Topic: 5FU oxiplatin avastin
My husband is starting a systemic approach to liver masses caused by CC. He is being treated with these 3 drugs with a possible review for surgery ( too compromising now) and embollization later as well. Has anyone gone through anything similar, and can anyone recount their chemo experiences on these drugs though I know they are different for all?
Thanks for any and all postings.
Topic: Tumor Shrinkage!
I am 39 and was diagnosed in December 2006. I have mets to my bone which have been surgically removed, radiated and 5FU’ed (we think the mets to the bone are gone!) and mets in my liver. The largest tumor in the liver is 2×3 cm and there are spots. I have been on a 3 week cycle of Gemzar, Taxotere and Xeloda and completed 2 of those cycles. (The cycle is: Xeloda days 1-14, infusion of Gemzar and Taxotere on days 4 and 11, days 14-21 off meds.) I have been scanned once since starting the chemo. and had shrinkage in the main tumor. (The spots are too small to really measure.) I haven’t had any horrible side effects from the GTX combo. other than fatigue on the day after I infuse. I am thrilled to have “hit” the right combo of drugs on the first try…and I pray that they continue to work for me! The fact that I can actually have a fantastic quality of life with them is an extra added bonus. Keep holding on to your faith and keep your attitude strong! I am going to shrink this stuff and get it out of my body (who knows if that will be via surgery, radiation or something that we don’t even know yet!!) but I believe it will happen.
My mother who is 71 has been diagnosed with cholangiocarcinoma of the liver. She has a 13 cm liver mass which is in the entire left lobe and partially in the right by PET CT. She is on her 2nd cycle of 5FU, 48-hour infusion every 2 weeks. They never found “the primary.” Other organs ruled out by blood tests, biopsy and scans. So far, mets is only in the liver with maybe a spot on T8-9, but this is questionable and I hope that this is nothing since the lymh gland they thought had mets is now said to be inflammation from the liver pressing down on it. Thankfully, all her other organs are working fine.
Initially, when we discovered this mass, Dec 7, 2006, I was anxious to do anything instead of sitting back and waiting for doctor appointments. (Our first appointment was scheduled Dec. 17th with the general surgeon.) I started my mother on the Essiac herbal supplement Dec 9th. After 2 weeks on this, we did notice an increase in her appetite and a decrease in the stomach aches and pains. She continues to take this daily. She is very weak now and has had increased abdominal pain since the liver needle biopsy (Jan 5) and the initiation of chemo (Jan 23).
Like many of you, I have so many questions and so few answers. Does anyone know a survivor with a mass this large? Is is possible to shrink something this large for potential resection? Has anyone else had promising results on this supplement? or this chemo 5FU? My mother asked, “how long do I have to live?” The oncologist’s “textbook answer” to a “textbook question” based on her labs and films is 7 months–well, that is now 6 months–time really does fly!
My mother is a strong woman and does not want to leave us, yet. We are struggling to get the 80 grams of protein and 80 ounces of water that have been recommended, but as you know, with no appetite and a strong desire to sleep, it is difficult. Mostly, she manages to get 1/2 of them in or 3/4 on a good day. Her ankle and knee have started to swell. The oncologist said this is a chemo side effect. Is the “cure” worse than the disease? I wonder, will it speed the process when it should slow it down?
At this date, I am waiting for a call back from John Hopkins concerning information about TACE/chemoembolization as a possible option. I just don’t have that much faith in 5FU, unless you can convince me otherwise. I realize this is a grave situation by medical views, but we would like to “add time” with TACE if it is as favorable as it claims to be based on reports that I have read so far. Does anyone have positive or negatives to share about this procedure?
We remain faithful to continued prayer. We are grateful for the opportunity to show our love and care for this wonderful person in our life. We are taking advantage of the time we have, making sure she knows that she is loved and will be missed more than she can possibly comprehend.
Thank you for listening, and for sharing any information about this.
Topic: Hello to All !
My name is Rhonda and I am Bob’s wife. Bob is a very sick fellow right now, he is beginning to be treated for metastatic chlangiocarcinoma. Our adventure started with a emergency room run on New Years eve of 2004. He had pain that moved around some but was mostly in the right shoulder. I of course thought of a heart attack, he has had two prior heart attacks and is only 47. Well he did not have a heart attack, but they gave him pain meds and advised him to follow up with his primary doc. We got him an appointment and the doc ordered a full blood panel, because we didn’t have any recent results. Tests showed extreme elevated liver enzyme levels, about 3x normal so we were refered to a gastronologist. Gastro doc preformed ERCP and pretty much immediately diagnosed cancer even without biopsy results in yet. We did get the results which confirmed cancer shortly after. We were then refered to the University of Cincinnati Hospital which has a pretty extensive heptobilliary dept. The surgeon we met with told us all the potential pitfalls of surgery but felt we should try due to my husbands age and general condition. On March 17, 2005 Bob had a whipple procedure, they did not touch his pancreas or liver. They did remove his gall bladder (which we were told was hardened by scar tissue) and a large part if not all of his common bileduct, they rerouted using small intestine to replace duct to liver. Bob did pretty well for awhile and then started chemo and radiation. He was on continuious infusion of 5FU and received injections of interferon as well as regular infusions of mitomyison. All the chemo and radiation was really rough for him he was hospitalized a couple of times during treatments and had to do neupogen a couple of times. He got through all that pretty well and only had to miss two treatments due to illness. Bob was pretty good for about a year then all the sudden it seemed like his enzymes got high again and he started to jaudice and get fevers. Bob had billary drains put in early last year, first only two and eventually three. The drains helped for awhile and all we had to do is keep up with the change schedule which is about every 8 weeks. Well right before Christmas Bob was sheduled for a change and instead of a change the Doc flushed out the drains and sent him home. Bob got sick all through X-mas he felt awful and looked awful and finally started a fever, I took him in through emergency and he was admitted for about three days. Mostly all they did was antibiotics and change tubes, the thought was that he had a infection. I took him home expecting him to gradually get better. Wrong answer! He was back in the er the following weekend with fever, throwing up and diarhea still as yellow as ever! He went in on a friday and they ran a MRI and did a Ultrasound and lots of blood work. On Monday they again checked his tubes by cholangiogram. I was available when the doc finished, but he was acting a little strange and didn’t seem to want to deal with me, so I went home. I had sat all day to hear what was up, so I wasn’t happy when I left. I got home and had a call on my machine from Bob to call him. The Doc after I left read his MRI and told Bob that it looked like the cancer was back and was now in his liver and peritoneum. He needed to confirm this info by biopsy, but he said it did not look good. I was really unhappy to say the least that this Doc dropped this bomb on Bob while he was alone. We talked it out and Bob was due for meds thankfully and could just go to sleep for the night. Biopsy was done the next day and confirmed cancer, more than one spot in liver and a large mass in abdomenal wall. Surgery is not an option, my husband’s surgeon refered us back to his oncologist for chemo. That’s where we are on the journey now. Bob is taking Tarceva orally and receiving regular infusions of Gemzar. He is an emotional wreck. I worry constantly that he doesn’t have enough strenght to fight this fight again, he just doesnt have the reserves he did when he started down this road. I would appreciate any ideas to help me feed him with out triggering nausea,he will throw up even water at times. He feels really bad and looks worse any suggestions will be appreciated. I was amazed to find this site, I found it by accident! I was on the rare cancer site, but it seems like this is a more actively posting group. Bless You All,
Topic: New to website
I to am knew to this website and have truly enjoyed hearing everyone’s stories. My 37 year old husband became ill on October 7, 2006 with flu like symptoms. A week later his urine and stools became discolored which we attributed to dehydration because of the “flu”. Three days later he became jaundice. Of course, we then went to the doctor who thought he may have hepatitis. They did some blood work and it came back that he did not have hepatitis but the blood work showed that he had high liver enzymes. He went to the hospital for a ultrasound of his gallbladder (they assumed he had gallstones in his bile duct). The ultrasound showed multiple gallstones and an inflammed gallbladder. We changed Scott to a low fat diet and all of his symptoms and sickness went away.
We went to the hospital on November 1 to have the gallstones removed during an ERCP. The doctor found no gallstones in the bile duct but what he referred to as a stricture. A temporary stint was put in to allow the bile to flow. He told us it was a very serious condition and that we would need to go to Mayo Clinic, KU University, St. Louis or some other major hospital. This was not something that could be taken care of in a local hospital. We left our local hospital not even thinking that it was cancer.
We were given an appointment for November 3rd. with Dr. Romano Delcore at Kansas University Medical Center in Kansas City, KS. He immediately began talking about pancreatic cancer. We were totally shocked. We had come for gallstones and an inflammed gallbladder. I should say that my husband’s family has a large history of pancreatic cancer. His paternal grandmother died of pancreatic cancer as did her father and two syblings. Another brother died of gallbladder cancer and the other died of a form of leukemia. We had the “Whipple” speech and walked away feeling down and out. We then were sent for a EUS (endoscopic ultrasound) which showed that my husband had Stage 3 pancreatic cancer. The cancer was in his bile duct, pancreas and at least one lymph node but not to his liver. How fast life can change in one month!!
We went back to Dr. Delcore’s on November 20th. Dr. Delcore said he was not sure if he would be able to remove the tumor. The ultrasound had shown the tumor very close to the portal vein. Also, if he had gotten in there and found that it had actually spread beyond those areas he would not be able to resect the tumor. In that case he would bypass the tumor to remove the blockage and close Scott up. Dr. Delcore said he would know about 4 hours into the surgery. Scott had then asked him what he could expect for a life expectancy. Flat out, Dr. Delcore said about 18 months if they are unable to remove the tumor. I walked out of his office thinking unacceptable. We are 37 years old and have two children (9 and 12) we have a lot of life ahead of us.
On November 28, Scott went to KU Medical Center for the Whipple procedure. I sat in the waiting room receiving periodic updates as to what was going on. Finally, at 1:25 the nurse came out to tell me that they were going to procede with the surgery. Dr. Delcore felt confident in removing the tumor and surrounding effected areas. Scott came out of surgery at 6:45 p.m. almost 10 hours after he went in. I was able to talk to him around 9:00. He looked great and even sounded good. He called me the next morning at 5:00 and just wanted to talk! He had a rough couple of days trying to get his pain medicine right. He was up and walking around the day after his surgery and walking about 1 mile a day two days after his surgery. He was determiined to beat this!! Our doctor had told Scott prior to surgery, “the bed is your enemy you want to be out of it.”
A week after his surgery, Dr. Delcore came in and told Scott that Christmas had come early for him. It turns out that he has Bile Duct cancer not pancreatic. We know that it is still not good but better than pancreatic. They also did find 4 malignant lymph nodes out of 12. They were the 4 closest to the tumor. Scott was released on December 8th.
We went to Florida for three days on December 15th. He felt great but was a little tired. We had a great Christmas and are thankful for all the days that we have together.
Thursday, of this week January 18, 2007 Scott received his first chemo. treatment. They are going to use Gemcitabine once a week for two months. He will then begin radiation for six weeks along with a chemo. pill (5FU). He will then go back to 3 weeks on and one week off of the Gemcitabine for three months. We are not sure what effect this will have, but we do know that we are young and that we will do whatever it takes to beat this terrible disease. We have a lot to live for!!
My husband has not missed a day of work since getting sick in October except for his days in the hospital, the day of his EUS and ERCP and the month he had to take off of surgery. To see him, even before surgery you would’ve thought he was just a healthy guy. He continues to work and feel great. I guess that is what makes this all so “Wrong”.
I would definitely recommend Dr. Delcore for anyone needing the Whipple. He does approximately 40 surgeries a year. The staff at KU Medical Center was wonderful. They have given us hope and promise for the future!!
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