Topic: Update on Ben

It's been a while since I've posted - and luckily my last few posts have been in the "good news" section, but unfortunately this post isn't there.

Just for some background, my partner of 16 years - Ben was diagnosed with Stage IV Intrahepatic CC with mets to the omentum and surrounding lymph nodes in August 2010.  He made it through the Gem/CIS chemo quite well and finished up all 8 rounds in April.  He had about a 50-60% reduction in his primary tumor and has been feeling quite well all summer.  His last scan was at the end of August and showed everything was still "stable" with no new activity detected.

In mid-October he began having a feeling of heartburn (which he has had for several years).  He had been off his ant-acids - Prilosec for quite some time and both his Oncologist and GI doctor thought it might be that and ordered him back on Prilosec.

That seemed to improve his condition, and we headed out on a two week vacation to Europe to see friends on October 20th.  Unfortunately, once we landed he found that anything he ate made him feel extremely full (even though he was barely eating) and he started self-inducing vomiting to help improve how he felt.

We called our GI doctor and he told him to go on fluids only and head back home (which we did).  On October 28th he went in for an outpatient endoscopy to see what might be lurking, but unfortunately his stomach was so full of fluid they had to abort the procedure and drain his stomach.

The next day they did the procedure again and they couldn't find any blockages internal from the esophogus through the stomach but they have noted that the end of the stomach is mis-shapen so something could be pressing on it - or it could be a problem further down in his intestines.  They also ordered a CAT scan but the results were inconclusive (partly because he was starting to vomit during the procedure from the IV contrast and it was a bit shaky), but they said they saw enough to lead to the next step.

Tomorrow they are doing an Upper GI where they will fill him with Barium and watch through an x-ray so they can determine where they blockage is.  Not really a Happy Halloween!!

So, here I sit in the hospital room, once again researching here on the boards (I know I've been away, but sometimes it became too painful to read too much here, so I just tried to post major events).  As always, the board provides good research information and background to allow me to ask the doctors better questions, and in some cases give them examples from real patients since so few doctors have experience in this cancer.

I will say - it is a little depressing, from what I am reading these blockages are somewhat "common" and usually from tumors lurking and growing here and there, but I will wait until the doctors assessment - and meanwhile I will hope for the best!

While I'm not thrilled to be here researching again, I'm incredibly thankful for this board, my friends here and the invaluable information it provides when you need it.

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

Dear Tom, I too do not like your news this time! I rather hear about your ventures around the world! I am crossing everything I own that your news will not be bad and that a simple problem has occured and will be taken care of post haste. I would say its more like a trick than a treat. Hoping for good news!!!

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....so sorry to hear that you had to cut short your long awaited vacation.  You are taking the right position by awaiting the test results. Based on those findings the physicians will have a clear understanding on what is going on and will then recommend the next steps to be taken.  Hang in there, Tom and Ben.  A tidal wave of support is heading your way.
All my best wishes,
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

Tom,

So sorry to hear this news.  This is one of those times when you follow the 5 minute rule.....do 5 minutes, breathe, then do the next 5 minutes!

I'm sending hugs and prayers your way.  I remind you to also remember to take care of the caregiver...(that would be you!)

Please know we are always here for the both of you!

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Update on Ben

Dear Tom,
I am very sorry to hear of your bad news. I will be thinking of you and Ben and praying for the next time you post that Ben is feeling better.

-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,

I am sorry to hear Bens latest news, I much prefer reading your posts in the other section. Sorry also that you had to cut short your trip to Europe, but you did the right thing in getting home and getting Ben seen by his GI doctor. Fingers and toes are crossed here for Bens X-ray today and I am sending you both a ton of positive thoughts. You know that we are all here for you both and please let us know how everything goes.

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

Tom, haven't been introduced before now, but all my love and support to you and Ben.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Update on Ben

Hi Tom,   

I too will be hoping for the best for Ben and also for you.  Let's see if we can't get you guys back in the good news section of the board.  smile

Thinking of you both.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on Ben

Thanks everyone for your support!   With the barium X-ray and the cat scan the doctors determined that the cancer has grown and is blocking the flow from Bens stomach to his duodenum.  Just like other cases, I guess you never know where it is lurking.

After consultation with our oncologist, GI doctor and the surgeon,  decided that Ben will have surgery today (Thursday) to reroute his small intestine to bypass the blockage.  The GI doctor said its a similar procedure they do for gastric ulcers, and only a one and a half hour laparoscopic surgery with a 5-6 day hospital recovery.  Ben is healthy in all other aspects so hopefully the surgery will go well.  They said they would start him back in chemo in about a month once he fully recovers.  At least they don't see any major growth areas, this one just got in the way of the stomach.  Apparently the surgery is called, gastrojejunostomy.  My vocabulary is certainly being stretched with this nasty cancer!

I have a call into the mayo clinic too see if they would render a second opinion based on the local findings but havenet heard back.  My guess is they likely won't render an opinion without seeing him, or at least not seeing the most recent scans, X-rays, etc.  However, our local doctors seem confident and based on my own research on this board, these little battles and "rerouting" procedures are part of of the ongoing war.

On to surgery!  Take care everyone,

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

Dear Tom,

Best wishes to you and Ben. I will pray for him as he continues his battle.

-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

Dear Tom and Ben, I will be praying and hoping for Ben today as he gets rerouted! Please let us know how the surgery went and thankfully it is the only place they see and can be taken care of. Tell Ben I said he strives for too much attention! Hugs to you both.

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

you both will certainly be in my thoughts and prayers today and in the coming days.

Re: Update on Ben

Hi Tom,

I'm sorry to hear this news about Ben, but I am glad that his doctors are able to do the surgery to deal with it. Got everything crossed here for Ben and tons of positive thoughts coming yours and Bens way. I hope that it all goes well and please let us know how it goes.

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

Best of luck with the surgery!  Keep us posted.

Take Care,

Susie

Re: Update on Ben

Tom

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

Ben made it through his surgery yesterday with no complications.  The surgeon said he couldn't see any new growth in the areas that he could see, but he did "feel" the hardness of where the cancer is in his bile duct and where it's constricting the stomach.  The doctor said he did the open surgery to make sure he could assess and access everything (I think that's what he said). 

Ben has already been sitting up in his chair and is expected to go on several walks today so it all sounds good for now.  He is on the pain medication called dilaudid, morphine just doesn't seem to have the same impact for him.

Thanks everyone for your support.

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

I hope Ben has a quick recovery.

Re: Update on Ben

Tom, wishing Ben the very best and a speedy recovery. With you watching over him so carefully, how can he miss! Did they say what they may do about the hard spot the doctor felt?

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

Dear Tom,

I am very happy that Ben made it through surgery ok. I wish him a fast recovery. With you by his side, I'm sure he will.

All my best wishes,
-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

Thanks Tom for letting us know about Ben. Glad to hear that he made it through his surgery with no complications. I wish Ben a very speedy recovery indeed and thats great that he is sitting up in his chair already.

My best wishes to you both,

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

Great new Tom!  So happy to hear that Ben is recovering well from the surgery.  Warm wishes and a speedy recovery.

Re: Update on Ben

Tom....Only during open surgery can the physician observe the true extent of the disease as it so happened in Ben's case.  The gastrojejunostomy is a welcome reprieve for Ben as it allows him to eat, gain weight, and prepare for the next plan of attack.  Sounds like he is recovering well and before you know it - home he will go.
Hopefully both of you will be able to rest (you need some too)
All my best wishes,
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

So, the next battle in the bigger war seems to be over.  Ben was released from the hospital two days ago after his surgery to reroute his small intestine and bypass the blockage at the end of his stomach.  He is recovering well - and the doctors say he can eat whatever he is hungry for (although his appetite hasn't been so great).  Of course this last turn of events has us anxious, and every discomfort in digestion has us wondering what else might be lurking out there (although the surgeon couldn't see anything else in the immediate area.  While I'm not at all religious - I have coined the new term "praying for poop".  (a sign that all is well)....how crazy is that? 

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

Hi Tom, I love your new Prayer theme, why not?  The one thing I cannot understand is that you can be so fierce (LOL) I would think that CC would be afraid to show its ugly head! I am wishing for a great recovery for Ben and you guys enjoy Thanksgiving!

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,

Thanks for letting us know about Ben. Thats great to hear that he is now home and that he is recovering well. And I know that you will be taking great care of him as well! And I love your "praying for poop" term!!

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.