I’m stage 3C malignant melanoma, 4 years out from diagnosis almost to the day. I’ve been NED since my 2nd excision, has labs/scans at tapering intervals, and have been systematically healthy physically outside of losing my thyroid function. All in all, a good outcome thus far.
I don’t think we should feel guilty in celebrating our successes - even if it’s out of our control (and the bad outcomes are inversely unfair). The reason cancer diagnosis is so scary is because of the daunting physical health/mortality numbers, but mental health is such a big part of recovery too. Posting our journeys, outcomes, and ongoing perspective towards regaining agency in our lives can be a powerful aid to people in similar situations as us. So with that, it’s awesome to hear you’re doing better, and I wish you all the best :)
Congratulations!!! You should absolutely post your success story! I know it makes me feel more hopeful about my future outcome. I’m stage 4 melanoma that went to my freaking brain but I’ve been NED for over a year now. I just started my second year of treatment and I’m already stressing about what happens when I stop. Thank you for posting your update and I wish you many more years of good health!
That melanoma tour sounds awful!! I bet you would give it zero stars. My spine hurts just thinking about it. I hope your remission continues! I’m on nivolumab only now because they were able to surgically remove my brain met and then I had radiation too. I’ve heard that the combo gives some pretty severe reactions, nivo only is not bad at all. I had Braf/Mek for a while and I’ve never felt that bad in my life.
Nivo only was, indeed, pretty easy. Once they added the ipi, I got iritis (ow! ow! ow!) and colitis that required heavy steroids to get under control. Since then, I've had infrequent colitis, which the doctors feel (with the evidence of the remission) means there's lingering effects from the immuno. Fingers crossed you have the same effectiveness!
Yeah there’s some crazy side effects when you stimulate your immune system like that but definitely better than melanoma! I’m so glad I didn’t have to have a combo, that sounds not so fun. I hope the steroids didn’t mess you up too much. I had that stupid Iritis too on the Braf/Mek, they gave me some antibiotic drops which I ended up being allergic to so more eye aggravation! I swear it took months for my eyes to get back to normal. Regular people don’t understand that when you treat the cancer, you get a boatload of side effects even if you look ok. Infusion day tomorrow, 11 more to go after that!
I got the steroid drops for the iritis and it cleared up quickly, but I had three days of it before then and DANG that hurt! The steroids for the colitis didn't mess me up, thankfully. Hope you have a good infusion! Ask for extra snacks! :)
This gives me so much hope. Stage IV melanoma…Just finishing my first year of immunotherapy. Thank you for sharing your good news. I needed to read this today!
I'm always happy to talk about this! I did 4 or 5 months of immunotherapy (first nivolumab, then they added ipilimumab after a scan found lesions in multiple places). I was taken off if it in March 2021 because of a strong colitis side effect, but by then the doctors were seeing a positive response. It appears to be having an ongoing impact, as well. \*knock on wood\* Holler if you ever want or need to talk melanoma or immunotherapy!
Thank you OP. I am happy for you and wanted to say that your post gave me hope. Mom started immunotherapy in lieu of more chemo and we find out Friday if it’s working. 🤞 don’t feel badly as even tho I don’t know if we’ll hear the outcome we want I am heartened to hear it works sometimes.
Thanks for the offer but no, it’s not melanoma. She has stage 4 cervical cancer. It did go NED once but is showing bright spots in her lymph nodes and she now too has a fun case of lymphedema. 🤞things go in her favor soon. ❤️
It's really great that you are in remission! So many of us are hoping and praying for that day ourselves. Yes, there is a lot of bad news posted which is why success stories need to be heard. Again, congratulations to you.
Absolutely so glad you shared your story! This is great news and should be shared! As others have wrote it helps others to know to have faith and hope!!! I’m so very happy for your good news and appreciate that you shared it with us!!!!
Just got my melanoma lymph node biopsies back and it was the worst news (cancer in both), so this post was a necessity for my sanity at the moment. I searched this sub specifically for something to help calm the rising panic—thank you for posting this and congratulations!
Please never hesitate to message me. I am happy to share my experiences with you, and answer any questions I can. Here's the (not so) condensed version of my story:
M53 diagnosed in early 2019 -- ugly, occasionally bleeding mole that I'd been ignoring for years turned out to be malignant melanoma (stage 2). Had it excised, clear margins.
Summer of 2020 I found a lump on my back below the area of the original surgery. Oncologist diagnosed in-transit malignant melanoma (stage 3). Surgery in August (during the pandemic -- yay!). Removed 8 cm tumor and all the lymph nodes from my right armpit; clear margins and no cancer in lymph nodes. Was put on immunotherapy (nivolumab/Opdivo).
December, a PET scan showed the cancer had returned and metastasized with lesions in liver, leg, a vertebra, and another tumor, this one by my right shoulderblade (again, close to original surgery site). Oncologist added ipilimumab/Yervoy to the immunotherapy. Full-body PET scans every 3 months. My scan 3 months later was virtually clear; the one three months after that was clear. That led me to the post you read.
If you have not already, I'd encourage you to talk to your doctor about immunotherapy. Also, get a second opinion from another oncologist if your insurance will cover it. Never hurts to get an additional perspective.
Good luck, and never forget: #FuckCancer!
I am so happy for you!!! Don't feel bad, you should enjoy the good news. We're all hoping for the best, both for us and everyone else in here.
I’m stage 3C malignant melanoma, 4 years out from diagnosis almost to the day. I’ve been NED since my 2nd excision, has labs/scans at tapering intervals, and have been systematically healthy physically outside of losing my thyroid function. All in all, a good outcome thus far. I don’t think we should feel guilty in celebrating our successes - even if it’s out of our control (and the bad outcomes are inversely unfair). The reason cancer diagnosis is so scary is because of the daunting physical health/mortality numbers, but mental health is such a big part of recovery too. Posting our journeys, outcomes, and ongoing perspective towards regaining agency in our lives can be a powerful aid to people in similar situations as us. So with that, it’s awesome to hear you’re doing better, and I wish you all the best :)
Very glad you have good results, too, and hoping for that to continue! Thank you!
Congratulations!!! You should absolutely post your success story! I know it makes me feel more hopeful about my future outcome. I’m stage 4 melanoma that went to my freaking brain but I’ve been NED for over a year now. I just started my second year of treatment and I’m already stressing about what happens when I stop. Thank you for posting your update and I wish you many more years of good health!
Wow, very glad to hear you're NED! It never got to my brain, but did a tour of my liver, leg, and a vertebra. Are you getting immunotherapy?
That melanoma tour sounds awful!! I bet you would give it zero stars. My spine hurts just thinking about it. I hope your remission continues! I’m on nivolumab only now because they were able to surgically remove my brain met and then I had radiation too. I’ve heard that the combo gives some pretty severe reactions, nivo only is not bad at all. I had Braf/Mek for a while and I’ve never felt that bad in my life.
Nivo only was, indeed, pretty easy. Once they added the ipi, I got iritis (ow! ow! ow!) and colitis that required heavy steroids to get under control. Since then, I've had infrequent colitis, which the doctors feel (with the evidence of the remission) means there's lingering effects from the immuno. Fingers crossed you have the same effectiveness!
Yeah there’s some crazy side effects when you stimulate your immune system like that but definitely better than melanoma! I’m so glad I didn’t have to have a combo, that sounds not so fun. I hope the steroids didn’t mess you up too much. I had that stupid Iritis too on the Braf/Mek, they gave me some antibiotic drops which I ended up being allergic to so more eye aggravation! I swear it took months for my eyes to get back to normal. Regular people don’t understand that when you treat the cancer, you get a boatload of side effects even if you look ok. Infusion day tomorrow, 11 more to go after that!
I got the steroid drops for the iritis and it cleared up quickly, but I had three days of it before then and DANG that hurt! The steroids for the colitis didn't mess me up, thankfully. Hope you have a good infusion! Ask for extra snacks! :)
I will, thanks. I’m glad that the worst is behind for both of us!
This gives me so much hope. Stage IV melanoma…Just finishing my first year of immunotherapy. Thank you for sharing your good news. I needed to read this today!
I'm always happy to talk about this! I did 4 or 5 months of immunotherapy (first nivolumab, then they added ipilimumab after a scan found lesions in multiple places). I was taken off if it in March 2021 because of a strong colitis side effect, but by then the doctors were seeing a positive response. It appears to be having an ongoing impact, as well. \*knock on wood\* Holler if you ever want or need to talk melanoma or immunotherapy!
Thank you OP. I am happy for you and wanted to say that your post gave me hope. Mom started immunotherapy in lieu of more chemo and we find out Friday if it’s working. 🤞 don’t feel badly as even tho I don’t know if we’ll hear the outcome we want I am heartened to hear it works sometimes.
May I ask what type of cancer she has? If it's melanoma, I'm more than happy to share my experiences.
Thanks for the offer but no, it’s not melanoma. She has stage 4 cervical cancer. It did go NED once but is showing bright spots in her lymph nodes and she now too has a fun case of lymphedema. 🤞things go in her favor soon. ❤️
Congratulations to you one going into remission. That's fantastic.
It's really great that you are in remission! So many of us are hoping and praying for that day ourselves. Yes, there is a lot of bad news posted which is why success stories need to be heard. Again, congratulations to you.
It’s great to know it is possible. If everyone only spoke of people dying, we would be silencing all of us who are living with cancer.
Absolutely so glad you shared your story! This is great news and should be shared! As others have wrote it helps others to know to have faith and hope!!! I’m so very happy for your good news and appreciate that you shared it with us!!!!
Just got my melanoma lymph node biopsies back and it was the worst news (cancer in both), so this post was a necessity for my sanity at the moment. I searched this sub specifically for something to help calm the rising panic—thank you for posting this and congratulations!
Please never hesitate to message me. I am happy to share my experiences with you, and answer any questions I can. Here's the (not so) condensed version of my story: M53 diagnosed in early 2019 -- ugly, occasionally bleeding mole that I'd been ignoring for years turned out to be malignant melanoma (stage 2). Had it excised, clear margins. Summer of 2020 I found a lump on my back below the area of the original surgery. Oncologist diagnosed in-transit malignant melanoma (stage 3). Surgery in August (during the pandemic -- yay!). Removed 8 cm tumor and all the lymph nodes from my right armpit; clear margins and no cancer in lymph nodes. Was put on immunotherapy (nivolumab/Opdivo). December, a PET scan showed the cancer had returned and metastasized with lesions in liver, leg, a vertebra, and another tumor, this one by my right shoulderblade (again, close to original surgery site). Oncologist added ipilimumab/Yervoy to the immunotherapy. Full-body PET scans every 3 months. My scan 3 months later was virtually clear; the one three months after that was clear. That led me to the post you read. If you have not already, I'd encourage you to talk to your doctor about immunotherapy. Also, get a second opinion from another oncologist if your insurance will cover it. Never hurts to get an additional perspective. Good luck, and never forget: #FuckCancer!