I am sorry you are finding yourself in this situation.

3a refers to just the pathology of the excised tumor. 3 says what layer of skin the tumor reached (in your case it was quite deep) and a is that it was non-ulcerated. Your melanoma stage will be determined after SLNB and CT/MRI scan. It will be 2 or higher because of your tumor…Read more

Did they check your thyroid function?

Immunotherapy can sometimes causes thyroiditis (inflammation of your thyroid gland) which can cause palpitations. In that case your TSH will be low and your T4/T3 high.

It is not possible to be sure from CT alone if the mass is cancerous – as you probably know they want to see if it lights up on PET.

Melanoma can mutate and the new tumor can be resistant to whatever immune response your body has currently developed -so it it is cancer it can well be melanoma. In this case (more)immunotherapy still  has a…Read more

You are currently on the treatment with best chance of success (ipi/nivo) and the “palliative” designation is really just a turn of the phrase. This incredibly expensive treatment is in reality funded by the NHS because it can significantly prolong your life or even cure you. First thing you need is to try and finish the treatment. The…Read more

6 weeks is reasonable wait time. Waiting will not change your stage.

Melanoma starts “shedding” cells into your lymph nodes and your blood at some point in its development. Usually these cells are killed off by the immune system (you still have immune system even with leukaemia so do not worry about it) or are unable to take hold in…Read more

I just often came across expats misunderstanding the UK medical system and my best explanation is that in the UK your trust=your insurance company (and you can have a private insurance on top of that). A useful thing to know is that with cancer and other major diseases you can sometimes choose to transfer to one of the…Read more

I am a bit hesitant to write it but I guess it is better to be aware – in the UK  financial considerations are very much part of treatment decision. There is just a finite amount of money that can be…Read more

Yes this is true and in fact 4 doses was a somewhat arbitrary choice when ipi/nivo regimen was introduced. Because the data shows that those do less doses statistically do just as we as those who don’t there is now a trial underway in Sloan Kettering Hospital run by dr Postow where they just stop at 2 doses when patients show response (…Read more

I don’t know anything about enco/bini from personal experience but I just googled it and leptomeningeal disease and it seems like there were very encouraging responses in patients.
For example look at these articles:

https://pubmed.ncbi.nlm.nih.gov/31757377/

https://link.springer.com/article/10.1007/s11910-020-01039-1

I wish you b…Read more

Dr Larkin was part of the landmark Ipi/Nivo trial that is now a mainstay of metastatic melanoma treatment. He is in  Royal Marsden

We personally had received absolutely brilliant care in melanoma clinic in Guy’s Hospital, specifically with Dr Mark Harries.

I would go private route if your dad has insurance, and even if no…Read more

As far as I am aware there is just one slow release drug in existence, called Plenadren. It is approved in the UK, don’t know about the US. It is relatively inexpensive (around 300 pounds…Read more

We unfortunately had to educate ourselves recently on the issues surrounding cortisol replacement since my partner is in the same boat – in his case ipi/nivo caused hypopituitarism, so this is technically secondary adrenal insufficiency, but this is immaterial.

How do the doctors know how much cortisol you need? The…Read more

We are also hopeful that other pituitary functions will return, need to wait and see. Although thyroid is likely already destroyed after the first infusion.

In his case he needs to decide whether to take t…Read more

Is the lesion soft? I think it is then more likely to be a cyst rather than a metastasis (they are usually hard from what I have read).

It would also be somewhat uncommon to find a metastasis on a limb, unless your primary was nearby (downstream the lymph flow ikwim). This is the reason why pet/ct usually do not include the lower…Read more

It is a question how many doses of combo one actually needs. In some people’s cases sounds like  two are enough. I saw that there is an ongoing trial to test this dosage as a general approach.

I seem to remember that you also had a lesion in your liver – do you mind telling how did it respond to the treatment? Did react or did it…Read more

The oncologist in our case doesn’t want to give ipi/nivo before the steroid dosage is under 10mg (seems reasonable to me). So we might have to wait close to the time you waited, Edwin. Good to know it is something that is done.

The good news are that his scans showed response so far, alt…Read more

Just from your medical history it sounds plausible that your lung edema might have been a consequence of being treated with dab/tram exacerbated perhaps by your first dose of ipi/nivo. This is because you had edema in your legs before that.

Also I really don’t like the conversation your oncologist is having with you about not wanting to r…Read more

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this is the private second opinion page in Royal Marsden. Just write to the email you find there and the secretary will explain the procedure. I would ask dr Larkin and not sure if he does it now, but anyone from their melanoma team would be good, they…Read more

In case you decide to do it is…Read more

in addition to all that people wrote to you, could I offer a bit of practical advice?

The research is good but ultimately it is up to your doctor to decide if the results are applicable to your particular case. Your doctor can easily disregard any paper you bring her. If you want to change her mind you will need an opinion of another…Read more

Here is some discussion from the ASCO conference this summer discussing the recent advances in therapy. The relevant bit is where they discuss flipped  vs standard ipi nivo dosage and one of the consultants states that for patients with brain Mets standard dosage is standard of care…Read more

From what I know (mostly from reading this forum and some articles) SRT with Ipi/Nivo with standard dosing (3/1 mg) are the standard when treating brain mets. I don’t think you will be unreasonable to insist to try adding Ipi again. The fact that you once have  had a side effect doesn’t mean you will have it again.

The site IS glit…Read more

good luck at your appointment!

I have read that treatment isn’t usually recommended to be stopped because of sarcoidosis. In fact some think that it is an indication that the treatment is working. Likewise  steroids are not always recommended but it is probably between you and your doctor. Very much depends on how you feel,  the extent of sarcoidosis etc.

You can…Read more

I am a longtime lurker, so I kind of feel I know everyone here but of course you don’t know me. My husband was diagnosed with stage 3a melanoma in 2018. He was treated with adjuvant pembrolizumab for 5 months, after which his treatment was stopped due to nephritis (kidney inflammation). Just yesterday it was confirmed (via a…Read more