Recurrent after 12 years, stage 4

Melanoma treatment – and therefore outcomes – have changed a great deal since 2011.  It is not the death sentence it once was.   Here is a primer I put together regarding melanoma treatments that you may find helpful:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  The most durable treatment with the greatest response rate currently is immunotherapy in the form of the ipi/nivo (Yervoy/Opdivo) combo.  However, targeted therapy (in the form of a BRAF inhibitor with a MEK inhibitor) can rapidly decrease tumor burden for most patients who are BRAF positive (about 1/2 of melanoma patients).  Surgery and/or radiation can also be a way to diminish tumor burden – and therefore aid the response to immunotherapy.

For all that this is a miserable and scary time, tell your dad that planning his funeral just now may be a bit premature!!!  I was diagnosed with Stage IIIB melanoma (cutaneous lesion and positive lymph nodes) in 2003.  As there were no effective therapies at that time, much like your dad – I watched and waited.  I advanced to Stage IV melanoma with brain and lung mets in 2010.  However, after participation in a nivolumab (Opdivo) trial {the opdivo/yervoy combo is more effective than opdivo alone} phase 1 trial – I remain NED for melanoma to this day!!!  So – there is hope.

Be sure your dad is seeing a melanoma specialist – or at least an oncologist who has treated many melanoma patients.  Ask more questions as you have the need.  This forum is filled with many smart, caring melanoma peeps.

I wish you both my best.  Celeste

I’m sorry you’ve had to come back to visit the board under these circumstances. I was diagnosed with stage III in 2014 and that was a whirlwind of emotion. As the years passed I thought I was in the clear and started not to worry about melanoma anymore. Earlier this year I started to not feel good with symptoms similar to a stomach bug. I knew something was wrong. I could tell something changed in my body but it seemed to happen overnight. It got to the point that I was miserable and went to the ER. An ultrasound confirmed lesions in my liver and spleen. After a visit with my oncologist, he order a pet scan which confirmed mets to the liver and spleen as well as bones and abdomen. Like your dad I initially lost hope, primarily because I felt awful and I couldn’t wrap my head around a stage IV diagnosis or the possibility of feeling better with as much cancer as I had in my body. I was ready to give up. I started ipi/nivo on May 31st and the symptoms started to get better the first month. Unfortunately after the second comb dose I experienced a tremendous amount of side effects, but was able to push through and continue all four doses. Now I’m on maintenance infusions and it is much easier and tolerable. Here I am 7 months later and still trucking along. I’m thankful these medications are available because without them my prognosis would be far worse. I can tell you this hasn’t been easy. I’ve had good days and really really bad days but I have no regrets and wouldn’t change a thing. I’m feeling better today than I did 7 months ago and am very grateful. Please tell your dad not to give up just yet. There’s still some hope to look forward to.

I’m sorry your having to revisit the board. I was diagnosed with stage 3a in 2014, which was a whirlwind for me. As the years passed, I didn’t think about melanoma much and thought I was in the clear until May of this year when I was diagnosed with stage 4. I had symptoms similar to a stomach flu, but I knew something was wrong and it was more than that. I went to the ER where an ultrasound was done and confirmed lesions in my liver and spleen. Long story short, I saw my oncologist, had a pet scan done which also showed cancer in my bones and abdomen. I was absolutely miserable with nausea and abdominal pain and was ready to give up. I started immunotherapy (ipi/nivo) on May 31st and within just a few weeks I started to feel better. Second infusion I started having a lot of side effects from the immunotherapy, which was unpleasant, but my oncologist let me continue and I was able to finish the four combo doses. Now I’m on maintenance doses, which is much easier to tolerate. At this point my only symptoms due to side effects are mild fatigue and joint pain, although everyone has a different experience. This is not easy for some folks, but worth it in my opinion. I feel better today than I did before starting the treatment. I’ve had one PET scan since starting treatment that showed an overall decrease in the cancer, but I have a long way to go. I’ve learned to try to be patient and remain positive which is hard some days, buts it’s doable.  I’m very thankful and grateful that immunotherapy is even option vs the alternative. Hang in there. I’m keeping both you and your husband in my thoughts and prayers. Hugs to both.

-Rocco