[kevin from li]

Re: Can you still work during myeloma treatment?

by kevin from li on Sat Feb 08, 2014 9:51 pm

I've been working full time (accountant ) since my diagnosis 2 years ago. I'm currently being treated with combination of Pomalyst, Kyprolis, Cytoxan and dex. In the past I've been treated with Revlimid, Velcade (caused very bad neuropathy) and Kyprolis and Pomalyst alone. I have not had SCT yet.

There is definitely some chemo brain. I have to be very careful at work in planning my work and following through but I've been able to manage. Though there are times when I just can't figure something out. It can be frustrating so I end up moving on and coming back later. There is fatigue, too. I have to be careful to get a good night's sleep or else I have difficult time focusing in the morning.

The only side effect which really caused a serious problem was the neuropathy. It was very painful and totally disrupted my work schedule and ability to get work done on a timely basis. Fortunately, the neuropathy eased up after 3-4 months off Velcade .

I can work from home if I need to but prefer going into the office. I feel it helps me focus better.
Exercise helps but I am usually too tired at night to go the gym so I try to walk at least for 30 minute at lunch time.

[Chris m]

Re: Can you still work during myeloma treatment?

by Chris m on Sun Feb 09, 2014 3:56 pm

Hello Garden Girl,

I'm sorry you have been diagnosed with this and wish you all the best. I would like to share my husband's experience in a clinical study, because it was very positive and hope you might find one, too.

My husband has multiple myeloma (not smoldering) and the oncologist/hematologist who first diagnosed him suggested going to the Univ of Mich which has a clinic that specializes in multiple myeloma. When he had his first appointment there, they asked if he wanted to be in a clinical trial. They had one last opening and it was for carfilzomib [Kyprolis] (before the FDA approved it for wider patient use) along with Revlimid and Dex.

If you are offered the option of participating in a study, they will explain everything to you. And you will be given a "book" that also explains the drugs and protocol the study will follow. Ask questions if something isn't clear before you make a decision. Ask again if you need to and they should explain things until you have a good understanding.

We found that by participating in the study, my husband's carfilzomib and Revlimid were paid by the drug companies for the two years he took them during the study. Our insurance was still billed for everything else, but it was a huge cost savings during that two years for my employer (self- funded insurance). You will be monitored very closely while on the study, and that was comforting to have him see the doctors and have more frequent tests than perhaps would otherwise have been done.

The biggest benefit by far was the response to the medications. He originally had 85% of the multiple myeloma in his bone marrow. Now, 2 1/2 years later, he is in remission. The multiple myeloma cannot be detected in blood, urine, or bone marrow biopsy. There have been many ups and downs since he was diagnosed, but that is our new normal now. He worked throughout his treatments and still works now, although he missed many work days during his treatments due to having to travel nearly 4 hours one way to the U of M from our home.

I wanted you to know that it can be a very good experience in a clinical study, so you might decide you want to participate. I don't know what studies are offered for smoldering myeloma, but there might be something you want to try. Good luck to you!

Chris

[gardengirl]

Re: Can you still work during myeloma treatment?

by gardengirl on Mon Feb 10, 2014 2:22 pm

Thank you, Chris! I think a clinical trial will be the way to go. Fortunately, I have NIH 70 miles to my south and Univ of Penn 70 miles north. All the best to your husband! Go Blue!

[NStewart]

Re: Can you still work during myeloma treatment?

by NStewart on Mon Feb 10, 2014 9:30 pm

Because of the type of work that you do and the how close you are to people's faces, you may be more susceptible to picking up anything that they bring in with them. I don't know if it would be feasible for your patients to wear face masks if they come in with obvious respiratory ailments. You also probably see people with eye infections which it is impossible to avoid if you need to examine their eyes.

In my work I let my patients know up front that they should stay home if they had a fever, respiratory infection, flu, etc. I didn't let them know that I was immune compromised, but said that because I worked with people who were going through cancer treatments most of the people were immune compromised. I did send a few people home over the 5 years that I continued working when they came in obviously ill or said that they didn't feel well. The only person who was really upset with my rules was a college student who had the flu who I sent home and told him he needed to see his primary doctor.

You have a hard decision to make. I wish you the best.
Nancy in Phila

[Steve Mohr]

Re: Can you still work during myeloma treatment?

by Steve Mohr on Tue Feb 11, 2014 2:30 pm

I am currently undergoing treatment and am in the 4th of 7 anticipated cycles of Revlimid, Dex, and Zometa. My expereince has been that one can work during treatment, but expect things to be different. I have yet to miss a day of work because of the side effects of such treatment but that is not to say it has been easy. Like several of the others who have replied, chemo brain is a real challenge. I find it very difficult to concentrate for any extended period of time. The pace of my work ismuch slower because I find that I am prone to cognitive mistakes that I never would make prior to starting treatment. Fatique is also an issue that comes and goes without warning.

[bandito]

Re: Can you still work during myeloma treatment?

by bandito on Tue Dec 27, 2016 2:04 pm

After smoldering for five years, I have reached the point where I will be starting induction next week. It appears that my treatment regimen will be Revlimid, Velcade, and dexamethasone (RVD). I am, however, at 66 a bit older than some of those who have posted recently here in the forum about their experience with RVD.

One question that I have is if it is possible to continue working full time during induction therapy such as RVD.

Thanks,
Peter

[Mike F]

Re: Can you still work during myeloma treatment?

by Mike F on Wed Dec 28, 2016 10:22 pm

Peter,

I worked full time through four courses of Revlimid with low-dose dexamethasone and one cycle of Velcade with high-dose dex. For me, the dex was the issue. The low-dose stuff wasn't too bad, but I don't know if I could have kept working through more than one cycle of the high dose. The Velcade and the Revlimid were not a problem.

It's different for everyone, though.