1

(7 replies, posted in General Discussion)

Thanks everyone for your information and advice.  Seven treatments in and so far fatigue and some loss of appetite are the only problems.  I have been on pain meds and acid reflex meds for some time so no new issues there.  If I end up having to use some sort of cream for my hands and feet, my wife will crack up.  She is always trying to moisturize my "elephant" elbows and I resist that stuff.

Stan

I am only 3 days into radiation and Xeloda and other than a little problem with my appetite it has been ok. I have had 8 surgeries so with my insides I usually have nausea, diarrhea, and dehydration from almost anything new to my system.  I was just wondering what other people's experience has been with radiation/Xeloda.  Thanks in advance.
My wife is a doctor and a great resource but she is studying for her board exam in genetics and I try to give her a break from my questions and this darn disease.

3

(4 replies, posted in General Discussion)

I am 6 months out from my resection and so far so good.  I have completed four cycles of gen/cis (8 rounds of chemo) which resulted in three stays in the hospital for various complications.  I just started radiation along with Xeloda this week and so far no problems.  I see my onc in a week or so and should hear more about a clinical study for which I might be a candidate.
I am blessed to have a doctor for a wife along with great friends and a supportive church.
Personally, I am happy to be doing something about the cancer.  When the time comes that I have to just sit around and wait between scans it will be difficult.
I read this board daily and am amazed at the strength and courage of the people fighting this disease.

4

(19 replies, posted in General Discussion)

I just finished my fourth round of gem/cis on Wednesday and was even Able to go away for the weekend.  I struggle with going neutropenic and getting fevers and ending up in the hospital as I did for the first two rounds but maybe that extra week off they made me take did the trick.  It's a strange world when you get angry cause you can't get chemo when scheduled.
I hope your chemo goes smoothly and successful.

I have round four of chemo on Wednesday.  The first two resulted in two plus weeks combined in hospital due to complications. The third round was just gemzar and then a week off so I feel almost normal. Going to go away this weekend, wouldn't dare if not married to a doctor who can run all sorts of good stuff through my port.  Family, church and friends are a Godsend.

I'm sorry dr. Chung did not work out for you. I tried to tell him last week I deserved a finder's fee for advising you as to how good he is.  FYI, I saw dr toshiba at Henry ford in Detroit prior to my surgery to see if I was a candidate for a liver transplant. I wasn't. Mayo clinic would consider me after three years if I am cancer free.
I hope you have success in finding the care you want for your dad in Boston.  There certainly are lots of quality choices there.

As many have already said,  I would call your father's doctor and describe what is going on.  He may very well send you to the ER or hospital for more testing.
That gives the doctors the best chance to do what needs to be done to keep the May 14 surgery date.
I am glad that you were impressed with dr Chung; I have had 8 surgeries and he is the best surgeon I have been involved with.  I will be praying for your father and your family on the 14th.

8

(13 replies, posted in Introductions!)

My first round of chemo didnt go so well.  Went into the hospital with 103 fever.  Found out I was big time neutropenic, had a small abscess near the liver and my kidney function was getting worst daily.  Consequently I am still in the hospital.  I had a drain put in to drain the abscess and they found the appropriate antibiotic.  I am no longer neutropenic and my kidney function is too the point that we will try chemo again tomorrow while keeping me in the hospital for an extra day or so.  They are replacing cisplatin with carboplatin.  Hopefully, I can get back on schedule.

I live in Grand Rapids and just had half of my liver removed by dr. Chung. I found him to be a fantastic surgeon who took the time to explain as well as listen to my questions. I recovered very nicely from the surgery and am currently doing chemo.  My wife is a doctor, not a surgeon, and tells me we are fortunate to have dr Chung in Grand Rapids.  I would use him again in a heartbeat.

Glad to hear that the chemo is working for you.  I started mine last week Thursday.  Unfortunately, I went into the hospital Monday night with a high fever and chills.  A ct scan showed an abscess by my liver so I have a drain and am receiving IV antibiotics.  Also my white cell count bottomed out.  No chemo this week, hopefully they can adjust the dose and I can start up chemo again next week.  I like to think that this means I respond well to this chemo.
Again, welcome to the group and I am glad treatment is working for you.

11

(7 replies, posted in Introductions!)

One thing cancer is good at is helping one focus on living day by day and enjoying the little things.  I too believe strongly in not letting this disease define my life.  I am glad to hear that you are doing well and believe you will find this site very helpful and encouraging.

12

(13 replies, posted in Introductions!)

My primary care physician's nurse refers to me as "timex" cause I take a licking and keep on ticking.  Actually, I have been blessed with great support from my family, friends and church.  No one gets through a major illness without a great support system and I know I am blessed to have so many people praying for me.

13

(13 replies, posted in Introductions!)

My wife will be gathering info on the clinical study and whether I'm accepted as a candidate for it or not I will gladly share the info on the study on the board.

14

(13 replies, posted in Introductions!)

I am being treated home in Grand Rapids, Michigan.  I am blessed to be married to a doctor which has its perks. Working with my oncologist as well as my surgeon she was able to expedite second opinions from mayo, Henry ford in Detroit and university of Michigan where my Whipple was performed.

I had a port for 6 months in 2010 before I convinced them I didn't need it anymore.  I had one installed again during one of my liver biopsies in anticipation of starting chemo again.  If I had known I would be doing chemo again I would have kept it as it wasn't a bother at all other than having to get periodic flushes when not actively using it.  If you have to make a trip to the emergency room having a port is handy as there are no issues of multiple pokes to get an IV in.

Stan

I have been reading this forum for awhile and thought I would introduce myself.  Prior to being diagnosed with cc, I already have a disease called gardner's syndrome, a form of FAP.  As a result I had part of my colon removed in the 70's and the rest of my colon removed in the 80's.  in the 90's I had polyps removed from my duodenum.  After 10 years of endoscopies and ct scans, I had my gall bladder removed for a large mass in 2005. In 2008, after getting three opinions I had the Whipple procedure performed due to large areas of high grade dysplasia in my duodenum.  Due to complications I spent 100 days in the hospital over a six month period. I am still on pain medications starting with the Whipple.  In 2010 I had seven rounds of chemo to shrink a Desmoid tumor in my abdomen enough to surgically remove it.  Because I have ct scans done every six months the tumor in my duct and liver was found in December, 2012. After 3 biopsies came up negative, I had half of my liver removed February 1.  Their was no lymph node involvement and margins were good.  I did have some problems with abscesses and went home with a drain and IV antibiotics.  Thankfully that is done now.  I do have several areas of high grade dysplasia in my remaining liver.  I start chemo later this week, genzar and cisplatin, two weeks on and one week off for twelve weeks followed by 6 weeks of radiation along with oral 5-fu.  I hope to get into a clinical study in buffalo my after that but that is in the preliminary planning stages and I don't know much about it. I have been encouraged somewhat by reading other people's stories here and thank those responsible for this forum.