Would appreciate perspective

Over 2 years ago when I was diagnosed I had Kaiser. I had been a patient of Kaiser for around 10 years. I was SO thankful to find this board and talk to friends of friends that told me to see a melanoma specialist. I was lucky enough that diagnosis time was also the time of year that I could sign up for different insurance. I have been at UCSF ever since and have had nothing but top notch amazing experiences there. Now that I am NED and I don't have to go up to SF all the time, I really miss everyone. It was a very different experience for me at Kaiser compared to UCSF and I feel that was the best choice I could have ever made.

I would recommend at least talking with one of the Melanoma oncologists at UCSF and getting their opinion on the current treatment plan your husband is on and asking them what they would do if they don't feel the Kaiser plan is the best one. 

You can read my entire (warning, it's long) history in my profile. 

Best,

Hello. I’m almost positive that everyone here will say you need a melanoma specialist, so I wanted to chime in that my mother’s Oncologist is not. He deals with all cancer and we see him in a smaller city in Utah. He is however connected with the cancer center in Salt Lake and is a Principal Investigator of the trial study my mom is in for this area. The study is for all types of cancer.

Long story short, my mom loves him. I love him. He’s brilliant and kind. So caring. Had we gone in there first visit and had concluded he wasn’t up to date with the melanoma world, we would have gone somewhere else. I ask him every question in the book and of every treatment I’ve learned through research and from Celeste and others on this board, for backup options. He gives me all the answers. He speaks all over the country, and even overseas. My point is, a Doctor doesn’t have to be a “specialist” to be your miracle worker. Best Wishes!

Hi vp,

Sorry for all that you and your husband have been dealing with!!  And, yes.  I usually say see a melanoma specialist!!!  However, anybody can learn anything if they want to.  So…given that the current melanoma treatments are the BEST treatments that melanoma patients have ever seen…regular oncologists can and SHOULD learn what they are and how to treat folks with them!!!  They have been approved since around 2011, collectively, so they've certainly had time.  Therefore, if your doc is up to date on these treatments, had cogent reasons for how he/she recommends you proceed…that sounds perfect!  

In regard to the plan your doc has.  Ipi/nivo has a better response rate…but it also has a greater side effect profile given the bad boy ipi.  If he were saying do ipi, then nivo…I'd have a problem.  However, his current plan sounds reasonable to me.  Here's why: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/sequential-nivo-then-ipi-orr-of-41-ipi.html  

As to trials…they are amazing.  The one I was in saved my life.  However, currently in melanoma care…if you have not yet tried the top line melanoma treatment options…they make more sense (at least to me) than current trial options.  Until better treatments are found…the current FDA approved options are the best we have.

Hang in there.  I wish you and your husband my best.  Celeste

Honestly, it sounds like your doc is doing what is pretty standard taking into account your husband's age.  Give him a chance on the currently up to date drug with the lesser side effects but know that the combo could be better.  I'd say the only thing right now is you could push for the combo because it does have better efficacy rates in addition to side effects.  That's if you want to do more immediately.  Where I'd start looking elsewhere is if either Nivo or the combo was not working.  Then I'd definitely be looking for someone with access to clinical trials and other options because Kaiser isn't going to be able to keep up with the other specialty centers when it comes to something that is not FDA approved.   I'm stage I myself but cared for my father who was diagnosed in his early 80's and had definite opinions about what options he wanted to try and not.  As recent as 5 or 6  years ago, he didn't have the options your husband has available and he chose no treatment.  If there had been an easily tolerated option, I might have pushed him toward something like Nivo.  If at any time you feel you are not getting the absolutely best care, SPEAK UP!  Good luck!