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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Working with multiple myeloma

by Marie64 on Sat Jan 19, 2013 7:29 pm

I am curious how many continue to work after diagnosis and if not, when did you decide that you couldn't do it anymore? What issues have you encountered with insurance coverage for treatment?

Marie64
Name: Marie
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 2010
Age at diagnosis: 45

Re: Working with multiple myeloma

by Mary T on Sat Jan 19, 2013 10:20 pm

I am smoldering since 2007 with increasing bone pain over the last year. I am finding it very challenging to work. My concentration, attention to detail, and ability to manage the physical demands of my job are very concerning to me. I am nervous I will make mistake that could get me fired. My labs are fairly stable. I never thought I would need to consider disability prior to beginning actual chemo. So far, I have only been on Aridea and prophylactic medicines.

I am also very interested in hearing in how people decided it was the right time. I worry about making a bad decision at a bad time.

Mary T

Re: Working with multiple myeloma

by terryl1 on Sun Jan 20, 2013 9:13 am

I have been able to work through 8 cycles of carfilzomib/Revlimid and dex (May through Dec. 2012). I am now on low dose Revlimid alone. While on the full regimen, there were days that I felt lousy, queasy and fatigued. However, my major goal is to feel "normal" again, if that is possible, and my ability to work is part of the process. I think the lousy days were due to the aftermath of the dex. Now, on maintenance, I feel pretty much normal and work is much like it was before myeloma became part of my lexicon. I was also lucky because I really had no major bone or renal problems at the time of dx. and I was closely monitored as a smolderer at the time I progressed.

If your bone pain is that bad, you should ask your doctor for more than a radiographic skeletal survey. In many cases, it will miss lesions and problems that a PET CT or MRI pick up. Good luck.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Working with multiple myeloma

by Nancy Shamanna on Sun Jan 20, 2013 10:42 am

Hi Mary, That does sound very stressful with trying to work while experiencing bone pain. Is your job situation such that you could drop back to part time work, or to a job that was not as strenuous? This cancer forces us into making adjustments, even at the 'smoldering' level. Probably you should take Terry's advice and get more scans done of your bones, in case your condition has slipped into the 'active' phase. Remember CRAB...'B' is for bone involvement.

My work is now part time, and although I am quite content with my situation, I realized that it might be difficult for me to ramp up my efforts to how I see many of my friends working full time. At my age a lot of people have started to retire also, so I feel that I am somewhere in the middle of a work life spectrum, and I do as much volunteering as I can too, but still get lots of rest.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Working with multiple myeloma

by Kevin J on Sun Jan 20, 2013 11:02 am

I was only anemic when diagnosed, so was not dealing with bone or kidney issues as so many others do. Consequently, I opted to continue working. I also have three children in college, so maintaining my income and keeping my health insurance also worked into the decision.

I am just finishing a two year trial with CRD and in retrospect, it might have been a better idea if I had reduced my hours a bit. I had to miss two days for treatment, three out of every four weeks for the first eight cycles, than two days every other week for the remaining 16 cycles. I worked 10-12 hour days, evenings, and weekends as needed to make up the missed time. Fortunately, my employer allowed me the flexibility to do so, but in hindsight I realize how much stress it has caused. It also hasn't helped that my father passed away this past year and as executor I've been working to get the estate through probate the past 8 months and am working to get the house ready to sell (if I hadn't had to deal with this, the work probably wouldn't have been as much an issue).

On the plus side though, I think continuing to work has really helped me divert my attention from battling cancer and focus on something much more productive.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Working with multiple myeloma

by Ron Harvot on Sun Jan 20, 2013 11:10 am

One of the things I have learned about multiple myeloma is that there is no standard reaction to the disease or treatment. I for one did not have a SCT but instead opted for VRD. I am still on maintanence. I was originally diagnosed with stage 2 light chain multiple myeloma but have been in remission for over 3 years. I have continued to work full time and am an avid bicycle rider loggin in over 4,000 miles a year including some races. My experience is not unique there are others that have done just as well an in some cases better (don't even need maintanence). That is the odd thing about multiple myeloma, you can't make generalizations.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Working with multiple myeloma

by Ron Harvot on Sun Jan 20, 2013 11:12 am

I should add that I have a very flexible work environment. I do miss time when I have to go for treatments but make it up with longer hours on other days. I also have the flexibility to do some work from home. Not everyone has those options.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Working with multiple myeloma

by terryl1 on Sun Jan 20, 2013 11:21 am

Hi Ron, your posts about biking have motivated me to get my butt in gear now that I am on maintenance. You put a youngin' like me to shame!

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Working with multiple myeloma

by lys2012 on Sun Jan 20, 2013 2:08 pm

Before my diagnosis I got very sick and could not work (fainting spells, couldn't eat, weakness, pain) When I heard the word cancer it was a shock, but I was so sick it made sense. I went on short term disability, after my transplant I went on disability. I came back to work part time about 18months after diagnosis. I was accommodated through the disability plan but after 2 years on the "plan" they had a reassesment of my disability and they decided I was well enough and terminated my coverage so I had to come to work 5 days a week. It has been a bit tough. I keep getting sick! I also notice mentally I'm not as sharp as I was before treatment, I have "chemo brain" so to speak. I trouble with memory recall, so organizing what I want to say and thinking of the right words. In all I'm doing ok, but my multiple myeloma has been in remission so I'm not dealing with any acute symptoms or anything now.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Working with multiple myeloma

by Alan on Sun Jan 20, 2013 9:00 pm

My multiple myeloma treatment commenced in 2011 after a tumour broke my sternum.
The treatment and radiography followed by chem interrupted work too much.
I asked my employer for leave just on 2 years ago and still can't return.
Bone pain, fatigue and general feeling crap restrict any positive time I could give to work.
My income protection plan runs out in 6 months here in Australia.......who knows after that

Alan

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