Update on Ben (Page 2 of 4)

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!

Tom,

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

Trevor

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.

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.

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)

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.

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

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

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

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

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