Melanoma Research Foundation | AMcReader | Activity https://forum.melanoma.org/user/amcreader/activity/ Activity feed for AMcReader. Wed, 22 Apr 2026 00:58:47 -0400 https://buddypress.org/?v= en-US 30 hourly 2 abc1a59e86d4af644b62601087044c8c AMcReader replied to the topic Update from BrianP in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-brianp/#post-276234 Tue, 18 Jan 2022 20:46:34 -0500 So happy to see your name and that you’re doing well! Five sweet years with your children and family — what a joy! Still hoping to find my magic potion, and stories like yours showing success on clinical trials always give me hope.

]]> 0811471ee60d376a1080ac852834bfc1 AMcReader replied to the topic Success on Temodar? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-on-temodar/#post-276017 Tue, 23 Nov 2021 04:40:19 -0500 I meant to add the treatments I’ve previously done.

– Nivolumab (8 months) & SRS to brain after surgery

– Ipi/Nivo (only tolerated 3 of 4 combo treatments), but saw significant shrinkage. Then added in SRS to left lobe of lung. After liver panel finally came back down to normal 5 months later, decided to hold on Nivolumab since my lung lesion w…Read more

]]> d2ec1b57a4b5858d8ec24bd15bb6ebb1 AMcReader started the topic Success on Temodar? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-on-temodar/ Tue, 23 Nov 2021 04:27:21 -0500 Well, the hits just keep on coming.

Last week, I found out that the knee pain I’ve been struggling with since August when I was in a treatment washout period is actually a 5cm tumor in my femur. The good news is that we have a good plan for that — remove tumor, insert plate, surround with cement and then radiate the area for micro lesions — and w…Read more

]]> 2330cbca9c7ead401582a132d7387175 AMcReader replied to the topic More Melanoma Hijinks in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-melanoma-hijinks/#post-275976 Sun, 14 Nov 2021 21:13:07 -0500 Thank you all for taking the time to respond. My initial reaction was the same as Mark and Warren recommended, do the WLE or utilize injectibles. However, after some additional conversations with my two Melanoma specialists, for now I’m proceeding forward just on my current treatment which is working. One, this treatment is working and two, I do f…Read more

]]> 70a34ac061079f4294580e686b018861 AMcReader started the topic More Melanoma Hijinks in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-melanoma-hijinks/ Wed, 10 Nov 2021 01:06:27 -0500 Oh, what a few months it’s been.

For those following along, I’m currently managing some grumpy stomach lesions that like to make eating a real PITA. Luckily, after some great suggestions from all of you and a lot of just staring down my food until I convince myself to eat it, I’m starting to make some progress. Also, as of yesterday I learn…Read more

]]> 5190d56df9def0fd1fcd12fc5132cbb4 AMcReader started the topic Stomach Mets in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stomach-mets-2/ Wed, 27 Oct 2021 21:41:12 -0400 Hi Friends,

I’m still battling away on this clinical trial (initial results after month 1 looked good!), but I am struuuuuggling! The met in my stomach makes it so hard for me to eat and I’m wondering if any of you brilliant people had some ideas from personal experience.

I’ve talked to my oncologist and several cancer specialist dieti…Read more

]]> aebb695bc48c9191c47211c5e2fe9fda AMcReader 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-275638 Wed, 08 Sep 2021 17:42:51 -0400 Thank you, Ed!! I’m definitely going to check out what Dr. Luke shares about STING!

]]> 7a395e8b816a8aa643c357ffda4d0c6d AMcReader 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-275637 Wed, 08 Sep 2021 17:41:24 -0400 Hi Warren, You have an excellent memory! I’m from Milwaukee originally, but I live in Columbus, Ohio now which is only about a 3.5hr drive from Pittsburgh. Right now, everything is happening in Pittsburgh so it’s kind of a pain but they’ve been good about scheduling things all in a row to make the trips as quick as possible. It’d be much easier…Read more

]]> 07a52c0ca40faaafb216fa99ec1938ae AMcReader 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-275636 Wed, 08 Sep 2021 17:36:41 -0400 Awww, jbronki, your posts are always the kindest! I’m very hopeful about this trial and will certainly keep everyone posted on any strange responses or side effects. We all need each other through this!

I hope life is treating you well and that you enjoyed the heck out of your summer!

]]> 82dfd54a76d32363eebc72f5e266c43e AMcReader replied to the topic Potential Brain mets - terrified in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/potential-brain-mets-terrified/#post-275609 Mon, 06 Sep 2021 15:47:18 -0400 Hi Stefan, I’m so sorry for what you and your mom are going through. I know how terrifying it can be.

The best thing is to wait to see what the MRI says, but many people on this board have had brain mets, with symptoms and have recovered just fine. Personally, I had a tennis ball-sized brain met that was making it impossible for me to talk or w…Read more

]]> 97948db4829f6b600a9452deed371dca AMcReader 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-275602 Sun, 05 Sep 2021 14:04:27 -0400 Thank you!!

]]> f1acf5c3b142ec9000cd0f7901b7f3f2 AMcReader 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-275601 Sun, 05 Sep 2021 14:04:05 -0400 Thanks, Celeste! That was a good, succinct read. Some of the reading I’d done related to DTING had been a lot more complex and hard for me to follow.

For the record, you are correct being a rattie is certainly not for the faint of heart!!!!!!!! It does give me even more appreciation for all the brave ones who came before though!

]]> ab431115565c85a07ca2cfa3832a209a AMcReader started the topic My 1st clinical trial! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-1st-clinical-trial/ Sat, 04 Sep 2021 02:30:12 -0400 Well, I won’t mince words, I’m beyond happy to say goodbye to another personally atrocious, melanoma-filled August and hello to another September filled with hope!

Last August was when I was diagnosed with a very painful recurrence in my stomach, after 18 glorious months of stability and being off treatment. This August, I battled through the end…Read more

]]> 363e899f4d6bee738773fd0549128afe AMcReader replied to the topic Next step: Clinical Trials in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/next-step-clinical-trials/#post-275370 Wed, 21 Jul 2021 02:17:43 -0400 Thanks for sharing! This is how my doctor described it, but it was nice to see the visuals and hear someone else’s take.

]]> aa5dc3fdf5d87a3e58a11f1264551b72 AMcReader started the topic Next step: Clinical Trials in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/next-step-clinical-trials/ Tue, 20 Jul 2021 16:43:23 -0400 Hi friends,

Well, after 10 good months on the triplet (Vem/Cobi + Atezo), it seems like my success is running thin. The good news is that all is not lost, I’m seeing juuuuust barely enough growth in one tumor to warrant a switch to a clinical trial. I could probably fight it out on this current treatment for longer, but I’m anxious to move for…Read more

]]> c9a3fdf8ba2b731aa42a9fc647e8c63e AMcReader replied to the topic Julie in SoCal in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/julie-in-socal-2/#post-275136 Sat, 26 Jun 2021 03:42:05 -0400 I too am so glad you posted this. I have been thinking about Julie for months and hoping we’d get some kind of update. Sending love to her wherever she is.

]]> 27b8665d84e16a7d093ef50a381c81d6 AMcReader replied to the topic Four down, one to go in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/four-down-one-to-go/#post-275108 Fri, 25 Jun 2021 00:15:37 -0400 Gary your story of battle and survival has brought me hope many times as I continue on my battle through melanoma. Thank you for continuing to share with us! I wish you decades of a joyous retirement filled with lots of time spent with your grandkids — no doubt you deserve it!

]]> 21beab66df70b3b601aa4a6f96a050db AMcReader replied to the topic Liver Mets and immunotherapy in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/liver-mets-and-immunotherapy/#post-274799 Thu, 27 May 2021 19:11:56 -0400 Hey Melanie, Are you still on the Gerson diet? Would you be willing to talk to me about it via email? My cancer is lingering and I’d love to do anything to help to make my immunotherapy more effective. If you’re comfortable, my email address is Amanda.s.McCracken@gmail.com.

Thanks!

Amanda

]]> 4b64ab08f7991dca1c9203366c307f6f AMcReader replied to the topic Possible stage IV - need advice! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/possible-stage-iv-need-advice/#post-274755 Sat, 22 May 2021 20:24:10 -0400 Most importantly my tumor burden reduced by about 75%!

]]> 96882e29106d35613c4bb9f282216ed0 AMcReader replied to the topic Possible stage IV - need advice! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/possible-stage-iv-need-advice/#post-274754 Sat, 22 May 2021 20:18:28 -0400 Oh Christin, so sorry to read this news! I hope this ends up being a blip on your radar and not real progression, but if not there are many great immunotherapy options. I’ve been managing Stage 4 for 3+ years now and although I’m not NED yet…I like to tell people I’ve never progressed while on treatment and even enjoyed a sweet 1.5 years off tre…Read more

]]> 6336607be035a3f37a0091a1db629d44 AMcReader replied to the topic Immunotherapy and the COVID vaccine in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-and-the-covid-vaccine/#post-274727 Tue, 18 May 2021 14:33:15 -0400 Wow, Caman! That is a LOT! It’s very hard to make sense of the combination of the vaccine and immunotherapy.

]]> 442095c5ee4790abc788e770298b1712 AMcReader replied to the topic Immunotherapy and the COVID vaccine in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-and-the-covid-vaccine/#post-274726 Tue, 18 May 2021 14:32:16 -0400 Hi Jenn, my care team definitely knows. I hope you’re recovering well and working through your next treatment plans!

]]> 42d5123ba240a230e2cd0e654eade095 AMcReader started the topic Immunotherapy and the COVID vaccine in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-and-the-covid-vaccine/ Fri, 14 May 2021 14:25:33 -0400 Hi all,

Since receiving my 2nd COVID vaccine on 4/17, I’ve been dealing with an increased number side effects from my immunotherapy. For me this has included a constant cycle of fever/chills, joint pain and swelling, and exhaustion. I’ve been able to manage through these things with patience and Advil, but I’m definitely ready for them to end.…Read more

]]> 28034cba5693a3c5b50dd34057b843ef AMcReader replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274420 Mon, 29 Mar 2021 14:18:43 -0400 I’ll admit, I still come to the forum to check in on everyone, but this new design is rough and it’s kept me from posting. I’m sure we’ll all get used to it….but sometimes change is hard, danggit!

As always, I really appreciate your kind words. I remain hopeful that my silver bullet is out there and we are narrowing in on it!

I hope you are…Read more

]]> 7c46b3d4268abb0955b0158a5955188d AMcReader replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274419 Mon, 29 Mar 2021 14:02:39 -0400 Thank you, Cindy! I’m thankful to feel well and still have many good options to try. I hope you’re doing well!

]]> 58dbb134149ceffad367eb45e1018cad AMcReader replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274418 Mon, 29 Mar 2021 14:00:56 -0400 Kyle, thank you SO much for this reply! As you probably understand, it always brings me hope to hear about people who have continued to find success even though they’ve needed multiple treatments. I’m SO happy to hear that you are now a complete responder, I’m certain that comes with a feeling of relief few people outside of the cancer commu…Read more

]]> 12a3fafdc63aae920b9a8ca2dec06b88 AMcReader replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274410 Fri, 26 Mar 2021 13:17:13 -0400 You’re correct about the placement of the lesion based on what I know so far. I’ve talked to my on oncologist over the phone right when we both got these results, but she was going to go and dig into a more information including surgery and radiation like you mention.

I’m going to also bring up interlesional therapy too, which we hadn’t talked…Read more

]]> 33fef8f6272859a261bbd718aa5bb1fa AMcReader replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274407 Thu, 25 Mar 2021 19:21:23 -0400 Thank you so much for the continued support, Celeste! I’ve read your TIL post before, but it was still good to go back and revisit it.

One question for you, and sorry if this is elementary. I know that patients have to essentially kill their immune system to do TIL. Does that mean anything my body has learned from Nivo, Ipi and the others would b…Read more

]]> 9213a733c244de5de533b617f64a755b AMcReader started the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/ Thu, 25 Mar 2021 16:04:52 -0400 As some of you know, in September I started a combination of Vem/Cobi with bi-weekly infusions of Atezo. One of the great things about this therapy is that I literally felt it working RIGHT away. One day I could barely eat from stomach pain caused by my lesions and 12 hours after my first round of Vem/Cobi, I felt so good eating stale crackers…Read more

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