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  • #39684
    haiminh
    Member

    My friends, Mum’s CA19-9 was 270 yesterday, other things are still ok. We saw the Dr and he confirmed that it was recurrence (95% of the possibility). He emphasized the sooner we have chemo, the higher our chance of pro-longing her life is. We came to see another Dr and he also said that. So, it finally came back and we now have to fight again.

    The proposed schedule for chemo is: Oxaliplatin + 5FU + Gemzar (totally like the adjuvant chemo she got last 2 years) Day 1 & Day 7. So we have to go to Singapore on Monday, having chemo then go back to Vietnam. Then go back to Singapore on Friday to have chemo on Saturday, then go back to Vietnam. 2 weeks later, the cycle is repeated.

    Just to share with you the situation. I will update her condition for your infor.

    Best wishes,
    Minh

    #3995
    devoncat
    Spectator

    Cimetidine (aka Tagamet) has been shown in studies to act as an anti tumor agent in colon, pancreatic and other cancers alone and when used with 5FU. I just thought you all might want to know this. There are several studies posted on Pubmed.

    I NEED help with my acid stomach so I am going to see if I can switch from Lanzapro to this. If I need to take the medicine anyway, I might as well use one that has shown some antitumor activity.

    Kris

    marions
    Moderator

    Gaye….I am hoping for others to give us some input also. There is good news in that the stents are functioning properly. Also, your husband’s current chemotherapy appears to be that of 5FU plus Leucovorin. (Leucovoring is an amino asset.) At times other agents may be added or another regiment may be ordered. This is something you might want to discuss with the oncologist. Adding additional calories in order to stabilize his weight would be something else to consider. Does your husband like certain foods better than others? If so, I would focus on that. Hang in there, Gail. We are behind you, in front of you, and beside you.
    Best wishes are coming your way,
    Marion

    #3815
    craig
    Spectator

    Diagnosed

    I was diagnosed with Cholangiocarcinoma stage 4 April 16th, 2009. I went from my local hospital in Grand Rapids, MI to the University of Michigan Cancer Center where the tumor board said I could not be resected and was directed to Mayo Clinic Rochester, MN for a liver transplant. When they did part of there workup in June they told me I was in very good shape just had the CC and scheduled for prep work for the liver transplant. That consisted of 30 radiation treatments, 21 days of 5FU, brachy high dose radiation therapy, and staging surgery. Mind you I had no metastatic cells in my body before the prep work for the liver transplant! When the surgeon came by after the staging surgery and said they found cells in the lymph tissue and that I was out of the program/process of a transplant. I was sent home – – – the oncologists have told me they do not know what or how to treat the CC tumor. I received chemo through the month of January 2010 and stopped because I was exhausted the majority of the time and could or would not do anything, there was no joy in life and no future. Depression, well that is to say to me, was nothing but suppressed ANGER. I was angry at G_d, VA for turning me down, at the world and anything else that got in my way.

    I have use alternative products all the way through this mess and have had a better quality of life since. There are times I am down, temper is short, and I tire easily (exhausted). My last PET scan indicated that I had no metastatic cell, just the CC tumor.

    I have great respect for Mayo Clinic and the liver transplant team and University of Michigan Cancer Center and their tumor board. I consider most of the doctors

    #3725
    lsisman
    Spectator

    My husband had a whipple. He was out of the hospital in 7 days. he had drains removed then and had a leak between staples for long time but we got it dried up and all. he lost 80 lbs, he is a BONE and it is upsetting for me to see !! You haev no idea!. They left a stent in his pancreas but not sure if metal, assume so cause they never mentioned it or any issues we should be aware of, BUT, I have read all thorugh these notes about stent blockages. do they all block? Is the symptom only jaundice again? Although my husband’s recovery has been long , 6 months now, and he is so weak and trying to absorb calories, and still lots of stomach pain and huge pain killer addiction and his need to stay on them longer, he has not had complications related to what so many people speak of. blocks and permanet external drains, and varieties of chemo for long periods of time….my husband was on 5FU and radiation for 5 weeks and done. Now he did have nodes infected and I won’t deny I’m expecting the worse, but is it possible he could never have a blockage? Or do we need to also stay on top of this worry?

    #39362

    In reply to: Update on me

    devoncat
    Spectator

    Rick,
    Sorry about the pain…perhaps it is chemo related. My landlord (a doctor) was estatic I had pain and generally felt like pooh on chemo. He said that was a good sign…dont really understand why.

    Another chemo treatment to try is 5FU. Xeloda came out of that, but for some reason we have seen people on this board respond to one and not the other. I guess it is how your body metabolises things.

    Crossing my fingers for chemoebolization and good news regarding xeloda on your next scan. Hope the pain is under enough control that you can enjoy your daughters birthday.

    Hang in there.
    Kris

    cinnamin
    Spectator

    First off, my apologies for taking so long to update. It’s been quite the ride, as you all well know!

    To recap so far, my 78 year old Dad underwent surgery on Feb. 3rd with the GREAT Dr. Hemming in San Diego. 3/4 of his liver was removed, along with the gall bladder and bile ducts. Intestines, bowels, and anything else in the immediate area was rerouted, resected, and generally messed with. He stayed in the hospital for a couple of weeks, and home health care for a few more. A lot of complications arose from a rogue infection he picked up in the hospital.

    We met with our oncologist and decided to proceed with chemo. Even though my Dad had clean margins, Dr. Hemming told us that if this crap returns there’s nothing left to operate on. So…..a beautiful clean PET scan and wonderful blood work gave us the go ahead. Our oncologist sent my Dad’s tumor to a geneticist to figure out the best course of action. In his words, ” We want to give you a better chance of no re-occurance, not kill you”. They came back with 5FU, Oxaliplatin, and avastin. Decided to hold off on the Avastin because of the side effects. His first infusion went okay….have to say the port was a Godsend! For the first 48 hours his only side effect was hiccups. We discovered that pineapple juice helps tremendously…who knew??
    By day 7 my Dad was feeling like he was run over by a Mac truck. He hurt everywhere and lay in his bed for 3 days. The weight that he had so painstakingly gained back went away. By day 11 he was feeling okay, but his next infusion was only 3 days away. His bloodwork came back kinda iffy, but they decided to go ahead with his next treatment. Here come the hiccups!
    Day 4 hits, and my Dad is so tired he can’t function. This prompts an ER run, where we stayed for 7 hours. They requested a return the next day for more bloodwork, which we did. Day 6 arrives bearing a temp..BAD news. The rapid rise sent us back to the ER. More bloodwork, and we learned some new terms.
    Neutropenia and absolute neutrophil count (ANC) were the terms being tossed about. He was admitted to the hospital. Bring on the antibiotics!
    An ANC of under 500 is considered critical. At admission my Dad’s was a whoppin 33, and continued to drop to a paltry 4. Neupogen was administered. My Dad slept, and kept on sleeping for 2 more days.

    So here we are. We brought him home yesterday when his numbers rose to acceptable levels. He’s pretty darn tired still. We have an appointment with the oncologist Monday. He’s scheduled to resume chemo next Friday, but there’s just no way that is going to happen. SOMEthing needs to change, because he can’t go through this every 2 weeks. He’s back down to 140 (they want him around 170) and boy is he angry! Right now he says that if it comes back, oh well….he doesn’t want to go through life like this! I totally get it…..chemo has not been nice to him. We will talk to his Doc, see if we can change things up so he doesn’t end up in the hospital every 2 weeks.

    I just have to say…..I am constantly amazed and in awe of the people I see in the infusion center. These people are the sickest you can be, yet still have time for a quiet smile. Such dignity and grace….I am just stunned by your spirits. I pray for a cure and good health for all of you

    lsisman
    Spectator

    Here is what I don’t understand. My husband had F5U too for 24/7 and radiation 5 days a week for 5 weeks. That was it. They said you wait one month after that then do labs and scans. All came back fine, so we just go back every 3 months. What I want to know is why is your husband having to go through so many chemo treatments? Why not just the first set and see how that did? Why didn’t my husband need more than one set? Everyone’s treatments and type of chemo and length of time etc are all different. It kills me. same type of cancer should be one strong documented approach. I can never understand why they are all different, by doctor, by person. My doc said 5FU is the most effective, if so, why didn’t everyone get that? My impression is that since your husband is having so many treatments, that he will need some time to stabilize himself. What I heard was the radiation works up to a month after it is done, not sure about affects of chemo in the system. I would love to say that you have to trust your doctor’s direction, but then again, I’d so disappointed in the medical profession. Only thing you can do is ask why in 3 months and not 2 or 1…

    #39007

    In reply to: Total resection

    lsisman
    Spectator

    My husband’s oncologist said that 5FU has the best results for chemo for this type of cancer. No other options were given. What I find amazing is how everyone is put on something different, or a combo of things and different lengths of time. You could think they all would have the same info and treatment would be very similar. Or is treatmetn different if it is a liver resection, or a whipple, or pancreatis partial removal….Also was told chemo doesn’t really work, but enables radiation so you must have chemo WITH radiation . And radiation and chemo should be a must after CC surgery as insurance to get any microscopic cells if lymph nodes infected or not. People who didn’t have radiation or anything, and had clear margins. GOT IT BACK!. What I have also found is that this CC affects everyone different, meaning you think you are a close match to someone’s similiar case/story but treatment varies and recovery issues vary and some live and others don’t. It can make your head spin. Drives me crazy.

    #38415
    lsisman
    Spectator

    Well all we have learned is to have chemo and radiation when nodes involved and we have heard too that chemo is not too effective over this type of cancer,after a whipple but is an enabler to the radiation. So you have to get both. My husband was only in the hospital for 6 days after the whipple but the only chemo suggested to us was 5FU and we were told it has the best results. Funny how everyone is put on different stuff so who knows. Unfortunately, my husband is down 80 pounds, he continues to lose weight and is eating and drinking Ensure and putting in the calories. All labs and scans are good so we can’t say he has cancer in him….He is in pain, drugged up, stomach hurts all the time and feels full, we feel he should be on the up and up after whipple was Jan 4th so we are trying to get an appt with the surgeon again since he did the work and may know what is going on. Such a long road and he is so sick of feeling like crap every day!

    #37120

    In reply to: why x-ray with MRI

    lsisman
    Spectator

    My husband’s oncologist said that they best results for this cancer comes from getting 5FU chemo. I agree that from what you read, different things work for differnt people, but if there is a “standard of Treatment” then I would assume everyone would be getting the same thing and they aren’t.

    #3445
    reddobie
    Member

    Hi all..thankyou for all the info I recieved on this website..my brother who lived in Berlin, Germany passed away last sunday after a 14mo battle with a klatskin tumor…I would like to briefly offer a synopsis of his battle..diagnosed 14mos ago, inoperable klatskin tumor…received 5Fu and Cisplatin, which initially shrank his tumor by 1/2…but problem was all the stent infections, stent blockages, stent changes..that is what ultimately did him in I believe..he eventually developed bile sepsis and never made it out of the hospital after that…he only had one dose of Gemzar…He was the picture of health for 1 year solid…looked great, ate great, walked for miles all over, we visited him twice during that time, and you would never even know anything was wrong…then the all the stent problems started…and that was that…two months later he died…I’m sorry if this is blunt…but it happened exactly as I had read on the cancercompass website…perfectly fine for one solid year…then the stent problems, then two month later he was gone…I know there have been people who have not even had that long with their families, and others who are still surviving long after diagnosis…god bless each and every person, friend and family member to enjoy what time they have with each other and always hold onto hope..my brother was told he didn’t have long, and he survived 14 mos to continue to enhance our lives…Godspeed brother…and everyone hold onto hope always!!!

    leolangheim
    Spectator

    the 30 minutes turned into 2.5 hours but at least it’s in the past now. I feel a little better if that’s possible. I think it just helps to know that I am doing something to fight this monster.

    Work has been wonderfully accommodating to me. They have been very flexible with my comings and goings as treatments have moved along. I am on 5FU daily 2 in the AM and 3 at night. All seems to be going okay so far. I’ve also setup a few vacations with the wonderful prodding of my loving wife.

    We’re going to Chicago this Friday thru Sunday so we can show our almost 4 year old son some of the museums we’ve always wanted to go to with him. We’ll be staying downtown within walking distance of the Shedd Aquarium and Adler Planetarium. I’m looking forward to showing him some of my favorite places from my childhood.

    I have a little hiccuping from the chemo or steroid (I read a bit about it here before too). I’ll ask about an Rx soon if I feel I need it.

    I am still going back and forth a bit on what more could I have done. I found out my friend D (Rick knows who I am talking about) did in fact have brachiotherapy while going through the Mayo Protocol out in AZ but his was more from a learning/teaching perspective and a stab in the dark as his CCA sounds like it was growing similar to mine. In other words, his simply looked like progression of PSC and NOT CCA with the exception of a slightly rising CA19-9 and positive FISH tests.

    My wife also convinced me to let her family help so we’re taking a 2 week Alaskan cruise starting soon. I’ll be having an early and late chemo IV session as a result, but according to the docs/nurses, one appointment won’t make a difference and it’s a quality of life issue. My family has always known that I have wanted to do an Alaskan cruise so it’s touching and breaking my heart at the same time.

    Our son will be going with us. My wife and I are both not willing to be away from him for very long with what’s going on AND it’s a family journey we desperately want to do together.

    Anyway, no more updates from me right now. Just trying to take it day by day. We met with the Cancer Psychologist today and she’s going to help us learn to deal with it and eventually help us figure out how to talk to Henry as saying ‘daddy’s sick’ disagrees with our philosophy. We don’t want him thinking if he gets sick he might have cancer, etc.

    Thanks for listening and thank you all for being there for me.

    With love and light,

    -leo

    #37009
    leolangheim
    Spectator

    Rick,
    Thanks for all the support you have given me and continue to give so willingly. I still remember chatting about J-pouches way back when. Life seemed so much simpler when I was just struggling to recover from my total collectomy back in 2001/2002.

    I believe that the chemo they are going to start me on is going to be Gemzar IV and 5FU/capecitaben (sp?) oral. I can double check in a bit but I don’t want to wake up my son by heading out to the car for the paperwork they gave me. He’s thankfully napping right now.

    Thanks,

    -leo

    #3364

    Topic: Denial

    in forum Introductions!
    tinall
    Member

    My Husband was diagnosed in June ’09 with cholangiocarcinoma that is unresectable, at that time he was told that his prognosis was 9-12 months. He completed chemo (gemzar and cisplatin) in the fall and a CT was completed at that time (Dec), which his Oncologist had stated that he was staying with his same prognosis, however they may have bought him a couple of months. Chemo (5FU) and radiation were completed earlier this year. They tell us that the radiation continues to work for approximately 2 months after treatment is complete, therefore we expect a CT to be scheduled approximately the beginning of May. Meanwhile, I have had numerous family members (including his parents) and friends approach me to say congratulations that my husband had told them that he is not dying and/or that he has 5-7 years to live. We have 4 daughters and they have also heard him tell these tales. I have told them that he is in denial and that I will keep them posted. As for his parents, I had called his mother to let her know that he is taking a couple vicodin over his morphine every day and that he was in denial. She got very upset with me that he would tell his family members a lie, I tried to explain that as long as he was taking his meds and living a quality of life that him being in denial was fine and that he would accept it in his own time. My concern is that today is 9 months and it’s been months that he’s been in denial, recently he even tried to tell me this also. I have been with him to every appt, no one has told him this. Several years ago he was also diagnosed with Bi-Polar and Narcissism and he has been violent. The anxiety I fear is that anger and mania may coincide. He recently had a dream and woke up strangling me, these are his words that he told our 2 youngest daughters and myself, I actually slept through it. I sleep on the couch now and he continues to work 12 hour days 6 days a week. Not sure what to do or what to expect, please help!

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