Round 1 – Coming out swinging

I’m so sorry to hear the disease progressed to Stage IV, and I can relate to the fear. Thankfully we are in a different era of melanoma treatment than in the early 2000s. I am currently on ipi/nivo, and have primarily had GI side effects plus some fatigue. The GI stuff was relatively light after the first treatment, but then became full-blown enteritis after the second one. This made it tough to eat or drink, and I ended up losing quite a bit of weight. But the good news is this is all manageable with medication, so one of my lessons learned is: let your team know early that you’re experiencing any side effects, even seemingly minor ones (light nausea, some loose stool, etc.), so that they can address them as quickly as possible. I ended up receiving infliximab to calm down the immune response that was causing the crazy GI inflammation, along with a three doses a day of a steroid called budesonide. I was out for about two weeks, but am now back to working from home and going into the office for a few hours a day.

I’m sure your team is on top of this but: since you’re traveling for treatment, I think it’s important that whoever your go-to person back home is be familiar with management of ipi/nivo side effects. Showing up at an ER or urgent care complaining of nausea, vomiting, and diarrhea means something very different for someone receiving immunotherapy–but not all providers are aware of this. If you don’t have someone local who’s familiar with ipi/nivo, I think it’s important to ensure open and efficient lines of communication with your main oncologist.

One practical suggestion: in case you do have GI trouble (and many people don’t, of course!) it can be good to start thinking about easy-to-tolerate foods you like that are healthy (or at least get you enough calories). If you like smoothies, those can be a great way to pack nutrients and calories into an easier-to-swallow bundle. I’ve also found myself eating a lot of much simpler foods than I’m used to–mashed potatoes, crackers, PB&J, etc.

Also, I recommend being kind to yourself. I have spent so much time trying to will myself to feel better, when I need to just let my body and the treatment do their thing.

These are just my (non-professional, obviously) two cents! I’ll let you know if anything else comes to mind.

Warmly,
Tarlie

I atually have a very similar history. Also mom of 2. Stage 3b in 2003. With no treatments available back then – watch and wait turned into Stage IV with brain and lung mets in 2010. However, I was lucky to gain entry into a Phase 1 nivolumab (opdivo) trial at that point. I traveled for my care – from Chattanooga, TN to Tampa, FL. So….it’s a lot! But, it’s doable. Most importantly, I’m still here and remain NED for melanoma since my last nivo dose in 2013 with no further treatment.

For a general review of current melanoma treatment – including a section on immunotherapy – you might find this post helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

Side effects are so disperate – one patent to another – it is hard to “prep” for them. You kinda just have to take them as they come. There are tons of reports on side effects and how to deal with them on my blog – the search bubble is your friend. However, generally speaking the most common side effects to immunotherapy (and the reasons we get them) are reviewed here: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

Despite the fact that the post noted is about the side effects to nivo, it remains accurate for pembro or nivo as single agents or the ipi/nivo combo. Granted the side effects can be greater with the combo, due to the bad boy ipi – but the type of side effects expected remain the same. Fatigue, joint pain, and rashes being far and away the most common.

Hope this helps. Ask more questions as you have the need. I wish you my best. Celeste