This is where I have gone for treatment for the last 9 years and my oncologist is one of the authors of the article. I don’t expect everyone to be interested in a Canadian hospital, and its treatment history spanning 17 years which they break up into before ipi treatment (before 2012) and after, a kind of Dark ages vs the enlightenment period. I would just like to highlight a couple of key take away points. First, if you are stage 3 push to get a scan for brain mets and catch them before they become symptomatic. Second point is , we have come a long way in a short period of time! Last point, we follow not lead the way compared to our American friends when it comes to using SRS radiation and the use of using MRI scanning to catch melanoma in the brain early. I love the treatment that I have gotten and the people at the hospital but it floored me last night when I looked at the stats, 260 patients out of the 276 studies who had melanoma and brain mets were dead, with only 16 people surviving including me. I don’t know how to feel about those stats, 94,2% mortality rate. We have to do better!!! file:///C:/Users/Ed/Desktop/curroncol-28-00045%20(1).pdf
- January 22, 2021 at 12:49 pm
Not sure why article didn’t copy, so I will try it again. If it doesn’t work then by using google search, the title is ” A contemporary Report of clinical outcomes in patients with melanoma brain metastases’ lead author is William J.Phillips. file:///C:/Users/Ed/Desktop/curroncol-28-00045%20(2).pdf
- January 22, 2021 at 12:56 pm
BubblesParticipantVery good points, Edster!!! It is a shame we have to work so hard to advocate for appropriate care – but we do. Will try to post another way folks can check out this article with a link – https://pubmed.ncbi.nlm.nih.gov/33450821/
- January 22, 2021 at 4:39 pm
It is a free article so hopefully everyone can access it one way or another. Thanks for helping lead the way as our fav mouse!!! love, les
Thanks for finding me a link!!! Post works much better with the information!!! I wonder if they will study long term cognitive decline in cyberknife treated patients treated at the Ottawa hospital one day!!! I will be an interesting case study! Keep sticking people with those needles Celeste!!! The herd is just around the corner!
- January 22, 2021 at 4:56 pm
We’re better than this Ed! All of us!🙌👍🤔😬. I’ve lived with Parkinsons since I was 43 and my daughter was 5! And melanoma for the last 6+ years!
- January 22, 2021 at 4:40 pm
Struggling big time but never giving up!
But while I’m here,😬, thoughts re this?
Message re the decision about NO further SRS for me,
As there are two more lesions they can’t offer it because they can’t give sterotactic radiotherapy to the area that has already had it.
🤷🏻♀️😒 But why not other areas??
Sorry, I’m being a pain again! 🤦🏻♀️
Mark_DCParticipantWell done Ed, and thanks for posting, I didnt really understand the abstract but I read the part saying median survival = 3 months and I kind of shuddered. I hope we keep lucking out, and remembering how fortunate we have been and hope will be.
- January 22, 2021 at 7:53 pm
Dear Fiona, I am kind of puzzled by your case, I dont understand why they dont try more SRS (zap some of these early ones), and also maybe an ipi-nivo combo (not ipi alone) (am reading some of your other posts). I am British but live in the USA, so I am keen to understand treatment in the UK (I want to come back home!), but to me it always seems rationed (if you “fail” a treatment they dont seem to re-challenge) and you have less flexibility. I love the NHS, but not how it has become so underfunded. So please keep us updated with how you get on. Like Melwave said I would be tempted to try Royal Marsden, because I am pretty sure they have experts there, but again you might be rationed. I dont know how you get an appointment there, but my sense is that Larkin (?) there is an expert. Also try to follow MarkR posts but he may have private insurance. Really wish you good luck and better news
Thanks Mark, Celeste, Ed and Mel, my brain is like fudge at the moment and it’s not the lesions that are responsible! Unfortunately I also have Parkinsons Disease just to sicken my happiness! I just don’t know what to do about this situation! I really respect my oncologist but I’m not sure about the neurological team! With Covid restrictions where do I go from here?? My case is difficult having apparently failed possibly with my first SRS treatment and not done too well with my first ipi/nivo two years ago! Which I put down to the overlap of targeted therapy and ipi/nivo. Part of me wonders if I stopped the targeted therapy too soon? Who knows!🤷🏻♀️🥺 Thanks and thoughts are again appreciated!❤️
- January 22, 2021 at 8:13 pm
hxcadamParticipantI think the US is definitely on board with early MRI scans once progressed to Stage 4 but yes its probably very hard to get insurance to agree to an MRI for a Stage 3 patient. When I progressed to Stage 4 in Jan. 2020 I had an MRI right away which found 2 small lesions. Got 1 SRS treatment for each lesion and today they’re saying both look to have had a complete response. I’m also on Opdivo so maybe that helped as well. Have not done the combination immunotherapy yet but did start BRAF targeted in May 2020.
- January 28, 2021 at 1:29 pm
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