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Hi Studiodad, welcome to the forum and the melanoma world. I am not sure that I agree with your statement about “reduce my quality of life while offering little hope that longevity” . Immunotherapy and in your case a Pd-1 drug like pembro or nivo has shown great results at keeping melanoma from coming back and the # of patients that experience serious side effects is quite low. There is risk, but pretty small to treatment and for most side effects they are quickly and easily controlled with steroids. Here is a pretty good conversation by a group of leading oncologist talking about how they handle stage 3 melanoma patients. good luck with your decision making process!!! Ed https://www.youtube.com/watch?v=nD65VIIRezE

Hello StudioDad, first off, i second Ed Williams, he explained that topline Immunal Therapies today have a VERY GREAT tolerance rate, Keytruda, Opdivo and Yervoy to name a few, alot of us here including me, have used or “still are” using these fine therapies of the Melanoma War and have had little to No major problems, get your infusion then go home!! Relax for that day, go to sleep, next day your on having that Quality of Life your wanting to continue, “IF” minor, MINOR side effects arrise, your team will deal with them accordingly, thyroid, cortisol levels, mild rash, headaches here & there its easy breasy StudioDad! Please consider Immunal therapy, dont be nervous, after your first few infusions you will thank us! Its not Chemotherapy! Apples & Oranges! Easy Breasy Nice & Easy….keep us posted ok? Get this ball rolling for your kids..

Hey Studiodad,
I was diagnosed 3C in May and started Nivo in June. Other than being tired and some shoulder/back pain, I don’t find my quality of life to be to much different. I weighed both options as you are doing now. To me, being there for my wife, kids, grandkids and family was worth the side effects. Also, I feel as if I’m doing something…. I didn’t want to feel helpless. To me, the wait and see approach would make me feel helpless..

Good luck with either decision you decide on.

Bruce

I looked at your profile, Studio Dad. I am hoping that your colon lesion and what I presume is a superficial skin lesion on your scapula are negative for melanoma. If they aren’t, then yes, you will be a Stage IV melanoma patient. Either way – Stage IIIB or Stage IV – and whether treatment is rendered as adjuvant therapy (treatment provided when tumors have been removed via radiation or surgery) or for active disease – we have learned that targeted therapy (therapy that only works for melanoma patients whose tumors are BRAF positive) and immunotherapy WORK!!!! The pharmaceutical companies are not the ones who proved that! We melanoma ratties are!!!! Can those treatments be difficult? YES. Do they work for everyone? Unfortunately, no. Is the range of durable response (the length of time positive results are retained) variable? Yes. However, the data is very, very clear. Side effects are manageable if you are being seen by an oncologist who is familiar with those therapies. Positive responses and life span post treatment are far and away better with treatment than for those who are given placebo in valid studies. Melanoma treatment has come a long way since my own Stage IIIB diagnosis in 2003, when I was relegated to simply having lesions and affected lymph nodes removed. And, yes. With no treatment (because it didn’t exist!!!!) I progressed to Stage IV in 2010. After having the upper lobe of one lung removed due to melanoma and a brain met zapped, I was lucky to get a place in an anti-PD-1 immunotherapy trial with Opdivo. I took the drug for 2 1/2 years. I did deal with fatigue, rashes, mouth ulcers, joint pain, and wheezing. But, I also continued my work of 12 hours shifts three times a week, missing only 3 days in those years. MORE IMPORTANTLY, I remain NED (having no evidence of disease from melanoma) to this day!!! Clearly, melanoma treatment choices are intensely personally. However, I refuse to give my life to melanoma until it takes my life!!! Here is a “primer” I put together on melanoma therapies that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html The world of melanoma treatment has radically changed since 2011 when these therapies began to gain FDA approval. Melanoma ratties are surviving and thriving than ever before. I hope this helps and I wish you my best. Ask more questions as you have the need. Celeste

I understand completely what you are feeling. I was diagnosed Stage 4 with mets in liver, lungs, adrenal, lymph and bone in 2015 when I was 64. I am widowed, no kids or close family. I too had to evaluate whether or not I wanted treatment. Conventional chemo I was told would give me 12 – 13 months. I already knew I didn’t want that. But I was fortunate that I was eligible in to a phase 3 trial of yervoy/opdivo combo followed by opdivo every 2 weeks.

My thoughts were I could go with the trial and if I didn’t like how it was going I would just quit.

The biggest side effect I had for most of the trial was fatigue. I was able to keep working until I retired in Jan 2018. The biggest issue I had was skin lesions and having to take prednisone. It was almost a full year of varying dosages and varying side effects. At that time in Oct of 2017 I was NED. My Oncologist said that taking the steroids and continuing the immunotherapy was not a good option. So I stopped the opdivo and went on the prednisone.

Now that I have been off immuno almost 2 years I still have fatigue but not as bad. I also traded in my old Yamaha on a Harley and I have a road trip planned. Was going to go in July but weather and a couple other things not health related have me looking at after Labor Day.

I can’t tell you what to do. I don’t think anyone can. It’s a very personal choice. For myself I decided to give it a try. It’s worked out for me.

Next scan is 20 Aug with visit to onc the next day. Like most everyone here I take it one scan at a time.

You do what you think is right for you.

Best wishes

Mike