Biopsy positive for melanoma

I guess we can be sisters because my biopsy came back positive today too. Im still waiting for details and a start date too. I’ve been dealing with an unrelated brain tumor for the last two year and they picked a brain met in my last scan. Have them in my lungs and spleen too. No symptoms yet.

I was able to get my treatment on Friday so by Monday work was possible. During the combos I usually missed 1 or 2 days a week but during the 52 nivo treatments I pretty much worked full time. Many days were rough though.

While the combo part of your treatment can be pretty rough (with ipi being the bad boy of side effects), the nivo only portion is likely to be less so. Though side effects and how they are tolerated vary person to person, I am pretty confident you will find that the entire regimen is less difficult than interferon – and much more beneficial!!! I worked full time when on nivo as a single agent, missing only 3 days in 2 1/2 years. Like Hukill, it was beneficial to have my infusions on Friday, so that I had the weekend to rest. Wishing you my best. Celeste

So sorry to see you’ve joined the club again.

Ipilimumab will be the “bad boy” with side effects, but they can be managed. The most common one I’ve read about on this forum is diarrhea. Some folks have also reported getting vitiligo, while others have reported getting an itchy rash. But, as with other drugs, the side effects and their severity will vary with each individual.

https://www.ascopost.com/issues/october-15-2013/how-to-recognize-and-manage-ipilimumab-induced-dermatologic-adverse-events/

The combo you’re being offered has been reported to kick some serious butt with melanoma.

I was diagnosed stage 3B metastatic melanoma a year and a half ago and a tumor was removed from my back. Subcutaneous melanoma in my fatty tissue so no other treatments called for. Two weeks ago a biopsy confirmed metastases to my scapula. Now at stage 4 and my first nivolumab infusion was yesterday late pm. This morning I walked 3 miles and have absolutely no side effects. I know it is early but I was told most common side effects can be addressed with over the counter meds. I am hoping my tolerance to Nivo continues. So,, the short answer is you might be able to continue work. Let’s hope so.

Like with every other aspect of any melanoma treatment, it all depends. From my own experience, being on a combo and managing only two infusions out of the four due to severe side effects, there is no comparison between the first four infusions and the rest. If you get through the first phase, consider yourself on the home stretch. I am on nivo now and I experience fatigue, achy joints, neuropathy etc. These are not constant but they affect you none the less. As for work, if you have a flexible schedule and an office job it’s easier. If you work as a primary provider and run all day it will be tough. Being a nurse and having gone through previous treatment you probably knew this already. Hope for the best but be ready for a few bumps just in case. By the way, when the combo works, the results are amazing and side effects are secondary and manageable. I guess just like everything else in life, it’s all relative.
Wishing you terrific results.
Melanie

Ok! Deep breath! Well, i can say now, Welcome to the Ipi & Nivo Club! Its an adventure, the Yervoy can be like a Rodeo of sorts, how long can i stay on! I managed all 4 bags of its contents, had a few “Postponements” inbetween infusions due to my Pituitary being “Kentucky Fried”, but was eventually treated with Hydrocortisone pills. The day that it was ” fried” ( 6 days after 1st infusion) my Cortisol level dropped to ZERO & i crashed and burned, for week i didnt eat, i vomited multiple times daily, head throbbed but i rode it out (Kaiser ER did nothing!) My lovely wife Hillary saved my life getting a hold of a bottle of Megace (appetite stimulant) and within 24hrs i was eating again & the rest got better!! Now that was a “gland” shutting down wich is common for Immunal drugs, Glands can shut down on ya, that alone creates a bad day. Im being honest here, no candy laced frills but after treating my pituitary i was good to go!! Youll be fine!!