Re: Update on Ben

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,
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

Wow! That is brilliant news Tom, and that is an understatement from me to say the least! Congratulations and time me thinks to celebrate big time!

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

Fantastic news for sure!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Update on Ben

Wow, what great news Tom and Ben!!  Just amazing.  As a multiple cancer survivor myself, I know the emotional toll it can take, although I never had them at the same time. 

Enjoy the summer and the glow of this great good news!
-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

Thanks everyone - it really is amazing, but realize we never know where the journey ends.  And, when we finish this remodel (hopefully November) if any of you are in the fort lauderdale area you MUST come to our party.

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

After another "dry spell", here I am back with another post on the CC board.  Unfortunately, Ben's good ride had had been enjoying now has a few bumps in it. 

Just a reminder - after battling Stage IV CC for three years, Ben was diagnosed with Lymphoma in January.  His chemo regimen switched to a different protocol to clear that up first as it was quite agressive (but at least curable).

At the end of June - chemo was done and PET scans showed no signs of Lymphoma - and they couldn't really see the CC (although PET scans don't show CC as well as CT scans).

Ben was "chemo free" for the summer which was a nice break and allowed us to focus on a few other things for a change (a little travel and the remodel of our house).

On October 7th we returned to MD Anderson in Houston for a quarterly checkup.  Their PET scan revealed that the Lymphoma is still gone (they consider that in remission), but it did show some lesions in the liver again - which they assumed is CC.  They did a biopsy of the liver just to make sure it was CC vs. Lymphoma - and the test came back positive. 

A couple weeks before heading to MD - Ben was complaining of digestion problems and a bit of stomach pain (so we were a little suspicious, but hoping it was nothing).

It turns out the new lesions were once again blocking his bile duct and he started to turn Jaundice (it's amazing how quickly that can come on - really started while at MD Anderson and got worse over the next few days).  Luckily the doctors at MD were able to put another metal stent into the biliary tract to open up the bile duct again. 

While we were certainly discouraged about the news - the doctors were still positive.  They said they would have been surprised not to see any growth because Ben had been off Gemcitibine since last December - so it had been almost 10 months for the CC chemo (since the treatment for Lymphoma doesn't work on CC).   The GI Oncologist at MD (Dr. Shroff) said she wasn't nervous about what she saw....and since Ben has always responded to chemo well - she was hoping it would be the same.

We have since returned from MD - Ben has a plastic stent in his Pancreas that has to come out next week (this was temporary to prevent pancreatitis from the procedure to put in the metal stent).  Chemo will start again on November 1st.  The doctors have recommended that he only take the GEM (vs the GEM/Cisplatin combo) as it's easier to tolerate then the combination and they consider GEM as the "workhorse of the two.

Ben's spirits certainly don't seem to be the same - and while his jaundice is gone, he does still have some stomach pain - and he just hasn't felt that great since returning (I'm sure the combination of both the physical and mental toll of it all).

So, not the best situation - but certainly could be worse given the circumstances.  We are both pragmatic enough that we didn't think CC would be gone permanently through Chemotherapy (as I've never read a case where that has happened), but we were hoping it would stay away a little longer to at least get through a holiday season without chemo. 

I'm a little worried this time - how long can the body take chemo?  But - luckily Ben is a strong man and hoping he endures it as well this time as he always has.

All my best to all of you.

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Dear Tom, so good to see you, thought I was going to have to bring out the wet noodles for another lashing! On one hand I am sorry about the return of the monster but on the other hand like you said it could have been much worse and where there are options for treatment that is always a good sign. When you go back to MD to have the tube removed perhaps you could mention to Ben's ONC about the stomach pain continuing or put a call in to her. Did they not say anything about that on your visit?  I am so happy that you guys had such a wonderful summer. Wishing for the Chemo to be an easier ride and you will receive a Holiday gift of 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,

I'm sorry to hear that Ben is back on the down side of the roller coaster of CC.  He's been through a lot but as you said he's strong and that means a lot when it comes to treatment.

I was diagnosed in August 2011 and have been on a few different chemos along with traditional radiation and then SBRT.  Since July,  I've been on Paclitaxel and it's keeping my tumors stable.  I started SBRT the beginning of May.  The plan was five treatments of SBRT and then chemo.  I became jaundiced right before starting SBRT but they let me complete it before putting a metal stent in the bile duct in my liver the end of May.  My bilirubin was 22 and they said I wouldn't be able to do chemo if they couldn't get the bili down to single digits.  Thankfully, the stent worked and my bili is actually in the normal range since June.  As I said, I started the Paclitaxel in July and am still on it and doing well.  The reason for my telling you this is because I felt lousy and not strong enough to handle more chemo.  I had a really rough time from May to July with numerous fevers and infections which meant a number of hospital stays.  I seriously considered not doing the chemo.  I was that weak.  But I did it and I'm feeling so good now with just some minor bowel issues due to pain medication.  I'm so glad I did it and that my body was able to handle it. 

I hope Ben will do well also and come back to the up side of the CC roller coaster.  As you said, he's strong so I feel positive that things will turn around for him.

Take care and stay strong!

Peace, Love & Hugs,
Mary

Re: Update on Ben

Tom -
I am a later comer to your story and I can say it has been a roller coaster ride for you and Ben. Not have one but two cancers is scary. And here I felt sorry for myself when they diagnosed my husband with CC and the same day my youngest son with thyroid cancer. It was rough for a few weeks but my son is cancer free.....not say that we aren't still on the roller coaster ride of CC.

Sending many good thoughts your way.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Update on Ben

I can't believe it has been six months - SIX MONTHS since my last post (almost to the day).  And, to avoid the 25 lashes with a wet noodle from Lainy I figured it's time for an update.

I won't go through all the details of my partner Ben's history with CC (diagnosed over 3.5 years ago) as I have them in my last post for reference and my own chronological history.

Where I left off oh so long ago in October was that Ben had just left MD Anderson with a new metal stent (inserted into his old metal stent) to open up his bile duct.  He was facing starting chemo once again (only Gemcitibine this time vs. the Gem/Cisplatin combo), and he was NOT looking forward to it (who would) and had considered not restarting.

After much encouragement (aka pleading, beating and begging) by yours truly he did restart chemo at the end of October.  (obviously chemo is a personal decision - but my rationale is that he has always responded so well, so now was not the time to give up).

I'm happy to report that after Ben's most recent check-ups at MD Anderson both in January (where they were amazed his cancer had shrunk back again - and where they stated he is in their top 1-2% of patients with success with CC) and again in mid-April where everything was still "holding steady" that Ben has been allowed to go off his chemo regimin once again.  We don't know how long but typically it's 3-6 months depending on how things go.

It continues to be an amazing journey for Ben.  None of us thought he would be here at this point - and if he was we certainly weren't expecting him in the condition he is (you still would not know he is sick by looking at him).  While chemo and the fatigue it brings - along with the mental games terminal cancer can play with your mind can be sometimes debilitating - Ben seems to rise above it all, round after round after round. 

We recently moved back into our completely remodeled house in January (having moved out last May, moving again in December since we lost our temporary lease since remodel took longer than expected and our final move in January).  So moving 3 times in 8 months all while Ben was on chemo!!!  (Lainy, that’s kind of my excuse for not posting – besides the usual craziness at work).  But, my point is – as Ben would say “you can’t put everything on hold because of this because than you just sit around waiting to die”.  And now we have a beautiful home that makes us feel good – and right now he’s off his chemo so it’s all just in time.

So, the journey continues – uphill, downhill, sideways and so forth……but at the end of the day, I guess that’s life anyway with our without cancer.

Until next time – all my best (and I hope I don’t break a new personal record for time between my posts here.

All my best – and anyone can contact me at anytime for anything….

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

HURRAH for TOM & BEN, you can take your time between posts as long as we get such great news!!! YIPPEE to 2 of my favorite guys. Congratulations on the house and now you can have many good times and just enjoy. Don't know if I told you that my parents had lived at Admirals Port off 163rd and Biscayne.
They lived there 25 years. Right down from a big race track. Ha, ha my Dad played tennis until he was 86 and my mom was queen of the shuffleboard court! Her biggest decision each day was which bathing suit to wear as she was the only woman! I loved the FLL Boardwalk! anyway time for you guys to celebrate and the wet noodle went in to the garbage. NOW what will I do for fun?? Much love to you both and stay good!

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,

I only joined this board a few months back, so this is the first time I've read your post.  However, I do want to add my happiness for how Ben is doing and also my thanks for sharing such a positive journey. Mom has been off chemo since end of Jan (had SIRT in Feb), but when needed, we'll start again on the Gem/Cis combo. It's encouraging to know that even going to the Gem alone has positive results.

And, I think moving is a valid excuse to get out of many things. 

Well wishes for you and Ben,

Catherine

Re: Update on Ben

Tom...have to laugh at the "praying for poop".  It reminded me of when my dad was ill, and my cousin put him on a prayer chain to "pray for pee," because his kidneys had shut down.  I do get the anxious part....wondering about every little ache and pain.  Since my surgery, ...esp recently, I've had a pain in one spot in my abdomen for a couple days....and I'm just about ready to call the doctor, when the next day, it changes to another location...and on and on.  I find myself guessing where it will turn up next, but since it's fickle, I doubt it is anything serious...more likely nerves disturbed during surgery....maybe regenerating...or could even be intestinal pains from food moving around a corner, the latter being something we'd normally ignore.  But boy...do I understand.  I haven't even bothered to tell my husband anymore.....I'm sure he's thinking I'm crazy too at this point.  smile

Sometimes, it takes just a bit longer for some than others to get the intestines to wake up again.  My husband had a third of his colon removed, along with a huge mass, and going home in two days, ended up being a bit more than a week.  He didn't want to eat....felt awful.  Suddenly, he felt better, ate something and was ready to go home.

When I had my ICC surgery 7+ weeks ago, it took three days post op and the help of stool softeners, prune juice and Milk of Magnesia to get things moving. Before that, I had some really nasty intestinal pains.  It took up to 4 weeks post op before I could eat anything but a small amount of food. 

I'm pretty new to the boards, having been just diagnosed in Feb and surgery at Mayo Feb 28th, so I don't have any great words of wisdom about the technical aspects of this disease....yet.....but I'm getting there, thanks to the help of wonderful people who haunt these boards.

What I do have though, is a really huge heart and broad shoulders and if you want to unload on someone...you can always email me privately through the board.  While I'm the patient in this instance, I've been there for my husband as the caregiver a couple times over the past 8 years....for lift threatening illnesses and I do understand.  Each person's journey with this disease will be different, take many turns, but the common bond is that we all want more time....for the patient ...more time to live...and for the caregiver...more time with their loved one.  Each setback is frustrating...and just plain beyond scary.  You and Ben hang on to each other...hold each other up.....and don't forget, that this disease can not take away love or hope unless you let it. 

Hugs from Iowa,
Julie T.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Update on Ben

Tom.....as always, it is wonderful to read an update. You have run the gamut from the not so good news to good news, reversing and then again with the fantastic report of today.  This so much describes the "roller coaster" of this cancer and by definition it fits the classic "chronic disease" syndrome.
Lainy is spared the wet noodle lashing and you and Ben are able to enjoy the newly redone home.  Life is good, dear Tom and I am happy for you both.
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

Tom,  Thanks for updating us on how things are going for Ben.  Sounds like you are at the top of the roller coaster right now.  Hope it stays that way.  Enjoy!

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

Tom,
Great news! Settle into the house and enjoy every hard earned minute with Ben!

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.

Re: Update on Ben

And the journey continues.  My last post in April had Ben just finishing his latest round of chemotherapy with a break approved by MD Anderson and our local oncologist here in Fort Lauderdale. 

Ben has been doing pretty well - the break from chemo was welcomed - unfortunately Memorial weekend he developed a high fever (102.5) so we took him to the ER - where they were able to control the fever while they did additional testing.   

CT scan revealed some very partial blockage of the biliary canal - and our local GI doctor was able to put yet another stent in the prior stents that were done in January (and over three years previously).  I do wonder though if it was really an additional blockage or from an infection that can occur sometimes with all of these stents.

As a precaution our doctor put Ben back on Chemo (gemzar only once again) since he responds quite well to that treatment.  It was somewhat of a disappointment as we have a 2 week cruise/train vacation planned in Alaaska starting this Sunday (june 29th - also coincidentally our 19th anniversary).  Our oncologist is sending us with his blessings as he just wanted to make sure we didn't take too much risk - but it was still a bit tough mentally for Ben (and both of us) since he had just finished in April and we were hoping to have  a few months without a break.  We also wondered was it really the cancer - or just an infection; but his bilirubin had climbed a bit and so probably a safe bet to put him on chemo. 

Anyway - that's my update for now.  Ben is sleeping a lot this week to help him get rested for our vacation in a few days - and I'm crossing all my fingers and toes that our long awaited vacation goes off without a hitch.

tom

(p.s. - I love the look and feel of the new website).  :-)

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Hi Tom,   

Good to hear from you.  Thanks for the update on Ben.  Had been wondering how things were going.    Glad to hear things are  going better.  Make sure he gets that rest so you two can enjoy that long awaited vacation.  Sounds great.   Have fun and enjoy!   We will be waiting to hear all about it.  smile

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

Hello to My Favorite Tom and Ben duo! HAPPY ANNIVERSARY!!! I am puzzled about this latest news. If the stent was partially clogged and there was a high temp that can cause the Billie to creep up and usually signifies an infection, Teddy used to get them a couple times a year. Did they do a blood culture  test? IF it is in fact an infection only an Antibiotic like Levequin  will help and perhaps the chemo is not needed yet. Don't know just taking a good stab for you guys. If you feel there is no infection of course go on your trip and have a fabulous time. IF there is  some infection Ben can start an antibiotic tomorrow. Just say'in.  Love you guys!

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....prior to your trip you might want to convince Ben to obtain the "free" biliary emergency card.  http://cholangiocarcinoma.org/biliary-e … tion-card/
Each and everyone with a stent should carry this card; it can save lives as well as prevent possible "wrong" interventions by medical personnel.
Otherwise, enjoy and should you so be inclined, send us a picture while lounging on the ship deck.
Hugs,
Marion

P.S. Thanks for the compliment on the new website, I will pass it on to Rick.

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

Lainy, the GI doctor said the biliary tract was slightly blocked again so he put another stent in.  After that and the levequain and a few days rest Ben was back to normal.  His oncologist wanted to put him back on Chemo to not take any chances - he tolerates Gemzar pretty well so he went with a reduced dose. 

Marion - I filled out the Biliary emergency card - thanks for the input.  It was easy....I also plan to put Ben's information in the registry.  Its truly hard to believe he has been on this journey for four years - and also battled and beat Lymphoma during the journey!

And now this weekend is our 19th anniversary and we are packing for our Alaskan trip tomorrow - a cruise and train ride up to Denali National Park.  While i'm a little nervous if something goes wrong - we are both in good spirits and Ben seems pretty "normal" at this point so it should be a good trip - besides we've weathered every other storm so i'm sure we can tackle whatever else comes our way.

I will send pics if I figure out how to post them out here!

All my best to you - never give up hope!

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Update on Ben

Dear Tom & Ben, Happy, happy, happy!!!!!! Have a wonderful Anniversary trip and the adventure you are taking is absolutely a fabulous one!!!!!!!!! Let us know how things were when you get back. ENJOY!

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.......Ben sure has been a trooper through it all, but he had extraordinary support from a loving partner as well.  Kudos to both of you.
Congratulations on your 19 year of togetherness - what an incredible team you are.

Have fun - I know you will do just that.

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

Hi Tom,

Thanks for the update on Ben, sounds like he is doing real good and I am very happy to hear that! Happy anniversary to you both as well! Hope that you will enjoy Alaska and that sounds good to me! Have a great time and looking forward to hopefully seeing some pictures as well!

Enjoy!!!

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.