Melanoma Research Foundation | Lucas | Activity https://forum.melanoma.org/user/lucas/activity/ Activity feed for Lucas. Wed, 15 Apr 2026 06:22:14 -0400 https://buddypress.org/?v= en-US 30 hourly 2 3662ac05f168d7e64f8355f5eae8c54b Lucas replied to the topic Lung Mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280538 Wed, 20 Nov 2024 20:49:25 -0500 Just wanted to follow up and report that this area has cleared up after a steroid taper. It was likely bronchitis or pneumonia. These things are never easy and gave me extreme anxiety for a month with at least one panic attack! Thank you to all who responded.

]]> 7d736e20795fa3b7fca800ce0b06abf4 Lucas replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280531 Fri, 08 Nov 2024 20:52:25 -0500 Sorry, to hear of her passing. I was wondering where she had been in regards to the forum. She has contributed and left so much information for all of us survivors and fighters. I’m forever grateful for her chaoticallyprecise blog that has provided such detailed answers when going through my treatments, side effects and recurrences. As well as h…Read more

]]> 5f31fa557cfdaf24d1ce3963e41c5a53 Lucas replied to the topic Lung Mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280489 Mon, 23 Sep 2024 21:42:46 -0400 Thank you both for responding. I am very prone to infections after years of every kind of immunotherapy treatment. I developed type 1 diabetes and adrenal insufficiency. It definitely feels more viral or infectious due to the mucus and what feels like chest congestion. However I’m not obviously sick? Every met I’ve ever had started with a mea…Read more

]]> 52cc038bb1c0af881f27e3237e5cc59d Lucas replied to the topic Lung Mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280486 Mon, 23 Sep 2024 15:00:03 -0400 Thank you Ed for the response. There were no measurements taken of any of the nodules. The impression was that “the findings are indeterminate, scan again in 3 months w/o contrast.”
I understand it could be a number of things, but am going to live with extra anxiety for the next few months.

]]> e7c72084479dd5aedbe33faf3fa71023 Lucas replied to the topic Lung Mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280484 Sun, 22 Sep 2024 19:06:10 -0400 I should add that the findings are indeterminate. I’ve also been coughing up small amounts of mucus for a couple months?

]]> bc2f3a61eb81613fab3587d432e754ca Lucas started the topic Lung Mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-2/ Sun, 22 Sep 2024 18:39:09 -0400 Could anyone help interpret?

Lungs: Multiple lesions are identified, mostly within the right upper lobe, new since 3/1/2024. The majority of the lesions consist of groundglass opacity. Several of the lesions contain more dense / solid internal sub-regions. At least one lesion is also present within the right middle lobe, and at least one lesion…Read more

]]> ff1bd3c7ad03b41598645c5f6c98eb69 Lucas replied to the topic stage 4 and timing in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-4-and-timing/#post-280419 Sun, 04 Aug 2024 21:42:02 -0400 No you’re not a goner…I was a goner at one point also until I wasn’t. I’m guessing it’s a retroperitonal lymph node? Anyways if that’s it and hasn’t gone to your CNS. That is oligometastatic and if it’s in only one spot your statistics are favorable. However, I would want to be put on nivo/rela it’s a different pathway. It’s kind of like starti…Read more

]]> 145a3853fb82e217261034bfae984734 Lucas replied to the topic stage 4 and timing in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-4-and-timing/#post-280415 Sat, 03 Aug 2024 00:52:41 -0400 What type of recurrence? I had an oligometastaic recurrence in a previous spot after 3 years ned from ipi-nivo. I was then put on 2 cycles of relatlimab-nivo. The tumor was very palpable in my groin, but shrunk dramatically. After removal it was mostly necrotic with less than 10% tumor involvement.

]]> 734112550685b1d3d88c77195225b5b0 Lucas replied to the topic Lenvatinib in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lenvatinib/#post-280262 Wed, 22 May 2024 01:30:16 -0400 I had a recurrence (lymph node groin 4cm) last year after 3 years NED from opdivo yervoy. I then had 2 cycles of nivolumab/relatlimab followed by surgery. The nivo/rela shrunk the tumor in half and upon pathology it was less than 10% cancerous. No re-currences in the following year. There is hope in re-starting immunotherapy and I’ve read good t…Read more

]]> 9f69a325aa6cf9e5db43d1859f8469dd Lucas replied to the topic AYA Retreat - anyone here going? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/aya-retreat-anyone-here-going/#post-279033 Sun, 13 Aug 2023 19:19:37 -0400 I hadn’t heard about this. After reading,it seems I’m a couple years too old at 41. This sounds like a great event and I would really enjoy connecting with people who’ve faced these enormous obstacles. Please let us know how it went. Enjoy!

]]> 4fd98a3998b0d9217fa8383797680c97 Lucas replied to the topic Recurrence after complete response in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-after-complete-response/#post-278906 Fri, 14 Jul 2023 23:08:34 -0400 Ed thank you for the response! I have seen that neo-adjuvant data and read those studies. However those are based in first line treatment. Because I’ve had my response already and only have the single progressing lesion it complicates things. Would neo-adjuvant be effective in the 2nd line setting?
Based on my previous response and the non d…Read more

]]> 80870a3ba89e021d7a708af2cb363df7 Lucas started the topic Recurrence after complete response in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-after-complete-response/ Fri, 14 Jul 2023 02:14:42 -0400 Recent biopsy shows a single recurrence in my left inguinal lymph node. This is a previous cancer site and PET scan shows no disseminated disease. I had distant widespread lymphatic disease previously before a complete response to ipi/nivo. My question is and I’ve drowned myself in data. Is do I go straight to surgery to remove this met? Doctor w…Read more

]]> dbb16af2b867a9199007cd9d7a77fcd0 Lucas replied to the topic How long is to long to wait for biopsy? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-is-to-long-to-wait-for-biopsy/#post-278823 Thu, 29 Jun 2023 00:38:14 -0400 You’re fine if you are having 3 month checks…

]]> f5e55a577ba1e343f70caa2f52e1e4c2 Lucas replied to the topic Recent Malignant Melanoma Diagnosis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recent-malignant-melanoma-diagnosis/#post-278615 Tue, 09 May 2023 02:05:15 -0400 The hardest part can be the initial diagnosis. Because of all the treatment advances in melanoma I’m confident you will be ok. I advanced to stage 4 and am confident you likely never will be anywhere close. However the hardest part was the beginning. The are so many advancements in treating melanoma and so many more on the way that this disease i…Read more

]]> 1c0fdde5d2b7ed53db66d8b3541f69e0 Lucas replied to the topic Recurrence and worried. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-and-worried/#post-278411 Wed, 22 Mar 2023 02:49:22 -0400 I’ve read though I can’t post a link. Most recurrences after using these drugs(ipi /nivo)and having mainly a partial or complete response. That recurrences are generally isolated and treatable generally in the form of surgery. Sorry, I can’t post a link to a study, but I’ve read Soo many things over the years that this in particular is stored…Read more

]]> c9a150d12842a208c761fe10dd95fc33 Lucas replied to the topic Looking for feedback on amputation vs. skin grafting in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/looking-for-feedback-on-amputation-vs-skin-grafting/#post-278368 Thu, 09 Mar 2023 16:36:45 -0500 Ive had two skin grafts on the bottom part of my left heel. The first graft was to remove the quarter size acral melanoma and the second to remove a recurrence. The first graft healed well, but the second graft underwent radiation and is slow to heal 3 years later. There is much more to that story, but I would undergo a skin graft first as the…Read more

]]> d0c17621471b92950283701e12b3c0d5 Lucas replied to the topic No vitiligo? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/no-vitiligo/#post-278099 Wed, 18 Jan 2023 18:25:02 -0500 Immunotherapy vitiligo is much different than the definition given above. Most individuals who respond to immunotherapy whether partially or completely will not have vitiligo. I did however develop vitiligo late into treatment. I failed Pembrolizumab and after receiving the ipi/nivo combo the condition developed. My vitligo showed up all over my…Read more

]]> 9347231dc1f13823ee20a01bf0a60d3c Lucas replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276384 Tue, 22 Feb 2022 16:52:01 -0500 Brian, I recently finished treatment for stage 4 acral melanoma. I was first diagnosed at the age of 35 with two young children. I live in the Portland area and was treated at Kaiser Interstate. If you’d ever like to connect my email is thelucasgray@yahoo.com.

]]> 6ff7d4e40c4f02dfb52cab559c766406 Lucas replied to the topic Loss of Taste in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/loss-of-taste/#post-276271 Sat, 29 Jan 2022 06:41:57 -0500 Kevin, have you been tested for adrenal insufficiency? Mine went undiagnosed for a year and really destroyed my quality of life. I lost a lot of weight and didn’t have much desire to eat. There were also many other debilitating side effects that came with it.

]]> 8bf02129f8403fdfc03ee72f27d6202d Lucas replied to the topic Hair loss/thinning in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/hair-loss-thinning/#post-276240 Thu, 20 Jan 2022 03:57:45 -0500 I lost about 50% of my hair on iPi/nivo. When the hair came back it was all white. 3 years later it is still turning white and I continue developing vitiligo spots on my skin where I previously had tumors.

]]> 10475ddbde02795cb9d694dc31de638b Lucas replied to the topic Arthritis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/arthritis/#post-275037 Fri, 18 Jun 2021 18:37:39 -0400 Have you been checked for adrenal insufficiency? This caused me horrible joint pain to where I could barely walk up a few stairs. Went undiagnosed for a year and had some other bad effects on my body.

]]> 9ed59e6c2452887d637ac08e62ce08df Lucas replied to the topic Acral Lentiginous - Newly Diagnosed & Looking for 2nd Opinion recs in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/acral-lentiginous-newly-diagnosed-looking-for-2nd-opinion-recs/#post-274339 Tue, 09 Mar 2021 16:54:28 -0500 I had a very thick acral melanoma on my heel in 2016. It spread to one popliteal lymph node with a 4mm deposit. It took one year for it to recur locally and 2 years for a distant metastasis. A melanoma specialist would also be an acral specialist as for now they are treated the same. I would assume he will have the option of being treated with…Read more

]]> 1cadf3b99043bd017a447e84edd085c8 Lucas replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274279 Wed, 24 Feb 2021 00:34:55 -0500 I’m not sure how an endocrinologist determines the right amount? I also made no cortisol when tested. In my case my joints were hurting really bad, I had lost 30 lbs and kept getting hospitalized when sick. However my oncologist was not a specialist and knew little about immunotherapy almost 5 years ago. Somehow and endocrinologist reviewed my c…Read more

]]> fde6bf901d0fd97ea770758a418cf75b Lucas replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274276 Tue, 23 Feb 2021 00:24:16 -0500 In my case I only take 5mg of prednisone in the early morning. This is a very tolerable dose and I believe you should be at 10mg or under if continuing on immunotherapy. It is permanent, but thankfully very treatable. Mine went undiagnosed for a year which was a nightmare.I pray that you are healed completely from melanoma soon.

]]> 91fe55db9c4cd4a96729e8068bd9d0a2 Lucas replied to the topic What would a suspicious lymph node feel like? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/what-would-a-suspicious-lymph-node-feel-like/#post-273870 Sat, 09 Jan 2021 18:59:54 -0500 When my melanoma spread to my inguinal nodes they were hard as a rock. They were very red, painful and visible on the surface. I was always worried about little lumps, but they were nothing like the real thing.

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