[Beacon Staff]

Weekly Poll - How Much Did You Know About Multiple Myeloma? - 2011

by Beacon Staff on Wed Oct 12, 2011 2:06 pm

Welcome to another edition of The Myeloma Beacon’s “Weekly Poll”.

This week’s question is about what you knew about myeloma before you were diagnosed with it.

A few clarifications:

First, this question is intended for readers who have either active or smoldering multiple myeloma, as well as caregivers and relatives of myeloma patients.

Second, if you are a caregiver or relative of a myeloma patient, please answer focusing on what *you* knew about myeloma at the time your relative or the person you care for was diagnosed with myeloma.

Once you have answered the question above, feel free to add whatever comments you feel might be relevant in the discussion below.

[xstemboatr]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by xstemboatr on Wed Oct 12, 2011 3:52 pm

My husband was diagnosed with multiple myeloma and neither of us had ever heard of it. We confused it with melanoma (as I think many people do) !? But, now we are very well educated and are educating many of our friends along our way.

[Christina1952]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by Christina1952 on Wed Oct 12, 2011 11:38 pm

When I was diagnosed, it was quite a shock. I had been misdiagnosed with a sprain rather than a compression fracture. Fast forward a year and half ,when I went to a back doctor to check on kyphoplasty. After the MRI, he had me come in on a Friday at 5 pm and said you have bone cancer. Of course, I was never the same , and had never even heard of multiple myeloma. Unfortunately, I had to endure a bone biopsy in T 10 to get the diagnosis. ( that's something I stll wond about, was it necessary?
Well, all that is in the past, but still, here I exercised,was a vegetarian for 25 years, meditated, taught meditation, practiced Buddhism for 15 years, and was a Quaker from age 18.
So, of course, one wonders, why and what??
Still, I have a great life,great husband and two great children.

Christina
Dx 2005
Sct 2006
Relapsed 2010
Rev/ dex 9 cycles
CR no chemos since June 2011

[mlweezieclark@yahoo.com]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by mlweezieclark@yahoo.com on Thu Oct 13, 2011 10:51 am

came as a complete surprise!! exercised daily lot of energy went for yearly checkup found out I was anemic
While waiting for diagnoses continued to do my daily walk that resulted in a blood transfusion then a hip biopsy and skeletal xray. Along the way I was getting the slow sink I had cancer. When my Dr. told me I was a very very sick lady it was surreal. I had a complete response in 4 months using targeted therapy- 19 months Just started treatment with sub q shot Velcade the d in Velcade should be change to k it really was a piece of cake compared to hours in an infusion chair. Continuing to be challenge by the new normal with the help of prayers. friends and family
Oh yes good antidepressant and ativan (when needed) especially when your talking to a mail order drug company that your insurance is making you use ugh!!!!! Best to all of you. mary louise

[Christa's Mom]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by Christa's Mom on Thu Oct 13, 2011 12:32 pm

EJ was three hours away from home, having emergency surgery for a ruptured colon when they discovered a lesion on his rib. The next day, the doctor came in to talk to us. He told me when we got back home EJ would need to see a "heomotology oncologist to rule out multiple myeloma." I had no idea what a "heomotologist" was, and ruling out also meant ruling in. The only thing I took away from the conversation was that EJ probably had cancer. I was scared to death.

Lyn

[kelleykl]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by kelleykl on Thu Oct 13, 2011 2:43 pm

My husband was diagnosed with Multiple Myeloma around the last week of July 2011. We had never heard of it before. However, I did know something was wrong with him for months,as he had compression fractures in his spine, was losing weight, couldn't work, the list went on and on. Finally found a doctor (after 4 months) who could diagnose him and send us to a hemotologist/oncologist. News was devastating for both of us. He just started the Revlimid this past Saturday night, followed by 40 MG of Dexo (steroids) yesterday. After reading this site, I am hoping he can take all meds at a reduced level in the future.

[ninja performance]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by ninja performance on Wed Nov 16, 2011 9:57 am

My wife and I knew nothing, never even heard of it, before I was diagnosed Stage 3 on August 4th 2011. Now we know a LOT about it.

-Chris

[Live4Health]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by Live4Health on Wed Nov 23, 2011 10:21 pm

I have MGUS, and I'm praying that it doesn't progress/evolve to multiple myeloma. I had heard of multiple myeloma, and knew it was one of the "liquid cancers", and that it started from one immunoglobulin that had an overgrowth. I did not know the specifics, or how it differed from lymphoma or leukemia.

[Nancy Shamanna]

Re: Weekly Poll - How Much Did You Know About Multiple Myelo

by Nancy Shamanna on Mon Dec 05, 2011 9:56 am

I have two friends from other interests that have multiple myeloma also. One was ill before my diagnosis...he had a stem cell transplant and I could see how pale and tired he was during that time. The other friend was diagnosed after me, that was also a complete surprise. So although I was shocked to learn I had multiple myeloma, i did know a little about it. It didn't help me to diagnosis myself though....it was my daughter, a med school student, who had just studied bone health in class and suggested I get my blood tested for the presence of light weight protein, and total protein. The fractured vertebrae were the 'tip off' to get the test done, and thank heavens they did test me at that time, and start treatment, for I was seriously ill then, but am now in a remission!