myeloma-t708.html

Thanks again for your comments. We always appreciate suggestions about how we can better serve the myeloma, smoldering myeloma, MGUS, and related communities.

[msmulberry]

Re: Weekly Poll - Quality Of Life

by msmulberry on Thu Jul 19, 2012 2:50 pm

I am interested to see this post because it deals with a subject I have been thinking of writing you about. I have felt somewhat excluded and dismissed on this site because I "only" have smoldering myeloma, although I think it has just now crossed over to myeloma. I'll know next week when I go to Little Rock.

After two years of searching for info, this site has been invaluable and the best I have found. But lately I have felt very alone and sometimes dismissed by comments by those with active myeloma.
I was considering writing in to ask for some kind of forum for Smoldering people.

I was diagnosed 2 years ago at the same time I was told I had advanced breast cancer. They said not to worry about it. I had never heard of multiple myeloma til then. Halfway thru chemo, I found the path report on the bone biopsy which said in two places that my chance effective treatment was very poor and my chance for survival was poor. This was very upsetting. I went on line and all I found was survival is 2 years. Meantime I felt all the fuss about breast cancer was pointless if I only had 2 years. No one would address the multiple myeloma. The chemo for the breast cancer knocked my numbers down for a while but for the last 18 months they have steadily risen. I have been told that I was high risk. But that evidently can change.

I have been told by my local MD that I should start treatment. The more I think about it the less I like it. Why make myself miserable when I don't feel so bad now? I've already been thru chemo, surgery and radiation and am not anxious to start over.

I'm 69, very healthy and don't think living a long time is all that great

[Beacon Staff]

Re: Weekly Poll - Quality Of Life

by Beacon Staff on Thu Jul 19, 2012 4:33 pm

Hi msmullberry,

We're very sorry to hear that you have been battling breast cancer as well as smoldering myeloma and that you may have progressed recently to active myeloma.

Thank you for your additional feedback on the subject of how we can better serve smoldering myeloma patients. We will certainly consider all of the feedback and suggestions and try to offer more for smoldering myeloma and MGUS patients as well as active myeloma patients.

We're hoping that your appointment next week shows that you are still smoldering and that you won't need treatment yet!

[GeoGerry]

Re: Weekly Poll - Quality Of Life

by GeoGerry on Sat Jul 21, 2012 12:57 am

I answered Significantly Worse as I can no longer do the active things I was doing before trearment. I underwent intial drug therapy, Cyclophosphamide, Thalidomide, and Dexamethasone which did not work for me as I had adverse reactions and a suitable regime wasn't possible. I then underwent Stem Transplant and picked up bad infections while my immune system was low. I spent 4 days in ICU followed by three weeks in the haemetology ward of the hospital. I have been out of hospital for 10 weeks and still have no energy and have trouble eating as my kidneys were adversly effected by the infections. At present there appaers to be no improvement and my Heamatologist and Kidney specialist say it just time but can not tell me how long. I try to go to work two days a week but only last about 5 hours before I loose concentraion.despite these issues I am told the underlying treament for my multiple myeloma has gone well.

[lys2012]

Re: Weekly Poll - Quality Of Life

by lys2012 on Sun Jul 22, 2012 9:46 pm

I answered sig. better believe it or not!

I was sick for literally years, before getting very sick and admitted to the hospital, where they figured out I had Multiple Myeloma.

Then it was a year of treatment / recovery (chemo, stem cell transplant)

And now I feel pretty good!

One of my issues at diagnosis was hyperviscocity. I had severe migraines for at least a year (like we are talking a migraine a week). and the myeloma protein was causing nerve problems with my leg, eyes, hands which I gather is not a common presentation, so that is why it took so long to figure me out? Other more common stuff like nosebleed left me weak and anemic.

Also my age makes it rare, so at the time it was really rare since I was around 30 when I started feeling sick. Some of my other problems related to the infections i would get that would get bad, quick and cause damage. (Sinus/ Ear) I am left with some vertigo, but at diagnosis I had frequent vertigo, so I was not able to drive

They thought I had MS but all the MS tests were negative. On a side note, neurologists are not very good at diagnosing Multiple Myeloma. The MS doctor said I was the only case he ever heard of where possible MS turned out to be multiple myeloma.

So here I am back to feeling like a young 30 something! Able to do what I want and back to living life, not feeling sick all the time! now I fatigue easily, so I need to get my beauty sleep, but I just love that my head is clear again, I don't have migraines, vertigo, vision issues (for the most part).

So yeah everyone with myeloma is different, but I have never talked to anyone who presented like me

[Reppot]

Re: Weekly Poll - Quality Of Life

by Reppot on Tue Jul 24, 2012 2:40 pm

I was diagnosed with anemia by my primary two years before I was told I had multiple myeloma. His treatment the first year was 1 iron pill, second year 2 iron pills. Didn't work and fatigue was getting worse. He finally sent me to an oncologist where I was diagnosed with multiple myeloma. Actually I could have had multiple myeloma for the two years and totally unaware.

I am on chemo once a week with Velcade, Cytoxan and Dex. Have down days but overall, except for the Dex days with no sleep, the fatigue is at a minimum compared to the two years diagnosed with anemia.

Best of health.........

[rbartizek]

Re: Weekly Poll - Quality Of Life

by rbartizek on Tue Jul 24, 2012 10:04 pm

I said moderately worse, mainly because of the lingering effects of several compression fractures in my spine. Like others, my condition was not properly diagnosed for several months, during which I was unknowingly doing more damage.

Also, it's been 17 months since ASCT and while my stamina has improved a lot, it is well below BMM levels. And I have a frequent battle with diarrhea, caused to some degree by Revlimid maintenance therapy.

All that said, in some ways life is better, especially at the times I contemplate the care and concern I received from professionals, friends and even people I hardly know.

[Dot M.]

Re: Weekly Poll - Quality Of Life Now Compared To Before Mye

by Dot M. on Sat Feb 21, 2015 2:20 am

My life is slightly better. I mean mentally.

Before I was diagnosed, I slept a lot, just felt exhausted and began thinking I was nuts. I had 5 broken vertebrae and a couple of ribs broken. I was diagnosed with a couple other things before I went in the hospital for my 3rd kyphoplasty (back surgery).

So, since I now know what is wrong with me, I am relieved. Not that I have cancer, but that I know what I have and can work to do my best to keep on keeping on.