Newly diagnosed, had whipple, awaiting chemo

I misstated...My tumor was IIB...involved in pancreas, but not involving any lymph nodes.

Thank you so much for responding Marion and for the best wishes. I am having a difficult time coping with this all...I just want my life to go back to normal, but I know it will not

Hi Randi,

We're so glad you found us! You're facing a big decision, and people here have had so many different experiences that they have tons of information to share. Just let us know what we can do to help!

I had radiation with Xeloda after my second, failed surgery, and it worked so well that I really wish I had pushed for it after my first surgery.

In 2004 I had surgery for a Klatskin tumor and they told me they "got it all." They removed 1/2 my liver, my gallbladder, and other bits and pieces. No lymph node involvement, and when they said I didn't need any chemo or radiation, I was only too glad to hear it.

2 1/2 years later, I had a recurrence nearby, but the surgery failed because the tumors were stuck onto blood vessels. This time I had 7 weeks of radiation with Xeloda. It shrank the tumors (though they didn't disappear) and there has been no real disease progression since then.

I can't help thinking that if I had had radiation the first time, I might not have had the recurrence... But that's just me, and you need to think this through for yourself.

My very best wishes to you--

Kristin

Thanx to everyone so far for responding so quickly.  It's nice to hear from people, live people, who are going through or have gone through this.

Gerry:  I had my Whipple surgery on 12/15/09, about 4 weeks ago.  I think I did very well overall.  The surgery took 6 hours with an additional 2 hours in recovery. I woke up in a room (no ICU) surrounded by my family.  I did not have any drains, but I am told that is the exception not the rule.  I had an NG tube in my nose and a Foley catheter.  They had placed an epidural before I went into surgery to help me manage the pain medications locally (instead of thru and IV) and I HIGHLY recommend that to anyone going thru this surgery. It delivers the pain meds right to the spot of the pain and you don't get as much of a morphine brain fog.
I left the hospital after 7 days, which again was quicker than they had anticiplated. They told me 10-14 days initially, but I was off of the IV morphine, no longer hooked to IVs, and taking food and pain meds by mouth.
Some of the hardest things for me to adjust to once I came home was constipation, anemia (which I left the hospital with), and total exhaustion.  I slept quite a bit the first 2 weeks and that was frustrating.  The constipation was exacerbated by having to take iron and also the narcotic pain medication.
It's been 4 weeks and I usually take only one nap a day, my constipation is being to resolve and my anemia has cleared up.  I did lose 12 pounds since the operation, mostly because I just don't have much of an appetite, but I force myself to eat little meals and I drink milkshakes.
All in all, recovery is not as bad as I thought it would be.

Lainy: I am located in Rochester, New York and am going to the Wilmot Cancer Center. I asked the oncologist (Alok Khorana) if I should get a second opinion and he said I could but that the protocol is the same and the decision is really up to me since there are no statistics to suggest one over the other.
Can you tell me a little more about what a "cyber knife" is?

Hi Randi. Cyber Knife was originally for brain cancer only and slowly it has been introduced to more various types of cancer. The tumor must be under 7cm and there can only be a few tumors in the area. Teddy had to first have 25 days of radiation to shrink his tumor as it was 7cn and they shrunk it to 6cn.
The total treatment takes only 3 - 5 consecutive days and you are done. The only after effect Teddy had was some tiredness. It works for up to a year on the tumor. First it "kills" it then it slowly "burns" up and is gone. Its is an amazing form of Laser. A true Miracle.
Randi, you have done marvelous, another true Miracle. I just want to say if you have any questions at all in your mind..it is your right to seek another opinion. All doctors do not use the same protocol.
I am elated about your recovery so far. Keep up the splendid work!!

Lainy,

I am not sure where to go for a second opinion.  I would prefer not to travel since my energy level is so low.  Do you know of any places that do second opinions by looking at records without physically seeing you?

-Randi-

Randi....I don't believe that any studies have been conducted on CC patients prophylactic chemo or, radiation. I believe that the experts are still divided with their opinions.  It seems that those patients who have had a resection without post treatment and then encountered a recurrence believe that a mistake might have been made.  We have so seen patients on this board both, patients with post-treatments and those without showing recurrences.  And, we have seen no recurrences in either group, also.  Confusing?  Sure is. 
Ultimately it will be your choice as to whether to  be treated or not based on the information gathered.  And, it will be the RIGHT decision. I am with you.  Life needs to resemble some normality again.  Hang in there.
Best wishes,
Marion

randi....I can relate to that.  We would like concrete answers to our questions.  But, if you consult with those centers treating a highly volume of CC patients then I would consider that: majority rules.  BTW, have you gathered all of your medical records?  This includes, blood tests, physician's reports, CT scans, etc.  This will be necessary.  Also, is there someone you trust who could take care of some of this for you?  With all the information coming your way it might really help to enlist an advocate. You need to heal and gain back your strengths.
Best of all wishes,
Marion

Hey, Gerry. Just wanted to add that what happened to Teddy was rare. His actual surgery was not that bad for all that was done. He was sitting up that night and walked late the next day! Unbelievable. If it had not been for his set backs that were no ones fault, he would have been on the golf course earlier. I think part of it was due to the fact that the first Whipple was aborted after 4 hours and 3 weeks later he had the "real deal.' I may have missed something but why are they waiting so long to do your surgery?
I also want to add for anyone listening.....When I had my surgery Oct 1st, I asked for an epideral and that relieves you of any big discomfort for 24 hours or 48 hours, which is wonderful as you have a chance to garner a little strength. It does not hurt and well worth it.

Randi.....on top task bar:  Cholangiocarcinoma, scroll down to major cancer centers.  In addition too:  google search (top, right hand side) when entering "chemo after resection" you will be able to read up on previous postings regarding this subject.  Others may also share their opinions with you and why they chose a treatment over no treatment, (or, the reverse)  post resection. I believe, the most knowledge gained on this board is the information shared by our members. 
I wish for the weather to change so that you can get outside for just a bit.
Best wishes,
Marion

Gerry
I hope that your experience post-Whipple will be something like my dad's.  He had a Whipple Jan 13th and spent 12 days in hospital.  His first few days were really hard as his epidural wasn't working and he had a reaction to the morphine, but after that his recovery has so far been really speedy.  He was able to eat after around a week and has been eating most things since then, with no ill effects, and not always taking the creon (enzymes).  I believe leakages are a fairly common and worrying complication, although they usually clear up, but my dad had no problems like this.
He is 6 weeks out of surgery and asking about when he can get back to swimming, walking at least a mile or two every day.

Being in the UK we seem to have a different procedure for chemo, in that usually none is given if the 'curative' resection is deemed to be successful.  My dad has been recruited onto a trial (BILCAP) which is testing chemo with Xeloda (Capecitabine) against simple observation to see if chemo makes a difference to recurrence.  Personally I would prefer him to be offered chemo, which seems to happen in the states?  Anyway we will find out soon which part of the trial he is on.

I hope your surgery is successful and you are soon back to 'near normal' if that's possible.
Kate