New to the Forum, Introduction

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

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