Melanoma Research Foundation | gopher38 | Activity https://forum.melanoma.org/user/gopher38bis/activity/ Activity feed for gopher38. Tue, 21 Apr 2026 12:26:38 -0400 https://buddypress.org/?v= en-US 30 hourly 2 096005780f8a22f84c3d571b57bf0908 gopher38 replied to the topic The TIL process in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/the-til-process/#post-278607 Fri, 05 May 2023 20:38:00 -0400 Hello Judy.
I had horrible pain in my legs, feet and toes after my combo yervoy-nivo treatment. At the cancer clinic, they didn’t think it was immunotherapy related at first, because they said that they really hadn’t seen it in other patients (chemo, yes; but immunotherapy, no). Onc suspected mel in the spine and/or spinal cord fluid. Had to go…Read more

]]> c957d94d6583043b51e88428d27f4f78 gopher38 replied to the topic TIL Trial for Brain Mets - FYI and Q&A in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/til-trial-for-brain-mets-fyi-and-qa/#post-278401 Mon, 20 Mar 2023 15:52:39 -0400 That sounds really positive, and well worth the ordeal. Even the white-hair side effect is often a good sign, no? Hope it continues and thanks for sharing your lived-knowledge of the process, good and bad.

]]> 1529a6006e80d3105b54247189707fdc gopher38 replied to the topic Updates to the Patient Forum! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/updates-to-the-patient-forum/#post-278341 Wed, 01 Mar 2023 15:17:40 -0500 Thanks for your work.

]]> 0057893c28c10949770077468a80230e gopher38 replied to the topic TIL Trial for Brain Mets - FYI and Q&A in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/til-trial-for-brain-mets-fyi-and-qa/#post-278340 Wed, 01 Mar 2023 15:16:39 -0500 Well, I’m still visiting and reading (visit the FB page also though). You wouldn’t see a post like this on the FB pages, I think. Anyway, thanks for the info. Hope your wife gets info the trial, Rich, and that both of you have good results.

]]> 7e591f949506ae80d9b842f4deb6be47 gopher38 replied to the topic TIL Trial for Brain Mets - FYI and Q&A in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/til-trial-for-brain-mets-fyi-and-qa/#post-278154 Tue, 24 Jan 2023 16:58:57 -0500 Also wanted to say thanks for posting your experiences. Hope you get an excellent response.

]]> 315c8d19165e4189c4c41d7892360b17 gopher38 replied to the topic recurence ...what's next. not a good doc story! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurence-whats-next-not-a-good-doc-story/#post-277755 Tue, 15 Nov 2022 15:16:02 -0500 My onc scheduled a brain MRI right after we learned that I had distant progression from the original site. I think he wanted to get a baseline on where we were, encompassing all parts of the body. I’m not sure if that’s standard practice, but it seems wise to me. Perhaps insurance coverage plays a part also.

]]> c0b16d3ac2e63d1647722623a5837d8d gopher38 replied to the topic recurence ...what's next. not a good doc story! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurence-whats-next-not-a-good-doc-story/#post-277744 Mon, 14 Nov 2022 16:43:58 -0500 Well I’m still lurking on the forum, and I certainly hope it doesn’t go away, because I know it’s been very helpful to me. Both for the support/commiseration aspect, as well as the more technical/knowledgeable support from the Bubbles and Eds of the world. I think there are still quite a few people lurking here, even if posts are down. Good…Read more

]]> 09c62cc7fbae6764c944ada8111c0333 gopher38 replied to the topic recurence ...what's next. not a good doc story! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurence-whats-next-not-a-good-doc-story/#post-277682 Mon, 07 Nov 2022 23:23:30 -0500 I think I had a much improved response from ipi+nivo, so I wouldn’t count that out. And I think you should definitely be tested for BRAF immediately. I’ve had some what I believe will be permanent (but what does that mean when you’ve got Mel IV) nerve damage, but yours sounds worse. It sounds to me like you should be looking for a new care…Read more

]]> b8de8b428ae288c8a463ea0925f93b84 gopher38 replied to the topic immunotherapy affected liver-any advise? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-affected-liver-any-advise/#post-277610 Fri, 28 Oct 2022 15:44:55 -0400 My AST/ALT numbers were much higher than this, but it was due to targeted therapy, not immunotherapy. I had to stop for several weeks while my liver recovered and then they moved me from whatever the first targeted therapy was to TAF/MEK, which I’ve been tolerating well.

PS: just went back and looked in MyChart and by AST was 715, ALT 1,223

]]> 59b739c4c12cd57b140cf26aef11af60 gopher38 replied to the topic Question about legs in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/question-about-legs/#post-277262 Thu, 22 Sep 2022 01:42:56 -0400 I had leg problems and lasting neuropathy in feet/hand after ipi/nivo, which I think isn’t common, but also not extremely rare, just judging by what I see in the forums. I don’t think it’s listed as a side effect on bms web site, but I’ve heard a number of people mention it. I’m on taf/mek now, and it hasn’t gotten worse (nor better). When I had…Read more

]]> bc29ca53ba71a6f0180ad03d6571b230 gopher38 replied to the topic Scar treatment for WLE in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/scar-treatment-for-wle/#post-277105 Mon, 08 Aug 2022 17:56:28 -0400 I have had four (and two basel cell) and they never bothered me at all. Now, if you had something on an eyelid or ear, etc, then I wouldn’t have been happy, but on the torso or limb, I’d just go with it. I can’t image anyone worth his salt that make any judgement in any domain based on that. One of my basel cell operations was ~ 3weeks ago, and…Read more

]]> db93cc0ed69b6dc5ac50874f0e68d506 gopher38 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277090 Thu, 04 Aug 2022 14:08:19 -0400 Yep, I’m still around. Currently doing TAF/MEK with Keytruda, which is keeping the tumor on my esophagus at bay for now, but everyone says that it’s only temporary, so waiting for the next shoe to drop. In the meantime, doing OK. Neuropathy in feet and left hand is biggest current issue, because I can’t do much walking before my feet start to…Read more

]]> 8dea3221b0b3b7d4f3407c88d0dc63b1 gopher38 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277085 Wed, 03 Aug 2022 17:31:59 -0400 Disappointed to hear that opdualag didn’t work. Did it show any results, or a complete flop? I was hoping that that might be another strong weapon. Doubly disappointing to hear the negative TIL results. I hope you’ll look for another trial, if there’s one that’s at all promising, which it seems like there usually is.

]]> 79d6e45b32933a266e481a4f2daf968a gopher38 replied to the topic Braf in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/braf-6/#post-276903 Fri, 24 Jun 2022 22:34:10 -0400 Speaking of BRAF, my mother gave me a magazine from MSK which covers some of the things going on there. One article was pretty interesting (at least for me; maybe old news for others). It was specifically about BRAF mutations and the effect that location on the body can have on its development … or not. I don’t have the article here, but I…Read more

]]> d99242a79b58ede3427fb334a2a3be04 gopher38 replied to the topic Braf in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/braf-6/#post-276902 Fri, 24 Jun 2022 22:18:18 -0400 Not sure if you’re looking for public or private responses. Seems like you’ve been on the forum for a while and probably know about BRAF, so maybe private? Anyway, I’m taking BRAF drugs now: Tafinlar and Mekinist. No problems so far. I had Zelbaraf (sp?) before, and that didn’t agree with me. The only reason we were doing it was that my…Read more

]]> 33af0400c9d85ae1f8660009d83da6bc gopher38 replied to the topic Tafinlar Mekinist Joint Pain in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/tafinlar-mekinist-joint-pain/#post-276717 Mon, 09 May 2022 17:16:11 -0400 I’ve been on TAF/MEK for about one year, and I haven’t had joint pain. Fevers, sweats, fatigue, and a few other things, but no joint pain. But my guess would be that it could be due to your medicine. I think the secondary effects can manifest itself in many forms.

Congrats on the weight loss. That’s a good amount to shed; wish I could. 😉

]]> 3f2a55543dc4848f41e308b87383aa22 gopher38 replied to the topic Spam block idea in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/spam-block-idea/#post-276449 Thu, 10 Mar 2022 15:29:00 -0500 I wonder how the “report” link is used. I would think that they could automatically remove a post if it was “reported” X number of times. That would save the MRF people from having to go in and manually remove it. I don’t know, but I would think that people wouldn’t “report” posts willy-nilly.

]]> 51a726154b1ed3a6cb1278242019c4d5 gopher38 replied to the topic Happy New Year - an update and some intel in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/happy-new-year-an-update-and-some-intel/#post-276164 Sun, 02 Jan 2022 17:00:52 -0500 What Judy said. Thanks for posting.

And best wishes to all for 2022 (and beyond!!)

]]> cc9dc4040b8be085c6933ea1033b174b gopher38 replied to the topic Anyone have an occasional glass of wine while on treatment? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-an-occasional-glass-of-wine-while-on-treatment/#post-276032 Sat, 27 Nov 2021 00:25:46 -0500 I’ve been drinking a glass of whiskey and rarely more in the evening, for probably 20 years, and I’ve continued throughout my treatments (nivo, combo, targeted).   Only time I stopped was when I had some liver problems.  I figure you’ve got to live your life, as much as possible.

]]> 8353272c8f265fd2a212734ddbd331ed gopher38 replied to the topic dabrafenib and trametinib in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/dabrafenib-and-trametinib-4/#post-276031 Sat, 27 Nov 2021 00:16:30 -0500 I’m currently doing dabrafenib/tram.  A little nerve-wracking because you’re a little bit waiting for the next shoe to drop … but grateful to have it as an option.  I started with a similar-but-different combo called vemurabenib/cobi-something, which – unfortunately – put me in the hospital, so now I’m on dab/tram, which is working OK for the m…Read more

]]> 872471bbceee134e386a88d9beaec2ac gopher38 replied to the topic Success on Temodar? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-on-temodar/#post-276025 Wed, 24 Nov 2021 21:47:03 -0500 Really disappointing.  Mega thanks to Bubbles for the suggestions.  I was going to suggest TIL, but the IL2 ones sound worth investigating also, considering the success you’ve had (if I remember correctly) with ipi.  If it was me, I think I’d really check out the trial at Moffitt.  In fact, I might check out that one myself.  Natural to feel disc…Read more

]]> a3155927c0f2cc0ff4dece6757649cfe gopher38 replied to the topic More Melanoma Hijinks in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-melanoma-hijinks/#post-275966 Thu, 11 Nov 2021 15:59:16 -0500 So I seem to remember you were doing something called “STING” for the trial (I bookmarked it somewhere for future reference).  Is that over, and you’re now doing ipi/nivo as follow up?  So the “trial” part is just following your progress?  If that’s the case, I’d probably drop it and go for the intralesional, and then resume ipi/nivo.  If the…Read more

]]> dc540aaa201ce749380cbb3ee7ea689c gopher38 replied to the topic Forum activity has virtually ceased and MRF does not seem to care in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/forum-activity-has-virtually-ceased-and-mrf-does-not-seem-to-care/#post-275860 Mon, 25 Oct 2021 00:07:20 -0400 I’ve had some issue logging in and posting in the past, but that’s not why I’ve been silent recently; I’ve just had nothing to report.  Waiting for next scan.  If that’s bad, I suppose I’ll be back quickly looking for sympathy and advice on next steps.

]]> a3dae2c67034e6d562df896fc64f3f89 gopher38 replied to the topic NED, But in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ned-but/#post-275746 Wed, 29 Sep 2021 01:31:06 -0400 I had a tumor in the mouth, near the tonsils, and still have a bigger one in the esophagus.  The esophagus manifested itself with harder swallowing, but no pain.  The mouth one I could see and feel, like there was a bit of food caught in my upper throat.  Once again, no pain.  The mouth one I could see – as I said – and it was white, which I tho…Read more

]]> 74cc8da5a47bcf0ccd68fad62b0bcd48 gopher38 replied to the topic Brain mets found after being declared NED 3 months ago in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-found-after-being-declared-ned-3-months-ago/#post-275745 Wed, 29 Sep 2021 01:25:23 -0400 Hello Jenn,

I had gamma knife for one met. It was less traumatic than I expected.  Worst thing was having the “halo” put on, but they gave me pain killer injections in the four attachment points, so it didn’t really hurt much.  Still a bit disturbing. The procedure was nothing.  I didn’t have any after-effects, but I know others have.  Just try…Read more

]]> a71057591bca911ac5fc4a2cb7420c5e gopher38 started the topic Injectable sites in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/injectable-sites/ Thu, 09 Sep 2021 01:07:56 -0400 So I’ve been checking out clinical trials again, and I see quite a few for intralesional injectable treatments of different flavors.  Does anyone know if the injectable tumors have to be easily accessible – lymph nodes and the like – or can they be deeper in the body?  Specifically, I’m thinking about the tumor in my esophagus, which seems like i…Read more

]]> 4ac0b1b7de2f35633fec7bad2e344723 gopher38 replied to the topic My 1st clinical trial! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-1st-clinical-trial/#post-275634 Wed, 08 Sep 2021 15:45:41 -0400 Hello Amanda (if you’re reading this).

Quick question.  I believe you said that you are doing this trial through U of Pitt.  If I remember correctly, you are living in Milwaukee (could be wrong there).  If so, how is this working?  Are they administering the treatment in Milwaukee somewhere and then you go to Pitt for consultations?  Wond…Read more

]]> 8c7a07fdbfd304f25534a54e17f0dfec gopher38's profile was updated https://forum.melanoma.org/activity/p/7557/ Tue, 07 Sep 2021 01:47:11 -0400 0 4a4114577cc2e57ba62268f785073c8f gopher38 replied to the topic My 1st clinical trial! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-1st-clinical-trial/#post-275612 Tue, 07 Sep 2021 01:46:01 -0400 Hello Amanda,

Great news on the clinical trial.  I’ll be reading up on the STING procedure to keep in my back pocket, like I’m doing with the TIL story.  Hope this one turns out positive.  I think the fact that you had a positive reaction to ipi+nivo in the past is a good sign.

Warren (used to be gopher38, but for some odd reason the system ma…Read more

]]> 0c83da6f0aed073229b512f948d88daa gopher38 became a registered member https://forum.melanoma.org/activity/p/7554/ Tue, 07 Sep 2021 01:42:17 -0400 0