Rosiepup

Sorry I know a good few of you have already given me your thoughts and loads of information in previous messages!
I really just need to get my head, pardon the pun,😬 round everything!
Sorry about being repetitive!
All advice and information has been greatly appreciated!
I just find it hard to fight the system, especially here in Scotland!

Hi all, sorry I’ve not been in touch for a while but I chickened out of getting a second opinion!
After my last update on this thread I met with the neuro oncologist an appointment arranged by my oncologist.

He reiterated that I was definitely not for further SRS at this time. He had discussed my case with the neuro oncology team and apparently the decision was taken for two reasons, I think!
Primarily because the new brain mets are soo slow growing it was felt rather than taking the risk of SRS complications, see what success we had with the four ipilimumab mono treatments.
Secondly, this is the one I’m not sure if I am right, because they feel that the met that has been zapped two years ago, is now a mix of both necrosis and further tumour. I have a copy of the last MRI scan results if anyone can help with that?
And he wasn’t for budging!
I’ve now had two ipilimumab mono treatments but I’m still feeling so worried sick about whether it’s the right thing? And wanting to try to be better prepared for all eventualities?

Can anyone help/advise me where to go now? Do I wait until mid April’s MRI Scan and then push? Especially for me to get a bit of backbone?! Thanks so much for any help anyone can give to this chicken!🙄❤️🙏

Hi it’s the pest again! Does anyone know of anyone or had personal experience of SRS after a previously treated brain lesion has potentially failed? Either treatments to other lesions or to the same lesion?

I’m just trying to get as much evidence as I can, even if it’s anecdotal?

Thanks 🙏

https://ascopubs.org/doi/full/10.1200/EDBK_243071

https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.10005

My oncologist also feels that for Braf positive and my history the results of ipi mono are a better risk? Not sure if these are similar? I’m not great with my terminology translations! All thoughts on this appreciated?!❤️

Sorry I know I’m probably being a pain but I’m struggling so much more this time after all these years!

I thought I was dead in 2015! Mets spleen and liver plus lymph nodes! Being a nurse I was nailing the coffin! But it was fantastic results from Braf/mek, then my brain mets. Been up and down mentally but always positive. Until now!
Brain. The more I research the worse it looks!  Two and a half years since first SRS and ipi/nivo doses. Not good results from either apparently for me!  Struggling big time mentally!

Thank you so much for this!❤️I’ll have a look at them today.
Yes, it’s an added pressure having to be our own advocates! But thanks to the information and support I’ve had from yourself and many others in this group I’m hanging in there! You’re an amazing team!❤️💞😘

Thanks so much for this. I’m convinced from what my oncologist has passed back, that the neuro oncologist doesn’t want to zap the newer brain mets because they think that the original lesion zapped 2+years ago is now potentially spreading or as she said ‘seeding’ elsewhere so not worth doing anything with the other lesions! I still don’t get why can’t they zap the others! I will get it first hand from the neuro oncologist a week on Monday but he seems to be saying no point zapping the others when you still have the original one ‘seeding’ all over the brain!😳🥺xx

Mark and Melwave, and everyone else who’s been a great support. Particularly Celeste and Ed. Thanks again all!

But the latest update is, Phone call from my oncologist for the first ipi treatment on Monday.

And a clinic appointment in a week with the neuro oncologist. Presumably for him to tell me exactly why he’s not doing stereotactic radiotherapy!🙄😒

So any studies/reports/anecdotal evidence would be greatly appreciated! I know I have had great help and advice from so many of you already with fantastic information! But I just probably could do with help fine tuning my thoughts! Thanks xx

Thanks so much Melwave, see my message above to you and Mark. I know a second opinion would be the ideal but I think time, risk and Covid restrictions make it very difficult!

Im still struggling with it though!🥺❤️

Thanks for your help Mark and Melwave ❤️
I have been trying to find more info but it’s not easy. Especially with my history! I feel resigned to go with the planned ipi as it’s due to start on Monday and the time it would take for a second opinion and then to actually get authorisation on the NHS would take too long. Plus Covid restrictions! I know that ipi is better than nivo alone for the brain so hopefully will be of some benefit 🤞

My oncologist does specialise in melanoma and has certainly a good knowledge of current thinking. But doesn’t want to take the risk of me not tolerating the combined therapy. Leaving me with little else!! She’s mentioned trials if this didn’t work. No details yet!

My big concern is not getting SRS, which I have questioned again! Still waiting to hear back 🤞

Do you think I’m doing the wrong thing?? Thanks so much for your help ❤️

Thanks for this Mark👍
my oncologist is a very good melanoma specialist and I do trust her! I’m  just struggling, as I thought I’d at least get the SRS? But that’s the neuro team’s decision?

I’m not sure where the patient profile is? The only thing I could find has very basic information space? Might be me though!🙄😬

I was going to start another post with maybe more relevant information than I posted before. I looked at recent scan info again and had forgotten some details!😳🙄 Thanks again and I hope you and others, don’t mind looking over the next post??❤️