MelWave

Pet scan can only show cancer that is more than approximately 5mm in size.
So you can have traces of melanoma in your lymph nodes (say 1mm big tumor) that is not detectable on pet but is detectable easily on biopsy.

Hi Suz,

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 depth.

Mitotic rate of 8 is high. It is more common in nodular melanomas like yours.

It still doesn’t mean that your melanoma had spread but it is concerning. Please take it seriously. In this situation, yes, I would go to the best center available to you, and you need a second opinion ASAP. I would guess you still need to do SLNB (or maybe even a full dissection given that it wasn’t done at the same time as WLE? I think SLNB is more likely but it is a question for an experienced surgeon.).

Because of your mitotic rate I personally would take as aggressive treatment path as they offer. There is immunotherapy treatment available for stage three melanoma that is being trialed for stage 2 patients (pembrolizumab or nivolumab are the names of the drugs – they are essentially the same drug). If you are stage 2 ask your treating physician in depth about possibility of getting this through trial, or otherwise, especially given the fact that your SLNB was not done at the same time as your WLE so the result is less reliable if negative.

Hi Cindy,

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.

Hi,

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 chance to work once again, against this new tumor.

Ovarian cyst is a common finding and in the overwhelming majority of cases they are non-cancerous.

 

Hi Tim,

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 treatment is harsh enough to add anything else in the process.

If the tumor regrows you sound like a candidate for TIL. This is because your tumor can be easily harvested and you have a lot of material there. I would try and ask your doctor about joining a TIL trial. This would likely be in London in your case. I think I have heard that they are looking at having some trials in the uk now (were previously delayed by Covid).

I disagree with you about star (or more specifically just good and creative) oncologist. Any doctor would more readily suggest treatment regimes that they and their team have access and experience with.  This will wary quite a lot between different doctors and centers. You have to keep in mind that medical profession is a field of work like any other -maybe think of it like fixing a car?

In any case – once you are treated by someone you will have to simply do what this person thinks best or find another doctor. The relationship between doctor and patient is not exactly an equal exchange of ideas. So eg if you think TIL is good idea try to figure out what your team thinks of possibly joining a trial and if they aren’t very proactive try a different doctor privately.

Good luck with whatever you decide!

 

Hi Jeanie,

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 your body to form metastases but in some cases they can resist the immune system and can form them.

The doctors want to take out a few of your lymph nodes because finding melanoma cells in them gives them a good indication that you might have cells in other place in your body that are capable of forming metastases. The cells they find would not be the cells that went there in these 6 weeks, it is a longer process. It is very safe procedure and in your situation very very important, because if they do find cells there you have access to very effective treatments that can prevent further spread.

You are still in the middle of your diagnosis. The doctors are following a standard protocol and there aren’t good alternatives now (really. no matter what someone told you – you could discuss and you would arrive to the same conclusion – you need to have the standard tests), so that’s why they haven’t discussed things with you. If they do find cells in your lymph nodes there will be discussion about treatment (or at least you should expect one).

Best of luck!

Sounds good then!

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 specialist hospitals (e.g. Marsden) and hence change the trust. This sometimes offers additional treatment options. Not suggesting you should transfer just be aware it is a possibility for the future.

Re: second opinion – even when you believe your team is the best, don’t hesitate to ask for other opinions when the situation is not straightforward- it is better to have an additional input to ponder, for them as well as for you.

Tim, I am in the UK as well, and my husband is stage 4 (currently NED after Ipi/Nivo, and he failed adjuvant pembrolizumab. He is BRAF negative).

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 invested in each patient. I really don’t want to go into discussion what is better, but obviously when you are sick you want all the possibilities available to you. The reason I am writing it is to say, please do not hesitate to seek second opinion at any stage of your treatment, and always ask if different options are available privately if you can afford it! It is no disrespect to your medical team. It is very appropriate in your situation.

In your shoes I would go to Royal Marsden hospital in London if you wanted to get a second opinion. It has some world famous melanoma specialists.

Now I am not a medical doctor so feel free to absolutely disregard my advice. If I was you however I would question why your team is considering medical trial when in your situation Ipi/Nivo is by now a standard treatment with good chance of working (the trials have shown it works well even after failing adjuvant pembro). It should also be given as soon as possible because it works better with lower tumor burden. Your tumor has an advantage of being accessible and observable so they would be able to check with naked eye what this treatment is doing to it, ie if it is shrinking, and take biopsy easily. So if your doctor is proposing something else in your situation I would ask another doctor to really understand what is what and decide based on that. My tip is just to be quick with all that.

Good luck with whatever you decide.

Hi Tim,

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 (even not full response). They do ct after 2 doses to check for response and decide wether to give more. I am not sure when they will publish full results but preliminary results were encouraging and they are already published – if you want I could find it.

The toxicity of the drug is somewhat correlated with response, since basically when it activates you immune system against cancer it also activates it against your own tissues and organs. It is not a full correlation and a few people are lucky to have effect on their cancer without serious side effects and also vice versa. So you are likely to have a response and some side effects together.

Good luck with the treatment.

Hi Fiona,

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 best of luck – hope this works!

Unfortunately things do not appear to move as fast as with melanoma or COVID where cortisol dependency is concerned…The article is still very much relevant.

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 per month). It doesn’t emulate the night time rise in cortisol though. You could try it if your endocrinologist agrees and see if it is better? For my partner it is still early days but perhaps he will try it later on. Right now he just splits hydrocortisone into smaller and more frequent doses.

We will be trying to find good endocrinologist with experience in hypopituitarism. Hypopituitarism caused by imunnotheraphy is no different from hypopituitarism caused by other things – in the end you just have hormonal deficits and the question is how to replace and manage them best.

The damage as far as cortisol production is concerned is nearly always permanent, sadly. So the replacement is for life.

Dear sing123 and Lucas,

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 answer is, they don’t . Yes it is to an extent weight dependent, but it also more importantly depends on other factors, and most importantly it changes depending on your stress levels, your current health condition, whether you exercised recently etc etc. There is no good way to reproduce the way your body controls your cortisol levels. What is true though is that cortisol levels that are too high cause morbidity and excess mortality, mainly from cardiovascular disease. Doctors used to think that 30mg hydrocortisone is the correct physiological replacement dose for most people, but in the last 20 or so years they realised that lower doses, like 20-25mg is actually better for most people. This is equivalent to 5mg prednisone. So this is why sing123 your doctor is advising you to take this dose provided you have no side effects on it. But it is unlikely you will be able to go down under less than 15 mg  unless your body starts producing some cortisol again, which can be tested easily, and I am sure your doctor will schedule tests from time to time (an easy test is just morning cortisol). I am sure she also told you that you can take more hydrocortisone if you feel stressed and that you need to take more if you are sick (sick day rules).

In general the problem with cortisol replacement is that it is hard to replicate the natural cycle of cortisol production. Cortisol concentration raises at night while you are asleep, is highest in the morning and goes down during the day, then is low in the evening. Taking replacement of 15mg in the morning causes your cortisol to peak higher than natural levels and then quickly dip, taking 5mg causes another peak and another dip. There is no solution to this problem currently. I attach a link to an article that explains all this (I suggest you get a full version access)

https://www.sciencedirect.com/science/article/abs/pii/S1521690X08001085?via%3Dihub

Lucas, prednisone is longer acting than hydrocortisone, hence you only need one dose in the morning. It is also a cheaper drug. I think hydrocortisone has other advantages over prednisone though in terms of long term side effects as far as I know, which is why most people on long term replacement would be on hydrocortisone. So you might want to read on it, or ask your doctor to try and switch to hydrocortisone if he feels that it is appropriate.

Hi Tim,

 

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 limbs.

 

Good luck with your appointment!