Oh, what a few months it’s been.
- November 9, 2021 at 8:06 pm
For those following along, I’m currently managing some grumpy stomach lesions that like to make eating a real PITA. Luckily, after some great suggestions from all of you and a lot of just staring down my food until I convince myself to eat it, I’m starting to make some progress. Also, as of yesterday I learned that after only 5 weeks of this round of immunotherapy, I am “stable” AND my body has cleared out a handful of mini lesions and one of my mid-size lesions is looking less dense so it seems like we’re on a good path.
Now for the hijinks.
In August while I was off treatment and waiting to start this trial, I developed a Pilar Cyst on my head. The PA at my oncologist said it was a Pilar Cyst, my dermatologist said it was a Pilar Cyst, the specialist who removed it said it was a Pilar Cyst….until she removed it and SURPRISE it looked like melanoma on the inside. Well, got the results today and it is confirmed to be metastatic melanoma, so not a new lesion but a new metastatic lesion. Greeeeeeat.
In many ways, I don’t think this matters, I was off treatment at the time, I’m on treatment now…fine. But, of course, I’m annoyed, angry, pissed…really just frustrated and trying to determine next steps.
Here is what I’m currently seeing as next step options…what would you guys do?
1) Continue on clinical trial, don’t get it further removed (oncologist said I could do this, if I wanted)
2) Get margins further removed and continue on clinical trial.
3) Go off trial, receive injectibles (I’ve never had this option) and then restart Ipi/Nivo, which is what I’m getting at this point in my trial.
Thanks for following along and contributing!
BubblesParticipantGood grief, Amanda! Enough is more than enough isn’t it? Sorry you are having to think about ONE MORE THING!!! I guess ultimately, regarding what to do, it is more a personal decision than a scientific one. I could make an argument for any of the viable options you noted. I guess, were I in your shoes, I would probably watch and see what happens. If tumors continue to disappear and lose density (YAY!!!!!!!!!!!!!) on your current treatment – great. Should this particular lesion start any additional tricks, you could always add intralesionals and continue the ipi/nivo combo off trial – since the data shows that intralesionals do best when combined with systemic therapy. (Lots of reports on intralesionals on my blog if you are interested.)
- November 11, 2021 at 8:18 am
Hang tough! May your food seem extra tasty today!! c
gopher38ParticipantSo I seem to remember you were doing something called “STING” for the trial (I bookmarked it somewhere for future reference). Is that over, and you’re now doing ipi/nivo as follow up? So the “trial” part is just following your progress? If that’s the case, I’d probably drop it and go for the intralesional, and then resume ipi/nivo. If there is still more of this “STING” treatment to do as part of the trial, and the trial seems to be working so far (which it sounds like it is), then I’d stay on the trial (stick with what’s working) and leave it there for future intralesional if needed. I’d want to stay with whatever seems to be working, but it seems as though I’ve heard enough good things about injectibles, that I’d want to leave that as an option.
- November 11, 2021 at 10:59 am
That’s my first blush reaction, although I obviously don’t have a good understanding of your trial treatment. Sad to hear about another mel occurrence, but good to hear the trial is showing progress (right?).
Best of best of luck.
- November 11, 2021 at 3:25 pm
Sorry to hear about another Mel. My dermatologist shared this article with me: https://pubmed.ncbi.nlm.nih.gov/32936222/
which was interesting that we could get a new cutaneous melanoma. I’m wondering whether systemic ICI can reach the skin layers. Since CM is so hard to visually diagnose as you experienced, I am going to talk to my derm again about a pesky keratosis on the top of my head. My derm cautioned me a removal would leave a scar and bare spot but I have worse scars.
- November 11, 2021 at 9:36 pm
Am sorry I didnt reply earlier, because I didnt know how to reply – didnt have the information and understand all the issues. But obviously I was concerned for you!!! (Even if I didnt reply)
I think gopher’s explanation / description makes sense. If the trial only means continuing with ipi/nivo (since you have done STING already and there is no more STING), then as gopher says, might be tempted to try something more. That could be making sure that you have sufficient margins on your scalp (but checking how serious/painful would be the operation), or adding intralesionals.
What does your oncologist (I hope melanoma specialist) recommend? You could do nothing and hope that the trial is working and takes care of the margins issue on your head. But why not just get the margins and continue the trial – that would seem to be safer than doing nothing, as long as you can bear another excision (i had two on my leg same area, first was manageable, second time round was bad, and i faced a third operation which would have been a nightmare).
You could then add intralesionals too! (Options 2 and 3 are not mutually exclusive)
On intralesionals, I am a believer because they really helped me, and I know they helped tex – but I think I got lucky. My oncologist thinks they are best for those w low tumour burden (I guess regional / local). So if you have that then definitely go for it. If more spread then I think less effective, but can still help the ipi/nivo.
So, if gopher’s description is correct, then I might go for more margins just to be safe (if my oncologist recommended) and then maybe add intralesional after that if my oncologist thought i was a good candidate, or keep that in reserve depending on how the trial works (seems to be going well!)
wish you the best amanda
Thank you all for taking the time to respond. My initial reaction was the same as Mark and Warren recommended, do the WLE or utilize injectibles. However, after some additional conversations with my two Melanoma specialists, for now I’m proceeding forward just on my current treatment which is working. One, this treatment is working and two, I do feel a certain sense of responsibility to this clinical trial even though I’ve already received the part of the trial that is new.
- November 14, 2021 at 4:13 pm
Also, neither of them wanted me to do the WLE because I’m currently having trouble with the tumor in my stomach bleeding and needing transfusions every 7-10 days and also I’ll be honest it being on the back of my head makes it a pretty intense procedure and not one I’m unfamiliar with. I had a WLE done on my head when I was 8 on the first melanoma that was ever found on me and it did not go well. Resulting in two intense surgeries and wounds that did not heal easily or well.
No matter what, these other options remain if I need them moving forward.
Thanks again for all of your thoughts, I truly appreciate it!
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