Melanoma Research Foundation | guynamedbilly | Activity https://forum.melanoma.org/user/guynamedbilly/activity/ Activity feed for guynamedbilly. Tue, 21 Apr 2026 14:14:56 -0400 https://buddypress.org/?v= en-US 30 hourly 2 e7c9c7ec0f529cb71a8a21ca122aa092 guynamedbilly replied to the topic Success stories with only one dose opdivo/yervoy? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-stories-with-only-one-dose-opdivo-yervoy/#post-280323 Thu, 20 Jun 2024 07:57:29 -0400 I have read stories like that, but like you, I wouldn’t accept that answer without pressing some.

Definitely see a melanoma specialist if you aren’t. I’ve had great experiences with MDANDERSON.

Without knowing specifics of his reaction, there are possibilities to use novel treatments to reduce the side effects. I received Tocilizumab a few…Read more

]]> bd97ecb3b7b743d768545f04a52445cd guynamedbilly replied to the topic Cognitive decline in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/cognitive-decline/#post-280322 Thu, 20 Jun 2024 07:47:51 -0400 It has happened to me a few times. I was on the NKTR trial a few years ago. I was on it for about 8 months and I realized that my thinking was affected, but it wasn’t until I’d been off of it for about 2 months that I realized I didn’t remember most of the first four months of the trial.

I’ve had times where I knew my thinking wasn’t…Read more

]]> aafe214b72fd5a4b03f564bca62a9fae guynamedbilly replied to the topic A little encouragement from a 7 year stage 4, TIL, Rad, Chemo, Immuno, survivor. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/a-little-encouragement-from-a-7-year-stage-4-til-rad-chemo-immuno-survivor/#post-280132 Mon, 25 Mar 2024 03:29:53 -0400 Thanks Celeste and Ed. That’s actually something I’ve thought about regarding TIL. I didn’t feel like there was much info out there when I was looking a while back. Maybe I will put that together

]]> d8e31f4c35f3ef96e86b92bd1dc41177 guynamedbilly replied to the topic 6 years cancer free, stage IIIA in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/6-years-cancer-free-stage-iiia/#post-280128 Sat, 23 Mar 2024 19:29:00 -0400 Awesome update. 1 Year clear myself

]]> de528fa16e99aebb3a9fe181ee084351 guynamedbilly started the topic A little encouragement from a 7 year stage 4, TIL, Rad, Chemo, Immuno, survivor. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/a-little-encouragement-from-a-7-year-stage-4-til-rad-chemo-immuno-survivor/ Sat, 23 Mar 2024 19:27:38 -0400 It’s been a while since I posted here, but I know how much encouraging stories can help us out, so I’d like to update ya’ll.

I was diagnosed Stage 3 with a deep tumor with no mutations 7 years ago. It was in one lymph node. I was in my early 30s. I did Nivo for a year or so, having a few local recurrences, and received radiation there too.…Read more

]]> 55021ca8221ef435e63830edb9578212 guynamedbilly replied to the topic edification ask in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/edification-ask/#post-275594 Fri, 03 Sep 2021 05:48:18 -0400 You can see lymph nodes on CT scans as well.  Pet scans are more expensive, so more often denied by insurance.  It’s my understanding that the Pet makes it easier to see generally what is going on internally, while the CT let’s you see specifically what is going on.  Meaning, it’s harder to miss something on a Pet scan.

Not exactly an expert th…Read more

]]> 03d1f382301408a90448c9266e791ca0 guynamedbilly 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-275593 Fri, 03 Sep 2021 05:39:22 -0400 I have done the full 4 cycles of Ipi/Nivo 3 times so far, and a 4th is a possibility that my Dr has talked about.  My tumors seem to respond to the Ipi, but then after switching to a maintenance Nivo, they slowly creep back in.  It’s never made me NED, but it’s worked at keeping things mostly stable so far.

I don’t think the side effects got w…Read more

]]> 2c41ba6be02df7dc9c98f69e21f0ac17 guynamedbilly replied to the topic The TIL process in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/the-til-process/#post-275592 Fri, 03 Sep 2021 05:28:41 -0400 Thanks for the write up.  I’ve been stuck in TIL limbo for over a year so I wonder if you’re willing to share which hospital did it.  I had cells harvested and everything lined up at MDAnderson, but then they put their til program on pause.

]]> ed7329722bb1efa6c917dcc6f84aad83 guynamedbilly replied to the topic More ASCO - anti-LAG-3 plus anti-PD-1 and new drug added to the ipi/nivo combo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-asco-anti-lag-3-plus-anti-pd-1-and-new-drug-added-to-the-ipi-nivo-combo/#post-275172 Mon, 28 Jun 2021 02:05:01 -0400 I was one of the rats in this case, received Nivo+Ipi+Toci last year, but not as a trial.  I had received the toci to manage the effects of another trial, but continued it into nivo+ipi coming off of that.  I think my doctor might have made a unique maneuver with the insurance for them to approve it, because they refused to continue after the f…Read more

]]> 5696ef7c5933ddba65d4bc69e68617de guynamedbilly replied to the topic Non completion of Ipi/Nivo combo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/non-completion-of-ipi-nivo-combo/#post-275142 Sat, 26 Jun 2021 14:44:28 -0400 Good luck.  It causes a lot of people problems, but sometimes it don’t.  I have completed the full four doses a couple of different times.  Only developed colitis towards the end of the last time.

]]> ca8b586a70a38f3edac12a72d7c89ac3 guynamedbilly replied to the topic ASCO 2021 - here we go! Intralesional/intratumoral therapy. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/asco-2021-here-we-go-intralesional-intratumoral-therapy/#post-275093 Wed, 23 Jun 2021 22:30:02 -0400 Thank Celest and Ed, that’s kind of what I was finding too.  Lots of enthusiasm about investment in their vaccine, not a whole lot regarding efficacy.  My brother had suggested I look into it, but there wasn’t much info.  Hopefully it does end up being useful in combination with just the right cocktail.

Ouch Cel, that’s a heck of a souvenir.  I g…Read more

]]> 4fc1efa987052937ea29152b000fe83d guynamedbilly replied to the topic ASCO 2021 - here we go! Intralesional/intratumoral therapy. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/asco-2021-here-we-go-intralesional-intratumoral-therapy/#post-275072 Tue, 22 Jun 2021 15:30:13 -0400 Thank you for the write up.  I read it this morning.  It’s reassuring that there’s so fast r&d in cancer treatment going on.

I wonder do you know if there was much info about the mrna cancer “vaccines” in the conference?  I was reading a little about the BioNTech one because a nearby hospital is participating.  Patient outcome information mig…Read more

]]> acebe9970297076a89968c16947f5ea1 guynamedbilly replied to the topic To TVEC or wait for TIL, that is the question in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/to-tvec-or-wait-for-til-that-is-the-question/#post-275060 Mon, 21 Jun 2021 14:14:29 -0400 Thanks Mark.  There are other trials they are looking into for me as well that I’ll hear an answer about this week, GPER and Dragonfly.  Not sure if I’ll qualify yet.  I haven’t asked about the LAG3 news as I hadn’t seen that yet.  Thanks for pointing it out.  I’ll email them about that.  I think your assessment is right, TVEC is better for lower…Read more

]]> effbc4ad7e8f6ecf22e7d15d985aca3b guynamedbilly's profile was updated https://forum.melanoma.org/activity/p/4944/ Sun, 20 Jun 2021 15:05:40 -0400 0 e95b79658b95b094e70e777cb72e9ec5 guynamedbilly replied to the topic Opdivo causing inflammation in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/opdivo-causing-inflammation/#post-275054 Sun, 20 Jun 2021 15:03:41 -0400 Wow that would be a scary response.  Never heard of one that extreme to Nivo.  I assume they will be holding off on treatments for a while, but hopefully the Doctor looks into what caused it more.  Good luck.

]]> 64e2d2e6050b34de9a5b4f9877453607 guynamedbilly started the topic To TVEC or wait for TIL, that is the question in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/to-tvec-or-wait-for-til-that-is-the-question/ Sun, 20 Jun 2021 14:52:27 -0400 Greetings all, been a while.  If anyone has experience with TVEC, I’d appreciate your opinion.  I’m a stable stage 4, and have been pretty stable for mostly two years now.  I’ve had many different treatments, almost always with mixed results, so my goal is to kick this into overdrive and get TIL and I’ve been waiting for that since before last su…Read more

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