› Forums › General Melanoma Community › Update from my clinic appointment re possible brain mets treatment
- This topic has 17 replies, 4 voices, and was last updated 3 years, 3 months ago by
MelWave.
- Post
-
- January 21, 2021 at 9:54 am
<p class=”p1″>Hi just wanted to give an update from my clinic appointment today with my oncologist. I’m so worried now, if I wasn’t already!. As some of you know, I was going to find out what the plan was for treatment of recently discovered brain mets (see my previous post). I thought I’d be offered SRS for the two more recent lesions and wasn’t sure what was happening with a brain lesion that’s growing slowly which was treated with SRS 2+ years ago.</p>
<p class=”p1″>My oncologist has been in discussion with the neurological team and they are not keen to do SRS. This is because firstly, they think the previously treated lesion is probably tumour still, and, secondly, they have seen two new areas which they think is very early, small new growths! So potentially five tumours!🥺🥺</p>
<p class=”p1″>I’m currently on nivolumab, have been for two years, my oncologist is suggesting we stop the nivo and start ipilimumab single therapy?</p>
<p class=”p1″>We did debate having nivo and ipi together but she couldn’t find any strong evidence that it would be better for me. Because I’ve already had one dose of nivo/ipi two years ago and was then on nivo alone until now.</p>
<p class=”p1″>I have to say I’m shattered and would appreciate any advice or information anyone has? Celeste, you have given fantastic advice but I’m not sure where to start looking! My story is not really the norm! That’s the plan at the moment, ipi and nothing else. But my oncologist is open to any new information I can find?</p>
<p class=”p1″>Anything greatly appreciated! </p>
- Replies
-
-
- January 21, 2021 at 10:45 am
Hi Fiona, while early brain trials checkmate 204 and ABC and now ABC X trial in Australia looked at Ipi plus nivo vs just nivo and the finding were absolutely clear that in patients showing no symptoms that Ipi plus nivo worked best and was durable. Now the trial had size of tumor and number of tumor criteria. It is hard to say for sure because there is no specific data for your situation. The ABC X trial is combining Ipi plus nivo and SRS but I don’t think they have published any findings yet.-
- January 21, 2021 at 12:27 pm
Thanks Ed, I’m worried about why the neuro oncology team have said no to stereotactic radiotherapy! I know they now seem to think the lesion zapped 2 years ago is now potentially tumour but I don’t understand why not the other 2 small ones? They caught me on the hop today with that one! And the two new focal points that might be another two very small ones! My melanoma oncologist is going with their advice understandably but couldn’t shed much light on why?And re the combined ipi/nivo my consultant read a report, from 2017 I think? Saying braf + had similar results with ipi alone as with ipi/nivo for brain mets? Does that sound familiar to anyone?
Sorry I’m now just dissecting the whole appointment!
-
- January 21, 2021 at 12:40 pm
No that is wrong and anything from 2017 is way out of date based on the two trials I gave you above which is where the current research is. Here is checkmate 204 results in written form published in New England Journal of Medicine, for you to go through, they break down different categories. https://www.nejm.org/doi/pdf/10.1056/NEJMoa1805453
-
- January 21, 2021 at 12:56 pm
Two more links to consider, first is talking about research of patients who have progressed on Pd-1 drug and two different trials are examined in the video. ipi on it’s own works historically in this population at around 13% and in these two trials, one being active using 70 patients but with no control arm and the second trial was prospective with 400 patients (looking back at old patients and how they did based on treatments) and when ipi is combined with nivo or pembro it works for about 27% of patients and when ipi is given by itself historically it worked for 11%. Second link gets into brain mets near the end of the article. https://www.practiceupdate.com/content/asco-ipilimumab-alone-or-in-combination-with-anti-pd1-therapy-in-patients-with-metastatic-melanoma-resistant-to-anti-pd1-monotherapy/101928 https://www.cancernetwork.com/view/what-do-when-antipd-1-therapy-fails-patients-melanoma-
- January 21, 2021 at 1:03 pm
Sorry about first link, I didn’t have to join to watch it when I used “Google” search. I typed in to the google search ” melanoma treatment after Pd-1 progression adding back Ipilimumab vs Ipilimumab plus Pd-1″ at this point I clicked on title called http://WWW.practice update.com (below title is said ASCO Ipilimumab alone or combined with Anti pd-1) -
- January 21, 2021 at 1:20 pm
ASCO 2020 abstract 10005 search will bring you to retrospective trial data of using ipi or ipi+nivo at progression. Also at the end of Dr. Omid Hamid article talks about progession. https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.10005 https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.10005
-
- January 21, 2021 at 1:19 pm
Thanks Ed, that’s so helpful! Alongside Celeste’s previous info, I’m now getting a tad more worried! 🥺 The link to Practice update.com looks very interesting but I have to join to view? Happy to do that but just checking?Sorry for all the questions! I’m just so worried! Feeling a bit, last chance saloon 🥺
-
- January 21, 2021 at 1:21 pm
Sorry about that link, look above I gave google search information that I used, it won’t ask to join when you go there using google search first.
-
- January 21, 2021 at 4:50 pm
Hi Rosie,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 doctor.
I am also in the UK – did you say you are in Scotland? The big ipi/nivo trial was managed by dr Larkin who works in Royal Marsden hospital in London. He is very well respected (although I have no personal experience with him). If you have means to pay I would consult him or his colleagues privately ASAP. They can then speak directly to your doctor and your team. However I think you can also have second opinion on the NHS for free but I don’t know how one practically arranges that, you would need to talk to Pals in your hospital or perhaps your GP.
you can also ask to transfer your treatment to Royal Marsden or a different hospital (on the NHS- in a similar situation my partner did transfer hospitals). I don’t know if it is practical for you.
Another good hospital is Guy’s in London and closer to you there is the hospital in Manchester. Although any second opinion would probably be remote.Best of luck and please get that second opinion.
-
- January 23, 2021 at 4:49 am
Thanks Melwave, yes I’m in Scotland so in the present Covid climate I wouldn’t be able to go elsewhere. Plus I’ve been very happy with the care my oncologist has given me until now. She would, I think 🤞, be amenable to any information I can provide as I think 🤞🤞she is very progressive. She does worry that I wouldn’t tolerate the ipi/nivo again. Plus she would need to apply to be able to give me it again, which may take time!🙄 A big part of my concern is the decisions being made by the neuro oncology team about no SRS! But how do I address that?My head hurts! And it’s not the tumours themselves that is causing it!
-
- January 23, 2021 at 5:48 pm
Hi Fiona, came across this video today, I hope it copies and works this time. 3:30 min point talks about ASCO poster 10005 which is a retrospective look at 300 melanoma patients and how they did when they progress on Pd-1 drug and are given either ipi by itself of keep giving Pd-1 drug and add ipi to it so that patients is getting both drugs at same time. 11% response in ipi by itself and 32% response in adding ipi to Pd-1 drug even after progressing on Pd-1. https://ascopost.com/videos/asco20-virtual-scientific-program/douglas-johnson-on-melanoma-clinical-trials-update-on-pd-1-and-ctla-4-blockade/ -
- January 23, 2021 at 6:13 pm
Thanks for that Ed, looking at this I can see where my oncologist is coming from, I think! She’s not totally against ipi/nivo combi but thinks I might tolerate ipi alone better, crystal balls at the ready! Should I just pick the long/short straw!🥺. Very good interview though, which makes you think!I don’t suppose you have any straight forward ones about SRS and zapping one poor responder twice? Or zap some but not all? This is a worry to me!
-
- January 23, 2021 at 5:39 pm
Rosie, I would get a second opinion from Royal Marsden in your shoes. It means absolutely no disrespect to your doctor that you are getting it, just better to have two people looking at your case. The doctor would also know very well what neurosurgeons would do in his hospital and will be able to advise you on that.In case you decide to do it is easy to arrange, just go to their website and write them an email. You would need your medical summary from your doctor and results of your latest scans.
Good luck whatever you decide!
-
- January 23, 2021 at 9:18 pm
Hi Fiona, I think the one to try is James Larkin at Royal Marsden. In the US this is the kind of thing we would do, or find an expert relatively nearby. Not sure how this is done in the UK, but I would do it.My intuition would be to try SRS on the problem areas followed by ipi/nivo. I hope they let you do this.
best wishes Mark
-
- January 24, 2021 at 9:54 am
<p style=”text-align: left;”>https://www.royalmarsden.nhs.uk/private-care/second-opinion</p>
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 all work together anyway.Try to provide in addition to your medical summary the latest scans (MRI) themselves.
sorry I don’t know how to arrange this on the NHS – for that you would need to contact PALS.
-
- You must be logged in to reply to this topic.