Melanoma Research Foundation | Chris R | Activity https://forum.melanoma.org/user/chrisr/activity/ Activity feed for Chris R. Tue, 21 Apr 2026 13:19:39 -0400 https://buddypress.org/?v= en-US 30 hourly 2 6dd09d0b0febc863f41ad6bc4de5cf15 Chris R replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-281132 Tue, 10 Mar 2026 18:57:52 -0400 @gpayne68, I am so sorry to hear that. The therapy regimens have come a long way! I am 3.5 years NED after using Ipi-Nivo. It was not without it’s long term side effects (pituitary inflammation which impacted thyroid and adrenal glands) but nothing that cannot be managed with a couple morning pills. Something I can literally live with. God Bless…Read more

]]> 76c70e9096ed2362484c921df021d8d3 Chris R replied to the topic Milestone Monday in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/milestone-monday/#post-281131 Tue, 10 Mar 2026 18:49:19 -0400 I had a PET scan today, 42 months NED of Stage 4 after Ipi-Nivo!

]]> 2acad336b418058412a2d6946ac9b8d4 Chris R 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-280569 Tue, 31 Dec 2024 11:48:06 -0500 Shocking and sad news to find on a day that I decided to post some promising news for those treated with Ipi/Nivo. May Celeste rest in God’s loving arms.

]]> 38c5e08f1980a2bfbdb14a100531e817 Chris R replied to the topic Marijuana when not on immunotherapy? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/marijuana-when-not-on-immunotherapy/#post-280084 Wed, 28 Feb 2024 23:14:35 -0500 I think part of anxiety can be the loss of control and the feeling that one cannot do anything. I am stage IV and went through immunotherapy. While no input on thc/cbd, I did ask my oncologist about high dose vitamin C. She consulted with the hospital pharmacist and recommended against while on immunotherapy as it acts to rev up the immune system…Read more

]]> db27e6fe30fafac5002fbfcbe75d87b5 Chris R replied to the topic Newly Diagnosed in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/newly-diagnosed-47/#post-280083 Wed, 28 Feb 2024 22:48:52 -0500 We all have different journeys and hopefully yours will be be okay. As point of reference, and hope, I was diagnosed with a 9 mm (yes, no decimal) lesion on my head in 2019. Even being that thick, it did not travel to any lymph nodes.

Long sleeves, big brim hat and sunscreen are my new realities…as well as enjoying every day.

]]> de3561a07072dc6fecb8a91d9ac8c1d1 Chris R replied to the topic Recent stage 1a melanoma diagnosis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recent-stage-1a-melanoma-diagnosis/#post-279096 Wed, 23 Aug 2023 13:39:43 -0400 Hang in there. Waiting is certainly tough. All you are hearing is true. <1mm is good (well, as good as it can be). .3mm was very early. No doubt you should find a good dermatologist and get regular checks.

Sunscreen, UPF rated clothing and a large brim hat are good to protect from the sun.

Try to keep yourself busy with everyday activities…Read more

]]> 412b6478bcd58c5236ff38a795d14e70 Chris R replied to the topic Melanoma treatments and quality of life in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-treatments-and-quality-of-life/#post-278770 Tue, 20 Jun 2023 16:07:22 -0400 Finem Respice, best of luck with our consult today. My journey with melanoma began in 2019 with a significant cutaneous lesion on my scalp (9mm thick). Fortunate that it did not spread to any lymph nodes. Fast forward 2022 I went in for my annual PET scan and a 9mm nondual was discovered in my lung and a couple small spots elsewhere. I made it…Read more

]]> 543bc36aecf5a44130a4728241da12e8 Chris R replied to the topic Treatment for Immunotherapy Related Fatigue in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/treatment-for-immunotherapy-related-fatigue/#post-278579 Wed, 26 Apr 2023 16:02:45 -0400 I too have pituitary gland inflammation and will be on levothyroxine and prednisone going forward. Your oncologist should be able to tell from your blood work if you need to see an endocrinologist. Adrenal insufficiency is very serious, but can be managed with hydrocortisone or, in my case prednisone. (I had an adverse reaction to hydrocortisone)

]]> c4e21d99bb718bdba5173aa58121d0ba Chris R replied to the topic On having a good day. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/on-having-a-good-day/#post-278363 Tue, 07 Mar 2023 22:10:28 -0500 Amen. The reality is that anyone could be hit by a truck before the day ends.

A melanoma diagnosis cannot help but make one face their mortality. While I have responded well to treatment and am officially in full remission as of today, I certainly will never take another day for granted. Sunrises are just that much more beautiful.

]]> bdf942951af6d1a2e8ff48adb4b5eb40 Chris R replied to the topic 4th infusion and no side effects in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/4th-infusion-and-no-side-effects/#post-278201 Fri, 03 Feb 2023 20:12:28 -0500 I cannot speak specifically to Pembro, but I know the Ipi-Nivo cocktail can have side effects occur as late as a couple years after treatment.

I asked that question after two or three weeks after starting Ipi-Nivo as I had no side effects. I was told not read into not having side effects as a sign it is not working. Apparently some rev’ed up…Read more

]]> 5e032fd814adad70835f793a1e579652 Chris R 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-278200 Fri, 03 Feb 2023 19:56:03 -0500 Hang in there Jeff.

]]> 161258cc1c28eb478f91f417ea16df82 Chris R replied to the topic 5 Year Nedaversary! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/5-year-nedaversary/#post-278199 Fri, 03 Feb 2023 19:44:49 -0500 Congratulations! Great news indeed. If my scan remains unchanged in March I will be able to stop Opdivo. I am not sure that I am technically NED as there is a 8mm spot in my lung that is new from my original diagnosis, but does not show bright and is not growing. I am hoping my journey goes as well as yours.

]]> 2644710928fc4b46d75e4e08e60032f8 Chris R replied to the topic Newbie: Getting perspective on my journey from the forum in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/newbie-getting-perspective-on-my-journey-from-the-forum/#post-277285 Mon, 26 Sep 2022 20:56:13 -0400 Marty, sorry that you too are dealing with this. In 2019 I had a 9mm lesion removed from my head. Clear margins and a clear CT/PET scan at that time. In January of this year PET showed a 10mm spot in left lung that biopsy confirmed as melanoma. Boom, Stage IV. I went through 3 treatments of ipi/nivo before side effects hit…hard. First PET…Read more

]]> bc1e2d6bcf29376c2ace16afe52105ba Chris R replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276850 Sat, 18 Jun 2022 10:01:00 -0400 I got GREAT news. 2 of 3 nodules no longer visible and the largest (9+mm) has, as the report says, “significantly” shrunk to 6mm. That works out to 75%-/- reduction in volume! Hopefully the regression continues. Well worth the 10 days of side effects and now taking a thyroid pill. Ipi/Nivo has worked!

I hope anxiotyalldaylong’s scan goes as well!

]]> ea00823f087dedfc521fb4ac7134f44c Chris R replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276847 Thu, 16 Jun 2022 19:41:49 -0400 I go in tomorrow for my first post Ipi-Nivo PET scan. My first Ipi-Nivo treatment was April 20th. I remain optimistic but understand, particularly for the first scan, that it may not show ideal results.

]]> 4e15e8de112719ac36c507eda1e5022b Chris R replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276823 Thu, 09 Jun 2022 11:11:03 -0400 I just finished 3 of 4 Ipi/Nivo treatments and had to stop due to colitis. I go in for my first post treatment scan on June 17. I am tempering my anxiety by considering the three possible outcomes: 1.) Scan shows regression, which would be great, 2.) Scan shows no change, no change is good. 3.) Scan shows growth, or other hot spots, okay, less…Read more

]]> 898d8985170cd2d736fab7a344fc6e80 Chris R replied to the topic Thyroid in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/thyroid-3/#post-276822 Thu, 09 Jun 2022 10:42:12 -0400 I just finished 3 of the 4 cycles of ipi/nivo. I had to stop mainly due to colitis. More to the point, it appears it has impacted my Thyroid as well. I go to the endocrinologist today. I will likely have to be on a thyroid medication the rest of my life. Not ideal, but lets hope I have to take that medication for a very long time. 🙂

I am to…Read more

]]> 2a2b76572c60bf566c87b395a1f209b9 Chris R replied to the topic Sun Protection and Outdoor life in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/sun-protection-and-outdoor-life/#post-276821 Thu, 09 Jun 2022 10:37:01 -0400 Last summer we went to Hawaii. Talk about sun anxiety. I purchased a number of UPF 50 long sleeve shirts on Amazon. Typically in the $20 each for what I would describe as long sleeve T shirts. The fabric was basically the cool breathing type. They worked great in and out of the water. My favorite hats are wide brim hats by Oregon Research, as…Read more

]]> 587477036646d8f5d737b079ded8fc86 Chris R replied to the topic New to the Forum, Introduction in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-to-the-forum-introduction/#post-276560 Fri, 01 Apr 2022 15:59:24 -0400 Thanks all. While there have been some hiccups with the medical system, overall I am very happy with the Froedert system here in Milwaukee. It is a teaching/research hospital and does clinical trials. My oncologist is a melanoma specialist and her recommendations are in line with what I have read from Mayo and MD Anderson.

It is amazing how…Read more

]]> 9006921d19b548f2bc4b441597e2eb10 Chris R replied to the topic New to the Forum, Introduction in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-to-the-forum-introduction/#post-276552 Thu, 31 Mar 2022 17:35:18 -0400 Thanks Ed. I will glean what I can here. Just not a facebook guy.

]]> 083c6362a8dcde0fb7cf4c51dcfff3c2 Chris R started the topic New to the Forum, Introduction in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-to-the-forum-introduction/ Thu, 31 Mar 2022 14:15:09 -0400 Hello all. I am Chris, 58 year old male. My melanoma journey began 3 years ago (January 2019) with discovery of a cutaneous tumor on my head. Neither my primary care doctor or surgeon though it was melanoma as the raised bump was skin colored. Melanoma it was, and 9mm thick, non-ulcerated. I was blessed that all lymph nodes and PET scan were…Read more

]]> 03797142304e834fbb86d960aed73d0f Chris R became a registered member https://forum.melanoma.org/activity/p/16299/ Tue, 29 Mar 2022 21:29:07 -0400 0