- April 7, 2019 at 3:45 pm
Inoperable primary desmoplastic melanoma in my skull. Next week the specialist will try to match me with a clinical trial. The available clinical literature indicates that DM responds well to immunotherapy. It also tells me that if immunotherapy does not work then I have a short time left, weeks or months rather than years.
Yesterday was the first day that I have actually felt unwell since the diagnosis 3 weeks ago. I am wondering now if it is realistic to think I might continue working during immunotherapy? It is difficult to try to decide when to start taking a leave of absence from my job. How long should I push myself to work? Should I go ahead now and start burning through my leave time? I am eligible for an unpaid medical leave of absence, but I'm not sure I can afford it.
I don't know anyone who has been through this particular type of melanoma. Lots of people with breast cancer or colon cancer or even skin cancer and other types of melanoma are around here, but of course I have to be different!
Is there anyone out there who might have some insight for me?
- April 7, 2019 at 5:42 pm
I had melanoma in several of my bones. I usually took sick leave on the day I received Keytruda or Opdivo immunotherapy. I needed to take several weeks off work, when I received Yervoy + Opdivo immunotherapy. I am retired now and receive 480 mg of Opdivo every 4 weeks. If I were still working, I would probably take 2 days sick leave after each Opdivo 480 mg infusion.
- April 8, 2019 at 1:24 pm
I also took the rest of the day off after I got my Opdivo treatment. I started getting the treatments on Fridays, so that I'd have the weekend to feel better. I mostly just had fatigue after the treatment.
It is a hard call. I ran through quite a bit of sick leave, as I also took days off for second opinions, scans, and a few times for not feeling well due to some side effect or other.
Opdivo seems to be a fairly well tolerated treatment if you are on it a standard amount of time, or not in combo with others. I don't know if this is what you will be on.
Best to you in making your decision and healing!
- April 8, 2019 at 2:21 pm
How folks react to immunotherapy and a melanoma diagnosis varies considerably mentally and physically. Side effects alone can be mild, almost nonexistent versus debilitating with folks being forced on disability. Nivolumab (Opdivo) and Pembrolizumab (Keytruda) as a single agent are much less toxic than the ipi/nivo combo (Opdivo given with Yervoy) with Yervoy being the bad boy of side effects. That said, I took nivo for 2 1/2 years in an early phase 1 trial as an NED Stage IV patient. Despite fatigue, rashes, wheezing, joint pain and mouth ulcers – I missed only 3 days of work. It wasn't easy, but my work schedule probably helped as I worked 12 hour shifts as a pediatric nurse practitioner on M-T-W. I would drive 2 hours to Atlanta from Chattanooga, then fly to Tampa for my care on Thurs afternoon. Stay in Tampa overnight for doctor visits and infusions at 0700 on Friday – every 2 weeks for 6 months, then every 3 months for an additional 2 years – then repeat the trip home Friday afternoon, usually getting home around midnight. NOTE: This is not the dosing schedule that is currently utilized!
I also ran and exercised during those years. Didn't win any races…other than still being here!! So…how folks are able to deal with these treatment is quite varied. I think the key to management of these things is good luck, stubborness, and acknowledging you have to flex and roll with the punches.
Hope this helps. I wish you my best. Celeste
- April 10, 2019 at 4:13 pm
"How folks react to immunotherapy and a melanoma diagnosis varies considerably mentally and physically."
Basically this. I live in work in a major metro and I actually bike to my infusion and then either bike back or home depending on the time. Others have had some pretty debilitating effects including severe weakness and a variety of other ailments making that pretty rough. Hope for the best, plan for the worst.
- April 12, 2019 at 9:54 pm
I was Stage IV, bones, liver, lung, adrenal and lymph. No brain mets. I was able to keep working for 2 years. Had some side effects from Opdivo. The side effects and the Prednisone I was taking for them is when I had to call it quits.
I was lucky enough that I was able to schedule my treatments late enough in the day so if I worked through lunch I only used about an hour of sick time per treatment day. On scan days I would usually take a vacation day so would have who;le day for scan then doc then treatment.
Family Medical Leave Act means your employer has to continue your insurance for 12 weeks. I used all my vacation time, sick time and then went on FMLA for the 12 weeks. I was fortunate enough to be old enough for regular Social Security so was not without income.
You can check at the social security website and play with dates to see what you can get dollar wise depending on when you choose to retire.
- April 23, 2019 at 3:16 am
I worked through as much of my treatment as I could. Luckily, my job allowed for me to work from home which allowed me to stay off of medical leave for longer. There was a point when I had to stop working and take medical leave. If your employer is flexible and your job allows you to work from home I would definitely explore all the options. I'm lucky to work for a great company and they really worked with me to help as much as they could. I was very open and honest with them and communicated my treatment plan, possible side effects and realistic expectations of what I would be able to do. Being on long term leave or unpaid leave can make it difficult to make ends meet. I think it's difficult to know ahead of time. Do what you are able to and when you feel you need to back off and take leave you will know.
Good wishes to you,
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