[mowgli18]

Re: Working with multiple myeloma

by mowgli18 on Wed Jan 23, 2013 1:20 pm

I was diagnosed stage 3 in April 2011 with multiple lesions on my spine, ribs, head but my only complaint at that time was severe shortness of breath and anemia. My boss was good during my initial treatment (revlimid-dex-velcade) which required once or twice a week visits to the doc and a couple of times for tests and transfusions. I was able to bring my computer with me and work during treatment and at home so I never really stopped working. That treatment actually made me feel a lot better than I felt originally although I coughed once or twice during that period and cracked ribs (that required a couple of days of not moving around). I was able to work from home during the intense chemo when I was neutropenic and taking the shots to retrieve stem cells. The only time I was severely limited from work was the month that I had my auto stem cell transplant and was very sick to my stomach throughout it. Recovery was slow but I went back to work about 5 weeks after my transplant and have worked ever since. I did not do any maintenance therapy until recently when my counts started to climb again. I still feel normal. I also want to work as long as I can because of my insurance (which is awesome and my company covers all the deductible) and also because it makes me feel "normal" which is huge considering our disease. I am now working full time plus I freelance on the side so my hours are really busy. I'm okay with that and as long as I have a flexible job I'll keep going like this.

[coop223]

Re: Working with multiple myeloma

by coop223 on Wed Jan 23, 2013 2:29 pm

I retired after 35 years of federal service. Felt it was time to go do the things in life that work interfered with as my job required constant travel. Life is good for now.

[NStewart]

Re: Working with multiple myeloma

by NStewart on Thu Jan 24, 2013 2:28 pm

I've been working full time as a physical therapist since my diagnosis in 2008 except for 3 months in 2009 for a fractured humerus and 3 months in 2010 for ASCT. At times it has been quite hard because of concentration problems and fatigue, but most of the time it's ok. I have recently started treatment again and will need radiation for a problematic bone lesion in my fibula. I'm planning on either cutting back my hours to 20-24 a week or retiring. It's beginning to be too much to have to get up early for work every day, make doctor appointments, etc.

You will know what you can handle and what you are willing to give up to continue working. If bone pain is such a problem, you need to make sure that it is being addressed by your oncologist or a pain specialist.

[Ron Harvot]

Re: Working with multiple myeloma

by Ron Harvot on Fri Jan 25, 2013 12:46 am

I like many on this board are too young for Social Security and therefore, due to the costs of the treatments, have no choice but to continue working to keep our insurance. Having said that, work has benfits. It keeps you active either mentally or physically and in some cases both, depending upon what you do for a living. When you work you feel productive and usefull. You get out and interact with people and it takes your mind off of your disease as you are focusing on other thngs. All of these are positives. So yes, I must work but I also enjoy working and contributing, and will do so if I can, until I am at least 67. (I am currently 60.) That is when my wife qualifys for medicare and she has her own health issues. I say at least, because if I can, I might continue longer.

Ron

[Dan D]

Re: Working with multiple myeloma

by Dan D on Fri Jan 25, 2013 1:14 am

To be forced to give up a (rewarding) job is to add horrible insult to horrible injury IMHO. It is a scary thought, but if I was unable to work, my family would essentially descend from a high quality of life to probable bankruptcy. Maybe that means no college tuition in the future - I would have no assets -- but it also means defaulting on mortgage payments. And as I see it, social security, workers comp etc. are a joke in terms of compensation -- at least for me.

A goal of any treament should be to promote a good quality of life, and that includes having the option of working. This disease my be incurable but it is becoming eminently treatable.

[janner]

Re: Working with multiple myeloma

by janner on Fri Jan 25, 2013 2:35 pm

In 2000, I had my first autologous stem cell transplant, and was out of work for one year. When I returned to work, I got tired very easily, and ended up with pneumonia. I was able to then take another year off. When I returned to work the second time, I only did part-time, and even then I was very fatigued and felt sick most days. The solution for me was to retire on medical disability, so I can monitor my fatigue and rest when I need to. That has worked very well for me for the past 11 years, and I can carry on with my life at a slower pace. I think it has really contributed to this long remission.

[Thom]

Re: Working with multiple myeloma

by Thom on Sat Jan 26, 2013 11:19 am

At 56, I had never heard of multiple myeloma until I was diagnosed with it. While getting out of bed one morning, I collapsed to the floor with severe paralyzing back pain and was taken to the ER via ambulance. It turned out that three of my thoracic vertebrae collapsed as a result of my previously undiagnosed multiple myeloma. My biggest concern was the possibility of not being able to walk again. Did a couple of weeks of rads, had a back brace, learned to walk with a walker and five cycles of Velacde and Dex, then four more cycles of Velcade, Dex and Revlimid. Broke six ribs and my pelvis along the way, had acute renal failure, threw DVT's, had more rads on my sacrum and pelvis and was collected for a SCT. I had an autologus SCT and also contracted GVHD and then had some vascular issues and threw more DVTs.

For my first 8 months, I was on full salary continuation but my employer made me apply for disability after four months. They even provided a legal firm to help with the process. Thanks to the lawyers, I received SS disability approval after another three months (total of seven months after diagnosis). Another 24 months after approval, my Medicare insurance kicked in. Long story short, I wasn't much able to work due to my back and the fact that for about the first two and a half years I averaged 3.5 days a week in hospitals, at doctors offices, in labs, at phys therapy and other medical type appointments. Very hard to hold down a job with my physical limitations and medical appointment schedule.

Several of my multiple myeloma markers, ie: Lambda light chains are very elevated (as much as 2,000% above the high end of normal). I've developed more lytic lesions in my femur and skull, recently had more rads and am not a candidate for a seconf SCT. Now I'm one of the so called 47% collecting long term disability, SS disability and Medicare. Life is good!

[Marie64]

Re: Working with multiple myeloma

by Marie64 on Sat Jan 26, 2013 1:04 pm

Thanks everyone for your input. It validated what I have thought all along. Sometimes you just need that affirmation.

[Snip]

Re: Working with multiple myeloma

by Snip on Sat Jan 26, 2013 1:06 pm

It was pretty straightforward for me: my back broke in two places, and it was subsequent to that (3 months after, actually) that they diagnosed me with stage 3-4 multiple myeloma in January, 2010. So, obviously, I wasn't working. And I never went back: between the back, the radiation and Velcade/Dex, and then the ASCT in Sept 2011, it was all too intense.

And now I am on permanent disability, as the ASCT significantly damaged my heart.

Fortunately, I own a business that is able to support me financially, albeit there was some serious stress initially getting the business to a place where I didn't need to be there anymore (I was the cornerstone at the time my back broke, so we were in trouble.)

All in all, I count myself very fortunate... it could have been very very much different for us financially. God is good.

[GeorgeLJurak]

Re: Working with multiple myeloma

by GeorgeLJurak on Sat Jan 26, 2013 5:21 pm

I am 1 year out of a ASCT and am on Revlimid maintenance. Although, there are times that I get so fatigued that it is hard to function, I continue to work each day. I also exercise and, being single, I mhave lots of home work to do. If it wasn't for me keeping busy, then I would go nuts, fretting over my cancer. It is difficult to maintain my busy schedule and sometimes I just want to quit, but then that voice goes off in my head and says, "Keep Moving and Doing".