It's really hard to write this but I'm off the trial. My main lesion (in my retrocrural area) has gotten much bigger, from 1.8 cm x 1.1 cm to 4.7 cm x 1.7 cm. While the other lesions are essentially the same, the major growth in my "spot" is enough to constitute 50%+ growth from the lowest point of my disease (or nadir).
I have to say, I didn't see this coming and think I let my guard down a bit, big mistake. I'm kinda writing this in a state of shock - almost outer body experience - but starting to feel a little better as the anti anxiety meds are kicking in. It's going to take a little while to regroup once this really settles in...
It's just so hard to start over, ugh... I have to find something that's enrolling now (hopefully at someplace I'm familiar with). I'll be contacting doctors and consulting with my Hodge forum friends for advice as to what to do next.
I'm basically walking into the unknown again with no guarantees I'm going to be able to find my way out. The unknown is always the scariest thing.
Once I get over this disappointment, I'll gather my strength and move forward the best that I can.
The most important thing I think is to just try and keep my head up and keep the faith. It's not like I haven't been through this kind of thing before right?
I will never again let outside stress into my life. No matter what happens, I need to stay on an even keel and solely focus on enjoying every minute of this life the best that I can.
This is a sad day. However, I know I will bounce back.
Sorry for the bad news,
Chris
8 comments:
Hi Chris,
I am sorry you did not get the results that we all hoped for. I completely understand how you are feeling....it is so difficult to hear our tests did not show what we expected. Please try to stay positive....there is ALWAYS HOPE I truly beleive that!! I believe you will find a treatment that will work!!!
This is just another bump in the road and you will get over it! You are a fighter and through it all you live an amazing life!!! Stay Strong...BETTER DAYS ARE AHEAD!!! You need to get back to the sun and warm air and you will figure this all out.
Stay Strong!!!
Donna
Chris,
You will bounce back. We're all sorry with you.
ugh... i'm sorry. just because you've had bad news before doesn't mean it's any easier. try to remember that you actually feel good, instead of letting the news make you feel bad physically. we're big advocates of bendamustine. if you need any tips, advice, etc. regarding getting it approved through insurance, please let us help. sending lots of thoughts and prayers up for you tonight. i don't even know you personally, but i can tell you're an awesome person!
oh chris I know this must be heartbreaking news for you but remember there are options and treatments no matter where you are in your HL journey. Your deep in my thoughts sending you lots of healing good thoughts, I know that does not sound like much but I promise you I wont allow you to slip from my good thoughts. people out there love you remember that even thought the news might be dark there is lots of love and light out there for you to give you strength to stand up and fight again!!
Chris
so sorry to read the sad news.....
thinking about you and praying for your continued peace, happiness and strength...
Trust in the LORD with all your heart, and do not lean on your own understanding.
your friend in the D
Hi Cris
Maybe you could consider MOPP retreatment. There is a study which suggests that MOPP retreatmet for patients with relapsed/refractory hodge (after initial ABVD failure) gives 60% remission rate. Ofcourse, the study considers first relapse after more than 1 year past initial ABVD treatment.
Anyway, i'm on that right now and I feel relatively good.
My cancer came back too. . . . all over my stomach. If life were fair, or made sense, this would make you feel better, but life isn't fair and it doesn't make sense, so I know this won't. Facing a new type of treatment is the scariest part of fighting, I'm right along with you, what I like are therapies that have been approved for decades in other countries, say India or Germany, but have only been available a few years or by trial in the US. Bendamustine is one of these. It's what I've just started. The Reeds recommended it to you, Bekah liked it too.
I know this kind of news is hard and never familiar enough to get used to. I'm just writing this message so you know, there are people out there who share your pain. I hope things change for the better for you Chris, that's all I can say.
Trevor~aka Rovert from Webmagic
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