Do most people continue working as they battle multiple myeloma?
My husband has lambda light chains in his urine. That's all we know. We do not know if it is MGUS, smoldering, or actual myeloma. He is fatigued, pale, nauseated and has nerve pain as of three months ago. We see an oncologist today and know that there are a lot of tests coming. I have a horrific knot in my stomach. My sister-in-law died due to complications of this disease and amyloidosis, and she really could not function enough to hold a job very long. But her case was extreme and found at stage 2.
I hate seeing him go to work every morning because he is so tired and he is in pain with his nerves on fire. If he has myeloma, should he apply for SS disability right away? Or should he wait until he can't work anymore and then file? Or do many of you continue working? I have no idea what to expect. I am not sure how long it takes to get disability?? Does anyone have some answers about all of this for me?
I am still hoping he has MGUS or Smoldering, but with his symptoms, it's hard telling. Scared.
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Re: Can most people continue working with multiple myeloma?
I think the thing that you need to wait for are the results from all of the tests that your husband is having. If he does have active myeloma and starts treatment, many of the problems that he is currently experiencing likely will get better and your husband will start to feel better.
Has your husband used up all of his sick time at work, if he has sick time with his job? Does he have disability insurance through his employer? These are the things that you should find out and find out what the limits are. If these have already been used up, or don't exist, then you can consider applying for SS Disability. There is a fair amount of paperwork that you will have to supply to apply for SSDI. One of the important things is that you need to supply information as to what parts of your husband's job he is unable to perform because of his diagnosis. There are people on this forum who know much more about the process than I do. I suggest that you post in the Insurance section of the forum to ask questions about applying for SSDI.
I worked all of the time from when I was diagnosed until I retired at age 66. I was out on disability following a fracture of my left arm where I had bone lesions and then when I had my autologous stem cell transplant. I worked in healthcare as a physical therapist treating people with cancer one on one. So, I had a lot of up close and personal contact with people who were also immune compromised. Each person's ability to work is different depending on what their job requires and depending on how the myeloma affects each of us.
I hope that your husband receives the treatment that he needs soon so that he can begin to feel better.
Nancy in Phila
Has your husband used up all of his sick time at work, if he has sick time with his job? Does he have disability insurance through his employer? These are the things that you should find out and find out what the limits are. If these have already been used up, or don't exist, then you can consider applying for SS Disability. There is a fair amount of paperwork that you will have to supply to apply for SSDI. One of the important things is that you need to supply information as to what parts of your husband's job he is unable to perform because of his diagnosis. There are people on this forum who know much more about the process than I do. I suggest that you post in the Insurance section of the forum to ask questions about applying for SSDI.
I worked all of the time from when I was diagnosed until I retired at age 66. I was out on disability following a fracture of my left arm where I had bone lesions and then when I had my autologous stem cell transplant. I worked in healthcare as a physical therapist treating people with cancer one on one. So, I had a lot of up close and personal contact with people who were also immune compromised. Each person's ability to work is different depending on what their job requires and depending on how the myeloma affects each of us.
I hope that your husband receives the treatment that he needs soon so that he can begin to feel better.
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 most people continue working with multiple myeloma?
As Nancy has indicated, everyone has different experiences. I was diagnosed in February 2009 and work full time and expect to continue to work until I turn 67 in a little over 3 years. I have an office job and an understanding employer. I have only missed work for partial days that I receive treatment or have doctor visits. I did not have an autologous stem cell transplant (ASCT). Those that received ASCT would have missed work during the recovery from that procedure, which may take a couple to a few months.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Can most people continue working with multiple myeloma?
Thanks for your answers.
He is a computer guy and does have to go to client sites sometimes, but often works in an office. Probably the worst part for him would be walking from the parking garage to his office. It's a block and a half I suppose. I am glad to know that some of those things he is feeling will get better with treatment.
It's so hard for me to know because all I have to compare is his sister. She had the organ damage of amyloidosis. She was short of breath and had a horrid cough for over a year and lots of fluid retention. She didn't go to the doctor, so hers was fairly advanced when she got so sick. She was really too sick to work most 90% of the time. But if he only has myeloma, it should not be so tough from what you have said.
He has nausea, lightheadedness, and neuropathy. This all started in June. Boom!!! He went to Denver on a trip and returned, only to feel terrible fatigue and all of the symptoms I mentioned. I suppose there is still a chance for this to be MGUS or smoldering myeloma, since some people feel bad in those diseases as well.
We have been through so much already. Now we start another battle. I am so weary of cancer. If he has myeloma, it would make five cancers between the two of us. I will imagine they will do the genetic tests on him. He's got to be missing some genes or something. Poor man has beat all the other cancers and now is faced with whatever this is. Not for the fainthearted.
Thanks. I will inform people when I know more. I know too much to be pleasantly ignorant and enough to be afraid, too. Yet I know that there are a lot of new treatments even from when his sister was being treated a year ago. The dad had kappa myeloma and is alive 20 years later. He was treated only with melphalan and prednisone! That's all they had 20 years ago. Still in remission. Takes 5 mg prednisone per day.
I will also look in the insurance section, too. Again, thanks. I feel half nuts right now.
He is a computer guy and does have to go to client sites sometimes, but often works in an office. Probably the worst part for him would be walking from the parking garage to his office. It's a block and a half I suppose. I am glad to know that some of those things he is feeling will get better with treatment.
It's so hard for me to know because all I have to compare is his sister. She had the organ damage of amyloidosis. She was short of breath and had a horrid cough for over a year and lots of fluid retention. She didn't go to the doctor, so hers was fairly advanced when she got so sick. She was really too sick to work most 90% of the time. But if he only has myeloma, it should not be so tough from what you have said.
He has nausea, lightheadedness, and neuropathy. This all started in June. Boom!!! He went to Denver on a trip and returned, only to feel terrible fatigue and all of the symptoms I mentioned. I suppose there is still a chance for this to be MGUS or smoldering myeloma, since some people feel bad in those diseases as well.
We have been through so much already. Now we start another battle. I am so weary of cancer. If he has myeloma, it would make five cancers between the two of us. I will imagine they will do the genetic tests on him. He's got to be missing some genes or something. Poor man has beat all the other cancers and now is faced with whatever this is. Not for the fainthearted.
Thanks. I will inform people when I know more. I know too much to be pleasantly ignorant and enough to be afraid, too. Yet I know that there are a lot of new treatments even from when his sister was being treated a year ago. The dad had kappa myeloma and is alive 20 years later. He was treated only with melphalan and prednisone! That's all they had 20 years ago. Still in remission. Takes 5 mg prednisone per day.
I will also look in the insurance section, too. Again, thanks. I feel half nuts right now.
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Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Can most people continue working with multiple myeloma?
Hi again,
We had our appointment. Not sure if I like the guy yet or not. He sort of hassled my husband about his weight and about having a diet pop once a day. He told us to not get excited about the lambda light chains in his urine. He said that the kidneys can spill that type of thing if the kidneys are damaged or if he has a renal disease. He said many other things can cause the light chains to be spilled. He told us that curcumin is snake oil and that it can even be harmful. So who knows what to think.
All I know is that I am probably hyper sensitive and fearful because I walked down the myeloma/amyloidosis trail with my sister-in-law and she had a very hard time for three years. So those pictures are in my head. He said that all myeloma is different for everyone. Everyone's disease acts differently. So we cannot compare anything to his sister.
Bone marrow biopsy on Monday. Ten days from then, we will find out the results. He told us to not get excited or worked up about it. So maybe I can take a breather for awhile until we know what's going on. I assumed it was myeloma because of his dad and his sister. Hoping it is not. Thanks for bearing with me. I will update when I know more.
We had our appointment. Not sure if I like the guy yet or not. He sort of hassled my husband about his weight and about having a diet pop once a day. He told us to not get excited about the lambda light chains in his urine. He said that the kidneys can spill that type of thing if the kidneys are damaged or if he has a renal disease. He said many other things can cause the light chains to be spilled. He told us that curcumin is snake oil and that it can even be harmful. So who knows what to think.
All I know is that I am probably hyper sensitive and fearful because I walked down the myeloma/amyloidosis trail with my sister-in-law and she had a very hard time for three years. So those pictures are in my head. He said that all myeloma is different for everyone. Everyone's disease acts differently. So we cannot compare anything to his sister.
Bone marrow biopsy on Monday. Ten days from then, we will find out the results. He told us to not get excited or worked up about it. So maybe I can take a breather for awhile until we know what's going on. I assumed it was myeloma because of his dad and his sister. Hoping it is not. Thanks for bearing with me. I will update when I know more.
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Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Can most people continue working with multiple myeloma?
Good luck, Sister In Law. Please let us know what you and your husband find out after the BMB.
Mike
Mike
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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 most people continue working with multiple myeloma?
Sister in Law: Very sorry to hear about your husband's situation. I think everyone is right – take deep breaths, appreciate each good moment, and spend some time, if you can do it without getting too tense, by learning more about multiple myeloma.
I am a professor, and when I was diagnosed and started chemo, I kept working but I kept slipping further behind in my duties. My department really came through and helped me out at the end of the semester to get caught up. When I had my autologous stem cell transplant (ASCT), I was out for an entire semester and burned up most of my sick leave and personal leave; I worked as much as I could, but it was about 25% of normal. Since then, I have regained some of my strength, and this semester I am working full time, although we have made some accommodations to enable me to function (such as teaching online and doing some administrative work).
So, I agree that making sure you understand the disability insurance situation at your husband's employer is vital, knowing how much sick and leave time he has, and walking through their policies regarding leave and when disability would be triggered are all important things to do.
Depending on how supportive the company is, it may also be very helpful for him to have a frank discussion with his HR staff about accommodations that could possibly be made that would enable him to be productive despite his current limitations. For example, can he work more from home? Can he work online rather than face-to-face? Can he contact clients via Skype or other forms of communication rather than direct visits (I'm also thinking here about reducing infection risk). Can he be shifted to some more administrative tasks? I would also DEFINITELY if he has multiple myeloma or something else, consider asking for at least a temporary disability tag for the car. This should allow him to park much closer to the building and reduce the stress and energy drain on walking to the office.
As Nancy indicated, we all vary in how multiple myeloma affects us, but we also vary in how the treatment affects us. Having that parking tag made a big difference for me. It was not a permanent tag and I am back to walking now, but while I was on Revlimid, Velcade, and dex (RVD), it **really** was helpful.
My take-home here is that there really are things you can do that may increase his ability to work, to feel productive, and to prepare for treatment, etc. Multiple myeloma has come a long way in the past few years, especially in the past decade. The better prepared you are and aware of where the boundaries are, the better you can both adapt.
My thoughts are with you both.
-Anton
I am a professor, and when I was diagnosed and started chemo, I kept working but I kept slipping further behind in my duties. My department really came through and helped me out at the end of the semester to get caught up. When I had my autologous stem cell transplant (ASCT), I was out for an entire semester and burned up most of my sick leave and personal leave; I worked as much as I could, but it was about 25% of normal. Since then, I have regained some of my strength, and this semester I am working full time, although we have made some accommodations to enable me to function (such as teaching online and doing some administrative work).
So, I agree that making sure you understand the disability insurance situation at your husband's employer is vital, knowing how much sick and leave time he has, and walking through their policies regarding leave and when disability would be triggered are all important things to do.
Depending on how supportive the company is, it may also be very helpful for him to have a frank discussion with his HR staff about accommodations that could possibly be made that would enable him to be productive despite his current limitations. For example, can he work more from home? Can he work online rather than face-to-face? Can he contact clients via Skype or other forms of communication rather than direct visits (I'm also thinking here about reducing infection risk). Can he be shifted to some more administrative tasks? I would also DEFINITELY if he has multiple myeloma or something else, consider asking for at least a temporary disability tag for the car. This should allow him to park much closer to the building and reduce the stress and energy drain on walking to the office.
As Nancy indicated, we all vary in how multiple myeloma affects us, but we also vary in how the treatment affects us. Having that parking tag made a big difference for me. It was not a permanent tag and I am back to walking now, but while I was on Revlimid, Velcade, and dex (RVD), it **really** was helpful.
My take-home here is that there really are things you can do that may increase his ability to work, to feel productive, and to prepare for treatment, etc. Multiple myeloma has come a long way in the past few years, especially in the past decade. The better prepared you are and aware of where the boundaries are, the better you can both adapt.
My thoughts are with you both.
-Anton
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
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