Update on Ben
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Tom……This is beyond wonderful news to share with us. Cholangiocarcinoma in remission – it feels good and sounds great. Add the defeated Lymphoma and this is one of the most exciting success stories yet. Congratulations to you both. The remodel to your home could not have come at a better time – enjoy.
Hugs,
MarionHi Tom and Ben….WOW….We cry all the time for sad things but right now I am crying such HAPPY tears. I am so very happy for you both. I know Ben has fought hard and he can now enjoy his reward. Tom, I am tossing all my wet noodles! You both just enjoy this ‘remission’ time for another trip?
Tom,
Wow! That is an amazing news! I’m so glad you share this story and very happy for you both.Jeeyoung
That’s an amazing story. I have a little collection of CC success stories and Ben is definitely on my list. Best wishes to you both!
Ben 2 – Cancer 0
Probably should be posting this in the good news section – but I like the continuity on this post.
I realize not everyone is familiar with my partner’s Ben situation so I will try to recap as briefly as possible:
1) August 2010 – diagnosed with intrahepatic Stage IV CC. Standard prognosis of 6-18 months to live.
2) On and off chemotherapy with the GEM/CIS protocol – no severe side effects, but has had the usual rollercoaster ride of hospitalizations, pain – one surgery to bypass CC at the end of his stomach.
3) Was to restart chemo in January of 2013 and was diagnosed with Lymphoma (large type
– curable, but WTF? CC chemo was stopped to target Lymphoma.The big news – Ben just finished the standard protocol chemotherapy for his Lymphoma, had a PET scan last Monday and we received the results Friday. No lymphoma is present. So – Ben has kicked the Lymphoma.
The PET scan didn’t show anything in the liver either – although CC never showed up well on PET scans – but they don’t see anything at this point. Given he has been through so much chemo – and they don’t see anything, Ben is considered in kind of “remission”.
The doctors are kind of amazed – still currently you would not know by looking at him that Ben has been battling cancer for 3 years – and kicked it’s butt twice!
Who knows what tomorrow will bring, I’m pragmatic enough to know that CC is likely lurking around – but right now it seems to be kicked into a deep dark hole….
That’s the news for now – its pretty astounding.
Tom
Great to hear from you again Tom and thanks for letting us know how Ben is getting on. And for sure, you never know what will happen and I like what you say about hanging in there and living your life. Hope that all goes well with the house and looking forward to your next update. Stay strong.
My best to you and Ben,
Gavin
Wow, that’s wonderful and inspiring..and an honest look at life, living and following through with plans and dreams into the future. Thank you for sharing Bens story.
WillowHi Tom,
I think that Ben is like me…bad things happen, but it seems to work out in the end. It’s like a proverbial bad news/good news scenario on a 5 year schedule for me. I think both Ben and I should be done with this roller coaster!
Glad to hear the good news and I hope that the good news continues to roll in. Good luck with the renovations, that brings its own stress.
Here’s to living life and hope!
-Randi-Hello, Tom….no wet noodles today, I just ate them with Marinara. I think you picked the right Partner, he has some kind of awesome Magic and the right ONCs. What IF, just what if, his Chemo held both Cancers at Bay..that would be awesome. What fun to redo a house! That should keep Ben pretty busy. BTW I made too much pasta as usual so froze some, so don’t think you will escape being naughty. JK Wishing you both the best on C and House.
So, it’s been a while again since I’ve posted. I was on the other day but after the news of Lauren, I wasn’t in the mood to post.
Ben continues on his journey with Lymphoma – he’s settled into his new chemo regimen – and has finished 5 of the 6 recommended rounds for this protocol.
After three rounds – he had a PET scan and the scan didn’t detect any lymphoma. WOW!? Really? We were quite surprised and I think our oncologist was as well. While Ben does have a curable (although agressive) form of Lymphoma, I don’t think any of us were expecting it to undetectable after 3 rounds of chemo. (two weeks on, one week off).
Ben is contiuning with chemo, as we all know that with any cancer not everything is detectable through a scan, so they will continue the standard protocol. We are going to visit MD Anderson again after his sixth round – they may decide to do two additional rounds of chemo just to ensure the Lymphoma is gone for good.
No sign of the CC rearing it’s ugly head right now. Ben seems to endure this chemo pretty well. We recently moved out of our house to do some major renovations. We had been planning before he got sick, but now it’s been so long we decided just to go forward. Ben is kind of making it all happen – which is truly amazing.
In August it will be three years since Ben was diagnosed with Stage IV, Intrahapetic CC. Despite all the sadness and prognosis….you just never know what will happen. You just have to hang in there, live your life and hope.
tom
Dear Tom & Ben, I am glad someone listens to my idle threats! As usual it is good to see you guys but while the CC appears stable I don’t like its new partner. My daughter’s Boyfriend, who is 53 was DX 10 years ago with Lymphoma and he is doing fine but then he is contending with 1 Cancer not 2. I think Ben will show CC & L that he is someone to be reckoned with as he is a fighter and seems to do well with the Chemos. Please tell Ben how sorry I am to read about his dog. I’m thinking he might need another doggie. Many thanks for the update, so glad I didn’t need to toss some nodles your way!
Hello everyone, I thought I better not go another three months before an update – thus incurring the wrath of the wet noodle from Lainy. I guess 6 weeks isn’t so bad (for me).
Actually there isn’t too much to report (luckily). As I said in my last post – Ben was diagnosed with a very agressive form of Lymphoma – so the chemo treatment has now changed to address that (he has a curable form; “type B”). The standard protocol is six cycles (one day of chemo, the next week a “lumbar puncture” of chemo in his spine, then week three off). Ben has completed two full cycles of the chemo – and this is the start of cycle 3.
Ben continues to tolerate chemotherapy pretty well – he rarely gets nausea or sick…just really tired. At this point we are still hoping that the CC cancer is just sitting there bored…..our fear is that it will start growing again since his current chemo regimen isn’t known to fight CC – so it’s kind of a “wait and see” game, but so far it’s not showing any signs.
Unfortunately, our dog of 15 years (our beloved dalmation named Zack) died this week – definitely a mental setback for both of us….he has been Ben’s companion through this journey day in and day out – and since Ben is home alone so much I’m a little worried how it will effect him – so will try to keep him occupied with our friends.
Anyway – just wanted to check in – as I said, nothing too dramatic to discuss which of course on this board is GOOD NEWS!
Take care everyone.
Hi Tom,
Great to see you round here again and thanks for Ben’s latest update. Sorry to hear about the lymphoma, major grrrr to that news. My fingers are crossed for Ben that the test results come back as best as possible and that the Lymph doc can treat this. Tons of positive thoughts coming your way from me and hope to hear from you again before 3 months next time!!
Best wishes to you and Ben,
Gavin
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