Butch

Stage IV Melanoma

 

I was first diagnosed with melanoma in my right lower leg in April 2014. I had my first wide excision. Nuclear dye mapping to lymph nodes, which 6 were taken out behind my knee and 3 in the groin. Later had a skin graft and was laid up all summer waiting for it to heal. Then, 2 weeks before Thanksgiving, I noticed what appeared to be a blood blister next to my incision site. It was a satellite melanoma. I was told I had stage III and had a PET scan, which didn't show any activity anywhere else. Then came another, and then another satellite melanoma. They kept cutting them out and sending me for PET scans that revealed I had a small nodule on my left lung. Too small to biopsy. Now I had a pea size, that grew to marble size in 2 weeks under my skin at the bottom of the original site. Turns out its nodular melanoma and the spot on my lung is now a centimeter. The Dr says I'm in Stage IV now and will biopsy the lung but I will have to start immunotherapy. I'd like to hear from anyone who can give me some insight and advice on what to expect. Or if they know what I can expect from the immunotherapy.

Thu, 2018-05-10

Comments

neilarama2017 - (12/3/2018 - 10:47am)

Hey Butch, I was diagnosed May of 16 with stage 3B.  1 Large node in my armpit, they removed all nodes (47) and had Radiation on the area.  Also was given Opdivo as it was just released as a standard of care.  Its a bit different from keytruda which is probably what your looking at but very similar side effects can occur.  I was fortunate that all I incurred was fatigue and rashes and pimples for the most part.  I finished my treatment a couple months ago and am getting that energy back.  I would not be affraid of this treatment as it has been very successful and is not considered toxic.  You can read my story for more details but you are headed in the right direction.  I wish you all the best.

 

Neil

jerijo - (2/11/2019 - 5:11pm)

Hey Butch, I also had a mole (bump--stage 2 diagnosis) develop in 2012......had surgery around area and one lymph node taken (tested cancer free).  In 2017, I had a seizure while on scaffolding while collecting quail eggs in our hatchery.  It was mistaken for an accidental fall and I recovered from crushed vertabrae.  (April 26th 2017)  My husband had actually taken a coaching job 100 miles a way to get me insurance  before the discovery of the brain lesion (thx God).  I actually accused him of  leaving me, but he told me "we're not young anymore, its not a question of if, but when something will happen to one of us) In July, I had another seizure right after husband left for summer youth camp......flown to Wichita, KS...one lesion removed from frontal left lobe and two small ones left in back beside ear (gamma knifed).  I went on keytruda, kepra, and steroids.  Eventually weined from steroids and kepra after one more seizure in November.....had a great year in 2018 on keytruda (almost no side effects).  Kept one pin head sized spot on lungs and liver from growing.  However, was informed that the large brain tumor had returned in November of 2018 with choices of surgery again (no) gamma knife (yes, and it burnt it back) and put on Brafovi and Mektovi combination chemo pills.  Was ok for 6 weeks, but started to sleep and feel groggy by midafternoon.  Shorter story......son & husband take me to Oncologist and I'm put in hospital to MRI and discuss alternatives.......I have now chosen no surgery, chemo, pills (severe fatigue from the chemo combination) mri's, ct scans.  My husband (38 yrs and devastated) is my caretaker with loving support from his school and staff.........I now have been given 8 weeks or less and am happy and thankful for the 7 years of survival past dignosis.  My husband was pouting around and after a good butt chewing is doing better.........Thanks be to my heavenly  father.......Jesus, we still pray for a miracle---Dont Give Up