TarlieT

Hi Citrus, I’m sorry you and your husbaand are going through this. What you’re describing sounds very similar to what I experienced after my second ipi/nivo treatment, which turned out to be due to inflammation of basically the entire GI tract–a side effect of the immunotherapy. I had bad acid reflux (probably from esophagitis, inflammation of the esophagus), severe upper abdominal pain and nausea/vomiting (inflamed duodenum/upper GI tract), and bad diarrhea (inflamed colon/colitis). I also had one vomiting episode involving blood, which turned out to be due to a small esophageal tear from the persistent vomiting.

For the first few days, I also took some of the drugs your husband was prescribed and was only getting worse. I finally went to MSK’s urgent care when it became clear that I was very dehydrated. After some tests to make sure I didn’t have a bacterial stomach infection or a bowel blockage (because at first I had constipation rather than diarrhea), they confirmed that it was due to GI inflammation and prescribed 50 mg of prednisone daily. This worked wonders! Prednisone is an immuonsuppresant, so it counteracts all that wild inflammation. Infliximab is another, more expensive, option for immunosuppresion that is sometimes used. The prednisone made a huge difference for me within just a few days, and I was off it entirely a few weeks later (though note that I did have some recurrent inflammation a few weeks after that, so they started it back up again; you just don’t want to be on prednisone for too long if you can help it).

The things your husband has been prescribed may only be treating the symptoms, when what he might be experiencing is severe GI inflammation from the combination immunotherapy. I believe that prednisone or infliximab is standard of care at the top cancer hospitals for situations like these. When severe GI inflammation is at play, my understanding is that it’s important to treat the underlying cause of inflammation (not just the symptoms) because more severe things like bowel performation can occur in rare cases.

All this to say: I would seriously consider asking your oncologist about immunosuppressants like prednisone, and potentially reaching out to Dr. Chapman again to get his thoughts. In addition to my main oncologist Dr. Wolchok, I also worked closely with Dr. David Faleck, a gastroenterologist at MSK who’s an expert in the GI side effects of the combo therapy–perhaps he would be worth connecting with as well. The MSK oncologists have extensive experience managing the severe side effects of ipi/nivo, which not everyone is as familiar with.

Wishing you and your husband health,
Tarlie

Congratulations on your fantastic news, Jennifer!!

I echo Linny…it is so tough to be going through this.

I am not an expert, but I am also Stage IV and was receiving combination therapy up until recently. During that time, I asked my oncologist (Dr. Wolchok at Sloan Kettering) this same question, and he said that during ipi/nivo he doesn’t pay much attention to LDH because it’s nonspecific. In my case, for example, my liver got quite inflamed, and he thought that my rising LDH levels were likely due to that. That’s what I understood, at least. Maybe the combo has triggered some inflammation for you as well, and the LDH is reflecting that? My fingers are crossed for you.

Hi Tsvetochka,

Yes! I experienced something on nivo that sounds very similar to what you’re describing–oral mucositis. It hurt to brush my teeth with toothpaste, eat anything remotely spicy or acidic, and so on. I did develop one or two sores, but most of the time–like you’re describing–it was just the burning and sensitivity.

I was sent to my dermatologist at MSK (Dr. Mario Lacouture) and he prescribed a dexamethasone rinse–a local steroid–which worked wonders to clear this up. (FYI, he co-prescribed an antifungal lozenge, clotrimazole, since the steroid can make you susceptible to thrush.)

This side effect came and went throughout my time on nivo, so I’d just keep the dexamethasone on hand and do several rinses a day whenever it would pop up.

I hope this helps!
– Tarlie

Congratulations!! This is such exciting and encouraging news.

Hi Andrea. I agree that, while these drugs represent truly incredible advances in melanoma treatment, the near-term side effects can feel scary and sound brutal. But keep in mind that a good chunk of people have only mild side effects, and the more severe ones can generally be managed. I had my second infusion of ipi/nivo about four weeks ago, and it’s true that it ramped up my immune system quite a bit! I haven’t had fatigue, rash, thyroid problems, etc.–just GI upset. Like others, my main advice would be to make sure you’re keeping your team informed about everything that’s happening–even 1-3 loose stools can be a harbinger of emerging gastroenteritis, for instance, so the earlier your team can jump on it, the less likely it is to become severe. For example, when I started having mild diarrhea they immediately prescribed budesonide (a locally-absorbing steroid), which took care of the symptoms immediately!

Later I developed nausea and eventually vomiting/lack of tolerance for food or water, and I made the mistake of underplaying it to my docs–not wanting to waste their time or sound like I was complaining. As a result, it ended up getting more severe than it should have. Once it became clear what was going on, they put me on prednisone and some anti-emetics, and everything calmed back down again. So frequent and open communication with a team who has extensive experience managing side effects of ipi/nivo is key.

You can do this! Much warmth to you and your kids. I’ve found the love, support, and distraction of family to be indispensable during my little bouts with side effects.

Hi Alysoy,

Good for you for staying on top of your skin checks and having anything concerning checked out. I am very familiar with this anxious waiting period, and it’s crazy/scary how the two possible outcomes–it’s nothing at all, or it’s something dangerous that requires action–like at such different extremes.

I’m not a clinician or melanoma researcher, but here’s my take on your question: the ugly duckling strategy is a really valuable one for identifying melanomas, since the ABCDEs can cause misses–my melanoma, for example, was pink, symmetrical, dome-shaped, and even-bordered (nodular melanoma)…and so both I and the numerous dermatologists I saw assumed it was nothing dangerous. For anyone interested, here’s a nice JAMA article on the effetiveness of the ugly duckling approach: https://jamanetwork.com/journals/jamadermatology/article-abstract/2600689

But, all of that said, my (again, non-expert) guess would be that many ugly ducklings turn out not to be melanoma. They might be dysplastic nevi, basal cells (not ideal but not melanoma), etc. I am a bit of a special case because my body makes numerous “populations” of moles–so they’re not very consistent-looking in general–but I can’t tell you how many ugly ducklings I have had removed based on the derm’s recommendation, but which came back as just a little atypical. Of over 20 biopsies in my life, all conducted at good institutions and at the recommendation of the derm, just the one has ever been anything but a dysplastic nevus or normal mole.

It sounds like it’s good that you had it removed–the cons of a biopsy seem so small compared to the potential gains–but that you can also have solid hope that it’ll turn out to be nothing, or almost nothing. The fact that it’s been growing very slowly and not itching or bleeding seems like good news (although a caveat is that, if it happened to be nodular melanoma–which it very hopefully won’t be!–they do tend to grow vertically/deep rather than horizontally across the skin).

Focusing on controlling your anxiety makes a lot of sense, since you can’t influence the outcome at this point anyway. Depending on what works for you, maybe try some meditation, distraction, exercise, social time, or even thinking through the worst-case scenario and how you’d tackle it (this freaks some people out but it helps me feel in control :).

I hope this is somewhat helpful,
Tarlie

Hi Marburg,

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’m so glad! It sounds like you have a good path forward. Good luck and I hope your husband is feeling better soon.

Good point, Tsvetochka–it definitely depends on severity. I think I received the prednisone because I had Grade III colitis and diarrhea and was unable to keep down food or water…but if it *can* be managed with diet and over-the-counter meds I’d imagine that’s even better!

Hi Citrus,

Absolutely–if you’re not feeling like your local oncologist is taking you/your husband’s symptoms seriously, I’d say it’s absolutely worth contacting Dr. Chapman. It’s really frustrating to not feel listened to/trusted, and it might be contributing to unnecessary suffering.

I had two different procedures to check for the GI inflammation, which I don’t think can be detected in blood labs. The first (and I think the most standard, especially for anyone with diarrhea) was a flexible sigmoidoscopy, or “flex sig”–this is like a coloscopy but doesn’t go as deep, so it takes less time (I even had mine done while awake, which was an adventure!). They look around for visible evidence of inflammation and take some biopsies to be analyzed in the lab. My colon looked normal to the naked eye, but the biopsy results revealed inflammation.

Later, when I developed the blood in vomit, they also did an upper endoscopy, where they entered through my throat and looked at the esophagus and upper GI tract. By that time, the inflammation in my upper GI tract was quite severe (Grade III). If they were to see evidence of inflammation in your husband’s flex sig, I’m guessing they wouldn’t need to do the upper endoscopy–I think that was more a product of my special circumstances.

Not to impose my views, but I would suggest calling Dr. Chapman soon/ASAP, even if you’re still waiting to hear from your local onc. Since he’s involved in overseeing your husband’s ipi/nivo care, it makes sense for him to be in the know. And like I said, he might have experience with these treatments that your local onc doesn’t, and might think the symptoms are more demanding of immediate attention.

All the best,
Tarlie

I’m so glad! My fingers are tightly crossed for you as you tackle this path.

I know darker moles can be a worrisome indicator–and are definitely worth keeping a close eye on and biopsying as appropriate–but I will say that I’ve had a number of black spots that have either been removed and turned out fine or that we’ve left because they don’t look problematic under the dermatoscope. Again I’m not a clinician, but it sounds like you and your docs made the right decision to biopsy, *and* that you have a lot of reason to hope that all will be fine.

To your question about growth: I’m honestly not sure. What I’ve been told is that cancer likes to grow, to divide, so that you’re often going to see worrisome things changing. But of course there are exceptions, like when the mole is growing vertically into the epidermis, which you probably couldn’t see with the naked eye. That said, you and I are in our late 20s, and from what I’ve been told it’s normal to develop new moles throughout your 20s–so maybe this is just your body continuing to produce new moles, growing them to a particular size, and then stopping.

My sense of nodular melanoma is that it tends to be, well, nodular–like a bump or dome. Here’s an article that reinforces that: https://www.medicalnewstoday.com/articles/323599.php#signs-and-symptoms So if your mole was flat or just slightly raised, it sounds like nodular likely wouldn’t be of concern for you…which would be great!

My fingers are crossed for you! I know the wait can feel endless, but in a few weeks or less this could all be behind you :).

– Tarlie