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Thankyou so much for the advice and guidance so far, it all really helps when trying to deal with melanoma. My dad recently completed SRS for 3 intracranial brain mets. Dad is on targeted therapy enco/bini and this was stopped for a few days before, during the treatment and after- in total about 8-9 days. Dad was on dexamethasone 12mg for the SRS and the day after then it was stopped. The next day he started feeling unwell and this progressed to then a hospital admission. A CT showed a new 1.5mm lesion and swelling around the original mets. Unfortunately then an MRI showed a further 2 small lesions. Dad did well and was discharged from hospital 2 days later and is feeling his usual self again, so thankful for this as it is a worrying time.
The oncologist now is continuing targeted therapy hoping that we have some more time however he has now said things aren’t looking great.
Has anyone had melanoma progress this rapidly when off treatment?
It seems SRS is off the table, is there a time frame when you can use SRS again?
Does anyone have any other treatment suggestions?
Feeling like we are running out of options. We are being treated in the NHS and at times I feel it’s not person specific as I feel dropping dads dexamethazone that quickly wouldn’t have helped his symptoms however it did allow us to find the 3 new lesions. Dad is 56 still active, working and is his normal self so this all seems hard to believe.
Am sorry for what your father (and you) are going through. I am not a forum expert – I hope Celeste or Ed or others will read and offer advice.
I do find it a little strange that they found new brain mets a few days after the SRS – its not clear to me why they would not have caught these earlier and then done SRS on them.
I am not an SRS expert but I would guess it could be done multiple times.
I am not sure of the evidence but Celeste believes that radiotherapy plus immunotherapy go well together – my melanaoma doctor has never said this so I dont know if true but sounds plausible.
I would think you either continue targeted therapy plus SRS (experts might be able to tell you whether targeted by itself can work) or go the immunotherapy route (possibly with SRS)
If your father has been on targeted for a long time and they dont think its working, that would suggest immunotherapy (plus SRS).
I am interested in NHS cases because I am British but live in the US. I would like to return to live/work in the UK, but the more I see of the NHS (simply because it is underfunded) the more I know that rationally I cannot. I do get a sense that the UK/NHS doctors are much less innovative or aggressive than US melanoma specialists, which concerns me. I dont think its right to feel that you are running out of options: the targeted might work, you can try more SRS (I think), you can go to immunotheralpy, you can look for trials. I hope the NHS makes these available
My wife has had SRS twice. Nov 2018 and Mar 2020. Seems like they’d want at least 6 months in between, maybe 12. Our radiologist thought our US insurance would only pay for a 2nd round of SRS, not a 3rd rounds, so he actually went after 16 brain mets, majority of which were very small and not normally treated, but he wanted to get everything cleaned up. He also says the best SRS can do is get about 90% of the lesions, so there’s always some residual. But that’s one guy’s opinion.
Also, supposedly the targeted therapies have a better chance of working on brain lesions as they are “small molecule” and can pass thru the “blood brain barrier”. Immunotherapies are larger things and supposedly do NOT get thru the BBB. Though immunotherapies can be VERY effective in general for many.
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