Search Results for '5fu'
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Hi all,
After just over a year of being stable on GemCis with stage 4 ICC, my mom, Grace, progressed just over a month ago. Since then she had one dose of Irinotican 5FU but stopped when she had to be hospitalized for congestive heart and fluid issues. Her bilirubin was also elevated to 3.0, scrapping plans to get her on Tarceva/Xeloda.
However the pulmonary team relieved about a litre of water around her heart and she has since been discharged, feeling better than she has in a long time. Her bilirubin has decreased to 2.4 and she is walking, cooking and going about her own business at home.
Yesterday, we had her first visit with her oncologist at MSKCC in 3 weeks, and he broke the news that he didn’t think she could continue any chemo treatments and that she should start hospice care at home.
This seems premature to me, as her bilirubin levels are declining and not astronomical, her performance is improving after dealing with the heart condition, and we had not really tried any of the second line treatments.
Has anyone heard of treatments available for someone ECOG 1-2 with grade 2 hyperbilirubinemia? Perhaps low dose chemotherapy?
It just seems too soon to throw in the towel.
As an aside, this board has been such a support and resource over the last year. My family and I are so thankful for the community here.
Thanks,
JeffIn reply to: changing chemos
Hi,
Actually I think your oncologist did his/her homework for your husband’ CCA.
The Gem/Cis is not an universal treatment of choice for ICCA but it is easier to prescribe since that is appear to be the easiest and most prescribed regimen in CCA.But other regimens work as well as Gem/cis and cause much less side effects.
1.Xeloda( 5FU in oral form) provides patient compliance by the oral route;
2,Oxaliplatin is much less toxic than cisplatin;unlike cisplatin, oxaliplatin is not associated with significant renal(kidney) or auditory toxicity(tinnitus) and hematological toxicity (blood cells) is usually mild .
3.Both platium agents will cause nausea and vomiting but usually it will be taking care by the pre-chemotherapy antinausea medications, such as Aloxi,Zofran and Decadron .
4. Both platium agents will elevate the hepatic enzymes and bilirubin and the same apply to both capecitabine and gemcitabine.If the the tumor is “stable”,and nothing else changes significantly, I guess your oncologist wants a consistent (5FU) level from you by asking you to take the Xyloda twice daily after meals.And he/she wants to start use one of the agent from the platium family-oxaliplatin to see whether the result will be better than gemcitabine.
It is a cautious decision and I like your oncologist. In short, every body can recommend the use of GEM/Cis first,but I think your oncologist does more than just that. May I ask what is his/her name and where he/she works?
This is just my opinion, the rest is up to you. remember I am just a patient as your husband havine the same ICCA and I am not a doctor.
God bless.Hi,everyone,
NOTE#2 about stats of biliary cancer for 1,057 patients.
(item #6 may be of interest if if you have resection done.)
In a study named ” Biliary Tract Cancer: A large institutional experience” done by Mairead McNamara,Jennifer J.Knox etc. at Princess Margaret Hospital among others. This study involved 1,057 pts with diagnosis of biliary tract cancer were followed from diagnosis to death between 1987-September,2011.
Findings:
1.Among others,,definitive surgery was performed on 41% of the 1,057 patients.
2. ADJUVANT chemotherapy(ct) or concurrent with chemo-radiotherapy (ct/R) were given only in 19% and 8% respectively; However,35% (ct) and 2% (ct/R) were given for UNRESECTABLE or metastatic disease in first-line palliative treatment of ALL biliary tract cancer respectively which included gallbadder and ampulla of vater cancer.3.Gemcitabine alone (55%) and Chemo+radiation(30%)and 5Fu (9%) were given in the adjuvant setting ; while Gem-5FU/capecitabine (46%),
gemcitabine alone (22%) and GEM/platium (18%) were given to the unresectable or metastatic disease group respectively in order of utilization frequency.
4.Most of the cancer were diagnosed at the stage IV ; for example,
30% of the distal bile duct CA; 52% of the Klatskin CCA; 59% of the intrahepatic CCA were discovered at stage IV.5.Surgery were performed on 48% of the distal bile duct patients; 30% on Klatskin patients and 59% on intrahepatic CCA.
6.Median time to recurrence post surgery are as follows;
18.8 months for distal bile duct patients; 17.6 months for Klatskin and 14.2 months for the intrahepatic CCA.7.Of all thos 1,057 patients, 267 (25%) patients are still alive.
Conclusions:
This is a very large biliary cancer cohort study. The different locations of the cancer clearly have a different prognosis. However ,therapeutic advancement mandates finding additional drug option and appropriate adjuvant care.God bless.
Hi,
“Meanwhile I would love to hear from members any experience on chemo-sensitivity testing- specifically were the drugs still given despite the test showing resistance to them?”
I believe your brother has the extrahepatic kind of CC base on the message you wrote on the board.
Chemo-sensitity test (or biomarker test) is NOT currently recommended by ASCO(American Society of clinical oncology –the largest medical oncology group in the world ),as a prognosis useful tool to determine the outcome of the systemic treatment. Most of the oncologists will regard the test as another means to know more about the disease state of the patient, some will pay attention to the test a bit more but others don’t.The oncologist’s own experiences should be the most important factor to treat patients in general.The reason is simple ,up to now ,there is no standardized values among labs to report the results. If you read the cover letter of the test report carefully, you will notice that the testing company will NOT guarantee the result of the chemo test that will produce benefits that is directly as the result of the sensitivity of each of the chemo agent they performed.
On the other hand, the test ,apart from the the standardized problems; it still provide you a road map in theory, to choose the most possible effective chemo-agent for your brother’s treatment.In your brother’s case, the testing company indicated that your brother is resistant to Gemcitabline,cisplatin and 5FU. So these three may not be the best agent to use on your brother; synergistic effects means the combination of the chemo agents used provided better than each agent when used alone.
(ie: 1+1=3 or 4 instead of 1+1=2 ); But if the chemo agent is not very effective by itself then the synergistic effects will be minimum at best.
Gemox+ erbitux which had high hopes in the past to treat this cancer had just been indicated by its researcher of the “Bingle Trial” to be more or less the same as using GEMOX alone without Erbitux.
Erotinib(Taeveca) by mouth,like gefitinib(by mouth) are EGFR inhibitors; on the other hand sorafenib,sunitinib (by mouth)are VEGFR inhibitors that can be considered if your Dr.K agrees with the chemo-test report. But for the pump I think most likely they will use chemo agents other than Gemzar,Cisplatin or even oxaliplatin or carboplatin; FUdR may be a possibility but it is related to 5FU and capecitabine.
I am only a patient like your brother and not a doctor;but I hope the info helps you a little bit in understanding about this rollar coaster ride.
Below is the link for further reading about this not so rare cancer.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8426
keep in touch
God bless.My name is Jyoti and I try to keep researching on behalf of my brother who was diagnosed with stage 4 CC in Feb-2012.
We, who have our old parents back home in India always are worried to receive that dreaded call. And that call did come for me on Mar 1, 2012 very early in the morning. But it was not my parents, it was my elder brother, my only sibling.
He called from the hospital saying he needed my help in being seen by some one specializing in CC. A day before he himself had found out that he had stage 4 CC and since then he and all of us were on internet trying to figure out what he was dealing with. First, I was in denial, how can it be stage 4 with him not knowing.
He is a Management Consultant who was traveling at that time and was at a client site, when the client pointed out that he looked pale and yellow. He got home, went to hospital and this is what he found out. There must be some mistake in interpretation. Right? Nope.
Since then I have been on this site and other similar sites trying to understand more. I am so Thankful to the community and got so much hope and information after reading the posts (Thanks kris00j and others).
Me and my husband fly back and forth to NY many times to be there for important appointments, and I have had a trip to India for few weeks to support our parents. My sister-in-law who is the primary care giver is overwhelmed, managing his appointments, diet, kid’s studies and activities (kids are in India) and expenses (self-paid medical bills).
I am trying to help by reading up as much as I can and helping my brother and sister-in-law. I wish I lived closer and be with them more often.
Anyways coming back to my brother’s case, he managed to see Dr. Fong who he firmly believes can help him within 2 weeks of finding out in mid-march. Dr. Fong referred him to Dr. Kemney for chemo to shrink the tumor such that it becomes resectable.
Within his first week, due to the alarmingly high levels of Bilirubin, a stent was placed to stop the leakage of bile and from then on his chemo started. He was put on the combination of Gemcitabine and Oxaliplatin and many rounds later, the results gave the first jolt to my very hopeful brother and sister-in-law. The combination was not effective in shrinking the lymph nodes or the tumor.
Then another combination was tried for few weeks: Gemcitabine and capecitabine(Xeloda). Same results.
By that time, my brother started feeling worse in terms of pain in the abdomen, his ability to eat and swelling.Dr. Fong determined he had to intervene and instead performed “Nano-Knife”, removed few lymph nodes from abdomen area and installed an HAI pump in mid-June. Meanwhile, wary of chemo results, we also went for chemo-sensitivity assay testing on the sample.
The testing identified that tumor is resistant to Cisplatin, Gemcitabine and 5FU alone as well as in combination.The drug identified to work was Gefitinib/combination with Gemcitabine.
The installed pump has had leakage issues as of now (July 2012), and there have been 2 attempts to fix that with very little success.
My brother is now on the Gemcitabine and Erbitux. Erbitux was identified by Dr. K in a separate testing.
We now have to decide whether to proceed with the chemo via the pump despite the leakage or just continue with Erbitux.
And at this time we are not informed enough to make the call.
Kris has been kind enough to give some pointers on the forum for HAI pump to ask where the leakage is going. I will also ask on the drug that is being planned via the pump.
I would update that post on what was decided on pump.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5975Meanwhile I would love to hear from members any experience on chemo-sensitivity testing- specifically were the drugs still given despite the test showing resistance to them?
In reply to: Liver Infusion Pump?
Kris,
My brother, sister-in-law and my husband will meet with both Dr Fong and Dr. Kemeney the coming Monday. I will suggest asking where the leak is going and the possibilities thereafter.
The chemos that my brother has been on are as follows:
(1) First combination of: Gemcitabine and Oxaliplatin
(2) Then Gemcitabine and Capecitabine(Xeloda)
(3) Now Gemcitabine and ErbituxHe has had liver embolization, Nano-knife, Gall bladder removal and HAI pump installation – Done by Dr. Fong. So far the main concern has been the effectiveness of chemo in shrinking the tumor and lymph nodes.
We also sent the samples for chemo sensitivity assay testing to Rational Therapeutics and the result showed resistance to 5FU, Gemcitabine and Cisplatin alone. However there is some synergy when these drugs are given in combination. It would be good if members can also weigh in on this- whether drugs actually do not work if the chemo-sensitivity testing says so. Dr. K was not so keen on that, but Dr. Fong thought with chemo not being effective in shrinking the tumor for last couple of months to allow him to attempt resection, the window of opportunity was shrinking. So he he was fine with chemo sensitivity testing and proceeded with nano knife.
Now coming to back to chemo, and pump, Thanks for your input, we would ask where is the leak going (Dr Fong), and what chemo is being planned through the pump (Dr. K).
Because, my brother has not had results he was hoping from chemo, as well as the pump now has a leakage, and now he notices a tumor like growth on his scalp that was tested last week, he has been very very down for months. Also being an international patient from India, away from his kids and in NY for 5 months and paying for his own expenses, has been very hard on him.
When I visit NY in 10 days, one of the things on my agenda is to show your posts to hopefully pump him up a bit. I will give him your PACMAN idea
-Jyoti
In reply to: Starting new chemo.
Hi Maria,
Lauren was on Gem+Cisplatin+5FU for a really long time. Then she was on Gem+5FU. Her doctor wanted to try something new since she got a new tumor being on those chemos. We’ve heard about curcumin and we asked her doctor about it and he said NO. So we are being good and doing what he says. The Oxaliplatin has been hard on her this first time. She is still tired and had the chemo last Wed. She does stuff but wears out quickly. I hope she starts feeling better soon. Her doctor said he was giving her a hefty dose so that it probably why it is knocking her down. Her neuropathy is better than when she first had the chemo. Thanks for caring, Maria. You sure are a super woman!!
Love, -Pam
My son Trevor, has been dealing with recurring spasms in his throat causing a lot of mucus and lack of appetite. He has no control over when and how often these throat spasms occur. He’s taking Prilosec and Prevesed. He has also tried taking Carafate. Nothing seems to work. Would this be the result of the 5FU which he had on Thursday.
Any help would be greatly appreciated.
Thanks,
EileenIn reply to: Decisions, decisions
Hi.
My daughter, Lauren, was on Gemzar, Cisplatin, and 5FU for a long time and had a lot of shrinkage. Her doctor took her off Cisplatin a while ago because he didn’t want to ruin her kidneys. With the two chemos, things stayed stable. She had a radioembolization therapy called Theraspheres where they shot beads of radiation into the tumors in her liver. It was supposed to kill the tumors targeted. Instead, a new tumor popped up!! So, Lauren just started on Oxaliplatin and Xeloda yesterday. The Oxaliplatin has made her very sensitive to cold. She could not crack her eggs this morning because they were too cold to touch. You are probably wondering why I didn’t make her eggs for her. Unless she is really sick in bed, she is so independent, she won’t let me do anything for her. One of her hands was numb today and she couln’t write very well. Her feet felt really cold on the tile floor in the bathroom. Other than that, she feels ok. No stomach problems so far. They did give her double the amount of Decadron that they usually give her and that is not easy to deal with. We had them drop the dose before because it made her really irritable and she snapped at everyone all the time. They said she needed the full dose with the Oxaliplatin to help if she developed an allergic reaction. Whatever you decide, it is your choice and I am sure you will choose what is right for your husband. All the best to you both.
-Pam
In reply to: Starting new chemo.
Pam….the only thing I worry about is 5fu and xeloda being the same thing. MDA let me choose between the two, saying that theatre the same drug. Please ask your doctor about it!
Topic: Starting new chemo.
Sorry I haven’t updated on Lauren for awhile. I needed a mini break from this site. My husband thinks I get too depressed reading things every day. I like to know what is going on with everybody and have peeked in most days. Lauren’s Oncologist called last Thurs. and said the MRI is being interpreted that there is indeed a new tumor and he wants to start a new chemo. I asked him so many questions, he didn’t know what hit him. He still did not say definitely that the tumor was in fact 100% a tumor. All evidence points that it is. What the heck does that mean? He needed to get the consensus of all Lauren’s other doctors too. Anyway, she has been on her current chemo since the beginning of last Sept., so it is time to move on. I will be sure to get a copy of the MRI report. She will be starting on Wed. with Oxaliplatin and Xeloda. I asked him why switch to Xeloda when she has been on 5FU and it is basically the same thing. He said she would only get Oxaliplatin once every three weeks and take Xeloda for 14 days. If she was on 5FU and Oxaliplatin, she would need to do it every two weeks. So we won’t have to travel as much. I said I didn’t care about that. I just want what will work best for Lauren. He seemed to think that this combo will work best. We were all super upset about the news at first. We had so hoped that the Theraspheres had killed all the tumors and she could have a resection. But, as I see with everyone else, nothing goes as planned. We are not giving up hope and will continue the fight. This cancer is very stubborn, but ask anyone. We are more stubborn. Sorry, I can’t tell you more specifics, but I am just as confused as the rest of you. If any of you have any info, experiences, or tips for her new chemo, good or bad, please post it here for us. Thanks for your message on Facebook, Cindy. You are such a strong person and I admire your go with the flow attitude. Well, another long car ride tomorrow. At least we can come home on the same day because Lauren’s chemo will only be around 2 hours. Yay for that. Take care everyone and thanks for all your love and support.
-Pam
In reply to: Where to go from here?
Thanks again for everyone’s support. I had scans conducted on Friday, things remain stable which seem to be a recurring pattern. Yet my tumor markers continue to rise-to 70,000. The CA-19-9. I think a change in chemo is needed. That is what worries me, I am currently on 5fu/Gem. I dunno how to understand this. My appetite is increasing again even with g-tube.
Any of this good news?? Changing chemos again has me scared. I hope its just minor addition and subtraction…
Keep the Faith.
Trevor
In reply to: Radiation Begins Monday
Hi,
“The liver numbers looks good “does not mean that your mother will not continue to have fatigue due to the residual and accumulative side effects of 5FU and irinotecan even 6 weeks after the chemotherapy; she may still have low RBC,hemogolubin and HCT(H/H) or simply anemia; or she may be depressed ;depending on her current health status, common sense tells you and me that additional radiation will not be a good idea at this point.It may make your mom feel worse.
But then again,I am only a patient,I am not a doctor,but if I am, I will tell myself to wait for a bit longer,to regain some energy back before starting radiation treatment again if the tumor burden overall remain stable like you said.
God bless.Topic: Radiation Begins Monday
I haven’t posted in quite some time, but I read posts pretty regularly. My mother was diagnosed a year ago this month and her cancer has remained fairly stable while she has undergone treatment with chemo. She started w/Gemzar/Cisplatin, then they put her on Zeloda which caused numerous side effects. The last treatment was 5FU with Irinotecan. Since her tumors remain stable, she will begin radiation on Monday. I don’t know much about it, but my concern is her current condition. Although she has been off of the chemo for about six weeks, she has less energy and feels more nausea than she has since she was diagnosed. The doctor said earlier this week that her liver numbers were amazingly good so I don’t understand why she feels this way. It makes me nervous that she is beginning radiation when she already feels sick and isn’t eating as well as she had been in the recent past. Does this make sense to any of you and do you have any advice on things I can try to get her to eat while taking radiation? Thank you for any input.
Topic: Where to go from here?
Hope everyone is having a Happy 4th or for our Canadian friends, hope you had a good one as well. My mom has been posting for me in recent weeks as I have not been well enough. She has been a big help through all this, a great caregiver.
I have been out of the hospital for about a month now. I was emitted for nausea/vomiting, lost 10 or 15 lbs. Since then, I have had a g-tube inserted to help deal with nausea/vomiting of which has helped to steadily improve my appetite and nausea. I am also on TPN, cycling 12 hrs at night.
I met with Dr. Javle in Houston close to two months ago to discuss other treatment options. I had been on Gem/Oxaliplatin with good success for 8 months and then suddenly my tumor markers started to increase again. He suggested Gem and 5fu of which I have had 2 treatments thus far. My CA 19-9 was drawn last week which increased from 21,000 to 71,000. I am confused by the sudden increase. My appetite has been steadily improving and I have been trying to stay active on days when I feel good. Has anyone ever experienced such? I know the rapid increase could be indicative of tumor growth. My cancer is primarily located in the omentum/peritoneum area.
I know they will want to change up chemos again, but I’m just so discouraged from this recent news.
I am scheduled for scans next week.
I am ineligible for any trials Mayo Jacksonville has because of my liver transplant and am not a candidate for radiation or surgery because of the location and sensitivity of the tumor, so that leaves systemic chemo, what a lot of us are going through.
I get frustrated very easily, I am on the younger end of the spectrum, 25. Others on this site can relate, especially I think Tiffany and Lauren. In part I’m reaching out to you because of our youth. There are days where I think I know how to approach this, positive attitude, try and maintain good outlook. When I received the news yesterday, it devastated me. New treatment plan was in place, feel good physically (on non chemo days). Frustration then leads to worry which just makes me wanna cry and scream sometimes. My head gets warped into inevitable questions. Things I don’t want to think about. And patients say live each day as it is, a day, which is very hard to do.
So that is my update. Anyone with successful changes in chemo, after one stopped working, please feel free to share your experience with me. It would mean a lot on this blessed 4th.
Thank you kindly,
Trevor Bougill
