Search Results for '5fu'
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Topic: What Next?
My husband had a distal bile duct tumor and whipple surgery in September, 2011. He followed that with radiation and 5FU; and followed that with gem/cis. Now? It there are very very very small multiple nodules in the lungs. Just got back from MD Anderson; we were very disappointed. After bungling a CT scan and being very bluntly told: there’s no cure, we can only try to buy more time, without having even SEEN any scans at that point. Now what? They advise back on gem/cis. My husband doesn’t want to go the chemo route…Anderson told him those lung cells were probably there at the get-go….so, why go back on a chemo regimen that didn’t work in the 1st place?
Help! Any alternative treatment ideas? Anything?
In reply to: New Member
I just realized I never thanked everyone for responding to my post and providing all the useful information, so thank you very much.
To continue my wife’s story, we met with the Ochsner oncologist on October 22nd and she told us that she was prescribing four cycles of the GemCis regimen followed by 5 weeks, M-F, of chemoradiation with 5FU and if she didn’t qualify for the radiation, it would be six cycles of GemCis. We saw the radiation oncologist the next week and she was accepted for radiation, so the plan was in place.
A port was installed, with an accidental punction of a lung, and chemo was started on 11/19/12. As of 1/29/13, Margaret has finished day 1 of her 4th cycle of GemCis. She has skipped one week during the third cycle because of a low mature while blood count. She gets GemCis on day 1 and day 8 and a Neulasta shot on day 9. She’s had a fever one time in each cycle which required going to the ER three time so far. Ochsner sets a temperature limit of 100.4 for trips to the ER by chemo patients. The first trip was 13 days after the cycle 1 first chemo day, her temperature got to 100.6 at 11:00 pm. By the time they checked her at the ER it was down to 99.9 and they asked her what she wanted to do, and she chose to go home. The second trip was at 11:30 pm,19 days after the second cycle first chemo day. Her temperature got to 101.3, they put her in a bed in the ER, ran a bunch of test to find out what was causing it and decided it was a urinary tract infection. We came home at 4:30 am. The third trip was at 6;00 pm, 16 days after the third cycle first chemo day, and her temperature got to 102.7. They put her in a bed in the ER, ran a bunch of tests again, couldn’t find anything, so they put her in the hospital for two days. After the two days they still didn’t know what it was but decided it must be cholangitis.
The fevers are getting worse with each cycle. The oncologist, who we saw Monday, was getting ready to call quits to the chemo but after she saw how great Margaret looked, she decided to go with another round of chemo and she’s playing it day by day now. She did say that she was calling off any radiation because it’s hard on the liver, but I guess we’ll cross that bridge when we get to it.
Does anyone know what causes these fevers? I asked her oncologist if it could be tumor fever, and she said no, that if it was, the fevers would occur every day.
Bruce
Hi,
2nd opinion on medical oncology is highly recommended .
Nab-paclitaxel is another member of the Taxene family besides Taxotere which one of the member of this discussion board is currently on it.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9467
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=68270#p68270
Personally, I do think there are other options than using Taxotere. But I am not a doctor . Xeloda is the same as 5FU but in pill form,therefore your sister did try both the 5 FU and gemcitabine. Besides chemotherapy agents like oxaliplatin, there are also targeted agents like sorafenib ,Tarceva Avastin etc. that have been used for cholangiocarcinoma. I will ask more questions before I will accept Taxotere as mono therapy. The response rate is around 20% for Taxotere ,which is at the low end as compare to other regimen.
God bless.In reply to: In the middle of this nightmare and seeking info…….
Good morning everyone. Can’t thank you enough for responding with your personal stories with this awful disease.
Just had first dose of Oxaliplatin and at home 5FU for 48 hours. Wow……never thought the cold would be this painful and much of the time I am using a glass that is at room temperature. My fingers and throat tell me if it is not at least a bit warm. Cottage cheese this morning warmed did not go down so well
Had to find something funny about now.
Everyone has been so hopeful and so was I, but I am a little shakey right now. Hope this blows over….I am so weepy…and I think so shocked. It seems it is almost like playing Wack-A- Mole. They might get the tumors to shrink one place only to have them pop up in another. My oncologist refused from the start to give a stage to my case….said he does not agree with doing that altho I am sure it is in my records. My stage must be 5,6,7 ?? Maybe I don’t want to know every detail. He never gives survival months and said we will just keep plugging along until we find the right mix, changing as often as we need to.
Should I keep posting in this area, or move to another area of the discussion board?
God bless you all………In reply to: In the middle of this nightmare and seeking info…….
Kathy, Welcome and sorry you had to find us. (love your name LOL!!) I am glad you have joined us, there is more info and life expierences than any doctor or hospital. I am a CC survivor and am pushing 4 years cancer free!! I have an amazing story to share, please read it at http://www.catherinedunnagan.com, there is HOPE!!
I did all the chemo’s you mentioned, I did the 5FU for 24 hours a day for 6 weeks!!! The side effects were are all “manageable” with meds and rest. I suggest you keep ant-nasuea meds in system at all time.
There is HOPE!!
Lots of prayers-CathyIn reply to: In the middle of this nightmare and seeking info…….
Hi,
With your description, I will guess you may have hilar extrahepatic CCA.
I am not a doctor, but for some unknown reason, 5FU works more effective than intrahepatic CCA which I have.
I will suggest to get another oncologic opinion after the result of the two month trial of the 5 FU / oxaliplatin .
God bless.In reply to: Oxaliplatin side effects
hi jennifer,
my sister was on the gemzar oxiliplatin treatment. she did have bad side effects while on it. the neuropathy in her hands an feet wasnt severe but was bad at times. she also had a bad reaction to the cold. it is a very difficult treatment but so far it has been effective. she stopped her cycle in the summer and so far thank god all the scans she has had since than have been good. her first treatment with the 5fu did not have the same effect. as soon as she stopped that chemo they found more tumors. hang in there with your mom and all the advice here is great. gloves, warm drinks, stay inside as much as possible and know that the side effects will go away after the cycles of chemo are completed.My experience with Xeloda is that it works on some mutations of this disease, but the platin drugs worked better on both forms in my body.
The platin drugs made me more sick, but I have to say Xeloda also made my handstand feet very red and they burned. I kept them lotioned 2-3x a day to try to keep the peeling away, but the feet finally did start to peel AFTER I was done treatment. Unfortunately, I have no experience with 5FU.
Wish your mom the best and my thoughts and prayers are with you.In reply to: In the middle of this nightmare and seeking info…….
Hi,
Yes, gem/ cis response rate is average about 30%.
5FU/ oxaliplatin will be better tolerated and may provide stable response to your tumors. If not the next step will be clinical trial involved targeted agents.
Where are you be treated and do you know what kind of bile duct cancer you have? ( in the bile duct outside the liver or inside the liver ).
God bless.Greetings to you all….I was diagnosed with biliary duct cancer end of September. My son in law found your web site for me and I have checked it now and again. By early Nov., I started on the chemo of gimp/cicplatin (sp). Just had follow up Ct and Pet scan with awful results…..I had one spot on my liver and now I have a bunch. I now have 2 tiny spots in the lower lobes of my lung. The chemo did nothing.Dr. did say that it only works 1/3 of the time. Is this true?? Because it seems most people are on that combination Dr. said the past CT and Pet scan probably could not see these new little ones. So now it is on to 5FU and Oxaliplatin….once every two weeks….with the 5FU in a take home pump for 48 hours. This starts tomorrow. I was devastated….and scared and everything you can think of. I am 66 and in very good health…no major illness at all….just perking along and now this. Anyway this is what the oncologist is offering me now for the next 2 months and then another set of scans. Meanwhile, the oncologist is working something out so I can get the chemo in Florida. Which leads me to this…..I got an appointment at MD Anderson in Orlando with a liver specialist to see if there is anything else to do. Is there anyone out there who has been to MD Anderson in Orlando? I appreciate any info anyone has. God bless………
Hi. I read the previous discussions regarding 5FU vs Xeloda, but am still unsure what route we should take. My family is facing this same dilema with my mom. She is 70, just finished 4 rounds of Gem/Cis and is currently off chemo for 6 weeks until her next follow up CT beginning of Feb. She tolerated the chemo well, still has absolutely no appetite and lost weight again, now at 121 lbs. Her PET thankfully showed NO RECURRENCE in her bile duct (can’t tell you how I wanted to shout for joy when I heard that), but there are still 2 nodules in her right lung that are mets from the CC. Her ONC said next step (if she chose to continue chemo) would be to start either Xeloda or 5FU, otherwise if not, to monitor her with CTs. Her liver enzymes are good, her RBC and WBC, etc are working their way back up. She does have a horrible hernia that causes much pain at times, but she doesn’t want to undergo any more surgeries. I’m just not sure which would be the lesser of two evils, given her age and what her body has been through, which might be the best to kill the cancer that’s left. I inquired on radiation, per ONC only chemo is an option.
P.S. Pam, you also mentioned you were going to have a talk with your daughter, Lauren’s, doctor, did you get the answers you needed?
Any further insight would be much appreciated.
Thanks to all,
ZoniaIn reply to: Cancer is coming in the liver
Hi, 2000miler,
Nice job to get the data.
please add KRAS wide type and EGFR positive to my column;
Also I am sensitive to gemcitabline,5FU(and Capecitabine);the platium group on clude Cislpatin and Oxaliplatin and Carpoplatin.;also senisitive to EGFR inhibitors like sorafenib and Taceva (erlotinib) ,and other agents like ,celecoxib and calciferol ; I am not sensitive to irinotecan,laptinib,trastuzumab and temozolomide.
God bless.In reply to: Need some advice
Hi Annie,
My husband has this awful cancer too. He’s on Oxaliplatin/5FU combo every 2 weeks. His labs are always fine and chemo proceeds. He seems to be tolerating it well. Your brother may need a change in chemo. Also, he’s had ascites since September and is now having paracentesis every week for 5-6 liters each time. So I would say that ascites does not indicate that the end is near.
Hope all goes well on Weds. Stay strong.
DianneIn reply to: New Member and Post
Thanks to all for your encouragement and input!
PCL: Sorry; I wasn’t very concise. The following fills in the blanks:
1st diagnosis – September, 2011
Whipple – September, 2011 (result was distal tumor, no invasion, small. The only issue was the cells were a little closer to margin than he would have liked.)
Radiation – December, 2011 w/5FU
Chemo – mid-January, 2012 – May, 2012 w/gemcitabine and cisplatin
Multiple CT scans – all clear (every 3 months from December, 2011)
Continued abdominal discomfort – all along (inflammation noted on CT scans, but nothing alarming, just part of the recovery)Recent routine follow-up CT scan in September, 2012 – all clear
CT scans always accompanied by blood work – no issues in September, 2012Goshen – Blood work – mid-December, 2012 – elevated CA 19-9 and CEA (noted that CA 19-9 was tripled from September, 2012)
Goshen – Follow-up CT scan as a result of elevated CA 19-9 – mid-December, 2012) – nothing remarkable to explain elevated markers. 2 4mm spots on Rt. lung….oncologist did not express concern over these and remarked they are not related to elevated markers.
Goshen – Tumor Board Meeting this past week – group recommended Endoscopy to check bile duct area
Goshen – Endoscopy scheduled – Monday morning (12/31/12)
His surgery was at Indiana Univ. hospital by the hepatobiliary specialist, Dr. Pitt. Dr. Pitt was a long-time surgeon at Johns Hopkins and is chairman of the medical school at IUPUI. He has contributed multiple research articles on hepatobiliary cancers and surgery in various journals. We have a high level of confidence in him. Unfortunately, he has retired from the surgical side of things; his fellow has stepped into his shoes. We also have confidence in him. Johns Hopkins and Duke background. They have both expressed a lot of confidence in a good long-term prognosis. They think he will do really well.
But……a 2nd opinion has been on my mind now that this elevation has occurred. I’m glad to hear that confirmation from you. Perhaps we see what the endoscopy shows and then pursue another opinion?
His medical oncologist was referred to us by the Indianapolis medical oncologist. He practiced in South Bend and recently moved back to the cancer program at IU Health – Goshen. He has been a great advocate.
So…….2nd opinion is in order? Mayo? Does anyone have experience with Johns Hopkins? It’s hard to determine where to go….but I am very appreciative of your experiences at Mayo. Thanks!!!
I’m still wondering about undiagnosed chronic pancreatitis. Course, I feel like I have a medical degree after all of this!
Anyway…I’m going to bring this up as well.Thanks so so so much for your feedback. I REALLY appreciate your comments. Feels like light.
Laurie
Hi All~~
God’s blessings to you all.
My husband was diagnosed with a CC Distal Tumor in 2010. He had a Whipple in Indianapolis. Small tumor: Stage 1b…clean, no invasions, negative (but very close) margins. Due to margin being a little closer than surgeon’s comfort level, my husband followed up in Goshen with radonc (5FU) and chemotherapy regimen of gemcitabine/cisplatin. His return to the new ‘normal’ has been gradual but, overall, pretty great. We’ve counted our blessings each step of the way. He finally began feeling well this past July. Running, gardening, hunting. Still, continual GI pains: burning, guts so active, some pain/cramping. It’s intermittent. Doesn’t seem to be related to certain types of foods, when he eats, how much, etc. He takes Creon three times a day. Recent pain has developed while lying on back…stomach pain that sort of radiates to back. Occasional.
He graduated to 6-month follow-up CT scans (at least he was supposed to.) The September scan in Inday was great. Surgeon was pleased with all. A little continued inflammation at connection site, but otherwise good. Then, in March, went to Goshen for blood work. His medical onc called and said his CA 19-9 and CEA were elevated. 3X what they were in September. Unexplained. No physical symptoms. He had a CT. Nothing too remarkable…except 2 4mm spots on right lung. Onc was not overly concerned about those…new CT machine (very sensitive) and they may have been there all along. Certainly not enough to explain spike in tumor marker. He met with his peer group and they decided to do a endoscopy on Monday. Look around the bile duct area. They were all generally perplexed about the rapid elevation…with no physical symptoms and a clear looking CT. Our doctor told us it’s possible they won’t see a thing on the scope. They don’t initiate a new treatment plan based on tumor markers alone (not that we want them to.) So…
This is where we’re at. I, of course, tend to become gripped with fear at each possibility. I wish it wasn’t so. I am up and down. My husband is all about: no need to panic….we need more information. He’s right. God is in control. One day at a time. This is the new normal. Wish I could plant myself there and let it go?!! I have caught myself trying to really overly control other aspects of daily life…of course because this area is so outside of my control. How do you all manage these up and down emotions?
Also, what does chronic pancreatitis look like? I’ve wondered if this might be the cause of his ongoing pains? And, even more so now that it radiates to his back and he occasionally feels flu-ish. The oncologist does not think this ongoing gastric upset has anything to do with spiked tumor markers at this stage….would have happened some time ago. My husband has been a 2-3 glass of wine per night person…and, if we have something stronger, he will partake. I’ve asked him to cease all alcohol…he has. I’ve wondered if that has contributed to pains and/or increased markers?
What are your experiences?
Thanks for reading and caring. My best to all of you. You are all in my prayers daily….along with my Jon.
Blessings,
Laurie
