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  • #14710

    In reply to: F5U vs. Xeloda

    andym
    Participant

    I am on 5fu and I get a 30ml injection each day for 5 days (every 28 days) Whats the 2 day IV? I was also told there was a tablet version maybe this is what the difference is, apparently the tablet is not the same as 5fu, but when taken the enzymes in your body convert the tablet into 5fu. In my case they would not give me the tablet as it costs more than the injections. Damm NHS!
    Andrew

    #14901

    In reply to: Introduction

    andym
    Participant

    Hi all its been awhile since i have been on. Chemo started last december and they have given me 5FU its been really tough I have had lots of side effects but i start my last dose tomorrow and thats me finished. Docs are still really happy with my progress they have said they are really confident the cancer has been removed and they see no reason why it should return, probably as there is next to no bile duct left LOL! but seriously its been a long road since august but the end is in site.

    Take care
    Andrew

    #398
    michele
    Participant

    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.

    #389
    laineya
    Participant

    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.

    #15275
    caruso149caruso
    Participant

    Hello, my name is Annie from North Carolina. My husband Frank was diagnosed in December 2006. His tumor is over 6 inches in diameter covering the right lobe and part of the left. He had a pump implanted in his left upper abdomen which is connected to an artery in his liver. It is filled with Gemcitabine every two weeks and slowly dispenses all of it over the next two weeks. Then it is filled with normal saline which slowly dispenses over the next two weeks. It is alternated to prevent scarring of the bile ducts. He also has a Power Port implanted in his right front shoulder in which he gets oxciliplatin and one of the 5FU drugs every two weeks. Today was his third treatment. So far the side effects have been very mild. We are also looking at alternitive treatments. Has anyone heard of maitake mushrooms? He is also taking a chemo drug called Tarciva by mouth. Any feedback would be greatly appreciated. Thanks, Annie C.

    #15227
    bernie
    Participant

    Thank you for your post, Bob. I think it’s too late for Mom to try this though I sure wish she could have had the opportunity as this combination has worked so well for you! I hope you have continued success with your treatments and wish you all the best in your fight! Thank you very much for sharing this with me.

    Joyce, I think of you and your mother often! I am so confused right now, I’m not sure I know what to think anymore.

    The 2nd cycle of 48-hour infusion of 5FU really took my mother down. That was Tuesday, Feb 6th. Since then, the decline in my mother’s health has been so severe that like Joyce (jmoneypenny), I feel the chemo actually made her cancer worse, not better. Her fluid intake was low and I called the doctor that was on call Sunday to see if there was anything we could do since my mother kept saying, “I think I need to go to the hospital.” He said there was nothing a hospital could do that we couldn’t do at home ourselves and the only thing he suggested was for her to come to the office in the morning and they would hydrate her–“maybe that will provide some comfort.” My mother was not in traveling shape, so we had nursing hydrate her from the 12th to the 14th but it did not help much and even the nurse made the comment “hydration will not help you feel better.” I guess that’s subjective, but it appears it has only bloated her.

    On Feb 15th, Mom told Dad that she no longer wanted to take chemo and to cancel the next appointment. My father had a lot of hope for chemo and was disappointed, but honored her decision. I am glad she stopped the chemo as I know in my heart that it was making her worse. When Dad called the oncologist he said that “in my experience with this stage of cholangiocarcinoma, chemo does not help much anyway.” He told us to call Hospice. He said that based on her recent LFTs (liver function tests), she has about 2 weeks to live and the original prognosis of 6 months is not the case now.

    Hospice came on Saturday to discuss what they have to offer. Hospice had the impression that Mom has cancer in the lungs. This was “new news to us.” I called the oncologist’s office and the doctor said that their records indicated only cancer in the liver and possible T8-9 but not anywhere else. He said maybe hospice nurse heard crackling or sounds in her lungs that made them suspect she had cancer in her lungs, but no one has listened to her lungs, yet. The hospice social worker is the only person who has visited and her records reported lung cancer as well as the liver, which she said she got from the oncologist’s office “or you told us that.” I told her I had no reason to tell her my mother had lung cancer because it has never been mentioned to us! I can’t believe PEOPLE! How frustrating it is that all these laws concerning access to your medical records and making sure you list the people you want to allow access to get them for the protection of the patient and yet, I’ve requested and my father has requested Mom’s medical documents at least 4 times between both of us and we still don’t have them! It is as if “they” hold a secret and are guarding them at Fort Knox!! I guess it is not important enough to them in the whole scheme of things as she’s dying.

    I needed to know that we have done all we can for her, so I asked the oncologist if she could have had a liver transplant and he said it would have to be done today and even if she made it through the surgery, the microscopic cells left behind would most likely develop in the new liver and since she most likely has microscopic cells elsewhere, a whole new “ball of wax” would develop, so the answer was “no.” The oncologist said that her heart is fine and that most likely she will develop pneumonia and die in her sleep very peacefully. He asked if she was jaundiced, yet and I told him she is not. He seemed very surprised, but said she would probably have another 2 weeks from the 2 weeks he told my dad last week. This is a far cry from the 7-6 months he gave her at consultation in January.

    Mom is so bloated and we need to find a way to get the fluid off of her if we can at all. My father does not want her going to a hospital. He is not sure about the pills and I told him they most likely will offer Lasix. I think if she could get some of the fluid off, she might be able to sit up more and walk again, but I just don’t know. She is still very strong, but the bloating is terrible in her belly. It is all focused there and the pain, which had subsided 6 days ago is now back, but I think it might be more from sleeping 97% of the time in bed. She is not eating solid food at all and we are lucky if she drinks 1 Boost a day. I guess like you said, Joyce, we think of wasting away as a gradual step-by-step, but I guess it is very unique for each person and there is no way of really knowing. This has moved so fast, it is blowing us away mentally, emotionally, and physically! I mean it was only a week and a half ago I was taking dinners to my folks and Mom was eating a good portion of it. Now, we are down to 1 boost a day! She can only get up with help now and it’s a struggle–it’s heartbreaking!

    Can I just say that I am SOOOOO PROUD OF MY MOTHER! Through all of this she has maintained faith, hope, love, and a wonderful sense of humor even with her dentures out! She was always so self-conscious about keeping her teeth in but the last cycle of chemo left sores in her mouth and she has had to remove the uppers for the last week. My heart aches so much for her. I am torn to shreds inside. I keep telling my family not to lose hope until all hope is gone. Mom asks me every so often “am I going to die?” I say, “I sure hope not, Mom!” Some moments she talks as if she is knows she is dying and other moments she talks of the future and “when I get better, I’m going to _____.”

    What is the point of typing any of this? I guess I’m saying, if your loved one has a 13 cm mass in their liver and it’s not resectable, enjoy the time you have with them and consider that there might be a chance that chemo can actually make them worse as I think it did in my mother’s case and if you read jmoneypenny’s reports, she can attest to that as well with a similar situation. Research as much as you are able so you know you’ve done all you can but be kind to yourself knowing that even medical science and the doctors don’t have answers for this disease.

    Also, if you keep getting a “stomach virus” check it out! If you keep putting a heating pad on your side like my mother was doing, thinking she bumped into a chair when actually it was a “knot” of cancer and not a swollen bump as she thought–it’s time to go to the doctor. I’m sure she was already too far for help even in November when she noticed the lump, but if you keep getting stomach pain, diarrhea or just “don’t feel right,” please don’t take it lightly for yourself or someone else. I tried telling her to go to the doctor since early summer when I suspected something might be wrong because her memory was off, but I couldn’t encourage or “threaten” her enough to go and Dad was not pushing the issue. Unfortunately, it was not taken serious. “I’m fine, and it will go away,” she said.

    The oncologist said this cancer is “not rare” and that he has “treated several people with it.” If it’s not so rare then why does Medicare say it is so rare they don’t pay for some studies? All I know is that my mother was officially diagnosed in January and here it is February with maybe days or at most a couple weeks? I can’t believe we’ve gone from 6 months to a matter of 2 weeks! The only “common sense” explanation from the prognosis of “6-7 months and hopefully we can get you into next year” is that the prognosis was made before the chemo. Now, after 2 rounds of chemo we are down to 2 weeks!

    It appears, unless a miracle comes from above quick, the world will lose another wonderful, self-sacrificing, giving soul, genuine in kindness and deed, and most helpful to those in need without expectations in return. I have been truly blessed to have been given this woman to call my mother and so proud of her. She will be missed more than words can express. As bad as things look, it doesn’t mean I’m not still praying and looking for a miracle…

    I hope there is a cure for this terrible disease. Honestly, I think they need a better blood test, spit test, urine test, “whatever it takes” test as a way of diagnosing it early before we can even hope for a cure that will help the people who have this.

    God bless all of you who are living through this and those of you who have loved ones with it. It’s an unpaved road to say the least and I feel love and admiration for each of you who are going through this battle.

    For family and friends having a hard time visiting or seeing someone with this cancer, tell them what is on your heart! Odds are they are handling the situation better than you are and they will help you through it! I know you look at them and words escape you but your heart is flowing with love for this person. All I can say is don’t hold back, keep it positive and say how you feel or share what you remember–a memory, a song, anything you shared together is shared again–it does help both of you get through it and laugh–laugh as much as you can together. :) I am surprised at how much laughter Mom, Dad and I have had in this ordeal and I’m so glad her sense of humor is intact more than anything!

    To be able to have the chance to show how much I love her and say “I’ll see ya later, Mom” is a blessing I am truly grateful to have. But for now, I’m off to see my dear mother to do just that–keeping the love alive another day!

    #15224
    bernie
    Participant

    Thank you for your response and the advice. It’s all good! I’d much rather hear it straight than to tell me what you think I want to hear. Joyce, I am so sorry for your loss and the helplessness of it. No one loves you like your Mom, I say. I thank God that our memories do not leave with our loved ones who pass on, though I have faith that our love goes with them as they wait for us to follow. Your Mom, I have no doubt, was grateful for you. Your wisdom from this experience shines through. I find my mom reaching to hold my hand often and I am so glad to be here for her. Now, you’re holding the hands of people like myself who are lost and looking for hope with this rare cancer.

    Mom had her 2nd 48-hour infusion of chemo. She is sleeping a lot today. We were at a disadvange during the 1st chemo cycle as she had an infection in her Mediport. It was implanted on Monday and she had her chemo on Tuesday! I thought she might get an infection after a few cycles–but NOT the 1st USE! That Thursday, she had a fever, couldn’t walk, and looked pale. Her voice was soft and had trouble breathing. We didn’t know what was happening. Was it the cancer, chemo, or was she dying? Thankfully, the oncologist called us back quickly and even he was confused. “5FU is gentle chemo and she shouldn’t have this kind of reaction,” he said. His thoughts were either she was at “end of life” or she “possibly had an infection in the port.” He also said she was dehydrated and if we didn’t get her hydrated by the weekend she would be in the ER. Thankfully, the antibiotic he called in for us took care of the infection, and we were able to get her hydrated by the weekend! She did not end up in the ER but improved with each day. In fact, she had 4 awesome days of being her “old self,” and that was great! She was eating more, had more energy, and had a strong voice. Hopes ride high when you get days like that and I hope there are still some coming!

    She slowly started to go down Friday night and stayed down until the chemo this past Tuesday. However, the oncologist did say she would have a “wave” or “hill pattern” with this 5FU. Technically, this will be our 1st real “dry run” of what we should expect. She will have another cycle of it and an MRI to look for results. That will be in March. We are praying for great news as my parents 52nd anniversary will be on the 13th.

    I know that she gauges us just like we gauge her, so if I am down; she will be down. If I don’t keep believing, and stay optimistic, I am no good for any of us. I also have my father to consider. He is stressed and trying to “take charge of the situation,” but honestly, he just cannot do it all–he’s doing a good job, but he’s not domesticated! I’d give him an apron but I’m afraid he would use it to put duct tape in one pocket and a can of WD-40 in the other! He has mastered eggs well, so Mom does get her protein for breakfast! Mainly, I have to walk that “fine line” of being helpful without being intrusive in their marriage. My father wants every minute he can with his wife, and I have to honor that. I think we will know when it is time to call for Hospice care. She is walking and able to dress herself, etc., so we are not at that stage.

    If the 5FU does not show any progress, the oncologist did mention Gemcitabine as probably the next chemo to try. I am not sure about that, surely, your mother’s situation might be a warning sign for me and I will take that into consideration. I have at least 4 more weeks to research.

    I believe, she will know when she has had enough. We will support her decision as she knows what she can tolerate. My prayer is, and has been from the very beginning, is to get this mass small enough for a resection as that seems to offer the best possible outcome though I know it is not without risks, too. Of course, we’re also willing to accept a miraculous dissappearing liver mass as well!

    I feel your pain and I know you know where I am in this struggle. Thank you for your support and sharing your mother’s story. We have been blessed with mothers who love us so much that we will never stop loving them.

    Many blessings to you!

    #366
    bernie
    Participant

    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.

    #14280
    danimarc
    Participant

    I have a question about Davanat – and was wondering if any of you would know …

    My sister has already been on Xeloda (the pill form of 5FU). It stopped working for her. Does this mean that Davanat would not work for her since the chemo that they use with is is 5FU?

    My sister is on her 4th round of chemo combinations (c 3 1/2 years since diagnosis!) – and they may be looking for something else. I was wondering if Davanat would be an option?

    Thanks!

    #15119

    In reply to: New to website

    ketzey15
    Member

    Hello Crider,
    It is heartbreaking to hear about all of what you and your family has had to deal with. My father went through months and months of testing with inconclusive results. It is frustrating to know that something is wrong, and Dr’s are telling you that they can’t figure it out. Well when we finally did it was too late, my father passed away 5 months later. I’m not writing this to be a downer….I am writing this to tell you that you do need to educate yourself and not rely on what is told to you. This is a rare cancer and there aren’t a lot of doctors that could consider themselves experts in cholangiocarcinoma treatments. It also sounds odd to me that they could remove tumors without noticing right there and then that it was cholangiocarcinoma and not pancreatic! You are lucky in a way because I am quite sure if they knew it was CC they would not have performed surgery. CC patients with metastatic spread to liver, pancreas and lymph nodes are not surgery candidates. I am saying these things from personal experience with my father, and the fact that I am a veterinary student at Cornell, and have studied similar diseases in animals. I really hope that chemotherapy helps your situation, my father was not a candidate for radiation, but he did do Gemzar, and he had the best quality of life when he was on Gemzar. His oncologist however, wasn’t happy with the lack of tumor shrinkage and changed his chemo to 5FU which put my father in the hospital 2x’s before he had to stop chemo completely. Once again keep yourself informed of new treatments and even alternative treatments. There are a few people that have blogged on here before that have had wonderful success treating with alternative methods.
    I wish you all the luck in the world…this cancer is a terrible monster and it seems to take the most undeserving of people! Just remember to cherish every moment you have and leave no chance for regrets.
    Take Care,
    Ketzey

    #344

    Topic: Hello to All !

    in forum Introductions!
    bobswife
    Participant

    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,
    Bob’s Wife

    #15069

    In reply to: My Mum

    ukmember
    Member

    Prof Lodge is at Leed University (NHS) Hospital I believe.

    There a six centres of excellence for liver surgery in the UK.
    My husband was treated at University College Hospital in London, which is one of the hospitals. Kings is the other London Hospital I think.

    There are only 600 cases of cc in the UK each year so finding someone with the relevant surgical experience is quite difficult. Oncologists in the UK treat routinely with gemcitabine or 5FU. Avestin and other more experimental drugs which are widely used in the US are almost unheard of in the NHS.

    There are two clinical drug trials I know of in the UK, one at UCH and the other in Leicester.

    Whatever you do, I wish your mother all the best.
    Patricia

    #338

    Topic: New to website

    in forum Introductions!
    rider97
    Member

    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!!

    alison
    Participant

    HI Sara

    Its very exciting that you are able to attend this very important conference I just hope that all his research and new information will be of beneft to people in the UK and europe .

    When My husband Jon was being treated by the Royal Marsden in London one of our top cancer centres , we asked about some drug combination therapies we has seen discussed on this site and were told that the only drug that could be given was gemcitabine and this was ruled by NICE guidelines , they did say they may be able to use 5FU as a last resort.

    It would be so good to see all research into this disease being available to all who suffer.

    regards

    Alison

    #14984

    In reply to: Fevers

    jmoneypenny
    Member

    Hi – My mother, age 64, is also stage 4 with mets to liver and lungs, but no blockage or stents. She has had tumor fevers for two months now, every night, they said not to worry unless it goes over 101.5 and doesn’t respond to Tylenol, or if the fevers start happening during the day (any change in her symptoms). Last week, though, she had to be hospitalized for infection and high fever and shortness of breath, and they thought originally that she had blockage, but it turns out her ducts aren’t blocked, but just the buildup of fluid in the abdomen is a breeding ground for bacteria to cause infection. Also, she has been on Gemzar and Xeloda (5FU), and this has really compromised her immune system. Another possibility that the doctors suggested is that the infection is actually caused by the chemo killing a tumor in her liver and now the tumor is kinda like dead meat and causing infection but it’ll be fine after aggressive antibiotic therapy. They’re giving her broad-spectrum antibiotics, except penicillin, which she’s allergic to, and they say if she could tolerate penicillin it would be easier to treat her.

    It’s so confusing when even the “experts” don’t know anything, but I suspect my mother was having regular tumor fevers that then developed into infection and the doctors didn’t realize it at first, so it went too long. Definitely get blood work regularly and see if her white blood cells are elevated and she has an infection. This week at the hospital was hell, even though I’m glad we finally caught it. It’s also a hopeful note that chemo could be causing the fevers just because it’s actually working and killing off some of the tumors.

    Hope this helps ! Has your mother had any problems tolerating the chemo? It seems well tolerated by most people, but my mother has had a lot of problems with it, mainly the terrible anemia that saps her strength and makes her short of breath. I’d be interested in hearing if anyone else has had negative effects, as we’re thinking of doing a moderated dose if anything from now on.

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