Suddenly gone from lung stage 2 to rare melanoma stage 4

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Hi, I was diagnosed with lung cancer stage 2 but turned out it’s a super rare spindle cell melanoma that was a metastasis from a skin cancer that has since resolved itself. Lung surgery removed tumour with clear margins, and clear lymph nodes so I thought I was ok then suddenly today I have mets in the ct scan in liver and lung and a stage 4 diagnosis. Pretty shocked.
Anyone else had this rare type of melanoma? 2 options for treatment - ipi / nivo which looks hideous or a newer cocktail of relatimab / nivo which looks less brutal, equivalent effect but less data (4 years)

anyone had a similar profile or experience of the newer treatment?
thanks

Mandy

Eli71612b4aa20 4 months ago

I had insitu melanoma which spread to knee and groin stage 3c. Its now spread to the lungs both sides and now stage 4.. I start ipi and nivo this afternoon. One step at a time.....

Emo_Bham 4 months ago

Hi.

I didn’t have the rare type you refer to, however my melanoma spread to my liver & lungs, and I started with Ipi/Nivo followed by Nivo for two years.

I know Ipi/Nivo isn’t well tolerated by some people, however I didn’t have any particular issues. A little fatigue for a day or so after the treatment and dry skin were the main short term side effects. A long term side effect was the damage to my pituitary gland, which has resulted in secondary adrenal insufficiency, which is a serious medical issue, but it’s easily treated with daily hydrocortisone tablets.

I’ve now completed my treatment, and I’m in remission.

In summary, don’t assume you’ll automatically struggle with Ipi/Nivo. Some do, some don’t. As in life generally, it’s a bit of a lottery!

All the best for the future, and good luck with whatever treatment you choose.

Eli71612b4aa20 4 months ago in reply to Emo_Bham

Thats really helpful to know

All the very best

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Suddenly gone from lung stage 2 to rare melanoma stage 4