AshyR

Hi MB,

Sorry to hear about this very scary and unexpected time for you.
My partner was also diagnosed with brain mets (x4) this March. It was a huge shock. He’s only 38. He had emergency neurosurgery for the biggest one in his cerebellum which went well. Fortunately he was also able to have the SRS radiation to the rest which was straightforward with minimal side effects (just a couple of bald spots!). Completed 3 rounds of the double immuno (ipi/Nivo in the UK) but colitis stopped the 4th. Still going on the single drug every month.
Follow-up scans in June showed the mets had all shrunk by >50%. Yay! He’s completely fine now – no symptoms, back at work, eating lots, living his best life. Had another round of scans last week so anxious about results but feeling pretty confident they’ll look good.

Our consultant told us the dual combo immunotherapy has a 50% of working on brain mets (25% complete response, 30% partial response), even without radiotherapy.

I also work in a hospital & have come across people who have had WBR – apart from an itchy/hot scalp, the side effects don’t seem to be too bad.

Hope this somewhat reassuring to hear that brain mets can be kept at bay with immuno. I really hope your wife is one of those who responds well as this treatment is a melanoma gamechanger!

Hi Mitch,

I’ve also read a little of How to Starve Cancer and I’m interested to know why you’ve chosen to go for a keto diet when it mentions a few times in the book that keto diets aren’t effective for melanoma as they use fat rather than glucose for fuel.

https://www.sciencedaily.com/releases/2017/01/170112141359.htm

Just thought I’d give an update on how all this is turning out.

Last week we received the results of the interval brain MRI to check on the suspicious area of ?inflammation vs metastasises.

Report read ‘no evidence of any new intracranial metastases seen. No evidence of active cancer seen in previously treated metastatic deposits. Subependymal enchancement seen in previous study not present – likely motion artefact’

Our oncologist is pretty confident he has had a complete response to treatment.
Amazing news! So relieved he’s had such a positive response.
Hope this gives hope to many others out there !

Hi Judi,

Thanks so much for your update – so glad to hear the seizures haven’t returned.
This necrosis thing can be very complicated.
My partner recently got his brain MRI 6 months post SRS to 3 x tumours and 3 cycles ipi-nivo
Everything has shrunk to almost nothing with nothing new (yay). However the report also says
‘There is some apparent subependymal enchancement (but no concomitant non-contrast signal abnormality) affecting the floor of the 4th ventricle in the caudal pons – could therefore be artefact but exclusion of any left VI or VII cranial nerve palsy should be undertaken on clinical examination to assist in excluding a new site of metastatic disease as well as repeat brain MRI in 6-8 weeks time’

In laymans terms, they basically said they hope it’s a just a bit of post-treatment effect but want to do a repeat a in 6 weeks time too make sure nothing new has popped up there..which is fine by us!! Really hoping it’s just gliosis and nothing new to worry about.

Just can never really quite relax with these brain mets!

I’m really sorry to hear it she has developed brain mets.
There are definitely still options!
Depending on the size/amount, SRS (radiosurgery) is an amazing treatment which ‘stops them in their tracks’ as our doctor told us.
My partner also developed brain mets in Feb – terrible headaches & a few mini-seizures – was terribly scary. But he had SRS & dual immuno & they’ve all significantly shrunk >50% with nothing new.
So I hope this is an option for you.
Let us know how she’s going xx

Hi Celeste,

As always, thank-you for your barrage of amazing facts.
I’m particularly interested in this one
‘There are some studies that show systemic treatment with immunotherapy while the positive node/lesion remains in place provides better protection against progression and can make nerve damaging surgery unnecessary.

As you know my partner has brain mets.
He had 2 malignant groin lymph nodes discovered last year that he had a lymphadenectomy for – however they could only get 1 out. The other 1 was too close to the pelvic wall/nerve bundles so they had to leave it. He has no other body tumours so that’s the one we’re keeping an eye one – it’s shrunk from 3cm to 1cm with 3 cycles of ipi-nivo (yay!). Brain mets have all shrunk >50% with SRS.
So it’s nice to know that lymph node could actually be assisting in this positive response as I was a bit upset they couldn’t get them both out initially.

Mitch – I wish we had been given the option of immunotherapy when they detected the lymph nodes. In the UK, surgery is still the main therapy for resectable stage III.
While waiting for the lymph node op it spread to his brain. There was nothing on his November brain MRI & in February he needed a craniotomy to remove a 3cm cerebellar lesion. It moves so fast & they said was probably in his brain for months but microscopic cells that couldn’t be seen in any scans.
I really hope your disease isn’t as aggressive as his! I’d take colitis over brain mets anyday…