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 clear.
- March 31, 2022 at 10:15 am
Fast forward to January 2022. Annual scan came back showing 3 spots: Lung, adrenal gland and hamstring. 🙁 The lung was the only spot large enough to biopsy. A sample taken via bronchoscopy confirmed metastatic melanoma. The scan did it’s job in finding it fairly early. (9mm) Given 3 locations, surgery would not change prognosis.
Yesterday was my first Ipi-Nivo treatment. So far no side effects, but know that may change. I am taking nothing for granted.
I found this site a few days ago when Googling treatment for metastatic melanoma. I found the posts informative and reassuring, thank you.
Everyone have a great day. Peace, Strength and Health to all!
ed williamsParticipantHi Chris, it has been slow around the MRF lately since changes were made a while back to the web page. As an option many folks that are stage 4 are also members on facebook melanoma groups. There are a few of them and one specific to stage 4 which you have to answer a couple of screening questions to join, trying to keep out spam folks. Gland they caught things early and tumors are small. Good luck with the treatments!!!
- March 31, 2022 at 1:16 pm
- March 31, 2022 at 6:47 pm
Sorry you have the need to be here, but welcome. You are getting the treatment that has the greatest response rate, combined with durability of that response, currently available to melanoma patients. There are many here who have reaped the benefit of that very treatment. So, you have every reason feel hopeful.
To that end – my story. In 2003 I was diagnosed with Stage 3b (skin lesion plus a positive node). Sadly, at that time, there were no treatments available for melanoma other than surgery and/or interferon which made you sick as a dog and had zero clinical impact on survival. With a 10 and 12 year old, I had no interest in being incapacitated (especially for no benefit) so I opted for surgical “cherry picking” and watching/waiting. In 2007, another skin lesion was removed, but all nodes were negative. However, in 2010 a chest X-ray showed ‘something’ in my lung. On biopsy – yep – Melanoma. Follow up MRI of the brain showed a lesion there, too. So – lung lesion surgically removed. Brain met zapped. Ipi (Yervoy) was SUPPOSED to be FDA approved “soon”, but was still not available to me. After much searching, I joined a phase 1 nivolumab trial at the end of 2010. I took nivo (Opdivo) for 2 1/2 years in the trial along with 30 fellow ratties – and…..we did well! So – long story short – I am still here, NED for melanoma since my last dose of nivo in 2013.
If you are bored and interested in the history of nivo, I posted this back in the day: Love Potion…or Patient…#9!!!!!
Though you are already on a great treatment, if you are interested in treatments for melanoma generally, I put together this primer a few years ago. It does – FINALLY – need one update as relatlimab was just approved combined with ipi. At any rate, here’s the link if you are interested: Primer of Melanoma treatments
As Ed mentioned, traffic to this forum has diminished recently, but it is still populated with lots of smart, caring melanoma peeps. Ask more questions as you have the need. I wish you my best. Celeste
- March 31, 2022 at 9:41 pm
Sorry about your news, but glad that you found us. I am not a Facebook guy either (I closed my account a year or more ago, good idea). However, this forum used to be really active – and there were more experts who would check in more regularly, so questions would be answered quite quickly. Now it;s much slower and a lot depends on whether Celeste or Ed are able to post and help out (others here are really good too) – and they may check in less since there is less traffic = vicious circle.
After being scared at first from googling I found this site really helpful, lots of good advice and people i could try to help. And if you have practical problems with your treatments – side effects or slow response – you should ask here and people will try to help.
However, I would strongly think of joining the Facebook group. I lucked out in the end and treatment seems to have worked (I take nothing for granted) so I am less active and didnt join the group. But if melanoma returned then I would join the group, even if it meant opening a Facebook account!
One plus compared to years ago – I think there is a better awareness of immunotherapy among doctors and how to use it. But still I would make sure that you are seeing a melanoma specialist and be open to second opinions if you get stuck. But as Celeste points out, you are on ipi-nivo, this is a good treatment, suggests your doctors know what they are doing.
If you have questions or experiences to share, do post them. I hope things work out. This board has been very helpful for me
Best wishes Mark
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.
- April 1, 2022 at 11:59 am
It is amazing how quickly things change. I recall reading a post that directed me to a blog bemoaning that the FDA only allowed ipi infusion first, then nivo despite better results with nivo going first. I was pleasantly surprised that I got nivo first followed by ipi. Granted, there was only a 1/2 hour separation between the two.
Have a great weekend everyone.
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