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Can you still work during myeloma treatment?
Anticipating the start of treatment within 6 months and I'm wondering what experiences everyone has had with work during treatments. Hopefully I will be part of a clinical study for high-risk smoldering myeloma. I work with patients myself and I am in very close proximity with about 20-30 people per day (and I rarely get a break!) Thank you in advance!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Can you still work during myeloma treatment?
I wonder what you mean by treatment.? I am currently doing chemo treatment of CyBorD [cyclophosphamide (Cytoxan), Velcade (bortezomib), and dexamethasone]. I am able to work a full time job at the moment but everyone handles it differently. I suffer from fatigue and have issues sleeping due to the dexamethasone otherwise I am okay. Of course when I have my stem cell transplant then I will be unable to work for awhile as I will need to keep my exposure to other people limited and I really don't know how I will feel. I've read other people's experiences and some people do okay and others feel very ill.
I hope yours will be an easy road.
I hope yours will be an easy road.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: Can you still work during myeloma treatment?
Gardengirl,
You don't say what kind of treatment you expect to begin in 6 months and why in 6 months and not now. I worked all during my induction treatment of Revlimid and Dex. Took 3 months off from work for my stem cell transplant and then worked full time until I retired June 2013 due to age.
I was a physical therapist working with people who had cancer and people with pelvic floor dysfunctions. So, a lot of hands on face to face treatment a minimum of 7 hours a day. There were times when I was really fatigued by working and times that I was fine. For 2 years post transplant I had a number of severe respiratory infections, I'm 4 years post transplant now, and shingles one time.
The biggest problem that I had was with some cognitive issues that slowly worsened over the last 2 years. The fact that all of our documentation transitioned to electronic documentation made things even worse. This was a major factor in my deciding to retire when I turned 66 rather than continuing to work. I felt fine physically, but the documentation was taking me way too long to complete each day and meant that I was working as much as 4 hours longer per day just to complete it.
Nancy in Phila
You don't say what kind of treatment you expect to begin in 6 months and why in 6 months and not now. I worked all during my induction treatment of Revlimid and Dex. Took 3 months off from work for my stem cell transplant and then worked full time until I retired June 2013 due to age.
I was a physical therapist working with people who had cancer and people with pelvic floor dysfunctions. So, a lot of hands on face to face treatment a minimum of 7 hours a day. There were times when I was really fatigued by working and times that I was fine. For 2 years post transplant I had a number of severe respiratory infections, I'm 4 years post transplant now, and shingles one time.
The biggest problem that I had was with some cognitive issues that slowly worsened over the last 2 years. The fact that all of our documentation transitioned to electronic documentation made things even worse. This was a major factor in my deciding to retire when I turned 66 rather than continuing to work. I felt fine physically, but the documentation was taking me way too long to complete each day and meant that I was working as much as 4 hours longer per day just to complete it.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Can you still work during myeloma treatment?
I was not allowed to work during my induction and through transplant. I had inpatient chemotherapy (VDT PACE) and had several hospitalizations due to white counts of zero and nausea and vomiting.
I am almost at one year post transplant and have been back to work as a nurse for about 3 months. Like Nancy, my cognitive skills are slowed, which makes it frustrating.Computer charting really does make it harder. I have struggled to learn to a new area of nursing since returning to the workforce. Keeping up with the pace of the unit is very difficult.
As for my health, I am on maintenance therapy, Revlimid, and am just now getting over some sort of bronchitis and chronic sinusitis. Bottom line I guess just as myeloma is different for everyone, so is their ability to work through and/or after treatment. Hope all goes well for you! Stay positive and healthy!
Grace <><
I am almost at one year post transplant and have been back to work as a nurse for about 3 months. Like Nancy, my cognitive skills are slowed, which makes it frustrating.Computer charting really does make it harder. I have struggled to learn to a new area of nursing since returning to the workforce. Keeping up with the pace of the unit is very difficult.
As for my health, I am on maintenance therapy, Revlimid, and am just now getting over some sort of bronchitis and chronic sinusitis. Bottom line I guess just as myeloma is different for everyone, so is their ability to work through and/or after treatment. Hope all goes well for you! Stay positive and healthy!
Grace <><
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WeatherNurse13 - Name: Gracie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 10/2012
- Age at diagnosis: 49
Re: Can you still work during myeloma treatment?
I really don't know what treatment I will be receiving. The specialist was very quick (and I sat there in shock; my brain too frozen to ask questions). He told me to think about it, took 5 vials of blood, and told me to come back next week, and that he is going to try to get me into a clinical trial.
But then don't I run the risk of being put in a placebo group? I'm a bit confused as to what I have been reading. Can high-risk smoldering myeloma even be treated outside of a clinical trial? If not, then I'm subject to what the trials offer.
I'm just worried. I don't know how my body will react. I have never taken any meds before!
Thank you all for your replies!
But then don't I run the risk of being put in a placebo group? I'm a bit confused as to what I have been reading. Can high-risk smoldering myeloma even be treated outside of a clinical trial? If not, then I'm subject to what the trials offer.
I'm just worried. I don't know how my body will react. I have never taken any meds before!
Thank you all for your replies!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Can you still work during myeloma treatment?
I too worked during treatment with Rev, Dex and Velcade. But it was very difficult. Fatigue was really bad and I came home exhausted each day. Like Nancy I took three months off for SCT and went back to work full time while I'm on maintenance (Rev 15mg). I had a very supportive employer which reduced my work load during treatment and allowed me to flex days off when necessary. I feel very fortunate to have had that option.
Sounds like your job will be pretty physical, you might want to consider a part time role until you better understand how treatment will effect you. Although I'm sure money is a issue and reducing your work hours reduces your pay right when you have more bills coming in for medical treatments.
Cancer sucks, there is just no way around it! Keep us posted as to what you find out and how your treatment will play out. Jerry.
Sounds like your job will be pretty physical, you might want to consider a part time role until you better understand how treatment will effect you. Although I'm sure money is a issue and reducing your work hours reduces your pay right when you have more bills coming in for medical treatments.
Cancer sucks, there is just no way around it! Keep us posted as to what you find out and how your treatment will play out. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Can you still work during myeloma treatment?
I have been on CyBorD for my 11th week of treatment. I work a very busy schedule at work and have not missed any time due to treatment. I take the Velcade weekly in a subq injection, oral cytoxan 800mg/wk, and 40mg oral Dex. It is a fantastic regimen for an active patient that needs to keep working.
In my case to keep my health insurance in place. The cost would bankrupt most of us if no insurance.
Fatigue is an issue but the more active I stay it is manageable. I am beat after a 10 hour day and some 50 hour weeks. I can't cut down much for fear of losing my health insurance. We have to maintain at 12 week rolling average of 38hrs/wk to keep health insurance. That might be a challenge some time in the future. I am fearful of that happening.
In my case to keep my health insurance in place. The cost would bankrupt most of us if no insurance.
Fatigue is an issue but the more active I stay it is manageable. I am beat after a 10 hour day and some 50 hour weeks. I can't cut down much for fear of losing my health insurance. We have to maintain at 12 week rolling average of 38hrs/wk to keep health insurance. That might be a challenge some time in the future. I am fearful of that happening.
Re: Can you still work during myeloma treatment?
I worked full time during 9 weeks of RVD induction therapy, took off about 6 weeks for my ASCT, then ramped back up to full time again over the next 8 weeks, which overlapped with the first couple weeks of my 6-week RVD consolidation phase.
I'm lucky in that my work is computer-based and I'm able to do it from home most of the time. I'm in maintenance therapy now and typically work from home 4 days a week and commute 1-hour each way to the office the other day. The commute tires me out more than I think it should. Just a fact of life.
As some folks have mentioned, cognitive impairment, or chemo brain can be a problem. My work requires pretty deep concentration most of the time, and there were some days during the induction phase and consolidation phase where I just couldn't focus like I needed to. It was very frustrating. But it got better as I moved into the maintenance phase.
I've been in maintenance since the end of Sept., and I still have trouble thinking of the exact word I'm looking for more often than I did before starting treatment, but it's a lot better than during the consolidation phase.
Good luck!
I'm lucky in that my work is computer-based and I'm able to do it from home most of the time. I'm in maintenance therapy now and typically work from home 4 days a week and commute 1-hour each way to the office the other day. The commute tires me out more than I think it should. Just a fact of life.
As some folks have mentioned, cognitive impairment, or chemo brain can be a problem. My work requires pretty deep concentration most of the time, and there were some days during the induction phase and consolidation phase where I just couldn't focus like I needed to. It was very frustrating. But it got better as I moved into the maintenance phase.
I've been in maintenance since the end of Sept., and I still have trouble thinking of the exact word I'm looking for more often than I did before starting treatment, but it's a lot better than during the consolidation phase.
Good luck!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Can you still work during myeloma treatment?
I think it is all relative. How do you feel right now? are you able to work? I don't see the "treatment" making you a lot sicker then you are now, unless it is intensive chemo (like SCT highdose chemo)
I was diagnosed with advanced myeloma. I was too sick to get out of bed when I was diagnosed, let alone work! After my first few cycles I was feeling better, but didn't got back to work because I was gearing up for my transplant, and the doctor told me i would not be working after that.
(I'm back at work full time now though! since about 9 months post transplant)
I was diagnosed with advanced myeloma. I was too sick to get out of bed when I was diagnosed, let alone work! After my first few cycles I was feeling better, but didn't got back to work because I was gearing up for my transplant, and the doctor told me i would not be working after that.
(I'm back at work full time now though! since about 9 months post transplant)
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Can you still work during myeloma treatment?
Thanks again for all the replies. I am an eye doctor (only working part-time as I have 2 children) and AM on my feet all day. My other concern is my susceptibility to viruses...many patients come in with colds and other stuff that I feel I have become immune to in my 22 years of practice...will that change?
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
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