Melanoma & Skin Cancer support: Introduce yourself and connect

@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.

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: 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?

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: 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.

@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

@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

Sorry hurray= heart

@davepurvis: that's often the suckerpunch with this metastatic melanoma, isn't it? Seems like it's frequently one step forward followed by a half step....or more....back. But sometimes all we need is babysteps in the right direction. And right now it sounds like you're in the midst of those little steps.

I can totally relate to the unknown portion, having spent four days last week inpatient at Mayo with the ultimate diagnosis of Fever of Unknown Origin for which I suspect my immunotherapy may have played a role. There's so much we've come to know about this disease and ways to go about treating it, yet there are those mysterious components that remain so confounding.

One of the reasons I for one am glad we have this forum, so we can share our stories. I remain encouraged by yours and look forward to hearing more about your journey. Keep on trekking!

PS I totally got you were referring to your heart rate (bpm = beats per minute) but appreciate the clarification for all 🙂

Hello, my name is Mike and I was first diagnosed with Stage IIc melanoma in February. After a couple surgeries, I started Keytruda treatment in March, but unfortunately it did not have any effect on prevention. PET scan last month showed that I have Stage IV metastatic melanoma lung nodule. I was referred to Mayo Clinic and will begin immune therapy, Ipi Nivo, on 10/8.

Not sure where to go from here, my thoughts are scattered on what I need to do. Life planning is not something I thought I would need to think about, but here I am. Looking forward to connecting with others on how they are coping with everything this disease brings.