Topic: Newly diagnosed, had whipple, awaiting chemo

Hi everyone,

I am so happy to find this discussion group that has positive outcomes and happy stories on it!

I am a 54 year old woman who had whipple surgery 4 weeks ago because of a bile duct stricture that turned out to be cholangiocarcinoma.  There was no liver involvement but the 2 cm tumor that was in my bile duct 'poked' into the top of my pancreas.  There was no lymph node involvement and they staged the cancer at 1B.  The surgeon feels he got all of it.

I met with my oncologist this morning and he gave me three options: no further treatment, chemo only, or chemo and radiation. This is to reduce the chance of recurrence.  He had no statistics to share since this is so "rare' which really wasn't very comforting.

Has anyone been in this position?  I am meeting again with the oncologist in two weeks since I am still recovering from surgery, so I have a few weeks to make a decision.

Any input is greatly appreciated? 

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

Hello Randi....I am happy that you have found us.  Congratulations to a successful whipple procedure and the very much encouraging staging at 1B. Chemo or no chemo has been discussed many times and I am sure that you will have plenty of responses coming your way.  In the meantime I am wishing for a speedy recovery and that you will be able to make an informed decision before your next appointment with the oncologist.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 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 sad

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

Hi Randi and welcome to our "Family". My husband is a 4 1/2 year survivor of a Whipple. His CC returned a year ago with a tumor where his duodenum used to be. After radiation to shrink it to under 7cm he had cyber knife which really killed that sucker! Now he has two small tumors one outside the liver and 1 near a kidney. They are so small and for no apparent reason seem to be shrinking! Wild!
His pancreas was not involved. 5 different doctors (ONC & Radiologist) said no chemo! It would not work on this type of CC. Radiation yes, cyber knife yes, chemo no. Again it may be different for the Pancreas involvement. Now at 77 he is looking to return to work part time and golfs. We don't question why or why not, we don't listen to statistics, they are wrong anyway,  and there is no expiration date on the bottom of his feet. You will find that the more you learn about this, that actually the stronger you become and once the fight begins the fear subsides.
May I ask where you are located? I would ask the ONC, "If I was your mother what would you suggest?".  No matter what decision you make you do have to have an on going routine. Teddy sees the  ONC every other month and has LAB work monthly. He also has a PET Scan 3 times a year. I hope this helps a little and please feel free to ask question. You are not alone at all as you have come to the right place. Remember, ATTITUDE is everything.

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: Newly diagnosed, had whipple, awaiting chemo

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

Peace, hope, and healing to all!

Re: Newly diagnosed, had whipple, awaiting chemo

Randi
Welcome to this site - it has been very useful for me as patients/carers with real experience are willing to share their experience freely for the benefit of all.  I'm really pleased at your successful whipple operation.  I'm schuled to have a whipple in March - the first operation (in December) failed as I had pancreatitis.  In the meantime I started chemo yesterday (gemzar/Oxaliplatin) to contain the tumour.  The treatment went well and hopefully the side effects will be managable.  I'm sorry I can't be of help to you on the options given by you Oncologist except to say I'd be inclined to dismiss the "no treatment" option.  The others options may help to ensure there is no recurrence. 
Randi, my tumour is in s similar position to yor's with no liver involvement also - No that a month has passed since your operation, I'm interested in how your feeling ?  How long were you in the hospital recovering? when can you return to work?  Any side-effects?

Regards

Gerry

Re: Newly diagnosed, had whipple, awaiting chemo

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?

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

Hi Randi,

Welcome to the site, although I am sorry that you have to be here. I can't help you with your specific questions as my dad never had the whipple, but I just wanted to join in with the others in welcoming you here. I hope you will come back often and ask a load of questions as you will get loads of support from all of us.

As to what cyber knife is, if you use the search function on the site you will find more info and posts about it and Lainy has written about the treatment quite a lot. Here is a link that I hope may help explain the treatment.

http://en.wikipedia.org/wiki/Cyberknife

My best wishes to you.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Newly diagnosed, had whipple, awaiting chemo

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!!

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: Newly diagnosed, had whipple, awaiting chemo

Hi Randi,

I found this video on Youtube regarding Cyberknife that may help with explaining what the treatment involves etc.

http://www.youtube.com/watch?v=3gH2zjTfojo

I hope it is of some use.

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Newly diagnosed, had whipple, awaiting chemo

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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

Randi, I am more familiar with Mayo in Rochester MN and MD Anderson in Houston. I know its a project but if you can Fax them your results they will give you an idea over the phone. We have quite a few of  our "Family" in your NY area. I just know they will also chime in to help. Marion is also excellent at telling people of possible places to get in touch with. This is the weekend and sometimes we are not that busy on line but I bet by tomorrow night you get a bunch of responses. I am still in awe of your progress. It took Teddy about 6 months but then he had an aborted Whipple, then a double ecoli infection then the "real deal Whipple" at the age of 73. Then when we got home (we had been visiting our kids in Milwaukee) 3 months later, he developed a small hole at the resection and had to go in to rehab with nothing to eat or drink for a month. Just an IV & candy bag. The hole did heal on it's own by starving it. They just didn't want to do more surgery on him at that time. With all that,  the healing took a little longer. Oh not to mention that when flying back to Phoenix from Milwaukee both tubes he had in his stomach....blew out on the plane. What a mess. He was telling my daughter when we finally arrived, "did ya see the movie Airplane?" We cracked up. Keep up your great attitude and good luck on getting a 2nd opinion.

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.

13 (edited by marions Sun, 17 Jan 2010 00:30:58)

Re: Newly diagnosed, had whipple, awaiting chemo

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Newly diagnosed, had whipple, awaiting chemo

Lainey: Sounds like Teddy had quite a time with his surgery!  So sorry to hear that.  But it also sounds like you both had great attitudes about it. 

Marion:  I am trying to gather information, but it is scarce.  I am analytical by nature and it is really frustrating not to have anything concrete to base my decision on.

I am looking forward to hearing from others about their thoughts on prophylactic treatment and it's impact on recurrence.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Newly diagnosed, had whipple, awaiting chemo

Randi
Thanks for providing a detailed account of your treatment and recovery on your journey back to good health - your really doing very well.  I've benfited greatly from information/advice gained from this site and your account of the history of your progress will prove very helpful.

Gerry

Re: Newly diagnosed, had whipple, awaiting chemo

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.

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: Newly diagnosed, had whipple, awaiting chemo

Gerry:

I forgot to add that my doctor feels that I will be able to go back to work on 2/15.  I am a computer programmer and my job is fairly sedentary.  I may go back part time to start with.  I do feel like I am gathering strength every day, I just wish it were nice outside so I could walk. I am looking into renting a treadmill for a few months.
The oncologist also said that I would be able to work during chemo as well.  I am guessing that I will be taking some vacation days due to exhaustion from the chemo and to get the chemo.

Marion:
Do you know which cancer centers treat a high volume of CC?

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Newly diagnosed, had whipple, awaiting chemo

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Newly diagnosed, had whipple, awaiting chemo

Randi
Its good to hear that you can get back to work so quickly and work part-time if necessary.  Flexibility is important whether you take-up the chemo option or not.  I started my 1st chemo session on Friday (oxiplatin/gemzar) at the out-patients unit.  The session went very well (no major side effects) and I was able to get back to work today.  I'm a banker and I get great support from work colleagues and superiors (very welcome st the moment).  From talking to other patients on chemo (at the Out-patients unit), its clear that they take a sensible approach by putting their own welfare first, some work full/part-time (but that depends on their individual circumstances) and the job they do.
     
Keep well

Gerry

Re: Newly diagnosed, had whipple, awaiting chemo

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

Re: Newly diagnosed, had whipple, awaiting chemo

Hi Kate. My husband Teddy had a Whipple 4 1/2 years ago and is now 77.  It was interesting to me that in the UK they do not give chemo after a successful Whipple as that is what 4 different doctors told us here. Teddy's Whipple was successful and they said no to chemo. He had a tumor return a year ago where his duodenum used to be and we zapped that with cyber knife. He now has 2 new small ones and oddly enough they seem to be shrinking for no apparent reason. Both the Onc and the Radman think its something in his hormones! We'll take it! At any rate the Radman said we will again attack with cyber knife if they start to grow. Life is good!

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: 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