scnnr

Thanks Celeste!

Thank you Celeste!

“As far as intralesional therapy – there are some on this board who have utilized it to good effect. I don’t know why it is not being offered to you. If I had an accessible lesion (one that could be injected cutaneously) I would certainly avail myself of it. ”

This is something that hasn’t crossed my mind – is T-VEC and such only considered for intralesional therapy? So, not applicable to inguinal / iliac lymph nodes?
Thanks for the links – will give them a read now!

Re: Stage – he was stage II when diagnosed, 2 sentinel nodes biopsies came back negative. With the latest round biopsy from a groin area lymph node came back positive, which correlates with PET/CT scan. The oncologist said she still considers it regional, so not sure whether it’s III or still II.

thank you Celeste – I was hoping you would chime in, we’ve been reading your blog quite a bit, of course!

>> 3. Lymphedema occurs more frequently in those who are older, weigh more, and in the lower extremities.

It’s yes, yes and yes for our case – which means lymphedema is pretty much a given, but just how manageable it will be is hard to predict, which contributes to making this a difficult choice..

>> 4. It has been more than proven that a CLND does NOT impact overall survival.

Yeah, we’ve been reading the studies and the info on this, including your blog. Not sure how much it applies to our case though, since CLND would normally be done right after SLN, when the nodes that are being removed are still small, so CLND is more about preventing spreading while in our case it might be needed simply because if these tumours are not treated they’ll become a problem on their own. I can’t seem to find much info talking about this scenario.. which brings us to..

>> 5. Further, there is data that shows that actually leaving the tumor in place….if the tumor burden is low

Now, this is really interesting, and somehow I completely missed neoadjuvant term before! Definitely something to look into and consider. What I also like about this is that it would give us more time to consider our options while improving our knowledge, since we’d know which immuno worked and which didn’t. And possibly make surgery easier by reducing the tumour burden?

>> 7. If your partner is Stage IV, why is the oncologist offering Keytruda?

I think he is Stage III (our oncologist said she is still considering it regional – left foot / groin area). We haven’t really discussed the choice between Keytruda/ipi/nivo yet, sounds like she had success with Keytruda before. We don’t even know his BRAF status yet (they didn’t have enough material, they were hoping to get more from the right foot but it turned out to not be a tumour).

I’ve read your posts on T-VEC as well, what is your opinion on why it’s not being offered as a possible alternative for surgery? Everything I read about it sounds really good, and there are indications it works better for Stage III than IV, which would also make it more suitable for us – but I also don’t want to start searching for that “miracle cure”, and I realize that there are still only few studies with pretty small groups. Still, everything I read sounds great, so I’m surprised it’s not more well known.

>> 9. Hang in there. There is hope. Your partner is lucky to have you.

I think we, partners, are also lucky in a way that not everybody gets – perhaps there is no better gift than being able to help the people you love..

Thank you for kind words and support!

thank you – I’ve been googling for various combinations of words, but this search is showing some promising results that I haven’t seen yet!

I hear you on being more forceful in your opinions – when I say I want to support my partner’s decision it doesn’t mean agreeing with everything, if I felt that he wasn’t giving proper consideration to something or if he was intentionally ignoring something I would try my best to make sure he is making an informed decision.

Best of luck to you both as well, and I hope if you end up doing surgery it goes well and healing is fast and with as little complications as possible!

Thank you for sharing your experience! Was T-VEC offered to you as an option for the lymph node? When we asked our oncologist about it, she didn’t seem to be very familiar with it, which I found surprising. She did say the field is changing fast, but T-VEC was approved by FDA back in 2015, so I would assume it should be a better known option now, especially for when surgery might not be the best course of action, but perhaps I’m missing something. Another couple of reasons T-VEC seems an attractive option – it creates a long lasting response, and due to a different mechanism of action it seems to compliment immunotherapy.