Search Results for '5fu'
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Search Results
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In reply to: Looking up for IMRT!
Well, two doses of radiation under his belt so far and other than tired he seems to be doing okay.
Drove up Tuesday and got the port placed. Dr Neuzil who placed it was thankfully thoughtful of my husband still wanting to shoot his rifles so placed it more to the center. Then stayed the night and did chemo. He got a one time dose of Mitomycin (looked like purple Kool-Aid), his Interferon injection and then started his 5FU continuous. Stayed another night for radiation again this morning then I will take him up tomorrow. Sunday he moves up to his sisters for 5 weeks.
So far he is just tired and a little flu like from the Interferon. He is sleeping a lot but that’s okay.
I did decided though that it’s a good thing I don’t live in a big city. Too much delivery food…..we had awesome Italian food and Vietnamese food. I could get way too used to that. We only have pizza at home.
KrisV
In reply to: My Introduction
Matt –
Your story still really does sound a lot like my husband’s. We are currently done with adjuvant chemo and are doing 5 weeks of chemoradiation (5FU continuous infusion with 25 IMRT doses).
It does hit you really hard when you are healing from the surgery which is such a BIG surgery and they start hitting you with chemo and follow ups. We totally understand that. We were day four after surgery and Mark was finally making sense when he talked and then in comes this oncologist we had never met and starts talking about long term plans, chemo, radiation, recurrence and all that. That was only the second time I had cried at that point. We had thought surgery was all we were going to have to do.
This really feels like a roller coaster ride through out with lots of highs and lows. No one wants a ticket to this ride either (and I normally love roller coasters too)
I would be more than willing to share our experiences if you are interested. I am always willing to take a phone call (360) 880-0327 or email dazoo3563@comcast.net.KrisV
In reply to: My Introduction
Matt –
Welcome the family here. Your story sounds like my husbands although he did have some right sided pain which we thought was gallbladder pain. Ultimately he developed severe jaundice. We were referred to Seattle where we met our brilliant surgeon and got the awful diagnosis. He was diagnosed in May 2013 and he is only 50.
My husband’s surgery was 14 hours and then he had 12 day hospital stay. His recovery was really slow too. He lost about 50# which thankfully he had to lose. He dropped from 240# to 190#. Protein is your biggest friend right now. All those good things like meats, eggs, cheese, milk, etc (if you eat them) and then you can do whey protein powder and make protein shakes. We used frozen fruit, ice cream, yogurt, milk and a scoop or two of protein powder then blend it. He didn’t particularly like them but he drank them.
Are you planning on doing adjuvant chemo? or radiation? We just finished 6 months of every other week Gemzar and Oxaliplatin. And right now we are sitting in the hotel room waiting to start chemoradiation tomorrow of 25 doses IMRT with a continuous infusion of 5FU.Hang in there and keep us posted.
KrisV
We are getting ready to start IMRT with chemo at the same time of 5FU plus interferon injections three times weekly. We were told that the radiation alone could cause some nausea since the area where they are irradiating is so close to the stomach. In my husband’s case it probably will be part of his stomach since everything shifted a little with his liver resection. My husband also had radiation 37 years ago with his Hodgkin’s lymphoma and he said he was pretty tired through it and he could only eat just before he had his treatment.
Also when I deal with my patients who have or having radiation, fatigue can be a problem with the radiation. To me is just seems to be part of it….I mean it is radiation.
The temp I am not so sure about. I would make sure his is drinking plenty of fluids since dehydration will make you run a low-grade temp. Also can increase the fatigue levels. For the nausea if you don’t have meds for nausea then I would ask for some, something like Zofran (ondansetron) or prochlorperazine that he can take. Lastly, how long has it been since his lab work has been checked such as his white count, red count and all that. He may have a low grade infection or be anemic.
If the radiation ONC doesn’t want to be helpful go back to your medical Onc.KrisV
In reply to: A little bit of good news
What wonderful news!! Yes, life CAN go on with cancer. Here’s hoping for more good news and successful treatments, whether it be 5FU or SIRT.
In reply to: A little bit of good news
Thank you all for your kind words, positive vibes and prayers! One of our biggest challenges is learning that you can live with cancer, that life can and does go on. Every day there are new miracles and I truly believe my dad is already one of them. There is always hope. When you get pushed down, you get right back up again. This week was school vacation and my dad had my two youngest brothers all week long and he managed not only to do something with them every day, but he took himself to his own CT scan on Tuesday and to infusion on Thursday. Then we all went back into Boston to the children’s museum yesterday for the entire day all while he was wearing his infusion pump. Talk about a strong man that won’t let his disease control his life. He amazes me every single day. I questioned his decision to give up Oxaliplatin, because we were told that the combination was going to give him the best results, but he stuck to his gut and said it was more important for his well being to be able to spend time with his children, so he opted for the 5FU alone. Sure enough, another example of how you must listen to your gut as it’s your angels that give you those gut feelings. His oncologist is shocked and said that another cycle of 5FU alone might possibly bring his disease under control making SIRT at this time not even necessary. I am a happy girl this week!
Topic: A little bit of good news
Hello,
My dad went in to Dana Farber today and got the results of his CT scan that he had earlier this week. He has had 44% overall shrinkage since starting 5FU in December (when he found out he had recurrence in his liver).
We met with Dr. Schrenker at MGH on 2/13 and will be scheduling a “mapping” appointment for SIRT (radioembolization, Sirtex, y-90). If he is a candidate, the procedure will take place two weeks after the mapping.
He has been feeling great, has been gaining weight and has had normal liver functions, but we will still shocked at the significant amount of shrinkage since he was only on 5FU when they wanted him to continue with FOLFOX (even though he is allergic to Oxaliplatin).
We continue to pray to shrink the tumors as much as possible with chemo and then blast them out completely with SIRT. We are happy today.
Nikki
In reply to: Intro
Hi Nan,
Welcome to this wonderful and supportive group. I also live in Ohio and am treated at The Cleveland Clinic. Chemo tolerance is different for everyone but I did have the 5FU and did very well with few side effects. I think you will find hope and compassion on this site. If you would like to talk please feel free to call me anytime.
330-903-6868
LisaIn reply to: Intro
Hello Nd58 –
Welcome to the best little family that no one really wants to be a part of. You will find lots of good support here and we are always here to help, answer questions or just listen if needed.My first question would be where is your husband being treated at? Is this a cancer center that has dealt with a lot of CC. Because it is so rare smaller cancer centers have a tendency to have not seen it much. I would also ask: Have you gotten a second or even third opinion? Sometimes doctors who have seen this more are more on the cutting edge.
I do not know much about 5FU yet, my husband will be starting this is a couple of weeks as adjuvant with his radiation. But we have much experience with the Gem and the Oxaliplatin. He just finished 6 months of that combo. I know the Gem destroyed his veins and the Ox drove him nuts with the cold sensitivity. Had to drink warm water, warm teas and hot coffee, even heated his Gatorade up (Yuck by the way).
As for the pain, what is he taking for pain medications? If what he is on is not working, there are plenty of options to chose from. And as for his blood sugars, they are going to probably be all over the place, especially if they give him dexamthasone for nausea….my husband had a big dose before chemo and the took it for two days afterwards. I wouldn’t get terribly worried about those right now unless they are running really high. The biggest thing is to make sure he is eating enough protein. If you have to make protein shakes or something like that.
And don’t even feel bad about your posts to us. This is such a crazy disease that often you feel like you are on a roller coaster. This is what we are all here for.
Keep us posted and we will support you any way we can.
KrisV
Topic: Intro
Hello everyone. Unfortunately husband was diagnosed in August w/intrahepatic bile duct cancer non respectable. Three large timers on liver, several lymph nodes enlarged in stomach. Blood test for tumor marker was 24000, started Gemara/cisplatin cycle in Oct, finished cycle not responding. New chemo 5fu /oxiplatin(sp?) combo and it is wearing him down!
Love dr except he does not tell prognosis ever per nurse. All we officially know is no cure just possible treatment, no staging. husband is in denial thinks he has years to fight this, I have read research info, average median survival 6 months from my research. I am firm believer in mind having power over physical condition but I need to know something! Hubby’s pain is increasing blood sugars sky high, has had potassium levels too high…..just so much. And I know that you all understand.
Sorry to have gone on just feels good to get this out finally, little support.
Thanks for listening, any input appreciated!In reply to: Help
dani_ya wrote:Hello,I’ve been to this forum many times. Thanks to all for sharing their experiences. I need help for my mother.
She was diagnosed last May with extra-hepatic cholangiocarcinoma centered around the gall-bladder. The tumor is small (2 cm x 2 cm). There was no evidence of tumor spread. They didn’t perform a surgery to remove the tumor because it involved the blood vessels in that area. She started Chemotherapy (Gemcitabine and Cisplatin). She finished five and a half rounds. Then she had radiation with oral chemotherapy Xeloda. She finished six weeks of radiation in November. She hasn’t had treatments since then.
The scan they did in August during the chemotherapy showed that the tumor had shrunk, but still not removable. The scan she had in late December showed new nodules in her abdominal cavity. They repeated the scan at the end of January to monitor the new nodules. The nodules increased in number and in size.
The oncologist offered us three options. She could do nothing. She could do second chemotherapy (Xeloda + Oxaliplatin). She could do a clinical trial. He didn’t recommend doing a clinical trial because the chance of an experimental drug working is less than the standard chemotherapy.
What is the best course? I think doing standard chemotherapy or a trial. How soon should we start? Is there an on-going/upcoming trial that’s been beneficial? Is the recommended chemotherapy harsh?
Thank you very much for your help.
I don’t know how old your mom is or what her general health is and the decision on what to do is so personal. Has she expressed an opinion on what SHE wants?
From what I understand, a lot of the trials take people whose first line treatments haven’t worked.
I think treatment affects everyone differently. I also have extrahepatic CC and mine is wrapped tightly around my duct and veins and not, so far, operable. I’ve had gemcitibine (a/k/a gemzar) and cisplatin, 2 weeks on 1x a week and then 1 week off since November. It’s shrunk my tumor some, but it’s hard to measure. I’ve done it since November. I didn’t have to miss any chemo days because my counts were too low and I haven’t had horrible side effects. I’m damn lucky, but I’m also 56 and was in excellent health before this, so maybe that’s part of it. I’m moving forward with starting radiation in two weeks. I’ll continue to get chemo, although a slight variation (dropping the gemcitibine – it reacts too strongly with radiation and picking up 5FU). Our hope is it is going to kill off the tumor. Mine is slightly larger than your mom’s. If that doesn’t work, I don’t know what’s next. That’s the frustrating part.
If you start chemo and you have a bad reaction, you can always stop. My doctor hasn’t talked to me about trials yet, but I would participate in one if I thought it would help me (and others). But again, it’s really a personal decision.
In reply to: Help
Hi,
University of Iowa is the hospital to go to in Iowa, it is a very good regional but not specialized in cholangiocarcinoma . I was from that school.
Back to the question, for quality of life, doing nothing is an acceptable idea since she developed nodules in the abdomen and that is a bit difficult to treat. Sometimes Avastin may be of use when use along with Xeloda or 5 FU and other agents. For some unknown reason , 5FU including its oral form Xeloda, works better for extra hepatic CC than intrahepatic . Major side effects are as KrisV mentioned above. In your mom’s case, systemic chemotherapy or targeted therapy is the option, as well as clinical trials if she had done a next generation sequence genomic profile, if not, depends on your mom’a age and health status, , patient may try to have TIL @ NIH if qualify. ( please check the clinical trials on this web site for info) it is an immunotherapy with very harsh pre-treatment immunosuppressant protocol,but the result is remarkable. One of our member is in the trial with very good result.
Since GEM/CIS had been working fine before to shrink the tumors, it can be re- use to treat the tumors again too.
Just let you know, I am a patient like your mom and not in the same medical field as the doctors.
God bless.In reply to: Clean Scans!
Well, now that the Seahawks have won, life is so much better. Just kidding but it really made Mark’s weekend.
After much talking we are definitely going ahead with the chemoradiation, not sure it was really so much a decision but wrapping our heads around the logistics and the fact that we weren’t done as we hoped. I fired out a couple emails today to docs to try to get them all coordinated for this. I emailed our Infectious Disease doctor since I want him on board before the port is placed and to work with us on preventing sepsis this time….Mark had three hospitalizations this summer after the port was placed. I also emailed his ONC to find out about the drugs on top of the 5FU that he will get. I suspect it will be Interfieron and Leucovorin. Once I find out for sure I am going to see if we can coordinate getting it locally which will allow both of us to continue to work as our local radiation center is only about 15 minutes away. If not then he will spend the week days with his sister who is only a ferry ride away from Seattle and then home on weekends. He won’t be able to work which bums him out.
Looking forward to getting forward with this since it means closer to the end.
BTW, I also really got to look at radiology reports and the actual films….it was really interesting to see those. But I did get a little frustrated because there was stuff on the reports that they didn’t tell us. Or told us well after the fact was going on. Lesson learned, I will ask for copies as soon as available to make sure they don’t do that any more.
Thanks for all the positive thoughts.
KrisV
In reply to: Clean Scans!
Kris, doing a happy scan dance here for you and Mark. I’m getting ready to do a very similar IMRT schedule, with 5FU. I’ll be going in on Monday, getting all of the usual chemo I’m getting now except the gemcitibine (my dress say it is too good a radioactive agent and makes the radiation too strong), which is why instead of it, I’ll get the 5FU. I’ll get the 5FU hooked into my port and wear the pump home and wear it until Friday, and they will disconnect it for the weekend. I hope at the end, I’ll have clean scans.
Having to drive 2 hours to the hospital every day sucks. I’m sorry you have to do that.
Lisa
Topic: Tarceva/Gem Sis/5FU
I have been lurking here for 2 years, while treating my dad for his CC. My dad passed on Dec 29, and I wanted to tell his story in hopes it could help others.
My dad was 78; he went through 2 years of chemo, including Gem/Sis, Abraxane, 5FU and finally, Tarceva.
As with most CC patients, the Gem/Cis worked great for the first year or so. Then it stopped working. The 5Fu almost killed him, causing a heart attack immediately. Abraxane did nothing. By this time we were near the two year mark, and he was running out of options.
Our family had put him on High Extract Cannabis oil, which kills cancer and has put people in complete remission. After 2 years of poison, or chemo as they call it, his body was completely decimated and it was very difficult for the Cannabis oil to work. His liver and kidneys had already begun to fail. Cannabis should be a first line of defense, not the last.
The oncologist said that as a last resort perhaps we should try Tarceva. Since its not approved for CC, it would cost $7000/mo. We purchased 15 days worth and my dad started it. We hoped this would buy more time for the cannabis oil to work, but instead the Tarceva killed him.
Genentech, the manufacturer of Tarceva, had issued warning letters and information sent to oncologists to NOT give Tarceva to patients with liver tumors, as Tarceva has been shown outright to cause COMPLETE LIVER FAILURE. If only the oncologist had mentioned this- I would have told him to take his Tarceva and stick it somewhere.
Within 5 days of taking the Tarceva my dads liver failed, his kidneys went next- he was in the hospital for a week, then hospice for a week, then it was all over.
With that being said- i think Tarceva might be beneficial in younger patients with absolutely no liver or kidney issues. I have 10 days worth if anyone needs it.
