Re: Update on Ben

Tom....to"poop" has taken on a very important position on this site as has burping and flatulence.  (Key words for us.) I am right there with you...let is happen for dear Ben. 
Our Kris and several others have had the bypass surgery with great results and that is why I believe that Ben will be up to eating some of his favorite foods real soon.
I am glad that he is in the comfort of his own home and graced with the greatest caregiver imaginable.
You guys are fantastic.
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

Thanks everyone for your support as always.  Ben has been recuperating pretty well at home - the weather is beautiful right now so he can sit outside in our backyard and watch the boats go by (we live on a canal here in Fort Lauderdale, so it's pretty neat to watch). 

He has been taking it slow for food - getting back up to speed will probably take a while.  Last night he started having very bad and painful cramps in his intestines accompanied by gas - so we don' t know if the gas is causing the pain or something else.  It's gotten pretty bad so he is taking some Oxycodone to relieve the pain.

If it gets any worse we will be calling the doctor but hopefully maybe the gas and constipation (so he has taken some milk of magnesia for that which helped a couple of days ago).  There always seems to be something to worry about.

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 and Ben. Not sure of the stomach gas pain for Ben, hope it's just a "passing" fancy. Sorry, couldn't resist. Not funny, I know how painful those cramps can be. Yep, I agree call the doc if it continues.
Not sure if I ever told you that my parents had lived, for 25 years, off Biscayne Bay and 163rd, Admiral's Port East (Miami) and I now have friends Pete & Mike living in Ft. Lauderdale also on a canal. 
Feel better Ben and that's an order!

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 have learned that bypass surgery does present a few issues in particular in regards to flatulence.  You might want to speak with the physician as he will have experience with the side effects caused by the rather invasive nature of the operation.    Some have recommended enzymes before intake of meal and, after.  In addition too moving around a bit following the meal intake is supposed to stimulate digestion.  And, as you have mentioned already, regular bowel movements will eliminate some of the problems.
Nice to hear that Ben is enjoying his surroundings.  It sounds wonderful and relaxing.
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,

Gas-x really helps with the gas and bloating.  Always helped me. 

Trevor

Re: Update on Ben

It's amazing to me how quickly time flies and at the same time how agonizingly slow it can be (like waiting for a doctor to stop by). 

Once again, it's been quite some time since I've posted on Ben's status (although things had been somewhat "stable" for a few weeks).  After his surgery in November he was recurperating pretty well at home.  His surgeon was quite happy with his progress on the gastrojejunostomy (I never would have believed I would know what that means).

We had a great Thanksgiving at home with friends and family - the weather was beautiful here in Fort Lauderdale, and while Ben couldn't eat too much, he had a great time.

He was continuing to experience intestinal discomfort (which is normal after major intestinal surgery), but it seemed to continue longer then it should have.  This past week, it seemed to be increasing and things didn't seem quite right (luckily we also fit in a holiday party where he got to enjoy more friends from the neighborhood enjoying the annual Fort Lauderdale Boat Parade!! this past Saturday).

Unfortunately the next day - Sunday, December 11th, the pain increased after his evening meal.  I took him to the local emergency room where the symptoms seemed to indicate pancreatitis and they checked him into the hospital.

So, fast forward to today (Wednesday) and he's had an MRI, CT Scan, Bone Scan.  The "good" news is that none of the tests show any significant growth or masses.  The "bad" news is that the doctors are certain that the primary tumor - while the area still not noticeable - are sure it's growing and causing irritation on the pancreas, thus causing the pain.  They also determined that through the areas of pain - both left and right side of his abdomen with occasional pain on the lower side.

At this point the doctors have said there isn't much to do but manage the pain.  Tomorrow (12/15/2011), we are meeting with a pain management consultant.   Given the area of the pain, the doctors say there is a procedure they can do called a celiac plexus block.  This procedure deadens the nerve endings in the area of the pancreas, thus relieving the pain.  I've googled that on the board and don't see much.

Ironically, he's in very good health othewise.  All the doctors are amazed at how quickly he recovered from his surgery, his blood tests/counts are fairly normal. 

We had already scheduled a backup consultation with MD Anderson in Houston before this last hospitilization (where we went last year for a second opinion) this Saturday, so hopefully he will be out Friday and we can still make that trip. 

Meanwhile, I will try to keep things documented here for my own records and anyone else who finds it useful. 

I stil find it difficult to come here very much, although I think about this board on a daily basis and am committed to post here whenever anything major changes to help anyone else.

As always, thanks to everyone - and if I'm not here - I can always be reached via my personal email by clicking on the link on the left.

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,  thank you so much for the update and I am very happy that you had a great Thanksgiving and Boat Parade. My friend Pete who also lives on the canal in FLL has told me about the Boat Parade.
You are so right when you say whoever knew we would know so much about something so 'alien'.  I am wishing for you to make the trip to MDA and that the Docs can take care of the pain for Ben.
No need to apologize for how often you appear here, we will take what we can get, we understand.
Tom, you are doing a great job and Ben is lucky to have you as you are to have him. Take care and please let us know what happens at MDA.

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,  thank you so much for the update and I am very happy that you had a great Thanksgiving and Boat Parade. My friend Pete who also lives on the canal in FLL has told me about the Boat Parade.
You are so right when you say whoever knew we would know so much about something so 'alien'.  I am wishing for you to make the trip to MDA and that the Docs can take care of the pain for Ben.
No need to apologize for how often you appear here, we will take what we can get, we understand.
Tom, you are doing a great job and Ben is lucky to have you as you are to have him. Take care and please let us know what happens at MDA.

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, Lainy,
I wait for the whole day,finally I see what I wanted.
Congratulation, you are now belonging to the 5,000 posts elite member club.
A lot of poems for those who seek comfort and encouragement.
Job well done,Lainy.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Update on Ben

Ah, Percy, thank you so very much. It is such a bittersweet feeling as there is the satisfaction that I may have helped someone but at the same time a sadness that we even need to be here. You ALL ROCK!

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 -- you're the best.  It's not easy being a caregiver.   You and Ben are fortunate to have each other.

Please let us know what the docs say today.
xoxo
Diane
(P.S. I love Ft. Lauderdale)

Re: Update on Ben

Tom,

I hope you are able to make the trip tomorrow to MDA, I think two heads are better than one, maybe they will have a different take on things. Caregiving is a full-time gig so just keep us posted when you can, I take a mental relaxation break every time you mention boats passing on a canal, it must be a lovely sight.

Patty

Re: Update on Ben

Tom/Ben, what a trip you have been on. Hope the trip to Houston happens and you can get the help you so desire.

Hang in there, brothers. Heart and prayers with you both.

-Byron

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

Re: Update on Ben

Tom….We hear of few bypass procedures on this site, but for those opting for this procedure tumor progression has been reported frequently.  I have learned that these tumors can grow large enough to press on nerves running along the spine. And, for those instances a celiac nerve block has alleviated pain for several months.  I wish the same for Ben. 
You had a wonderful Thanksgiving and with upcoming Holidays Ben should be ready for another good time.
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

It's been quite a week.  As I last reported, Ben entered the hospital on December 11th, with severe pain.  After a week of CAT scans, MRI and Bone Scan (all showing no major growths), the doctors concluded that the cancer in the area that blocked the stomach is irritating the surrounding nerves and causing the pain. 

It's a litle depressing knowing that after 7 nights in the hospital there isn't much to be done but manage pain, at least with the last hospitalization the surgery helped relieve the problem.  But, as I've read on this board it does get to this point for many people.

Unfortunatley, we didn't make it out of the hospital in time to go to MD Anderson in Houston so I had to cancel our trip there.  While disappointing, it really was just a consultation, and while they tend to "see" more in their scans/radiology - I'm not sure it would actually change the next steps - which is Chemotherapy to restart next week.   Since Ben had so much success with the Gemcitibine/Cisplatin cocktail, that's the approach they are taking agin - which makes complete sense.  We talked about rescheduling the MD Anderson trip on one of his first "off weeks" from the chemo regimen.

As for managing the pain, we still haven't stuck the perfect "balance" of too much sedation (Ben is can still be confused and not quite coherent) and reduced pain.  We are working with a pain doctor recommended by his physician who says he has been quite successful in strking the right balance with cancer patients.  He said that while Ben will likely not be able to eliminate all the pain, he can get close and still keep him about his wits.  Things do seem to be improving,  as we have gone from a 50 MCG Fentanyl patch down to 25 with Percocet for breakthrough pain.  The doctor has also prescribed Nortriptyline (25mg) to help with nerve pain.

They had considered a Celiac Plexus Block , but he said that can have complications and side effects, and he wanted to try to manage through pain medication first and use that as a last resort.

So, as of this writing - Ben still has some pain and confusion but we are getting to a closer balance.  Luckily I can work from home and monitor him closely, documenting when he feels pain and what I'm giving him.  It's a bit stressful - especially with the holidays.  I can't help but think it's the start of a downhill slide - but Ben is still overall healthy...blood work good, no major growth and is still eating pretty well, so I'm hoping for the best and keeping the bad stuff in the back of my mind as much as possible.

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

Tom, first let me say you are Tom terriffic! What a wonderful Caretaker you are for Ben. I was hoping for a different kind of 'cocktail' for Ben's Christmas but at least they are coming up with game plans and that is the key here. So, for Christmas I wish for Ben to have no pain and for you both to enjoy the Holiday, sans snow! OR you could get a huge block of ice and carve Ben a snowman!

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 wish you the best of luck in finding something to help with Ben's pain and confusion. I hope he will be able to start his chemo again. I think that is what helps my Lauren feel so good. I will pray for both of you. I hope Ben feels well enough to enjoy the holidays. Take care.

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

Have they checked Ben's ammonia levels?  Brain confusion - which my husband Tom experienced was always because his ammonia levels were too high, and WILL show by confusion.  As soon as Tom started talking/acting weird I would get him in for blood work.  The only way to get rid of the high ammonia levels is to give laxatives which will rid the body of the ammonia via the stools.  (liquid stools!)  Yep, gotta give the person the 'runs', but it works amazing.  Within 1 -2 days I had my normal coherent Tom back.

I would question Ben's docs!

Hang in there!
Margaret

Re: Update on Ben

Thanks everyone for your support.  Margaret thanks for the advice on the Ammonia levels.  Ben has an appointment with his Oncologist today so I will bring that up when they take his blood.  Also getting him back into the pain doctor today to get an adjustment there as well!

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,
Here's praying that the chemo is effective and the new year is filled with cause for hope. I'm sure that you understand that in a real sense, we are fighting this with you...

Peace and Grace,

bob

Re: Update on Ben

I'm always amazed at how much time flies between my postings, but you are all always in my thoughts.

Ben has definitely made progress on managing his pain - in my last post the pain doctors were still trying to manage the pain - without over-medicating and causing his "confused" state.  As always, the veterans here - usually know what's happening before the doctors do. 

It turns out Ben's ammonia levels were "off the charts" and the doctor prescribed 30cc of Lactulose 3 times a day to produce "loose stools", which is the only way to reduce ammonia levels (Of course Margaret had already predicted that right after my last post!...thanks Margaret, I told the doctor about you!)!

Once Ben started the Lactulose - within about 3 days he was must clearer and almost back to his old self.  So everything at this point is managed with a 25MCG Fentanyl patch for pain and 50mg of Nortriptyline to help nerve pain.  He has perocet for breakthrough but really hasn't needed that since Christmas.

Now that everything is under control, our Oncologist (Dr. David Lessen in Fort Lauderdale) gave Ben the go-ahead to restart chemotherapy.  He restarted this past Thursday - January 5th.  Same protocol as before since it worked so well (Gemcitibine and Cisplatin combo).  Unfortunately, it took almost the whole day - his port seems to have become clogged and it was dripping soooooo sloooooow.  I finally asked them to put the IV in his vein.  They are now scheduling him for a "clean-up" of his port.

Ben made it through his first round quite well, no nausea and vomiting just like last time.  What's different is he isn't staying up all night like he did in the previous rounds (I presume some of that has to do with his pain meds that make him a bit sleepy).  He also started right off with going for more fluids the next day to prevent dehydration - which we started the last few rounds of his last treatments and it seemed to help.  He even drove himself for the extra fluids and managed the whole day while I was at work - which I consider a huge TRIUMPH! 

He still has moments where he isn't as clear and focused as he used to be, but for the most part he's the same old Ben.  Here's to another successful round of chemo - so we can stop these new growths in their tracks!

Thanks everyone for your ongoing support.  You are all amazing.

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

Tom, thanks for the good update! You are still a dynamic duo, look at how you know in your gut what is wrong like the clogged port! Who would have ever thought in our lifetime we caretakers would learn so much of something we would have dreaded knowing before. I am so glad you guys are having some normalcy and my Prayers are for it to continue!

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've so happy that I was able to give you that advice about the Ammonia levels in the brain.  I'm certain that Ben was not so excited about having the runs, but a man has to .do what a man has to do!

Tom experienced this several times during his 3 year 8 month battle with CC.  As soon as I realized that he was talking weird, acting SO not normal, it was off to the doc's for blood work.  He kept talking about me having to buy a birthday cake and a new bumper for his truck.  Just was not his normal self and I knew something was wrong.  Once he got on the meds to cause the 'runs' his ammonia levels returned to normal and he was find.

His doc's need to check his ammonia level EVERY time Ben goes to the doctor!  It's something that they need to keep an eye on.  So glad to have been of assistance.  Now that my Tom is gone (he passed on 10/20/2011) I will continue to try and be of assistance on this forum whenever I can.  I learned so much more about this disease then I ever wanted to know.

My thoughts and prayers will be coming Ben's way from Wisconsin.

Go with God and KEEP KICKIN' THAT cancer.

Hugs,
Margaret

Re: Update on Ben

Side note:  with the Lactulose you want to be a bit careful.  You can adjust it down a bit when necessary.  You don't want Ben to have loose watery stools, you just want to make sure he is 'going' every day.  Any type of pain medication can cause constipation, which in turn causes the ammonia levels to start climbing.

Since I have ummm, 6 bottles of it here at home, I have been using it when I find myself w/a bit of constipation.  It works quite well!

Re: Update on Ben

Tom...great to hear that Ben is improving and thanks so much for keeping us informed. 
Agree...the knowledge shared on this site is unsurpassed.  Margaret has such vast experience with drains and blood tests - we are fortunate to have her. 
May Ben continue to improve and may he continue to strike at this cancer.
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