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December 2, 2013 at 3:11 am #21691supermansingsParticipant
New to this forum, though Catherine may have helped save or prolong my wife Tobi’s life.
My wife Tobi was diagnosed with a nodular amelanotic melanoma to her anterior chest wall 5 years ago. Wide local excision and sentinal nodes were clear. We have been doing well with close surveillance for 5 years. Given the VERY atypical presentation and appearance of her cancer, any little bump that pops up gets biopsied unless it fades super quickly. Well, this past May, she noted a small nodular bump on her right anterior shoulder. She immediately had a bad feeling about it, though I was ambivalent. It looked much like a very benign “nothing”. When it hadn’t faded in a couple of weeks, we had a biopsy performed and horribly, the same exact pathology returned, though after a consult with the CC dermpath, they are now calling it primary dermal melanoma. Super rare, only described in the literature starting in 2004 or so. We thought we were in for another procedure and then more years of fear, but the surgeon sent us for a PET scan (why oh why had we never gotten one before???) and she lit up like a christmas tree. Numerous mets to multiple levels on her spine and ribcage, one in her lung and (maybe) one in her thyroid. HEr disease rapidly became one of stayin ahead of her pain, which was tough. Once we radiated one, and the pain improved, a new one would rear it’s head and we’d be down again. She spent the better part of the summer bedbound with pain and super sleepy from all the narcotics we were having to give her.
SHe was given ipi at University of Louisville, but though her side effects were minimal, so was her response. The tumor on her shoulder went from the size of a pimple to the size of a large red rape, and her pain continued to be a problem.
It was at this point that I really began researching the cutting edge stuff and discovered PD-1. I came across this site, and Catherine called me personally within an hour of my inquiry. She sent me a list of all of the merck PD-1 locations and I got to work. I sent a blast email to every oncologist in the country attached to the trial. I quickly learned that the trial closed on the upcoming friday. I think this was Monday or Tuesday> Vanderbilt would have been our closest location, but they said they were full and couldn’t help. An amazing research nurse Victoria ant UNC Chapel-Hill got with me and we got to work on getting Tobi consented for her trial. We managed to consent her via conference call and fax before ever meeting in person at 4:59 PM on Friday. The trial closed at 5. This is how my wife became that last person internationally enrolled in the Merck PD-1 trial.
We went and had more scans with them and Tobi was found to qualify officially. Thankfully she was randomized to PD-1, though high dose and low dose arms are apparently randomized. She had a biopsy required by the drug company and got her first infusion. She is now midway between her second and third dose.
I know what you are asking is, “Is it working??”
I’m so stoked to report that when I had to remove her stitch at the 10 day point after her first infusion, that the suture was floating in entirely normal skin. At this point the tumor is now mostly flat and about the size of an eraser head, down from the great big nasty grape that it was a few short weeks ago. Also, a tumor on her 8th rib started screaming at her a day or so after the first infusion, and for the first time, this pain vanished without radiation. We could not be happier or more optimistic.
I know that thos could all be taken away from me sooner than I would like, but Tobi is out of bed, she celebrated her 40th birthday ad is able to be the mother to our two teenage girls that she has always been in the past. 2013 has sucked beyond my wildest dreams, but 2014 is starting to look up.
I am praying that this drug makes it to the market ASAP, as I want as many people as possible to get a chance to have it.
Be well everybody.January 4, 2014 at 10:23 pm #63094Catherine PooleKeymaster
Hi, just wondering how your wife is doing?
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