We've made it back from NYU where I have been accepted to start the SGN-35 trial next Thurs. Back to NYC next week.
Today I'm getting my stent placed at DHMC to keep my ureter open and my kidneys from feeling, but I'm excited. My trip to NYC gave me a lot of hope. SGN-35 was approved by the FDA last week and will come to market Sept. 1. While the red tape is being processed, I'm on a trial that always patients to access medications that are in the process of approval by the FDA.
This trial opened up at noon yesterday.
My appointment was at 1:30.
Things just seem to be falling into place, even though Dr. O'Connor actually got around to see me at 3pm. Yes, refractory hodger's everywhere. I've joined the ranks in so many ways.
He blushed when I told him he was famous among patients on the internet and highly recommended. I could have gotten the SGN-35 as early as Mon, but I need some time. Everything is falling into place so fast. In all my years as a patient I have never had anything flow so well.
As a perk of treatment in NYC every three weeks I'll get to bond with my college buds. I was able to see 6 of them Weds! But even better, once it's FDA approved and available, I can get SGN-35 at Dartmouth!! Close to home.
Our prayers have been heard. SGN-35 has a 75% success rate! Keep praying though. I've hardly dipped my big toe in this treatment.
Today I'm getting my stent placed at DHMC to keep my ureter open and my kidneys from feeling, but I'm excited. My trip to NYC gave me a lot of hope. SGN-35 was approved by the FDA last week and will come to market Sept. 1. While the red tape is being processed, I'm on a trial that always patients to access medications that are in the process of approval by the FDA.
This trial opened up at noon yesterday.
My appointment was at 1:30.
Things just seem to be falling into place, even though Dr. O'Connor actually got around to see me at 3pm. Yes, refractory hodger's everywhere. I've joined the ranks in so many ways.
He blushed when I told him he was famous among patients on the internet and highly recommended. I could have gotten the SGN-35 as early as Mon, but I need some time. Everything is falling into place so fast. In all my years as a patient I have never had anything flow so well.
As a perk of treatment in NYC every three weeks I'll get to bond with my college buds. I was able to see 6 of them Weds! But even better, once it's FDA approved and available, I can get SGN-35 at Dartmouth!! Close to home.
Our prayers have been heard. SGN-35 has a 75% success rate! Keep praying though. I've hardly dipped my big toe in this treatment.
10 comments:
Hi, I was just wondering if you have ever looked up the cure for what you have?
I send my love and wellness to you.
You can find a lot of alternatives out there.
There are also amazing things happening with cancer research at UPenn-specifically blood cancers like yours(you may have seen it on the news in the last few days):
http://abcnews.go.com/Health/breakthrough-cancer-docs-abuzz-lymphoma-treatment/story?id=14283544
Something to think about (UPenn isn't too far, any way :-)
Keep fighting-the cure is out there!
We believe you can kick this once again! You have such a great attitude and that most certainly helps. Everyday they are finding new ways to fight this horrible disease.
This is wonderful news! I am so happy for you and your family. Keep on keepin' on!!!
Carol
SOOOO happy you found this trial. You are always in my thoughts. We have not met but I follow your blog all the time. Keep fighting -I know you can
Great and hopeful news about lymphoma treatment coming out just this week.
YAY!!!!!!!
~Devon :)
You're going to be in NYC? We HAVE to see each other... I miss you so much Hil, really. I'll message you my number on FB.
-Tanisha
Hillary- SGN 35 was working for my Chris- in fact his pet scan showed "clear" after he had had his first round of treatments in Houston with it - they were all so excited as were we.... he did have joint pain
I am not sure what happened with my Chris- they said H1N1 ( I don't think that was the case it was never proved but something other than the cancer took him.... his lungs were like leather apparently and that could have been from all the chemo/ radiation and treatment he had in such a very short space of time- and they did bombard him he had ICE every 10 days not the 3 weeks and had the two stem cell trasplant within 5 weeks of one another ....
I just don't know what happened and I never will all the one Dr. told me was that "this time they weren't dealing with the cancer"
but what I do know he was started his treatment for SGN 35 on September 11 by Sept 21st the lumps on his neck had disappeared, the cough had gone and by Nove 6 his scan showed all clear....... I hope for you that will be the case....... Loraine
Hillary,
I count on you as the best patient and health care reform advocate I have ever met. I shared a bit of your story with friends in my very late (OK July) Christmas letter and one friend said in reference to it that he had gone to a "town meeting" where a couple talked about the devastating financial effects of serious illness on their middle class family and he was shocked by the callousness toward them of the politician (Joe Pitts) and people in the audience. Keep on fighting for you so you can keep fighting for all of us!
hillary,
glad you are giving Dr O a try. We love him. just a warning though- 3pm is early for O :)
wish you the best
darlene
bekah's mom
Post a Comment