Melanoma Research Foundation | Mk517 | Activity https://forum.melanoma.org/user/mk517/activity/ Activity feed for Mk517. Tue, 21 Apr 2026 23:24:20 -0400 https://buddypress.org/?v= en-US 30 hourly 2 b7deb813f21196fa30aa99f34e68fc64 Mk517 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275608 Mon, 06 Sep 2021 14:44:38 -0400 It is great to hear that others have made it through the 4 cycles multiple times! It’s been 2 years since my last round, so good point that they will be better at managing my side effects.

]]> 8b81de1c98d02f910022aa93dede1eea Mk517 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275607 Mon, 06 Sep 2021 14:41:51 -0400 Celeste, thank you so much for this info!

]]> 4e195451fd536c7edaafd807205e45ce Mk517 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275528 Fri, 20 Aug 2021 19:17:18 -0400 Wow 16 doses! My adrenals are already shot from my previous immunotherapy and steroid use, and my thyroid is borderline and being watched closely. As I’ve been told, once your endocrines are gone, you can’t make them worse! So that’s a plus.

Did you have any of the other side effects?

And did the trial make you NED?

 

 

]]> 7c5ec66cf31d3a05e536e486901bdb2c Mk517 started the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/ Fri, 20 Aug 2021 01:23:23 -0400 In June – Sept 2019 I made it through 4 rounds of ipi/nivo “flip dosing” (more nivo than ipi to reduce severe side effects) as treatment for my progression to stage 4 with brain Mets, along with cyber knife. I then did 4 more doses of nivo, stopping because of severe neuropathy in my arms and hands, and I was NED.

I had a recurrence in Nov 2020…Read more

]]> 973b9d282b569494b742a9814bd31306 Mk517 started the topic Has anyone received intrathecal topotecan for LMD in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-received-intrathecal-topotecan-for-lmd/ Wed, 18 Nov 2020 10:41:21 -0500 So about 16 months after brain mets, craniotomy, Srs, opdivo/yervoy x 4 and opdivo alone x 4, getting to NED, I now officially have LMD.

I have 2 obvious, visible tumors in my spinal canal. One has been “debulked” by my neurosurgeon because the pain was so severe. Now going to be treating both the tumor targets with radiation.

I am Braf + (I…Read more

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