Hi All - my 40 yr old husband, who had a melanoma removed from his chest a few years prior and had since checked out clean, was very suddenly diagnosed with metastic melanoma this past May. Ongoing flu-like symptoms and suspected vertigo led me to take him to the ER, where we learned he had a baseball sized brain tumor. After an extensive emergency surgery, the tumor was determined to be melanoma and subsequent scans revealed it was throughout his body. New brain growths removes him from clinical trial eligibility. This kicked off a summer of battle - including an emergency intestinal surgery, brain and spinal radiation, immunotherapy (Yervoy and opdivo combo), and braf genetic therapy drugs. Side effects have been ever present sometimes requiring hospitalization, mostly use of prednisone, which negates the efficacy of the immunotherapy treatment. He has his 2nd pet scan today (1st scan since the original in May) so will see what status is. So far plan is to continue Opdivo and re-start braf if needed.
This has certainly been an upending experience for our family with two young children and most family out of state. We’re working to prepare for the unknowns of the future, remain as optimistic as can be, and to find our family’s “new normal”.
We’re in the Chicago suburbs and are interested to learn real stories of those who have been impacted similarly, and find a place with others navigating the uncertain and disruptive path melanoma brings.