Karen wife of Phil

Deb, I've been watching here and your blog to see what the results were. I am so sorry the news wasn't good. You are so right when you say "Cancer Sucks." I doubt anyone on the board would disagree. And with this particular one we are given such thin threads of hope to hang on to. We have been working with the Providence Eastside Oncology since we started this so have been particularly interested in your progress since you are at St. Vincent. Our news hasn't been positive either. Nothing we have tried has worked although Phil was diagnosed at Stage 4 in Septmeber of 2008 and is still here…so that's something. My heart goes out to you as it does to all on this board as we make this dreaded journey together. All we all can do is hold hands and fight the monster together. You and Bob will be in my thoughts.

Deb, I've been watching here and your blog to see what the results were. I am so sorry the news wasn't good. You are so right when you say "Cancer Sucks." I doubt anyone on the board would disagree. And with this particular one we are given such thin threads of hope to hang on to. We have been working with the Providence Eastside Oncology since we started this so have been particularly interested in your progress since you are at St. Vincent. Our news hasn't been positive either. Nothing we have tried has worked although Phil was diagnosed at Stage 4 in Septmeber of 2008 and is still here…so that's something. My heart goes out to you as it does to all on this board as we make this dreaded journey together. All we all can do is hold hands and fight the monster together. You and Bob will be in my thoughts.

Thanks for posting this link. Phil did Ipi w/o vaccine last fall but doesn't appear to be a responder. We are waiting to hear if he is positive for the B-RAF mutation. If he isn't I am going to take this article to discuss with his onc to see if he can also get the vaccine to maybe give the Ipi a hand. We shall see. But thanks for the info.

Thanks for posting this link. Phil did Ipi w/o vaccine last fall but doesn't appear to be a responder. We are waiting to hear if he is positive for the B-RAF mutation. If he isn't I am going to take this article to discuss with his onc to see if he can also get the vaccine to maybe give the Ipi a hand. We shall see. But thanks for the info.

I'm Phil's wife and thought I would chime in here. At this point we are waiting to see if he does have the BRAF mutation. If he does he will be doing that treatment. I need to check with the doc to see if that is going to be a BRAF/MEK. If he doesn't get to participate in that trial, I believe more surgery is on the horizon to remove tumors that are causing much of the pain…both in his back due to the almost 8cm. tumor in the lower lobe of his right lung, and tumors that are in his intestinal tract. The upside of all this is that Providence Cancer Center in Portland, Oregon has a Melanoma research arm so we are definitely in good hands. We not only get the care from our Onc. but from the reseach nurse that does a wonderful job explaining everything to us. Everything I have brought up that I have read about on the board, whether it's treatments, symptoms, side effects, etc., they are compelely knowledgeable about and can address. We have told them about this board and they have recommended to other patients. So we are totally confident in what they are doing for Phil. We also realize that as hard as this has been, we have seen so much worse for other members on this site, and I have shed many tears for them, and done happy dances for the successes.  We are grateful for all on here who share their stories, their sorrows and their victories. It really have been a great help to us. Thanks to you all.

Karen

I'm Phil's wife and thought I would chime in here. At this point we are waiting to see if he does have the BRAF mutation. If he does he will be doing that treatment. I need to check with the doc to see if that is going to be a BRAF/MEK. If he doesn't get to participate in that trial, I believe more surgery is on the horizon to remove tumors that are causing much of the pain…both in his back due to the almost 8cm. tumor in the lower lobe of his right lung, and tumors that are in his intestinal tract. The upside of all this is that Providence Cancer Center in Portland, Oregon has a Melanoma research arm so we are definitely in good hands. We not only get the care from our Onc. but from the reseach nurse that does a wonderful job explaining everything to us. Everything I have brought up that I have read about on the board, whether it's treatments, symptoms, side effects, etc., they are compelely knowledgeable about and can address. We have told them about this board and they have recommended to other patients. So we are totally confident in what they are doing for Phil. We also realize that as hard as this has been, we have seen so much worse for other members on this site, and I have shed many tears for them, and done happy dances for the successes.  We are grateful for all on here who share their stories, their sorrows and their victories. It really have been a great help to us. Thanks to you all.

Karen