JeanD

We’ve received further info from the nurse today:

Her armpit lymph node has a 0.7mm deposit melanoma (so I suppose just surveillance is further out the window), weakly positive for mela-A. The node also has a capsular and septal nevus with bland spindle cells that is not a melanoma (but I could not manage to understand from google if “bland” makes it more likely to be aggressive or more benign?), and is very HMB45 positive (I assume that would be a bad sign?).

Her neck node has a 0.5 mm by 0.2 mm (depth) metastatic melanoma, within septum with no parenchymal involvement (good if I understand correctly), only focally and weakly positive, but S100 strongly positive (bad if I understand correctly).

I’m obviously eager for the appointment with the oncologist (melanoma specialist fortunately!) in two weeks; in the meantime any further clarification / advice is very welcome!

Thank you,
Jean

PS: I’ve also got questions about patient-side advice, things that we can try as patients beyond following medical advice/treatment, like running / nutrition / etc. I think it might be better if I create a separate thread for it?

It’s all paying unfortunately, but thank you for the links.

Hi Celeste,

I see you have also linked: https://www.ncbi.nlm.nih.gov/pubmed/28817445

The title and abstract look very promising, but I have not been able to access the article itself. Have you been able to read the whole article?

Thank you,
Jean

Thank you for your answer Celeste. I had not seen https://onlinelibrary.wiley.com/doi/full/10.1002/art.40397 before, thank you. I’m not sure if that’s really making a case in favor of taking immunotherapy in spite of immune conditions. Of one takes out the patients who died within a few months of starting treatment, the proportion of those having had grade 3-4 immune adverse events becomes 5 out of 6. Counting the quickly dead as successful no-IRAE feels wrong.

My wife is considering starting with nivolumab nonetheless, if she is indeed stage 4. My question was more in terms of timing, do things take that long in the US?

Thank you.

I have created a new thread (on the 26th), but it does not show up on the list of threads of this forum. Strangely, I can access it nonetheless: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/science-based-lifestyle

I might have clicked twice on create, it said something about approval. Should I try to recreate it again (or is the system going to hate me even more?) 🙂

Thank you, that makes sense! Sorry, I forgot to mention the UK thing in my OP, and there does not seem to be an ‘edit’ button.

Thank you. However, if that’s a plane to the same country then it’s still the NHS, and to a different country then the entire cost will be on us (if they accept to take us at all), from what I read about the cost of immunotherapy (it runs in hundreds of thousands pounds/dollars?) that might not be feasible.

Hi Celeste,

Thank you very much for your detailed answer, much appreciated. And congratulations on your resilience!

Thanks for your reassurance about radiation dose! I’m happy with the jargon, even though we have been in this circus for a lot less long than you have, it our world too now!

It makes sense to go for adjuvant (assuming no further spread) treatment asap, thank you. We are in the UK though, so there will be no running anywhere, just limping along at the NHS’s pace (me wife’s “known” her mole wasn’t right since last autumn, having the NHS take it seriously took all this time). We have an appointment in two weeks with an oncologist (not sure if she’s a melanoma specialist or not), and CT scan in the same timeframe, we never have a choice in timing or personnel I’m afraid. At least the NICE guidelines that NHS doctors are supposed to follow seem in line with the recent literature I’ve found, as far as I’ve seen yet, but I’m eager to check with you all for a second opinion all the same!

“Should brain mets occur they do so. Location of the primary lesion or initially affected nodes are not relative in any of the literature or experience I have noted.”
-> I thought morbidity was pretty different based on where the mole was, for example I remember reading recently that head/neck was twice that of face? I’ll paste a link when I find something of that sort again.

Thanks a lot for your help,
Jean

Thank you very much, best wishes to you too.

Thanks for sharing!

Thank you for your answer! Zoe has read your PDF, she’ll keep doing stretches and hope it’ll resolve in time!