Newly diagnosed, had whipple, awaiting chemo
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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
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?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
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
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.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
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,
MarionHi 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-
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