#malignant melanoma

I finally had the wide excision on Tuesday. It was actually supposed to be Monday, but the first surgeon I saw wasn’t comfortable doing anything due to the location on my toe, and my medical history. He referred me to his colleague, who is “the melanoma guy.”

This actually worked out really well, as my mom (who came down to be with me for my appointment) used to work quite closely with this surgeon (she’s a nurse). She was very happy that he’d be doing the procedure and was confident in his skills and expertise. Due to the connection, the nurses definitely pulled some strings to make sure I could get in to see him asap. They were all really great in taking my concerns about having already been off of Humira for a month seriously, and understood why we needed to get the excision done right away so I can restart my therapy.

The surgeon’s office got me in to see him the next morning, and he asked me what I’d prefer for procedure. I went in being pretty against the idea of a skin graft if it was going to be needed, given my history of infections and shit just going wrong. He weighed an excision vs an amputation, but told me he thought amputation right off the bat would be a little aggressive. He was confident he’d be able to close the wound without grafting, but told me it would be extremely tight, and the margins would be very close. I agreed to do the excision as recommended, but if my margins aren’t good enough when pathology comes back, he’ll amputate the whole toe.

The excision itself was fine. The doctor made a remark about Crohn’s patients not always having a great pain tolerance (?), and was then impressed when I didn’t flinch for the injection in the bottom of my foot. He loaded me up with short- and long-acting freezing too, which was great.

The excision went down to the bone, and he also said that he hit part of my nail growth plate, so I might have some issues with that toenail going forward, no biggie. He put three huge retention sutures in, and two smaller ones. I go back in three weeks to get them out.

In the meantime, he asked for the pathology to be rushed for me. It usually takes about three weeks, which would mean missing at least two more doses of Humira. We’ll see if the request will actually result knowing what’s happening faster.

For now, we know that it’s definitely Stage I, and likely a Stage Ib. The thickness was only 0.43mm, but the mitotic rate of 1 was more of a concern. The surgeon should know definitively when I go back to see him for future removal. If he gets the pathology before that, and I do need the amputation, I assume that would happen before. There wouldn’t be much point in taking them out if the toe is just coming off.

He prescribed me Percocet for pain, and said it would be pretty sore once the local wore off. He was right. The pain level resulted in me taking two Percocet every 5 hours, until the vomiting started. I took the last two at 4:30am when the pain woke me up, and then I pretty much barfed from 7:30, when I got up, until 4:30pm. I actually tried to go to work, and ended up under my desk, puking into my wastepaper basket. I went home and barfed some more, called the doctor, who switched me to tramadol, and went to sleep. So, no more Percocet for me. Ever.

All in all, I don’t feel too bad about it, but I need to book with the dermatologist to make sure nothing else looks suspicious before we can think about going back to trying to conceive.

The surgeon did reassure me, though, by saying that I can absolutely get pregnant as soon as it looks like we have everything under control. There’s no need to wait for a certain number of months/years to watch for recurrences.

So far not having any bleeding, but definitely seeing the results of the stress on my gut. Fingers crossed I make it long enough to get back on Humira without losing my remission.

This whole skin cancer thing is super crap.

My excision is scheduled for September 11.

I spoke with my GI last week about what’s going to happen next. For right now, she has stopped Humira until we see what the surgeon has to say. She also has the pathology report, but I haven’t asked for, or gotten any details about the type of melanoma, or the possible staging.

Apparently any kind of aggressive cancer regardless of stage is not a good combo with the immune suppression of Humira (of course), hence the stoppage. If I have breakthrough symptoms, she mentioned prednisone (). Depending on what the surgeon says, and whether I have any other spots on my body that are suspicious, we may switch to Entyvio to be safer given it’s gut-targeting, rather than whole-body effects.

Given all of the side effects and complications I’ve experienced thus far, I can’t say I’m a huge fan of Humira. But, it’s gotten me into remission, and my symptoms are well under control. I’ve never been hospitalized due to my disease, and have not needed surgery. I’m so lucky that this drug worked for me.

As it stands, I’ll miss three full doses of Humira before the excision, and possibly more afterwards. I did ask about getting an earlier appointment to reduce the time off the drug (and the horrible waiting in limbo), and they offered me one this coming Wednesday. Maybe this is stupid, but with Wednesday being the day before my in-laws arrive from overseas, and the start our long-awaited holidays, I opted to wait until the originally-scheduled time. We’re going to be busy doing all kinds of activities: hiking, walking, touring around, and lots of driving.

I don’t know what this excision will involve (skin graft/amputation is possible), or how mobile I will be given the position on my toe. Just the biopsy was quite a lot more painful than I was expecting. I don’t want to ruin my holidays and everyone else’s as well, especially when the surgeon didn’t seem to think it needed to be done on an absolutely urgent basis.

To make this decision look less ridiculous, I’ll just say that I did ask my GI to let me know if she thought I should take the earlier appointment. She has the path report, and would hopefully know what we’re dealing with. She didn’t return my call, but her secretary confirmed she was aware of the question, so that makes me feel better. If she had told me to get in ASAP, I would have done that without hesitation.

Now I just have to wait and keep an eye on Crohn’s symptoms. I’ve had some increased frequency which I’m sure is due to stress, but nothing to be too concerned about yet. My GI told me that my scope showed deep remission, so I’m just hoping that I can hold on to that without Humira, and that I won’t have developed resistance to it when I get back on.

Anyone with a similar experience, please don’t hesitate to send me a message. Whether you have Crohn’s and melanoma, or just melanoma, or for that matter, have ever had a surgical excision on a toe, a tiny bit of insight into what I can expect would really help with my anxiety over this.