My profile info with more details+more questions! Sorry!

Hi,

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 request another try of ipi/nivo. It is her business whether or not she manages to get the permission – it is her duty to try, as a doctor if she thinks it might be of benefit and this is the only thing she needs to discuss with you. This however is just my opinion – feel free to not be influenced by it 🙂

I still think that to change your treatment plan you will need to get a second opinion from a respected expert. (It might still support your doctors decision! We don’t know…but that’s the only chance if you aren’t 100 sure…)

 

Hi Rosie,

Thanks for posting these details – I read them only quickly. In the old days there was a way to post this under profile, I am not sure this is possible. Such a profile helps others (the “experts”!) give the best advice. And like you, I find myself getting easily confused about my disease history, until I write it down.

I agree with Melwave, and the advice I have given you earlier (which is similar to Melwaves).

Here are my questions:

1. Is your oncologist a specialist in melanoma? I looked up Beatson Cancer Centre and I could not find any mention of melanoma. Under cancer types they did not list us 🙁. You do need to be seeing a melanoma specialist.

2. You are kind of in a grey zone. Nivo alone does not seem to have worked because you have had progression, but very slow progression. So maybe its necrosis, or maybe the nivo had some effect. For me I needed to add TVEC but that only works if the lesion is injectable. So pretty sure not for the brain, maybe for the liver (if this is where your tumour is). For you it could be adding ipi or a clinical trial.

3. I dont understand their logic on SRS. In the US i forgot the rule of thumb but i think it was if less than 20 and less then 1cm (really not sure) then SRS is do-able. So get them while they are small. I would think you are a good candidate for SRS. Ask them for the reason why, rather than you having to guess.

4. On not returning to ipi/nivo – well, you can tolerate nivo, so my guess is the risky one is ipi. Ipi/nivo is better than either one alone. It may be that your doctor is reluctant because the NHS wont let you do the same thing twice – ie if they take you off a treatment then you cannot go back on it. I am not sure this is true, but some of MarkR’s posts seemed to hint at that. Maybe this is why she wont ask. I really dont know the reason. It would be sad if my reason were true.

For all these reasons, I would ask for help getting a consultation with a melanoma specialist ASAP, ideally Royal Marston but maybe there are other hospitals closer that have melanoma explicitly (Manchester – google seems to suggest it does(.

It may be that you do SRS (if NHS allows) and then some new treatment – either try targeted again or ipi/nivo or a clinical trial. Again I am just a patient and my knowledge comes from this board and my own experience and my doctors but often the best advice is to see a melanoma specialist (and then cross check what they say against ideas on this board).

I do wish we would finance our NHS properly and get on with this – make it easier to get appointments quickly and not to limit treatment. I do hope you can find a melanoma specialist soon,

good luck Mark

Hi Rosie – I saw your other post. Seems your doctor is a melanoma specialist but still do please check, or get a second opinion. Doctors may have to treat melanoma but not be melanoma specialists so may not be up to date with the latest immunotherapy or trials, although you clearly have been treated with immunotherapy drugs so s/he must know about this stuff.

Still, do ask your doctor for clearer answers and reasons, if possible, so that you understand the decisions that are being made and that these are purely medical ones as opposed to NHS rules. For me SRS would seem reasonable plus some rethinking of the treatment. I have had second opinions in the US and they have helped. Theres nothing wrong in getting new ideas or having the same options explained in a different way or what the constraints are or if there is a clinical trial. For my first second opinion I didnt follow the advice but I understood better what i was doing. For my second second opinion (same doctor), i followed the advice; it worked! 👍

I dont know about posting profiles – it really does not seem possible any more but in the old days you could post your history in one place and it made it easier for others to understand (and you too, helps you remember!!! 😊)

good luck Mark

To your point about NHS, Mark – what I understood from our experience here in the UK, NHS is not a homogeneous entity. It is segmented into trusts and every trust has it’s own governing body and it’s own ways to save money. In some trusts doctors are under pressure to not request above a certain sum in a certain period. I was explicitly told this by several doctors while dealing with an unrelated condition and so when we had to deal with melanoma we asked to transfer to a different hospital (that is under it’s own trust) where for whatever reason they have much better funding, run lots and lots of trials and I am certain would have no problem requesting a second trial of Ipi/Nivo if medically appropriate. I am also quite certain that Royal Marsden (which is under its own “Royal Marsden” trust as well) would be similar in that regard.

The practical point here is that, Rosie, you can transfer your care to a different hospital. It is allowed on the NHS for some conditions including melanoma and independently of where you live. For that you need someone in the hospital to write a letter to your GP that they will take you on. And for that you would need first a consultation, which of course would also tell you what treatment they suggest and you can then decide. A consultation can be private, if you want to transfer to be treated at theirs the transfer can be on NHS. Of course that would entail moving to that place temporarily.

But perhaps also having a consultation would make your team in Glasgow change their mind and they would treat you accordingly?

One of the articles that you posted says that Ipi+nivo has similar risk and better response rates…so basically that ipi/nivo is better than just ipi. This is not surprising, basically all the data I ever came across shows that this is the default treatment for patients who progressed on nivo alone.  But there are some details that may change it for a specific patient and that’s why we need doctors…

 

I think whatever you decide (to start on your treatment on Monday or not) you should arrange for second opinion regardless. You can then do srs or add nivo. And btw it would be via phone and email no need for in person meeting precisely because of Covid…I estimate it can be done in the span of two weeks if you have all your files possibly faster…

But if you don’t want to do it – of course this is also your right! However in “an argument”between you and your doctor ultimately she will be the one deciding unless you have another doctor who agrees with you.

 

in any case – best of luck!

Thanks to both of you!

Melwave – I am British but live in the US and am fortunate to have good insurance. My “dream” is to live back in the UK, but I want to learn more about the NHS as I fear it may not be able to take care for me (based on some of MarkR’s posts). For example, I had side effects on keytruda, in the US they took me off for three months ago then tried again: no side effects (although admittedly it didnt work! I needed TVEC too). Under the NHS I fear they would be more reluctant, I think to save money. I believe in the NHS ideal but I think it needs substantially more funding – perhaps even a 50 percent increase, I fear we are doing it on the cheap and ruining the NHS, its overworked staff and the sickest patients.

Rosie – you can start the treatment AND get a second opinion (I believe!). In the US my doctor was keen for me to take a second opinion to go through all the different options again. Both times it helped. Even if you dont change your strategy, having the second opinion provides reassurance that you know what you are doing.

I like it that your doctor did mention trials, that’s a positive sign. I dont understand the non SRS, so do please get the reason. I dont know about the brain and whether ipi works better there but the obvious approach is ipi/nivo. Ipi mono tends to have less success (I dont know about the brain, and also I dont know the figures for those who had nivo first and then ipi), but also its more toxic (i survived only one dose).

It may seem a pain but I would get a second opinion too. Not to undermine your doctor (although I wish s/he could explain a little more). But because you have difficult decisions ahead so you want more info.

I wish one of the experts would chip in and help us! Good luck Rosie

Hey Fiona!

I am glad you are getting a quick start on your ipi treatments. I guess I’ve sent you all the pertinent information I have.  However, I would stand my ground and demand answers of the neurologist about why (at least on the surface) they are recommending against what is now standard of care for melanoma brain mets – ie COMBINING SRS with immunotherapy.  I wish you my very best.  Celeste

I did another quick search for you and found:

From the blog posts I already shared with you – I think these in particular are pertinent:

From Nov 2018:  SRS and immunotherapy in melanoma brain mets as well as other organs – link = http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/11/srs-and-immunotherapy-in-melanoma-brain.html

There are many links contained within the report above.

Then there is this, also from 2018:   Repeated SRS for brain mets???? – link = https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/repeated-srs-for-brain-mets.html

Finally, there’s this –

Management of brain metastases in melanoma.  By Rutkowski, Kiprian, Dudzixz-Sledz, etal.  Curie Institute-Oncology Centre, Poland.  2019.

It is a good review generally – link below – quote below that….

https://journals.viamedica.pl/oncology_in_clinical_practice/article/download/60406/48255

“In about 50% of patients new metastases or progression within previously treated
lesions will be detected. However, these are not situations disqualifying from further therapy…”

Hope these help.  It is a shame that at times we must fight for access and appropriate care, but it’s our life and we have to stand up for that.  I wish you my best.  Celeste

Hi Fiona,

It’s me again!! 😊 I know you sound a bit worried so I will reply even though I don’t know too much.

You only have brain mets, right, nothing else? It’s not clear to me why they dont do SRS on the mets and also on the one that they think is “seeding” the others. (Not sure about this seeding theory). Is the original one too large to be done by SRS? (Experts would know). Ask the neuro person why s/he cannot zap the 5 smaller ones? The larger original one? Even if the larger one is “seeding” (not sure about this theory), why not zap the smaller ones – at worst that buys you time, at best it makes it easier for the immunotherapy to work.

Again, am not sure why you would do ipi alone and not ipi/nivo.

If you dont get convincing answers, or ones that you understand, I would follow Melwave’s advice and get the second opinion. She explained how to do it on the NHS and if true it seems a good idea. I would have done this long ago. I like taking trains too so I would do the trip to London or Manchester.

I only now just saw Celeste’s extra post and have not read the articles, but i do agree with the conclusion. Just because you get new mets does not mean that further therapy will not work. In your case it would seem to be SRS plus ipi/nivo, and looking out for trials if the ipi/nivo does not succeed.

Good luck Fiona, I hope you get clear and convincing explanations and a plan for how to beat this disease. I really would seek a second opinion.

have a good weekend Mark