One patient with glioblastoma still alive nine years later
by Hopeful_Lady on Sun Nov 02, 2008 12:00 AM
by mhagg on Sun Nov 09, 2008 12:00 AM
by bettyoops on Mon Nov 10, 2008 12:00 AM
My husband had the same diagnosis and treatment. He was hospitalized in March, 2008, for two weeks after the Whipple, home for one day and returned to find an abscess so hospitalized another two weeks. He lost over 40 lbs. Since the doctor felt he had removed all of the cancer, it was early stage and no lymph node involvement, they also decided not to do chemo.
He had a stomach tube inserted which required tube feedings; this lasted for about two months after his discharge. He was discharged under visiting nurse care; they came twice a week and later once a week for approximately two months. He took a long time recovering and was very depressed too. No energy, no appetite; said food tastes different (still does). He started feeling better when they put him on iron because of a low blood count and is feeling very good today and has regained all his weight. Energy is improving and he has a good bit of his strength back.
It was a long hard four months... very difficult being the caregiver during those times due to his depression, but don't give up.
Despite his prognosis after surgery, his last CAT scan showed two lesions on his liver. A liver biopsy shows this to be metastatic cancer from the ampulla. The surgeon does not want to operate. We are going to see the oncologist about other treatment.
Would like input on chemo or other thereapy which you have experienced and what the after effects are like. Any input will be appreciated.
by Annettejb on Fri Nov 14, 2008 12:00 AM
I endorse what 'mhagg' says about chemo/rad. At the time, the surgeon said they would be of no use.He had some criticisms about other surgeons that recommended chemo/rad for this type of cancer. I had endocarcinoma of the papilla of Vater in1998, with no evidence of metastasis at the time.Whipple in Feb/98, pancreatic fistula, 2 more ops and then bile diversion surgery 3 months later, which didn't have the desired effect. I've had no recurrence of cancer until now, only bile refluxes which don't seem to have a cure yet. We are trying new medicines. I live and was operated in Rio de Janeiro. My medical insurance (UK) has been unwilling so far to pay for a different type of bile diversion op. that might be more successful. I posted other messages in 2007 under bile duct cancer. Other than that, I lead a normal life.
by Twiddles on Fri Nov 14, 2008 12:00 AM
My husband, Dave, has stage IV kidney cancer, and sometimes the treatments give him horrible mouth sores. He goes for weeks at a time and can't eat much due to the mouth pain, and he gets weak and shaky if he doesn't get enough nutrition. One thing I've found that really helps is that I make "shakes" for him about 3 times a day. I use Carnation Instant Breakfast and add a banana and occasionally a spoonful of peanut butter (sometimes he doesn't want the peanut butter) then add whole milk or half-n-half (he needs all the calories he can get). These shakes are loaded with nutrition and really make Dave feel better. My Mom had pancreatic cancer, and her doctor told her Carnation Instant Breakfast is just as good as Ensure only way less expensive.
I hope that helps.
by birdee13 on Tue Nov 18, 2008 12:00 AM
My Mom was just dignosed with Stage 3 Ampullary Cancer, she has 3 tumors one 1.3 cm in the ampulla, one 1.6 cm on the head of the pancreas, one 3cm incasing the sma artery in the pancreas. 2 of the tumors are unoperatable. She started Xeloda and Gemcitabine combo chemo this Monday. She has some lymph involvement but I don't know how many since they cannot opearate.
The Doctors are all so positive and helpful, noone has said anything about how long she has or if it's fatal etc...I'm so hopeful that the tumors can shrink so that we can do a whipple, however after reading some of these posts I just want to cry.
I'm a 40 year old woman, my Mother is 60 and extremely healthy.
Can anyone share anything that can give me some hope?
by eggbert on Thu Nov 20, 2008 12:00 AM
My husband had a Whipple and is currently still doing chemo, he was diagnosed with ampullary cancer about a year ago. He also lost around 35 lbs. He now weighs around 190 lbs so don't be discouraged by his weight currently. If he is having trouble with dumping syndrome, then try high protein and low fat, very small meals each day. Don't allow him to drink until after he eats, and only a small amount. This helped my husband to eat and to allow his body time to adjust. Now he pretty much eats what he wants. My husband had lymph node involvement, of 15 nodes removed, he had 5 positive. Each day he seems to get better. Chemo is a downer, but we are thankful for the good days.
Tell your husband it will get better. My husband is 49 and I am 39 and we have made it through this together. I dressed his open wound in his abdomen as he also had infection and had to heal from the inside out.
Keep the faith and know it will get better, attitude is a huge part of getting well. I truly believe that. Do whatever you can to keep his spirits up. Whatever his favorite things are do all that to make him smile.
by dwint62 on Wed Sep 30, 2009 12:00 AM
I had the whipple procedure done on July 27, 2009. The pathology report as follows. Surgical margins of restriction free of malignancy. no significant histopathology, pylorus or distal duodenum. No definite lymphatic, vascular or perineural space invasion. 19 regional lymph nodes all negative for malignancy. I had a slight leaking pancreas for about 4 weeks but it has stopped. I went to an oncologist as follow up and he wants me to do chemo. I am having a hard time undersanding why since the pathology report was so good. The only reason he says chemo is based on statistics for that type of cancer. The diagnosis was stage 2 ampullary carcinome. (4cm mass in the duodenum). The chemo treatment is 5 FU and Oxaliplatin along with Leucovorin every 2 weeks for 6 months. I am having a hard time saying yes to this treatment with such a good pathology report. Any opinions on this will be appreciated.
by Joan_l_3 on Wed Sep 30, 2009 12:00 AM
The limited research I have done demonstrates that the studies show no extension of life due to adjuvant chemo vs surgery only. However, many doctors believe that there are micro-metastases after surgery that chemo will take care of. You could always give it a try, just to be sure; if the side effects become too much for you, you can always stop.
Whatever your decision, good luck and Godspeed.
by mhagg on Tue Oct 13, 2009 12:00 AM
On 9/30/2009 Joan l wrote:The limited research I have done demonstrates that the studies show no extension of life due to adjuvant chemo vs surgery only. However, many doctors believe that there are micro-metastases after surgery that chemo will take care of. You could always give it a try, just to be sure; if the side effects become too much for you, you can always stop.Whatever your decision, good luck and Godspeed.Joan L
I agree with the formentioned message.It has been a year and a half since my whipple (see previous message) with no reacurrence.I continue getting cat scans every six months soon to be reduced to once a year My odds I was told were 80% to make it in three years 90% after three years and 100% after five years.Originally I wanted to do the chemo,but the doctors told me that it can reduce my odds because of immune and tissue damage from the chemo and radiation I believe the treatment is not geared specifically to ampullary cancer but to pancreatic cancer which is different.It looked like a crap shoot to me and I decided to go with the odds .If it comes back it comes back.What ever your decision enjoy what time you have left be it six months or sixty years
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