Topic: 1st Week Home After Whipple...

Hi,

My name is Bob.  I'm 51 and otherwise very healthy.  After a couple weeks of jaundice and excessive itching, I was diagnosed with Cholangiocarcinoma on 12/8/08, had a Whipple procedure on 12/10/08, and was just discharged from the hospital last week (12/18/08).  There's nothing like a cancer diagnosis out of left field to cause you to place your life on "pause" and reexamine everything.  God has given me the strength to endure the challenges, and a peace that surpasses all understanding.  The good news - this was a stage 1 diagnosis, confirmed by pathology reports on all the organs and tissue removed in the Whipple procedure.  YEAH!  I'll have a PET scan and follow-up with an oncologist, but the team of doctors believe that everything was removed and I'm cancer-free.  HOWEVER, I'm working through the challenges of eating without vomiting, and I'm 25 pounds down since this started.  I should be on the road to recovery, but I feel like I'm missing some of those organs that were removed (gall bladder, 1/3 of the pancreas, 1/3 of the stomach, duodenum, etc).  Any post-Whipple suggestions?  Does anyone know if this is short term or a challenge that I'll live with the rest of my life?  Thanks.  Bob

Re: 1st Week Home After Whipple...

Congrats on a successful surgery! Dad did not have the whipple procedure but did have his gallbladder removed.  It took him a while to adjust but pretty much eats everything he did before now. Recovery is tough but it sounds like you are doing well. Again congrats!!

Re: 1st Week Home After Whipple...

Well as I always say, welcome to the best little club in the world that no one wishes to join! Just so happens my husband at the age of 73 had a Whipple in September of 2005. He did very well until last April when the cancer returned where the duodenum used to be. He went through 25 treatments of radiation last summer and just finished 3 treatments of Cyber Knife. The radiologist told us that upon his next PET Scan he will be cancer free! With that said, the Whipple is the largest surgery to the human body. Teddy had some complications such as a small hole developing at the resection and things like that but he did quite well. He also had hiccups for 6 months. It takes almost a year to feel normal. This was our follow-up regime: LAB work and Oncologist visit every 3 months. Prevacid daily for digestion and that was it. For hiccups and stomach upset we discovered Brioche in a blue plastic container at Walgreens. Also Mylenta works great. Your surgery sounds identical to Teddy's.
He lost 30 pounds. As for the future your stomach will never be like it was but its not so bad either. Your energy will come back but be patient. I was shocked that you were diagnosed and they got you in so fast. That is great. We are with a new Oncologist as ours retired and he wants Teddy to have LAB work every month. That is really the only way to get an alert and then on to Scans.
This cancer is a monster in that you almost never know you have it until its almost too late.  The other thing is everyone reacts differently to it and its acts differently with every one! You and Teddy were lucky. Best to you on your recovery and if you have any questions please feel free to ask away!

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: 1st Week Home After Whipple...

Kay - thanks for your encoragement.

Lainy - I appreciate the time you took to explain the road ahead.  Your Teddy is also very fortunate.  I'll have to check out Prevacid.  I've had the NG tube out for a week, and experimenting with nausea medications.  So far, I've tried Prochlorperazine and Nexium for reflux, neither seems to make a significant difference.  I have a few good hours in the day, the rest of the time is spent walking, staying vertical, trying to prevent vomitting. 
You are correct - this was a very quick move from the diagnosis to surgery.  Although Colorado Springs is not a large city like Denver or Phoenix, we have a large hospital with an oncology group that specializes in Whipples and GI cancers.  I was blessed to have a very attentive team working on me.  They have all said that my recovery is much faster than most, but I chalk that up to a stage 1 early detection and possibly the fact that I was an avid runner up until the onset of the first symptoms (~Thanksgiving).
As far as questions - do you remember how many days/weeks/months after surgery until Teddy was able to eat without vomitting?

Thanks - Bob

Re: 1st Week Home After Whipple...

Oh Boy, Bob, wish I could answer that but he never vomited. I introduced foods very slowly and he was put right on Prevacid for digestion. Actually he had no appetite for months.  Must tell you he had the Whipple twice. The first time they had to abort as the dye from his endoscopy had leaked on the Pancreas and about destroyed it. The doc as you know had to cut the head and could not go near it. So after the aborted  (4 hour surgery) Whipple he recouped. Then about 10 days later he started getting very ill. Turns out he had an ecoli infection and went back to the hospital with blood pressure of 65 over 45.  9 days later the pancreas healed enough to do the real Whipple! All this happened in Milwaukee and very quickly like yours and we lucked out with the surgeon. He was the best. OK so a month after that (our 2 week trip turned in to 3 months) we flew back to Phoenix. He had 2 tubes and about 1/2 hour from Phoenix they both blew out on the plane! We were home 2 weeks and he developed the hole at the resection and was put in to Rehab on NOTHING but an IV for a month and it did heal. That brought us some relief and normalcy until Last April. Teddy gets indigestion a lot and for that he uses the Brioche or Mylenta. Mylenta got him through the radiation. It just goes with the territory. You have to remember you just went through this and as you heal so will the stuff that goes with it. Sounds like you have a good team and that is good. Perhaps you can try to eat very small portions more often.  Our secondary problem is that the new mass has pushed his right ureter closed and so we are also working on the kidney problem. If you saw him you would not believe he has been to hell and back. He looks great for 76 what he has been through. He would be happy if he could just golf again which should happen in about another month. What kind of follow up are your doctors advising? You need a lot of hope and courage for this and it sounds like you are on the right track!

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.