by Wanda47 on Wed Mar 26, 2008 12:00 AM
by dcnbama on Fri Mar 28, 2008 12:00 AM
I too, was dx with ampullary cancer (at age 56.) You can be encouraged that it is the "lottery" of cancers if you have to have a cancer in the first place. I was dx in Nov 2006 and had my Whipple in Dec. With radiation , I took Xeloda daily Mon-Fri with weekends off as I did not receive radiation on the weekends. The literature mentioned that "week off" thing but apparently the treatment for ampullary cancer is different. (Remember if you have questions, ask your oncologists or their nurse practioners. They are the experts. On this site, there are similarities but we are all different and treatments may vary for some.) My chemo was gemcitibine or Gemzar.
I had to have one drainage tube in for 6 months due to an infection and I am still sore there at times but otherwise back to normal. I have had 2 cancer free checkups since concluding my therapy.
I do have an incisional hernia that will eventually need to be repaired. This is not really surprising considering the serious surgery involved with a Whipple. I am a nurse and I sure underestimated the seriousness. I felt that the surg and recovery was the worst of it. Radiation and Chemo were a breeze overall.
I would be glad to keep in touch and support you in any way I can.
by Wanda47 on Fri Mar 28, 2008 12:00 AM
Thank You so much for responding and Congratulations! I started my radiation and chemo 2 hrs after I posted this.I have so many questions,I dont know where to begin lol Did you have any side effects to the radiation or the xeloda? I want to start back to work next week(I work at the post office part time) and I'm kinda hesitant because of the soreness from the incisions and Im not sure if im really ready.But Im a fighter and I feel like I need to get back in routine.Please keep in touch and God Bless You!
by Ken on Fri Mar 28, 2008 12:00 AM
I also had the Whipple performed in New Orleans by Dr Bolton on 12-16-2005 and I am still here. I was 68 at the time and some 27 plus months later I am doing ok. I also had the rash around the feeding tube area for some time but it finally went away and has not caused any problem. The hole (indention) is still there to remind me. The summary of my Whipple is listed below.
Ampulla of Vater Carcinoma Whipple Procedure 12-16-2005 Tumor Staging: pT2 pNO pMX Moderately differentiated invasive Adenocarcinoma of Ampulla of Vater, 3.0 CM Tumor Invading but not through Muscularis Propria Two Oncologist stated no benefit would be gained with Chemo or Radiation so none was performed
I was in the hospital for nine days and had some setbacks until February 9, 2006 (feeding tube was removed) and I have not looked back since. Since I did not have any Chemo I am unable to answer any questions on that subject. If I can provide any other information just ask. I am from Mississippi, some 70 miles east of New Orleans.
I wish you well. I know that God healed me.
As long as your Dr okays you to work and you feel up to it.. go for it.
I didn't really have any problems with radiation. Maybe just a bit of a loss of appetite. I never had any fatique.
Chemo was okay for me too. I had some problems with IV sites but I ended up getting a PICC line put in so that helped avoid any further problems.
Oh.. with Xeloda my hair thinned quite a bit but I didn't lose it all. Once I was off of it , it came back in as normal again... with a bit of wave.
Do keep in touch.
by CAROLYN9776 on Thu Apr 03, 2008 12:00 AM
I was diagnosed with ampullary of the vadar in 2004. I had a wonderful team of doctors in Miami Jackson Memorial Hospital/Sylvestor Cancer clinic. My whipple took approx 6 hours I am told. My recovery in the hospital was 6 days when I was released. I was released with a drainage tube as well and it was removed 4 weeks later. They don't tell you the removal really hurts....lol I was active again with in 2 weeks of going home. I was sent home with pancreas (to eat during meals) and protonix to take before bed to stop acid reflux. Currently I only take pancreas when I know I am going to eat a food that my stomach doesn't like...lol I have not taken the protonix for reflux in 2 years. I eat what I want when I want. I am active in every shape in form I want to be with no reprucussions. I had no chemo or radiation ever. My doctors got it all when they did the whipple. I currently still go in for qaurterly blood work but my scans are down to every 6 months and still cancer free.....woohoo...august will be 4 years. I visit my doctors still every now and then to show them a whipple is survivable. I do find if I put on any weight here and there my scar doesn't like it and neither do I....lol
Hang in there everyone....we're alive and still able to talk about it. We are survivors...thanks God everyday for it....God Bless you all
Carolyn in florida
On 3/26/2008 Wanda47 wrote:I am 47 yrs old and was diagnosed with stage 2 ampullary cancer in Jan 2008, I had the whipple procedure done on Feb 8 by a fine Dr at Oschners in New Orleans. I was in the hospital for 13 days and was sent home with 5 tubes in me including the feeding tube, I was off the feeding tube after 1 week home and went back to New Orleans yesterday for my 6 wk checkup.They removed the rest of the drainage tubes but when they went to removed the feeding tube,they had to break the stitch from the inside.My stomach feels like Im wearing it on the outside now it is so painful and sore. Is this normal? Im suppose to start radiation and chemo next week but have a rash around one of the incisions from a drainage tube, I will be taking xeloda(3 in morning and 2 at night) the entire time of radiation for 6 weeks. Ive heard people say they have taken xeloda for 14 days then a week rest. Is it normal for me to take it 5 days a week for 6 weeks?I also had stage 3 colon cancer 4 yrs ago and am in remission still thank god, Actually thats how they found the ampullary cancer when I did the ct scan to make sure the colon was still in remission..The Drs seem to think I was lucky that they caught it because I didnt have any symptons at all. Any feedback will be great. Ive read many stories on here and I feel at home here when Im reading. I know Im not alone. God Bless You All!
by TNmom3 on Sat Apr 05, 2008 12:00 AM
Just wanted to let you know that I was also a 47 year old female with ampullary cancer. I found out last July 5th. (I just turned 48 now). Boy cancer will sure flip your world upside down. I have 3 kids ages 7-16. And life stopped for us as we went through the Whipple recovery and then all the Xeloda and Oxaliplatin treatments. I fly to MD Anderson in Houston for treatments. I am now finished with chemo and my CT scan last week came back all clear. For now we are living life and not cancer and thanking God for each day we have as a family. The Whipple recovery was the toughest part for me and I was healthy before all this started. My eyes turned yellow and that was the tip off something was wrong. 3 biopsies said no cancer and bloodwork too. The chemo had minor side effects for me-some stomach upset and hand and foot sensitivity. The weird thing I have now is that after I've stopped chemo 4 weeks ago, my hands and feet are peeling like crazy! I have to keep creams, etc on them all the time. They don't hurt, just an inconvenience.
I am curious if you don't mind answering-do you have diabetes and/or have you had your gallbladder removed? The other lady I have met with ampullary cancer had both and so do I. I would really like to find some correlations and tip offs for this disease as it is considered very rare. My doctor here told me it would take 30 years to find 1000 patients with ampullary cancer. They also told me that I was on the young end of the disease.
Well, just wanted to let you know that you can fight this. I'm enjoying life now. I still can cry at the drop of a hat if you get me in that mode, but my faith is helping my family and I cope with all this.
Best to you!
by Wanda47 on Sun Apr 06, 2008 12:00 AM
Hi Mary and Congratulations! In answer to your questions-I do not have diabetes and my gall bladder was removed during the whipple. I am in my second week of radiation and chemo and the more I go the more tired I get.Not sure if its the chemo or the radiation or both but its mostly after radiation that I feel exhausted. The surgeon said he removed all cancer during the surgery so I was wondering about how do they tell if its still in remission? Is it just blood work or ct scans that they do or both?I returned to work on Saturday and felt good till mid afternoon. My appetite comes and goes but I pretty much eat anything and everything lol. Ive only lost 12 lbs since my surgery but I needed that. I also had an abcess where the feeding tube was removed and its still sore but not as bad.
God Bless and take care
by TNmom3 on Sun Apr 06, 2008 12:00 AM
On 4/6/2008 Wanda47 wrote:Hi Mary and Congratulations! In answer to your questions-I do not have diabetes and my gall bladder was removed during the whipple. I am in my second week of radiation and chemo and the more I go the more tired I get.Not sure if its the chemo or the radiation or both but its mostly after radiation that I feel exhausted. The surgeon said he removed all cancer during the surgery so I was wondering about how do they tell if its still in remission? Is it just blood work or ct scans that they do or both?I returned to work on Saturday and felt good till mid afternoon. My appetite comes and goes but I pretty much eat anything and everything lol. Ive only lost 12 lbs since my surgery but I needed that. I also had an abcess where the feeding tube was removed and its still sore but not as bad.God Bless and take careWanda
If this is a repeat-sorry I might have hit the wrong button! My doctors have me on a every 3 month CT Scan schedule and with that I have blood work to check on any reoccurrance. I feel great with lots of energy-which is a good thing with 3 kids to keep up with. I did lose 40 lbs after surgery but have gained about 30 back since my appetite returned. I'd like to lose 10 again but not the way I lost it before! I would tell you to take it easy and not overdo it. You have had MAJOR surgery and then on top of that the chemo/radiation is at war with your body. I know I sound like a mommy, but be careful to stay away from sick people and keep that hand sanitizer around. If possible, rest when you can, nap or just do something to relax.
Take care and have a great week! I pray continued good news for you.
by Bomberlover84 on Tue Apr 29, 2008 12:00 AM
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