Polymath

I was very pleased with my care at UCSF. They have a dedicated staff of melanoma specialists.
In fact I credit them for saving my life after my local oncologist had run out of options.

Maggie,

I agree the ipi/nivo combo seems appropriate unless there's a trial your onc thinks is better.  After years of being a non or partial responder I did a year on the combo, and then a big surgery that cleaned house.

I did not think I was responding either, but now 19 months post surgery I am still getting no progression.

So perhaps there is a delayed response, or help when tumor load is minimal and combo is fighting off progression at the micro level.  It's the next logical step.

Best in the battle

Hi Ken,

I'm not sure, but looking at the Goshen Center website, it looks like a private, for profit cancer center.

If so, you should look into other public university medical centers for treatment, and perhaps a reduced cost burden.

Best in the battle.

I participated in a clinical trial using the technique, called "electroporation".  When cells are exposed to electrical charge, they open up, becoming more porous, making an injected drug more effective, or so the theory goes.

Although it was unsuccessful in my case, apparently some other participants were responding. I would think that the drug used, would make a big difference.  The charge was applied directly to subcutaneous tumors.  It was painful during the shock, but no lingering pain afterwards.

Although unsuccessful for me, and painful during the procedure, it may be worth a try for those candidates who qualify for treatment.

Gary

This blog literally saved my life.  It was here I gained the insight to seek out a specialist, and became educated so I could be my own advocate.

Clearly, as much as any doctor has helped me, Celeste has done just as much, and for so many.

Awesomeness personified. Mahalo Celeste

FAN-tastic!!  Way to go Jen.  Life truly does go on.

Thanks Mark for your good wishes. Yes, you remember well and I am very happy you are still here as well. Making progress I hope!
I’ll try and check in more often. I just needed to step away for a while after having this consume me for those years.

Hi TP,
First, your husband is young and strong, do not even think of giving up. I’ve been quiet on this board for some time, but for four years I battled non-stop progression and we threw everything in the book at this monster. The people on this board were an amazing source of info and support. Those pills may be Zelboraf. I had to go to a very specialized pharmacy to get mine. Although I had some bad side-effects, they worked magic on immediately reducing tumor load. That’s the key to let immunotherapy do it’s work. It was not until I did the ipi /nivo combo that we felt we had found something that was working, but it took a surgery too, removing my spleen which was fully engulfed to end the cycle. Once my tumor load had been reduced, we feel the immunotherapy really had a chance to work. Hang in there, it’s a tough battle but here I am, 4-years in a stable remission and although I live in Hawaii, I drove through Montana just last month. You just never know where fate will lead you.

Hi Maggie,  Everyone has been surprised by this, including my doctors.  My GP told me recently that at one point, he doubted I would be back for my next appoinment.

I have been progression-free, and off all meds since the surgery in December 2016.  

Thought about removing my port, but my specilist says "don't jinx it".