Re: Update on Ben

Hi Tom,

I can't believe it has been 3 months since you have written. I'm sure Lainy will be after you! Haha. It makes me so mad when insurance companies think they know more about what chemos you can and can't have than doctors. So frustrating. I am so happy Ben is doing well. That is wonderful news! I always love to hear when people do better than expected and shock the doctors.Way to go, Ben! Best wishes to you both and have a terrific time in Iowa.

Hugs and Happy Holidays!
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Ben

Hi Tom and Ben! So good to see your smiling face again. No wet noodles this time. What if I offered you a Pasta dinner instead if you posted more. Just kidding, we will take what we can get and your post is a great one indeed. You and your little Miracle have a nice trip and a wonderful Christmas with your family. We are getting so many wonderful Christmas posts I just hope they keep coming. I also love the way you write. Just travel safely and have a great time!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Tom me Ben,
Wonderful news.....makes me so happy for both of you....I'm Italian so I can't waste a noodle for not updating.........we love our pasta.
Hugs, Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Update on Ben

Hi Tom,

Thanks for coming by again and letting us know about Ben. And yay, great news you have to share about him as well. So chuffed to hear that he is doing so well, and of course, long may that continue! I hope that you and Ben will have a great Christmas and that you enjoy going home as well for it! First time in 3 years, I am sure that you will enjoy it!

My best wishes to you and Ben,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

Your noodle and sauce threats ain't worked so far Lainy...... time to perhaps try a massive turkey leg me thinks! After all, that is bigger and it is Christmas after all! wink

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

Tom.. considering the fact that your reading of our responses will be time delayed (three months) I have decided to continue to e-mail you personally.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on Ben

Gavin, since it is almost Christmas, forget the turkey leg, I will have to pull out the BIG guns and do a Teddy Christmas.....Calamari Marinara and Octopus salad, clams and oysters!!! One of his Granddaughters who is 24 just asked me for his recipes.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

I'm with you on the Teddy Christmas feast Lainy!!! Apart from the oysters that is, don't like the sound of them. But the calamari........yowza! And I am sure that you will show T's grand daughter how to cook that feast to perfection! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

Another 3 months has flown by and here I am.  Interesting news with this post.

Recap - my partner Ben was diagnosed with Stage IV CC in August 2010....a long journey (not surprising), but he's still hanging in there (I have a lot of history if you search on my name for those interested in details).  Ben started his 3rd round of the standard protocol of Gemcitibine and Cisplatin in October.  Even now as I type this nobody would look at Ben and think he was sick.  While he is tired a lot, he still seems to be managing on a day to day basis. 

After visiting MD Anderson in December, they recommended dropping the Cisplatin and focusing on GEM (which they called the "workhorse") to help with quality of life.  The combination was really wearing Ben out - and with the Cisplatin it would mean seven hours of Chemo and fluids, fluids for two days afterwards along with shots to increase his white blood counts.  So just doing GEM would free him up a bit more and not be so debilitating.

Shortly after Christmas Ben started feeling pain in his shoulder and arm - he thought he had pulled a muscle, etc.  Fast forward after more tests, chiropractor (Ben's idea - clearly not the oncologist's, ;-) bone scans, spinal biopsy and another trip to MD Anderson. 

Of course my first thought was "mets to the spine" which I know can happen.  The biopsy seemed to indicate something but not Cholangio.

So - off to MD Anderson last week, (and now this week).  Long story short - it turns out Ben also has Lymphoma!  Wow - two cancers for the price of one! 

Unfortunately I couldn't make the trip this week - but Ben's brother met him in Houston and  I was able to Facetime (video conference) during the doctors visits - which was awesome.  T

The Lymphoma doctor (Luis Fayad - amazing) was quite amazed.  He said "you know - most people don't live so long with CC, so maybe you have had both cancers all along - and what they were seeing outside your liver was lymphoma and not CC".  Huh.

Anyway - not conclusive; they are doing more tests this week to determine the exact type of Lymphoma - they believe it's agressive, but the doctor said he thinks they can treat it.  Lymphoma has a high success rate - and our CC Oncologist at MD said he is one of the best in the business.  He said "when I'm done with you, you will need to figure out how to deal with your CC, but hopefully it's contained to your liver". 

So - there you have it - a whole quarter boiled down to a few rambling paragraphs.  Not too much to report up until today. (besides the usual cancer drama - but that's not very exciting anymore).

More to come - I'll be back soon with an update to see how it turns out.  We meet with the doctor again on Thursday (me via Facetime).  All my best to all of you.

tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Well, if it isn't Tom & Ben peeking around the corner! Good to see you guys as always. Tom, my daughters ex BF is 51 and has Lymphoma Non Hodgkins and is in his 7th year and doing quite well. I am sure no one wants a double whammy, yeesh, but there are many treatments for Lymphoma today. Tell Ben I said you signed up for 1 Cancer but 2??? Who the heck does he think he is anyway? All kidding aside, wish I could take both away from Ben. You are still my dynamic duo and this new "bump" just shows how strong you are as a team. Hoping for some better news next posting and PULEASE don't wait 3 months! Sending you all my best juju ever.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Hi Tom and Ben,

Wow, another 3 months!! I'm sorry to hear about the lymphoma, but hopefully it will be manageable. How unfair for poor Ben. I always look forward to your posts and hold my breath every time I go to read them. Not the best news this time, but hopefully cureable. My prayers to both of you and please keep us updated.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Ben

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

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.

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Hi 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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Update on Ben

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.
Willow

Willow

Re: Update on Ben

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

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 B) - 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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Astounding is right! That's great news!

Willow

Re: Update on Ben

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!

Re: Update on Ben

Tom,
Wow!  That is an amazing news!  I'm so glad you share this story and very happy for you both. 

Jeeyoung

Re: Update on Ben

Hi 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?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Great news!! My thoughts... Keep on living!! Try not to dwell on the "if" or "when"s of cc...

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.