Search Results for '5fu'
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Search Results
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In reply to: Intro & Advice Needed
Hi APK,
Welcome to this great site, but sorry you had to find it. My mother was diagnosed with CC in July 2012. We are based in Melbourne as well and being treated at the Epworth.
Mum had a whipple procedure done in July. Cancer had not spread to other organs but there was lymph node involvement. She was staged as iib. She was on 5fu and radiation for 6 weeks. Unfortunately, the cancer returned and she was immediately put on gem/cis. She did not tolerate this very well. She had contracted every super bug known to man. We had to give her a break for a couple of months. She had a CT in January with remarkable results. No signs of cancer. Unfortunately, she had another scan a week ago and there are signs of swelling on the liver. I don’t know how, but the oncologist is sure it is the cancer spreading. She is now on Gemzar for 5 weeks.
I wish I could provide you with more useful information, but don’t know how to.
Anyway, please email me if you like to meet up and discuss.
Take care
IliasP.S. where is your father being treated and who is your oncologist?
In reply to: NIH trial – still working!
Hi Melinda,
I was adding your data to my cholangiocarcinoma database and your posts on your participation in the NIH trial really got my attention. Thank you so much for being a pioneer in this clinical trial and posting your results to the discussion boards.
Similar to you, my wife has intrahepatic cc and had a resection (72% of liver removed for a 6.4 cm tumor) with clear margins. Unlike you, however, she had a single positive lymph node and adjuvant therapy. The therapy consisted of 4 cycles (rounds) of GemCis, GemCis on both days 1 and 8 and a Neulasta shot for low WBC count on day 9, and the 3rd week off. Also, she is scheduled to have 3D radiation therapy with 5FU starting next Monday, which will be every M-F for the next five weeks.
She had an enhanced CT scan on 2/15/13, which was 0.43 years after her surgery, and it showed no signs of cc. I suspect recurrence will occur within the first year after her surgery, since that is the case for 19 out of the 24 patients (79%) in my cc database who have intrahepatic cc and have had a resection. Maybe she’ll fair better because only three of the 24 had radiation with chemo and for two of those the chemo was cut short. When, and if, this occurs, this clinical trial will definitely be a possible course of action.
Bruce
In reply to: my father
Mao,
Your fathers story sounds similar to mine in terms of the type and location of the tumor as well as the surgical procedure. It was recommended that I have adjuvant treatment which included 5fu and radiation because they were unable to get clear margins. For me, I wanted whatever they felt would increase my odds regardless of the treatment side effects. It obviously is a very personal decision. Because the additional treatment improved my faith and hope of a good outcome, I found the treatment itself to be not a problem. Did the adjuvant treatment prove to be effective? One can only speculate but I have no regrets – I believe I made the right decision and I’m sure you will too. May God bless you and give you wisdom and peace concerning your fathers treatment options.bob
In reply to: Clinical Trials
Hi Laura,
I’ve told you a few things before about my daughter, but I don’t think I am repeating myself. If I am, I apologize. My daughter participated in a trial that sounds similar to what you are talking about. It was at the University of Michigan Cancer Center. My daughter had to give blood, saliva, cheek swab, and have another liver biopsy for this study. We haven’t heard any results yet, probably because she is in the process of having surgery at the end of this month. When she was first diagnosed back in Aug. 2011, she took part in a clinical study where she received Gem/Cis and 5FU all together. It did cause a lot of shrinkage in her tumors. She had to quit the Cisplatin after a long time because her platelets kept going too low and her doctor was afraid that she might develop kidney problems from being on that particular chemo too long. She has done well on all of her chemos and has also had Theraspheres one time. The verdict is still out as to how well that worked. She is still doing very well and like I said is going to have surgery #1 of 2 on March 26th to make sure she has no tumors outside of her liver, remove some small tumors on the left side of her liver, and cut off the blood supply to the right side for a liver resection to be done 6 weeks later. I hope this helps some. Take care.
Hugs,
-PamIn reply to: Fighting girl…new member!
Hi Laura,
I wanted to welcome you to this site. I am sorry to hear you have CC, but you are definitely at the right place for support, advice, and friendship. My daughter has CC and has been on all the chemos you have mentioned, gem/cis, just gem, 5FU, and Xeloda as well as oxaliplatin. I think 5FU was the easist for her to tolerate, but is kind of a pain because you have to carry it around with you for 48 hours. Her oncologist switches hers when the chemo starts not being as effective. She has been on gem two different times, so they can go back to one with a different combination. My daughter has been doing this for 18 months and is set to have surgery March 25th. She was told at first she was not resectable, but things change.
As for diet, Lauren did eat what she wanted and what made her stomach feel good, but gained a bunch of weight plus she was inactive. So now we are eating very healthy, and she feels great. She can still have whatever she wants, but is making smart choices. Since Feb. 11 she has lost 14 pounds. She is also walking every day on the treadmill. She is up to 25 minutes and we are trying gradually to get up to 60 minutes a day.
There is no excuse for what that nurse said to you. There are always going to be people that don’t think and say the wrong things. I’m sure she meant well, but said it in a dumb way.
I hope I have covered everything you are concerned about. It is so scary, but as you go on things settle down a little and I hope it does for you. Please keep us posted. All the best.
Love and hugs,
-PamIn reply to: my father
Hi,
Fever is not common after biliary surgery.Most likely the infection is related to the surgery. In general, it require at least 14 days of antibiotics treatment like ciprofloxacin 400mg twice daily or levofloxacin 500-750mg daily for 14 days to
eradicate the infections; If they put a stent or two in the bile duct to facilitate the bile flow, the infection may be more often. The rule of thumb is if your father has chill and the fever is >39 . Bring him to hospital right way so they can give him antibiotics or ask the doctor to prescribe levofoxacin 500mg daily ,number 14-21 tablets as standby for him to take at home when symptoms occur. In normal situation, the fever will go away in a couple days;keep your father hydrated is also important(6 glasess of 240ml liquid).
Adjuvant therapy ,as far as I am concern , I will do it with no reservation at this time. I do not know what kind of profession you are in, but you may have done research and know that Liver is the only organ that can regenerate itself; that means as few as one cancer cell left inside the biliary system, it will regenerate together with the healthy cells in the liver of the biliary tract ; therefore I believe no matter how well the surgery turn out, due to the fact that 50-75% of cholangiocarcinoma cases may recur for the rest of our life time.( I am a patient of intrahepatic CCA) and adjuvant chemotherapy therefore is warrant to have it done.
Adjuvant may be one of the following.
1. Gemcitabine ,3weks on and one weeks off. (easy to tolerate)
2. Gemcitabine + oxaliplatin. (better tolerate than gemcitabine + cisplatin.)
3. Gemcitabine + cisplatin ( widely used as a reference standard for CC)
4. 5FU infusional pump+ Leucovorin +oxaliplatin (good alternative to # 3)
5. and of course gemcitabine follow by chemoradiation with capecitabine.For systemic chemotherapy for treatment of advance cholangiocarcinoma
below is the link.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
By the way, may I ask where you get your treatment,in the capital of local hospital;Can you give us any names of the hospitals and doctors that help treating your father . We are an international community and some one in China,like you, may want to know that information too to help their parents or relatives. As you know liver disease is much higher than in China than in the States. your info. will help others in China as well.
God bless
In reply to: Fighting girl…new member!
Hi,
Base on your message, it looks like you have extrahepatic CCA (ECCA)
For some unknown reasons, 5FU and its pill form Xeloda (capecitabine) works better on ECCA than intrahepatic CCA.(ICCA). So I think it is a good choice to switch to 5FU + other chemotherapy or targeted agents.But GEM/CIS is the regimen that most doctors refer to use in cholangiocarcinoma because of it overall response rate is one of the highest (around 22-30%).The rule of thumb is that if a regimen works ,doctors wiil not change it until disease progress or intolerable side effect occur.. Most of the package insert of the chemotherapy agents will have that in the “Indication” section.
Therefore your doctor was not wrong to wait until the tumor started not to respond to the GEM/CIS regimen and switch to 5FU. The only way to know whether the regimen is working is a CT scan after the chemotherapy was given a period of time or more. No one and I do not think you want someone to anticipate your disease progress and give you something else without an evidenced-base diagnostic result- Unlike antibiotics, which they give you an empirical antibiotics first in ER and finally give the appropriate antibiotics when the blood culture is done and give the doctor or pharmacist the bugs that they know which antibiotics and frequency they should used for your infection. You do not want them to give you chemotherapy to try on you. chemotherapy agents are much toxic than antibiotics and other medications.
When the disease did not response the current chemotherapy, that means the cancer cells had developed a mechanism to resist the effectiveness of the chemotherapy agents that are in use and it make no sense to continue the same thing if it is not working.that is why the drug company advice for most of the chemotherapy agents in the package insert, continue until disease progress,that means until the regimen no longer works.I am not a doctor but only an old patient of ICCA for 45 months now. I am a medical professional also. My opinion may be wrong but that is the choice you have to make when you try to gather info. from the internet.
Princess Margaret Hospital is one of the best research hospital in Canada for cholangiocarcinoma. I took my Dad there several years ago for treatment of lung cancer and I know how it feels about the personal who works there, You may see an oncologist with residents doctors; the waiting area are small and full of a lot of cancer patients that do not know what comes ahead in their lives; you need to go to a different floor to get register for lab work and other things and there are a long line ahead of you. The nurses are over work and under paid and take care of several patients at the same time and there are training goes on for nursing as well as in other medical fields.So please be kind and forgive their choice of words,they wants to do good,but they may not have the capacity of keen sensitivity like you have-can read body language and among other things. There are not many medical professionals born with the gift of comforting the sick and satisfying the needy patients .It takes time and emotional maturity to develop such skill .
You have come to the right place to get emotional support from all our moderators as well as seasonal caregivers and patients; they will provide you the vast emotional support to boost your fight spirit, to encourage you when needed; to comfort you when sensed; and above all provide you a place to vent.
This site is very different than some other sites that is only operated by one person and have nothing to enrich our live toward understanding medically and emotionally about cholangiocarcinoma.
God bless.Topic: Fighting girl…new member!
Hi everyone…my name is Laura aka ‘fighting girl’ (lol)! I have been a lurker here for a bit and thought it was due time to intro myself and join the discussion. I am 49 and was diagnosed with cc in July 2012…in late June my hubby came home from work, looked at me and noticed that I looked yellow. That resulted in a trip to emerg, and a three week hospital stay.
After two ERCP procedures, ultasounds, a CT scan and an MRI, plus a liver biopsy, it was determined that the blockage in my bile duct was a tumour. It had likely been there for a bit as it has spread to make some masses on the liver as well. I went to see surgeon at Princess Margaret here in Toronto who said it is inoperable. They stented me, which didn’t work well, so,ended up with a percutaneous drain, which is still with me…this is a tube that is inserted inside to bypass the blockage and allow the bile to reach my small intestine. From there, onto the oncologist who felt chemo would be of benefit to me given my otherwise good health.
Within a month I was into a gem/Cis chemo regime at Princess Margaret hospital, here in Toronto. Several scans later, and tumour marker blood tests revealed that I was responding to chemo…marker dropped significantly and tumour showed small shrinkage. I have been on this regime for roughly six plus months. Much to my frustration, however, my most recent scan done two weeks ago shows that the cancer is active again, the masses getting a little bigger and the marker being up.
Oncologist told me that in many cases people don’t respond to the Cis/gem regime and I was fortunate that I did and now we should switch to a different regime, namely 5fu, which may work for me as it has worked for others. If this fails, my blood is being tested for a clinical trial which aims to target the tumour more directly.
I guess I am writing today for encouragement and emotional support…something the drs and nurses sometimes seem to forget in their daily contact with people. I couldn’t help but get the feeling that the oncologist was disappointed with my last result…this is something I sensed (I am a very sensitive person to peoples body language) and didn’t really make me feel much better emotionally about the change in direction. I feel I am in a good position to fight provided my medical team supports me one hundred percent…it upsets me to feel like maybe they do or maybe they don’t but they are just going through the motions.
I am also somewhat annoyed that they didn’t anticipate the possibility that the first regime might stop working at some point soon, as cancer is smart and regroups to fight….it would have made sense to me to change regimes while the cis/gem was still working, kind of tricking the cancer and thus leaving the door open to its use again at some point hence. But now I feel like we are ‘locking the barn door after the cow has escaped, and we are playing catchup with this situation. It was eight weeks since my last scan and no tumour marker
Tests…did somebody drop the ball?The worst part of my week came when the oncologists nurse called me to book an appt for Porto cath insertion which is necessary for the 5fu treatment…she gets on the phone to me and opens the conversation with ‘I am sorry to hear the bad news’….I was floored. What bad news? I realize my scan showed changes but I understand this happens all the time with cc,regroup and fight, regroup and fight….it is not a straight road. I felt like saying,’thanks for stomping on me emotionally…you could use some sensitivity training.
I am in need of some continued encouragement to overcome all this negativity. I am also keen on any dietary advice you may have to offer…I have heard that sugar, dairy and meat is a no-no, and that a vegetable based diet is helpful. I was reading about Ted’s diet on the Earth Clinic website and it falls into this line of thinking.
Thanks so much for letting me bend your collective ears. Hoping to get to know you all better in the months ahead,
Laura
In reply to: Caregiver’s Bill of Rights
Hi Cristerry,
My daughter, Lauren has been on oxaliplatin and 5FU( that is the one you wear at home) at one time or another. Oxaliplatin is the rougher of the two. Lots of neuropathy in hands, feet, and throat. You cannot drink cold drinks with this chemo or it feels like shards of glass or your throat is closing. Wear gloves when handling cold food or frozen food. My daughter had an allergic reaction to oxaliplatin on the 6th treatment of that particular chemo and cannot take it anymore. She turned beet red, thought her throat and ears were closing, and broke out in hives all over. This is not uncommon for this chemo so be aware of the signs generally around the 6th or 7th treatment. 5Fu is relatively easy for Lauren to handle. Wearing the pack is a pain, but the chemo was ok. I also was trained by the nurses to disconnect Lauren myself at home, which was a lot more convenient. She hasn’t had the other two chemos so I can’t comment on those. I am wishing you and your husband all the best.
Hugs,
-PamIn reply to: Caregiver’s Bill of Rights
Hi,
the one you take home should be the 5FU pump infusion for 46hours.
but what is the name of the drug that your husband had while in the cancer center .Was it oxaliplatin or irinotecan?
God bless.In reply to: Caregiver’s Bill of Rights
THANK YOU! Just today I was saying to myself, “I wish someone would take care of me.” (then felt guilty) My husband has started a new chemo regimen that includes 5fu. Along with a 5-6 hour infusion at the cancer center he has a bag that he takes home that infuses for 46 hours. Can any of you share your experience with this type of regimen?
In reply to: Newly Diagnosed
Hi,
To answer your question, No, I do not live in Ohio.
Had any experience with James ,YES.
I think it is a go to hospital if nothing else works and clinical trial is your priority over current traditional chemotherapy.
What is the name of the clinical trial medication that they are running out off?
What will you do if next time they offer another clinical trial to your husband.?
Knowledge is the key,but you have to read fast,start with Marion’ s suggestion,read the link,.http://www.cancer.org/acs/groups/cid/documents/webcontent/003006-pdf.pdf
If I remembered correctly that your husband were on Gem/carboplatin and it works, stays with the regimen that works until otherwise.The oncologist can order and give your husband packed cell and platelet transfusion and injection to boost your white counts.This is a general rule for me on taking chemotherapy.If Gem/Carbo lost its efficacy;ask the oncologist switch to other regimen .Side effects of tinnitus is not on oxaliplatin but may cause hearing loss.so there is a trade off on that if platin had to be added.Oxaliplatin is the 3rd generation of the platium .there are many traditional chemotherapy like 5FU,Xeloda,if gemcitabine don’t work. there are other agents and the oncologist can often add targeted agents like Avastin,sorafenib,Tarceva ,cetuximab,panituzumab .and cediranib to the regimen to see which one works better.
If all these regimen attempt failed, then I will consider clinical trials if time is running out . Below are the chemotherapy and targeted agents and regimen that have been used and proved to be useful for CCA. You may also check whether the clinical trial drug that Ohio State offer is on the master list of drugs development for CCA– the second link-(this shopping list is more or less like the list for researchers and clinicians to decide for which clinical trials they want to start or the clinical trials that just had started.(before Phase I?)
As a rule of thumb,if a clinical trial can go thru phase I and II and reach phase III, new drug approval by FDA will not be far behind for that study if no unexpected things pop up along the way.
this is the link for chemotherapy regimens
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
this is the link for the manufacturing side of the clinical trials regimen suggestion.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70877#p70877Last but not least, I am only a patient and not a professional doctor for this disease.
God bless.In reply to: No Resection Because of Multiple Liver Mets
Julie,
Looking at your past posts, I see that your father’s oncologist did not recommend adjuvant therapy for your father following his R0 resection.
I checked my limited database developed from about a 9% sample of previous posts to these boards and found the following regarding adjuvant therapy for intrahepatic cc patients who had R0 resections.
From May 2001 to June 2008, 5 patients had no adjuvant therapy, 2 had chemo only and 1 had both chemo and chemoradiation.
From November 2008 to Sept 2012, 1 patient had no adjuvant therapy, 7 had chemo only, and 3 had chemo and chemoradiation. Chemoradiation included radiation combined with 5FU or Xeloda pills.
So, it appears from this limited data, that oncologists started changing their tune about adjuvant therapy being helpful to R0 patients around 2008.
Since mid-2008, the only oncologist (besides your dad’s doctor) I have found who didn’t recommend adjuvant therapy for an intrahepatic cc R0 patient, was associated with Mayo Clinic in Rochester, MN. Others who did were associated with Emory University Hosp., Atlanta, GA; Sherman Health, Elgin, IL; Kaiser; Cleveland Clinic, Cleveland, OH; University of Pittsburgh Medical Center, Pittsburgh, PA; a hospital in Lebanon; Jewish Barnes, St. Louis, MO; Kings College Hospital, London, England; and Ochsner Hospital, Jefferson, LA.
Bruce
In reply to: New to Board
Mandy…nice to hear from you and double nice to know that you are well. First and foremost, fingers are crossed for a terrific scan results. I can relate to your feelings of anxiety – on this board we call it “scanxiety.”
According to your postings, you will be using Xeloda (very similar to 5FU.) The most reported side effect seems to be hand-and-foot syndrome, which can be treated with tons and tons of moisturizing creams. In fact, my friend slathers her hand and feet with lotion and then wears socks and gloves for the night. Hmmm….not sure how she scratches though.
Anyway, others with much more personal experience will chime in real soon.
So glad you reported back in.
Hugs,
MarionIn reply to: New to Board
Hi There everyone, its been a while since Ive been on the site due to not being too well from chemo I guess and a little ‘information overload’ and felt the need to stop researching for a moment! It is exhausting.
I read with interest the posts from tripleblessed and wallsm. I was diagnosed and operated on in sept of last year. I had a Hilar cholangiocarcinoma on background of presumed intraductal papillary mucinous neoplasm (radial R1 margin) or in short terms I had a 6cm tumour removed along with 70% of my liver, bile duct and gall bladder and then a bilary reconstruction. They also took lymph nodes that tested negative. around 6wks after surgery I started gem/cis and am currently half way through the last cycle (total 6) woohoo!!!!
At first I was told that I couldnt have radiation but being stubborn I decided to get other opinions and now I am about to start chemoradiation (5FU) in about
4 weeks time.
I should mention that I am 39 years old and am also triple blessed with 3 gorgeous boys!
I have so many questions about what Im about to go through!! I am so nervous, I go for my first CT scan since the surgery on Tuesday and am terrified. But am trying to stay positive.
So any insights into both the chemo and the radiation would be wonderful. I am told that I will probably have the pill form of 5FU and compared to gem/cis its a walk in the park?
Thankyou for all of you insights in advance. It truly is wonderful to find such an amazing group of people with such amazing stories.Mandy
