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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.

Re: Working with multiple myeloma & disability

by greg matthews on Wed Jul 18, 2012 3:34 pm

Thank you all for the responses, it has helped. I am still battling with the thought of retirement at 49 years old.

greg matthews
Name: Greg Matthews
Who do you know with myeloma?: myself
When were you/they diagnosed?: 12-28-2010
Age at diagnosis: 48

Re: Working with multiple myeloma & disability

by NStewart on Sat Jul 21, 2012 2:27 pm

I'm a little late to this conversation, but I've been working since I was diagnosed except for 3 months following a pathologic fracture of my left humerus and 3 months for the ASCT. I work in an outpatient physical therapy practice treating people with cancer. So, I am around people with compromised immune systems all of the time. I am just really careful about making sure that I wash my hands before and after each patient, clean all of my equipment between patients, and send people home if they appear sick at all. This is for my protection and for the protections of my patients - many who are in active treatment with chemo and/or radiation while I am treating them.

The first year after my transplant I got a significant respiratory infection every 2-3 months. During the second year I've only had one respiratory infection. My oncologist has now given me a prescription for a Z-pack antibiotic so that I always have some on hand if I need them. So far I've only used one fill of the prescription in a year.

So, having multiple myeloma doesn't mean that you need to go on disability or retire unless your health really is negatively affected by your job. You can always go back to work once on disability if your health improves enough to make it ok. Whatever you decide to do make sure that you learn all of the do's and don'ts about each option.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Working with multiple myeloma & disability

by greg matthews on Sat Jul 21, 2012 3:48 pm

To all responders to this post - Thank you. Me going on SSDI is not set in stone.

I have a very stressful job and it does effect at times. I guess I better give more detail.

I did an autologus stem cell transplant in May of 2011 (December 2010 I was diagnosed) I did 3 rounds chemo (I worked and also worked out the whole time) prior to stem cell collection. May 15th 2011, I was blasted with the chemo and on the 17th the transplant. I was in the hospital 3 weeks and 1 week out patient . Flew to California to recover for 6 weeks. I returned to work and have not stopped. As I said, though, my job is stressful and getting worse and I know what stress does with cancer.

I am still working on my home, mowing my yard, running, and lifting. I do this to relieve the stress and I live alone. I have no caregiver with me. So, at times, the facts hit me hard. I rebound from it.

I think I am going through the motion right now because I don't know the process. First off is the VA. I have to deal with them first. I have to get my combat service connected disability done first and then file for the contaminated water at Camp Lejeune.

I will continue to work ... I just wanted some advice on doing the filing and if anyone had issues doing it. SSDI will be the last result for me.

Good Luck to you all and God Bless

Thank you for the advice.

Keep up the fight

Greg Matthews

Semper FI

greg matthews
Name: Greg Matthews
Who do you know with myeloma?: myself
When were you/they diagnosed?: 12-28-2010
Age at diagnosis: 48

Re: Working with multiple myeloma & disability

by alaskanmeg on Mon Jul 23, 2012 1:49 pm

At the VA here in AK, we have a Nurse Oncologist who intercedes and advocates for us at all levels. I would have been completely lost without her. Meg

alaskanmeg
Name: alaskanmeg
Who do you know with myeloma?: me
When were you/they diagnosed?: 15 June 12
Age at diagnosis: 49

Re: Working with multiple myeloma & disability

by MM wife on Thu Jul 26, 2012 10:13 pm

Hi Greg,

I'm not sure if someone has already mentioned this yet, but your hospital and/or oncologist should have a social worker in the practice who can give you information and help point you in the right direction. My husband is being treated at University of Michigan for multiple myeloma and we met with a social worker there who gave us an overview of what to expect about the process. Very informative and realistic info.

Like you, he is getting near the point where he may decide to apply for disability because it's getting harder for him to work. We recently met with an attorney to get our legal affairs in order and she is also researching if he is eligible for disability yet. I read the Social Security website info and it sounded as if it was an automatic approval if you have a SCT, which my husband has not had to do yet. He's getting carfilzomib (Kyprolis), Revlimid and dex. He reached a very good response after 6 months to 0.1, but has hit a plateau – still at 0.1 for the last 6 months. Also has had complications of deep vein thrombosis (DVT), difficulty breathing, infections, and other various side effects. So the combination of the complications and side effects are wearing him down when work is added on top of it all.

Best of luck to you and I hope you can get disability soon so you can eliminate the stress of working.

MM wife

Re: Working with multiple myeloma & disability

by abella134 on Wed Feb 11, 2015 9:28 pm

Recently diagnosed with multiple myeloma and third set of dex (20mg) / Velcade (0.7). So far no side effects at the moment, except GI upset.

I had been planning to file for SSDI due to my service-connected disabilities from the VA but with current multiple myeloma, I am heading to SSDI and will apply to extend my DSL from work and the six-month California waiting period.

Battling with renal failure right now, but God is in control.

abella134

Re: Working with multiple myeloma & disability

by bluemountain on Thu Feb 12, 2015 12:58 pm

I never stopped working. I took 2 weeks for back surgery and maybe a total of 4 weeks for the transplant. Otherwise, I have not missed much.

Work keeps me alert and involved with life beyond myeloma. I own the business and I can get out if I have to, but I will not until I absolutely have to. I just think staying involved and keeping as much routine in place keeps our minds and body active.

Good luck to you all. Diagnosed March 19, 2012!

bluemountain

Re: Working with multiple myeloma & disability

by cdc110jw on Thu Feb 12, 2015 5:20 pm

I had my 2nd SCT in late October 2014. My recovery has been slower this time since I was in relapse and my overall health not as good. My husband and I decided I would apply for SSDI. I was approved within 3 weeks of submitting the application, but payments will not begin until April.

I hope to return to work eventually, if only part-time. I agree that keeping active is important. Except for stem transplants and recovery times, I managed to keep working full time since my diagnosis in October 2007. My job provides short-term disability for 6 months. I'll apply for long-term disability in the near future. My boss is very supportive and willing to help me negotiate returning to work when and if I'm able.

I know Social Security allows you to work part-time. Does anyone know the maximum number of hours? I haven't found that information on their website.

Be well--

cdc110jw

Re: Working with multiple myeloma & disability

by Joneman on Thu Feb 12, 2015 6:53 pm

If you have multiple myeloma, you automatically qualify for Social Security Disability. No argument. After you have received disability for two years, you automatically receive Medicare for your insurance. Regardless of your age. I went on SSA Disability at 52 years of age.

Joneman

Re: Working with multiple myeloma & disability

by SharonPascoe on Fri Feb 13, 2015 5:06 am

If I apply for disability, and get it, don't I have to leave my high stress job and the good insurance it provides?

Don't you get Medicare medical coverage with disability?

SharonPascoe

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