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Originally Dx’d with a 4.1mm (Breslow Depth) Tumor where once was a birthmark. I did the wide excision, got clean margins, and only one of 5 Groinal Nodes contained Malignancy. Halfway through Intron-A therapy I was pronounced N.E.D
and finished anyway, to hopefully hold off any future recurrences. Fail! I recurred, Stage IV, with a Metastasis on my left Adrenal gland and underwent successful Brachytherapy Radiation (“off label”). Only one month after that N.E.D. finding (or non finding ;)), in fact it was the 30-day PET/CT follow up scan for the radiation treat, they located 4 new Mets. 1 on the Pituitary Gland, one in my L2 Vertebrae, and 2 in my lowest left rib. I am now 33, but at 32 (original Dx was at 28) I began Ipilimumab (Yervoy) and got through the 4 infusions, 3 weeks apart – though it was quite the struggle towards the end. Follow up scans continued to show skrinkage/weakening of the remaining Mets until I began to experience symptoms from hallucinating tof blindness and intense pain in one, then both eyes. The findings behind these as well as numerous others (perhaps the worst of which the Hormone imbalances) was another small but growing Metastasis on my Pituitary Gland. Due to my imbalancedad ‘mones and other blood and nutrient level deficiencies I wasn’t cleared for any general anesthesia and couldn’t be operated upon for this reason. Therefore, with a fear of further immunotherapies and the promising results of the more targeted “T-Vec” (oncologically modified HSV-1) I began a regimen of injectionsome through the corner of my eye, along my optics nerve and into the tumor itself. The T-Vec was seemingly working based on only one scan and my T-cell counts being elevated. I was again feeling victorious, or on my way there. Unfortunately, I soon underwenot another full body PET/CT and the Pituitary hadn’t fully vanished as well as a new mass on my left lung. I subsequently discontinued the uncomfortable (putting it kindly) T-Vec injections and have just began Opdivo because of the multiple sites paired with the effectiveness of Opdivo in recent years. I’ve just undergone my very first infusion and am not doing too bad, knowing that it isn’t likely at full force just under one week in. I come here to ventilate, encourage and share & absorb knowledge of all that we here must ebdure. No matter how difficult and depressing it may get it have the greatest wife on this planet who is supportive is all ways, every day! I also recognize the true joy which cancer inadvertently blesses each of us with; the true value of the smallest and seemingly simplest things in our lives. Had I not been knocked from my “28yo, invincible and coming for the world” platform I’d never feel anything near the love I feel for those and that which deserves and earns my love. The joy which is brought by things I took for granted throughout life and the pleasure of placing smiles upon the faces of those I love most, and those who love me!
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