Melanoma Research Foundation | AshyR | Activity https://forum.melanoma.org/user/ashr/activity/ Activity feed for AshyR. Wed, 22 Apr 2026 21:48:01 -0400 https://buddypress.org/?v= en-US 30 hourly 2 4c9fa1a40f5958a81cbe6b44bdbf915e AshyR replied to the topic Some more necrosis questions in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/some-more-necrosis-questions/#post-279575 Thu, 30 Nov 2023 20:38:38 -0500 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. Sub…Read more

]]> 8b4f8c6ce8711f55b77b3cc0edb5efc9 AshyR replied to the topic Some more necrosis questions in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/some-more-necrosis-questions/#post-279326 Sat, 07 Oct 2023 14:54:37 -0400 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 sub…Read more

]]> 6db4853b593b1976409a6ab7e9a95db5 AshyR replied to the topic Stage IV need help in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-iv-need-help/#post-279237 Thu, 21 Sep 2023 18:50:35 -0400 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 s…Read more

]]> 0170ff1cbb59f80be903b63e1bbaa7a1 AshyR replied to the topic Melanoma treatments and quality of life in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-treatments-and-quality-of-life/#post-278936 Fri, 21 Jul 2023 11:47:28 -0400 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

]]> c2cd9bfc24555f0b3742c7ab3b102453 AshyR replied to the topic Tafinlar fever in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/tafinlar-fever/#post-278802 Sun, 25 Jun 2023 15:46:28 -0400 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 S…Read more

]]> 9036af81b6fe9fe2b4da2462aeb335dc AshyR replied to the topic Melanoma treatments and quality of life in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-treatments-and-quality-of-life/#post-278801 Sun, 25 Jun 2023 15:25:34 -0400 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 par…Read more

]]> 4ae6cdf4bf2e790bf9c3a78558eb08a5 AshyR replied to the topic Brain mets success stories in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-success-stories/#post-278729 Sat, 10 Jun 2023 20:45:48 -0400 Hi melanoma friends,
My partner is still plodding along on his ipi/nivo journey.
He flew through first 3 cycles however just before the 4th started getting stomach cramps & frequent bathroom visits.
Dx with Grade II colitis so onto prednisolone 60mg, weaned down by 20mg every 3 days & C4 delayed by 2 weeks.
Unfortunately the diahorrea returned at…Read more

]]> 4e8a64ba53e2f3591a92e9ec743b738e AshyR replied to the topic Brain mets success stories in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-success-stories/#post-278513 Thu, 13 Apr 2023 09:32:37 -0400 Hi Ann! Wow what an amazing story!
So relieved to hear that he’s still powering on over 10 years later. That really brings me hope that my partner can also achieve long term success. He’s got youth (38) and an incredibly positive mindset on his side. As well as the very best meds and tech the NHS can offer. Anything is possible 😉

]]> e1cbd5e8ac0ea33660d3e2a87483e8c1 AshyR replied to the topic Brain mets success stories in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-success-stories/#post-278496 Sun, 09 Apr 2023 19:25:43 -0400 Oh also, do you know if immunotherapy can be given more than once if you know you’ll respond. Eg you’re NED for X amount of years (5-10) and get a reoccurrence? Can they Ipi/Nivo again?

]]> b25e79bb70319c4bccae87d123c0aa13 AshyR replied to the topic Brain mets success stories in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-success-stories/#post-278495 Sun, 09 Apr 2023 19:09:04 -0400 Hi Celeste,

Wow amazing, you certainly have been fighting and WINNING this battle for a long time.
Thank-you so much for your positive spirit and energy.
All of those articles are reassuring that everything has been done so far has been in the optimal order. He’s also BRAF positive so at least that gives us another option if needed.
Now we…Read more

]]> 07e42fb7b87de3792b5989d86c79ad64 AshyR started the topic Brain mets success stories in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-success-stories/ Fri, 07 Apr 2023 17:40:54 -0400 Hello,

Can anyone share their success stories with stage IV brain mets?
My fiance (38yrs) had his primary site excised 5 years ago with negative SNLB. A suspicious lymph node in his groin was detected last August. Two surveillance CT and brain MRI showed no spread of disease so lymphadenectomy wasn’t booked until this Feb 2023 (too long to w…Read more

]]> 51a3dc38f5c601108adca19a330278a1 AshyR became a registered member https://forum.melanoma.org/activity/p/53746/ Fri, 07 Apr 2023 17:09:29 -0400 0