Melanoma Research Foundation | Sdmotorcop | Activity https://forum.melanoma.org/user/sdmotorcop/activity/ Activity feed for Sdmotorcop. Wed, 22 Apr 2026 14:22:19 -0400 https://buddypress.org/?v= en-US 30 hourly 2 804f41ebf6dc2e8794807370ebbf7898 Sdmotorcop replied to the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/#post-276479 Tue, 15 Mar 2022 09:41:31 -0400 I had Covid in February of 2000 (before testing was available). All of my CT scans from 2/2020 to around 10/2020 showed ground glass opacities. I went from stage 3C to stage 4 in June 2020 with lung Mets. All of my CT reports said the GG appeared to be viral in nature. It took a while for my lungs to heal up. If you’ve had covid, it might be w…Read more

]]> ae5571545b7a602959a8055e1b83a6a3 Sdmotorcop replied to the topic Newbie here! Braftovi/Mektovi Side Effect Question - plus some general stuff in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/newbie-here-braftovi-mektovi-side-effect-question-plus-some-general-stuff/#post-276424 Sun, 06 Mar 2022 01:14:19 -0500 I have been on the Braf/Mek combo since July of last year. I started off with the full dose (6 and 6). Within 2 days my eyes became “wonky” (my term for it). My eyes became dry and blurry. I wear glasses so I kept thinking my glasses were dirty 😁. I also noticed that everything appeared dark like I was wearing sunglasses inside. These side eff…Read more

]]> d9b314179e63976dbe86cb81ab0f1a24 Sdmotorcop's profile was updated https://forum.melanoma.org/activity/p/14208/ Tue, 22 Feb 2022 05:11:24 -0500 0 71f112d2daa7f1cf67179fad4894251e Sdmotorcop 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-276380 Tue, 22 Feb 2022 05:08:25 -0500 Hi Brian,
I am a fellow OHSU patient. I’m currently going to the Knight Cancer clinic in Beaverton. I had a really great oncologist (Gary Takahashi) who was a victim of this vaccine mandate mess. I’m currently being seen by Dr Anderson in Portland. Seems like a really good Doc who listens. My dermatologist is Dr Berry and her team (she was a p…Read more

]]> e410bea78240c5699dff02acba122942 Sdmotorcop replied to the topic Clinical Trial for BRAF+ in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/clinical-trial-for-braf/#post-276354 Sun, 13 Feb 2022 14:08:49 -0500 I have been on Mektovi/Braftovi since July 21. I was unable to stomach the full dose (6 and 6) due to some extremely bad nausea. I am currently taking a smaller dose (4 and 4) and am tolerating it ok. The combo has caused my red blood cells and iron levels to crash causing me to be anemic. The low levels caused me to be out of breath and extremely…Read more

]]> db5e1ba81d64cdb119f1b1cdf85de50f Sdmotorcop replied to the topic Melanoma regression w/ immunotherapy... Recent CT shows new mass in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-regression-w-immunotherapy-recent-ct-shows-new-mass/#post-276019 Tue, 23 Nov 2021 11:30:34 -0500 I’ve been on targeted therapy since June (Braf/Mek) and have lost about 25 pounds. My oncologist told me to eat more ice cream.. I told my wife the Doctor told me I HAD to eat ice cream. She looked at me, rolled her eyes and walked away laughing..  I would much rather follow my doctors orders.. my alternative is green stuff (brussel sprouts)… yuck

]]> c6f68156fff7e2d4ea9cfc09b76f71dc Sdmotorcop replied to the topic Targeted therapy nausea and Cautionary tale.. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/targeted-therapy-nausea-and-cautionary-tale/#post-275586 Thu, 02 Sep 2021 00:38:24 -0400 Thank You to all who replied. I’m still on the full dose and am still fighting the nausea. My oncologist started me on a nausea med called granisitron (or something like that). Still pretty nauseous but it’s a bit better. I eat one meal a day with a couple of snacks. I’m thinking about going with protein shakes that you buy at Costco.

 

]]> fc6aecfb5ebab9948377173cf04f50f8 Sdmotorcop started the topic Targeted therapy nausea and Cautionary tale.. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/targeted-therapy-nausea-and-cautionary-tale/ Tue, 17 Aug 2021 03:44:59 -0400 Well, long story short.. April 2019 I was diagnosed with a  4.3mm melanoma behind left knee with 1 node involved. I was a 3C and started Nivo ( testing showed Braf Wild type, more about this later). I had Mild side effects while on the Nivo.

May of 2020 I went stage 4 with lung Mets, several involved lymph nodes and a spot on my psoas muscle. I…Read more

]]> ae125101ca31e4d4c7edda7e38f11bd2 Sdmotorcop replied to the topic Arthritis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/arthritis/#post-275039 Sat, 19 Jun 2021 04:02:14 -0400 I’ve been dealing with some pretty severe arthritis for the past year and a half (Nivo for a year with polymyalgia rheumatica like symptoms. Nivo failed and started Ipi). After the Ipi kicked in, every joint in my body hurt. I’ve been on 10 mg of prednisone since starting Nivo. My oncologist had me try sulfasalizine which did nothing. He put me…Read more

]]> fb3525651392d9ad4ef2089547c61c83 Sdmotorcop replied to the topic LDH concerns in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ldh-concerns/#post-274667 Sat, 08 May 2021 19:06:08 -0400 I had the same conversation with my oncologist. He said LDH is part of the picture, but not the whole picture. Like you said.. live life to the fullest 😁

]]> c9f55d0f686b1de8e45d787577d33ca3 Sdmotorcop 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-274635 Sat, 01 May 2021 14:12:10 -0400 Scars are your History! Be proud of them.. :good:

]]> 8931f3749526a4daa4ffba5387d0c6dc Sdmotorcop replied to the topic Chances after recurrence? (10 mths Nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/chances-after-recurrence-10-mths-nivo/#post-274320 Sat, 06 Mar 2021 01:40:13 -0500 Hi Ekaterina,

I progressed to stage 4 (4 lung Mets, 2 lymph nodes, 1 stomach and psoas muscle met) after 10 months on Nivo (One dose a month). My oncologist had me start on IPI only in June of 2020 (3 of 4 infusions..liver numbers went up so no #4). So far so good on just the Ipi. 3 of 4 of the lung Mets are gone along with the psoas, lymph and…Read more

]]> 95eb113eca9770c281ca385fdaf42361 Sdmotorcop replied to the topic Booster for Ipi/Nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/booster-for-ipi-nivo/#post-274250 Thu, 18 Feb 2021 23:53:39 -0500 Hi Ed,

this last one was via CT scan. I guess I had reached my limit of 3 PET scans for the year (due to radiation). All nodules had decreased uptake at my last PET in October.

]]> c9062e02fa7c69629184e062dda7c9cf Sdmotorcop started the topic Booster for Ipi/Nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/booster-for-ipi-nivo/ Thu, 18 Feb 2021 00:33:58 -0500 My last Ipi infusion was in June 2020 (10 months on Nivo, progressed to stage 4 then 3 infusions of Ipi).  I’ve had what the doc calls a “pretty good” response to the Ipi on top of the Nivo. I had several tumors in my lungs along with some lymph nodes. The lymph nodes and all but two of the lung nodules are gone. There are however a couple of stu…Read more

]]> 28a7f2dbfd34cafb80339c9bf5c84ea2 Sdmotorcop replied to the topic New Video by Dr. Weber reviewing treatment options for metastatic melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-video-by-dr-weber-reviewing-treatment-options-for-metastatic-melanoma/#post-274077 Fri, 29 Jan 2021 02:37:46 -0500 Thanks for encouraging news Ed. I went to stage 4 after 10 months of Nivo (lung, stomach and lymph node Mets). I did three doses of Ipi (June 20) before my liver started to go wonky. My last Pet was encouraging with a decrease in size of all Mets. I have a ct next week so I’m keeping my fingers crossed.

]]> 08dff50e55122d5aa29a439129284dec Sdmotorcop replied to the topic New Video by Dr. Weber reviewing treatment options for metastatic melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-video-by-dr-weber-reviewing-treatment-options-for-metastatic-melanoma/#post-274060 Wed, 27 Jan 2021 18:47:56 -0500 Did I hear Dr Weber correctly when he said if you are BRAF wild and you progress on IPI/Nivo that you are kind of hosed? I would hope they’d be looking into treatments for that also..

]]> 1c1522167cad7c2eedae205421ef1982 Sdmotorcop changed their profile picture https://forum.melanoma.org/activity/p/147/ Thu, 17 Dec 2020 09:52:56 -0500 0