Newly diagnosed, had whipple, awaiting chemo

Randi,

I hope your recovery has continued to go well. I didn’t see what you decided to do.

My husband is 8 days post Whipple surgery. He had 8 months of chemo prior to his Whipple (after the 1st attempt failed). He was in extraordinarily good health prior to his diagnosis, which everyone thinks contributed to him managing his treatment so well. His biggest side effedct was fatigue, but that really just translated into him going to bed at a decent hour. The Xeloda did a number on his hands and feet. But other than that, he exercised, traveled, skied, chopped wood (often on Fridays right after his treatment!) and shoveled snow.

His Onc is planning on 3 more months of chemo, possibly followed by radiation, once he gets the go-ahead from his surgeon. Personally, we were both happy the hear that that’s what he had in mind. We consider it insurance (though realize there are no guarantees).

I wish you well.

Gail

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

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

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….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

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

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!!