Melanoma & Skin Cancer support: Introduce yourself and connect

@grammato3 Hi Susan, Yes, combination immuno’ is being discussed yet again but this time I’d need to fund the treatment ( was originally prescribed by medical team but cancelled by ‘the powers that be’ as I’m classified as immuno’ resistant).

The challenge right now is that I get small single tumours ( liver, brain and possibly lung) that can be treated with radiation. It seems I’m oligometastic! Right now liver tumour in remission, brain tumour likely same using gamma knife and small 3mm lesion in lung might be consequence of COVID. hurray now normal 50 bpm (resting) and medical team advising that we’ve just got to wait and see what the melanoma decides to do?

It’s a situation that’s both good and bad….good not too serious as yet and bad because of the unknowns.

Just gotta hang in and hope.
Dave

@grammato3 and @davepurvis Thank you both for the informative posts! It makes my head spin to read what you all have gone through, having had simple melanoma myself, excised in 2008.
Ginger

@davepurvis: it must have been terribly disappointing and difficult not only to suffer cardiac effects - requiring hospitalization - but then have the clinical trial cancelled for unknown reasons.

You sound very informed in your ability to make sound decisions in your care, part of that I sense is from the good solid confidence you have in your doctors- which is so important when treating for a condition such as metastatic melanoma. Have they discussed the possibility of advancing to perhaps combination immunotherapy in the future, or is that dependent on the results of your upcoming scans?

On behalf of others like me going through this, I can say I do appreciate your sharing your experience, thank you.

Hi Susan,

No comment as yours is an excellent synopsis of my current state.

I have received excellent treatment and have full confidence in my medical team.

My only complaint is the ‘authority’ definition of immuno’ resistance which did in fact cancel treatment prescribed by my medical team.

To facilitate my need for systemic treatment I then participated in a major clinical trial but had cardio related events requiring hospitalization.

Eventually ( about the time of my cardio recovery) the trial was terminated for all global participants. (Reason unknown). I was subsequently offered other clinical trials but all Stage 2 and too risky in my humble opinion. This is when I opted for radiation and quality of life ( the double awareness model)

So very happy with medical team but funding and definition of immuno’ resistance needs better definitiov

Best Dave

(I hope this is helpful for others ‘in the same malignant melanoma boat’)

@davepurvis: Thank you. So that I fully understand and to make it clearer to others: you have limited spread to other organs (oligometastasis vs widespread metastasis) and had been classfied as immunoresistant as after a year of Keytruda you had evidenced spread . However, after undergoing stereotactic body radiation (SBRT) your liver lesion evidenced shrinking and your liver enzymes have been within normal range - which generally also indicate a more favorable response; you underwent a gamma knife treatment for a single brain lesion and will be having brain MRI in November to assess the results of that procedure, and while a small lung lesion was detected it remains uncertain if it's melanoma related; another CT is planned in 3 months to determine if it's grown and potentially have a biopsy at that time if it has. Have I got that right? That seems to fit with the doctors conclusion.

Is there something that makes you feel your prognosis is poor at this point or are you feeling discouraged by your past treatment and/or findings? Have other treatment protocols been discussed?

Currently
• Immuno resistant
• Oligometastic
• Single liver lesion treated SBRT and shrinking.
• Single brain lesion treated gamma knife and MRI planned in November 2025
• Single lung lesion small at 3 mm and to small biopsy or treatment CT planned 3months
• Blood work good AST ALT AND LDH normal.

Drs concluded - wait, monitor and hope.

Thanks,
Dave

@davepurvis: Dave, I'd like to welcome you to Mayo Clinic Connect albeit under these difficult circumstances for you. I've also been treating for metastatic melanoma and understand everyone's journey with this disease is unique and unpredictable. It sounds as though you've been through some tough challenges.

I'd like to understand more about what you've been through and are facing now. I'm trying to understand some of the acronyms you've used; I believe SBRT is stereotactic brain radiation. Have you been told you are currently in remission or that you require additional treatment for lesions in the brain and/or lungs? If so, what treatment is being considered? Please tell me more about your current situation.

Nodular Melanoma 3 years ago with surgical removal of ear and removal 8 lymph nodes. One positive but not extra nodal. One year of Keytruda thereafter but metastasis to liver 5 months later snd classified as immuno resistant. Therafter , clinical trial and tachycardia but trial cancelled Match 2025. Now have had SBRT on single lesion in liver and in remission. Metastasis to brain, again single lesion and radiation treatment September 2025. Now it looks like I might have lung metastasis? My personal prognosis is very poor …..thoughts svp

@nancycj Thank you for sharing your perspective. Wishing continued good health to you!

Hi Susan, thanks for your comments. I stay optimistic by my faith in God and the Doctors. Also, the support and prayers from my family and friends, as well as our 2 loving dogs. Stay active, even a small walk every day helps with your mental state. I am a fighter and will not give up!