UPDATE on Randy...It's been a while.

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8/19/2014 6:24am
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Sorry i havn't posted in a long while.  Randy is still on the Mk-3475 trial at 10mg and it still doing well.  He had an issue with an adrenal insufficiency from the treatment which he now has to take replacement hydrocortisone every day, as well as had a pnuemonia and was hospitalized for both these conditions until they were discovered and controlled.  

For those of you who don't know about my boyfriend randys case, he was diagnosed march 9th 2012 stage 4 right off the bat.  No primary.  Brain, liver, lungs.  He had a craniotomy followed by WBR, and Yervoy.  The radition did great on the brain mets, and the yervoy kept the tumors stable for about three months, when they started growing again.  He had a small bowel obstruction which eventually required surgery.  During the time before surgery he lost a lot of weight, was really weak, had lost about 30lbs. After this surgery, and discharge we got a new oncologist who was more informed about melanoma.  He pressed to star chemotherapy.  I knew from research that chemo was rarely successful in melanoma, and had been reading about a new trial for Anti-pd1, now known as Pembrolizumab(former Lambrolizumab, or anti-pd1).  I insisted we try our best to get into this trial, and not do chemo.  Luckily his oncologist knew the trial oncologist and got us an appointment.  

Long story short, randy has been on the trial since february 1st 2013, and doing well.  Some tumors gone, and one, the original size of a large breast, now the size a little bigger than a golf ball, and stable.  One under the jaw line gone.  

Living day by day.  Just wanted to give an update.

-Amanda-

 

"Give thanks in all circumstances"

Thank you for the update! It's encouraging to hear other people's journey with melanoma. I wish you and Randy the very best and I want to see the day for a complete cure of this scary disease!!

Living Life!

Hi Amanda,

thank you for your update and thank you for sharing good news. I was hoping that Randy is doing well on PD1.

I was thinking how your are doing especially since my husband started PD1 (will have his 2nd dose this Thursday). He is having some problems since the first infusion because the ear and neck area around the tumors is swollen, painful and very firm. On the other hand a 2cm met in his axillary first more than doubled in size after the infusion, and now is almost gone. Have you experienced this swelling in the beginning?

All the best to you,

Jenny