Search Results for '5fu'

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  • #82528
    kvolland
    Spectator

    Dan –
    I think Matt covered it pretty well. The meds that seem to work best are a combination of the Gabapentin, Lyrica and Cymbalta. Then resorting to pain medications to cover the actual pain the neuropathy causes. I would definitely go with physical therapy and I would also look into occupational therapy as they can help with upper body stuff and things like dressing, tying shoes, etc. They may also be able to work with the physical therapist to deal with some of the balance issues…..there are exercises and stuff to help with that.
    Massage, acupuncture and anything like Reiki may help to. She may not completely recover but should gain come back.
    My husband had pretty severe hand and foot syndrome to the 5FU and even after a month off is still having troubles, especially with his hands. Buttons are really hard and he has a hard time checking his blood sugars.
    Good luck and hopefully you find something that works well.

    KrisV

    #82141
    kvolland
    Spectator

    I don’t know. We always saw our doc in the infusion room when he had chemo and then they had separate consult rooms for when we don’t do chemo. They were private rooms when we were doing any sort of chemo (I loved that) and then semi-private when it was just fluids. Both of the times that Mark had reactions to the chemo we saw the doc again….once our own ONC and then one time ours was gone and we saw the on-call one. And then when we were doing the 5FU and having so many problems, we got to see him on a non-normal day to make decisions. We normally only saw him on Wed when labs were drawn but Mark was so sick we saw Mon and Wed one week. I guess I would want to have a doc around with the infusion in case something goes wrong….Mark had anaphylaxsis to the oxaliplantin the last infusion. It was scary and I was glad there were docs close.
    Julie – I know you will make the best decision for you on this. Go with your gut, it’s usually right.

    KrisV

    #82130

    In reply to: xeloda efficacy

    pcl1029
    Member

    Hi, Peter,
    it is the oral form of 5FU,on par in effectiveness(20-23%) with gemcitabline for cholangiocarcinoma(CCA) with or without cisplatin combination. it is somehow ,for unknown reasons, works better in extrahepatic CCA than intrahepatic CCA.
    side effects are minimum.
    depends on what your doctor thinks the dose can be higher(ie: 1500-2000mg twice a day[2weeks on and one week off] or 1000mg twice a day 5days on,2days off).
    Xeloda ,if it works, can reduce the size of the CCA or slow the growth of the tumor to buy time and have some quality of life . I am in stage 4 with lymph mets, I am on 1gm Xeloda twice a day to slow the growth of the CCA.it will buy me some quality time if it works. I have been on Xeloda for 3 months now.what stage you are on? any mets to other organs or lymph nodes.

    if interest, below is a general view about chemotherapy.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

    God bless.

    #9910
    kvolland
    Spectator

    Okay, I am so ready to pull my hair out right now. We are now over two weeks past the last radiation and the 5Fu chemo stopped. Mark just keeps slipping down hill and I am not sure what else to do.

    I know I am too close to it….it’s hard for me to step back and take a clinical view like I would with my patients.

    His weight is now down to 175# (he was 215-220# when we started). He only drinks maybe 8-10 ounces of fluid a day and only eats about 1/2 a can of soup, a Carnation Instant Breakfast and maybe some MaltOMeal a day.
    Currently he is getting 1 liter of fluid three times a week that I am doing at home rather than driving to Seattle for it. We started Megace last week and started Lexapro (an anti-depressant) two days ago. I stopped all his blood pressure medications last week and even today his blood pressure was 74/56.

    I ended up dropping everything at work and running home because when I called to talk to him he was slurring his words and not making sense (I worried about a stroke but he was finally neurologically when I got home). But he sleeps all the time and even when he is awake he really doesn’t have a clue what’s going on. Yesterday the Infusion company called him to see what he needed for supplies and he didn’t remember them calling.

    I have been in close contact with the MD office and I will give him extra fluids today to help with the low blood pressure. His lab work is fine…liver, kidneys, all that. In fact white count, red count and platelets are all back to normal after chemo. I have the script for Medical Marijuana but he flat refuses to use it or even consider it. I also started him on Super Digestive Enzymes which is an over the counter supplement that has probiotics and enzymes to help with digestion but that hasn’t made any difference.

    Any suggestions or thoughts? Maybe someone has a idea that might help.

    Thanks, KrisV

    #9892
    chiahuey19
    Spectator

    Hey guys! Sorry I know I haven’t been posting lately but I’ve been reading others posts to keep myself updated on anything that’s working.

    Some of you may know that my dad had 6 rounds of 5fu/Cisplatin which didn’t decrease the mass but kept him stable. The tumor is 19cm on his liver, and there’s also some small ones on his lungs. My dad’s now having carboplatin/gemzar for chemo, and he’s planning to stop after four rounds if there’s no progress… is that wise to do?

    Say if his tumor mass shrunk after four rounds of chemo, is it best to keep up with chemo or do a surgery (the doc mentioned that my dad’s tumor is located on the edge of his liver)? Any suggestion would be much appreciated, thanks!!

    #81803
    kvolland
    Spectator

    Hi Vince –
    Welcome to our little family. Many of us have been in the same boat with making that decision. My husband was diagnosed in May 2013 with perihilar CC with surgery in June 2013. His tumor was 2 x 3 x 2 with one positive node out of seven and clean surgical margins on the second try.They did find some invasion along the nerves and lymph system too. We opted to do 6 months (12 treatments of Gemcitabine/Oxaliplatin) then just finished 25 doses of IMRT with 5FU infusion. We chose to go that route based on our ONC recommendations due to the concerns over spread.
    Our doc said he basis his recommendations on four questions: How big the tumor was, clean wound margins or not, any metastasis and the differentiation of the cancer (how much the cancer cells are like the original cells). According to him they considered his rather large, clean margins but on second try, positive node and moderately differentiated so that was two for chemo, one so-so and one against it.
    We went for it because my husband wanted to give every chance there is to beat the cancer and not have it come back. But not to say that there are times he wished he has skipped it all….especially right now since he is ill from the chemoradiation he just finished.
    Hope this helps.

    KrisV

    #9869
    kvolland
    Spectator

    Well, I figured since I had started to hijack LisaS’ post, I figured I start my own.

    Mark has not done well post-radiation. The radiation ONC blames it on the chemo and the medical ONC blames it on the radiation. I think it’s a little bit of both. They had to work hard to get this round of radiation around the radiation from when he was a kid. Also we found out that when they removed the left lobe of his liver that his stomach slid to more mid-line so when they radiated the tumor bed, they got the stomach. And the 5FU is pretty rough for him so it’s just a double whammy. He feels like stuff is sticking in his esophagus even though they tell us (and showed us) that they weren’t hitting it. Anything with texture feels like it sticks. He’s living on MaltOMeal, soups like chicken noodle and tomato and protein shakes. However he has no appetite so its not much when he eats. Weight is down to 179# this AM…..which is 15# less that his lowest after surgery. Ugh! Looks like a stick man.

    He started his Megace tonight after much debate and argument. He was okay with it until the doc told him it was a female hormone. I had to promise him that it wouldn’t change anything (and nothing would fall off :) Lol). He did take once I got it tonight.

    He is still walking out to get the mail most days unless it is raining too hard and he is pooper scooping some after the puppy, of course that’s because he knows I will mow over it if he doesn’t.

    We have talked about TPN or a J-tube. I am leaning toward TPN since it won’t require another procedure. We see the doc again tomorrow for labs and fluids. A lot will depend on his protein levels. If they are down (were low but not worrisome last set of labs) then we will have to consider it.

    And to top it off I went back to work on Monday, half-ish days for now. I finally after a year ran out of FMLA. Although my employer is still working with me as best they can. Mostly I need to keep the insurance. And I applied for a new job…..looking at working in a clinic with long term disease management. We’ll see.

    Thanks all for your support.

    KrisV

    #81744
    lisas
    Spectator

    Iowagirl,

    All I can tell you is my experience with the gemcitibine/cisplatin regime. I did four rounds of once a week for two weeks and then a week off. Then, my doctor felt I did so well, he wanted me to move to radiation (my tumor isn’t operable … yet), which changed my chemo combo – the gemcitibine reacts too strongly to radiation, so I started getting cisplatin once a week and 5FU (an infusion pump I wore M-F) throughout my 30 days of radiation.

    I didn’t lose any hair and, in fact, I was told that few people do with gem/cis. One nurse told me my hair might thin, but if it did, it was not noticable. In fact, a friend made the comment after I finished both the gem/cis cycles and then 30 days of radiation and the different chemo that I still had thicker hair than she did. But, you know, I’d gladly shave my head if it meant I could have resection surgery.

    What I did notice was that the hair I had hardly grew while I was doing chemo. What I was told was that hair cells are fast growing cells and chemo targets fast growing cells. This meant I could go longer between haircuts (yay, less $$$) and hardly had to shave my legs or under my arms, which I took as a big bonus. Too bad it wasn’t shorts and bare legged weather.

    I had minimal nausea (like one night a week, usually about day 3 after chemo) and if I had been better at taking my anti-nausea drugs before I felt sick, that might have been different.

    They gave me a steroid in IV form during chemo, so I always felt GREAT the day of chemo. Felt like I had a lot of energy that day. My worst was feeling draggy, usually about 3 days after chemo and that lasted a day or so. Even with that, I continued to work full time, but I did arrange to work from home two days a week and there were a few days I curled up in bed with my laptop and a couple where I might have dozed off during the day. But not many. If you can, force yourself to get some exercise, even walking helps!

    My biggest issue was the change in taste and the fact nothing sounded good to me to eat. Everything tasted off. And, there were certain foods I could not stand to smell as they were cooking – fish and broccoli, primarily. My husband would cook dinner and I’d have to go upstairs and away from the kitchen. I had to force myself to eat some days and I definitely lost weight. I asked my oncologist yesterday about when my taste would come back (I finished radiation and chemo a week ago) and he said a few more weeks.

    Hoping you sail through chemo with little or no side affects.

    Lisa

    PS: It’s interesting how different places do things differently. I just read what Kris wrote. While I was prescribed zofran (anti-nausea), that was the only thing I was prescribed. Everything else was given to me the day of chemo.

    I can’t really comment on the driving versus staying in an apartment. There are a lot of people who drive several hours to be treated where I am (Baylor Hospital in Dallas), but I live, literally, about 8 blocks from the hospital. I never imagined when I bought this house 13 years ago that I’d be so grateful to live so near to a major teaching hospital with a major cancer center, that sees a lot of cholangiocarcinoma. You can always give driving a try and if it’s hard, change your plans. I know Baylor has both a hotel and rents apartments that are walking distance to the hospital for patients and their families.

    PSS: I found I was really sore after getting my port in. I had a hard time lifting my arm for a few days after it was put in. That surprised me. Although, I really didn’t know what to expect at the time – everything was happening so fast immediately post-diagnosis and I had a blockage that required immediate surgery – they did the port the same time they did my gastroj surgery. But, like you, I like to know what I’m getting into, so don’t be surprised at that.

    #81743
    kvolland
    Spectator

    Julie –
    You sound like me. I hate the unknown. I want everything laid out and know exactly what is going on. The first chemo is always scary. I do know that everyone responds differently to the chemo. Mark did Gem and Oxaliplatin and did great through it where the 5FU we just finished wiped him out. He would say that he was mostly tired especially towards the end. The immune system part we didn’t have a lot of problems with. His white count stayed up and we had our toddler grandson living with us and bringing all kinds of yuck home from daycare and Mark only got sick once.
    One thing you shouldn’t have with the Gem/Cis is the cold sensitivity that comes with the Ox. That was annoying for both of us.
    Generally with my patients and with Mark too, they feel pretty good the day of chemo because of the fluids and the premeds. Some will feel a varying range from kind of mild flu-like symptoms to feeling really bad…..it just depends. One thing I will say though is if they give you a schedule to take medications after chemo follow it. Mark took Zofran twice daily and Dexamethsone twice daily after chemo for two days then prochlorperazine as needed every 6 hours and Lorazepam as needed. We really followed the directions and had little problems.
    As far as traveling, we have a 4 hour round trip every time we go for chemo or radiation (I put 15,000 miles on my car this last year driving for just the cancer). Mark traveled well. We have a “bucket” of essentials that we carried such as extra meds (nausea, pain), baby wipes to clean up, towels, gatorade, water, etc but never really used much of it.
    I think the traveling versus staying home decision is tough. I guess it depends on where you feel most comfortable. We considered a hotel while doing his 25 treatments of daily radiation but opted for the drive so he could be home which is what he wanted.

    Good luck with your decision. I know you will make the right one for you. :)

    KrisV

    #81214

    In reply to: Introduction

    kvolland
    Spectator

    Chrisna –
    My husband too had surgery…almost a year ago now. We were told that we were the lucky ones and has been said, it’s the only chance at a cure. There is a lot of debate about to do or not to do adjuvant chemo after the surgery. My husband chose not only chemo for 6 months but also 25 doses of radiation along with 5FU chemo. Our Onc felt it was the best shot at a long term remission or “cure”.
    Right now his quality of life is not all that great due to the effects of the chemoradiation but prior to that he was working full-time and you would not know he was or had been sick. And once he recovers from this recent round of stuff I suspect the same will be true.
    Surgery is rough. His was 14 hours and he was 12 days in the hospital and he didn’t return to work until September last year but he was working full time and feeling fine.
    And just because surgery is recommended, it doesn’t have to be done. I am sure there are those who chose not to, just as some don’t do chemo or any other treatment.
    Good luck with the 2nd opinion.

    KrisV

    #81641

    In reply to: Treatment uncertainty

    crissie
    Spectator

    My father was on gem/cis and then they found some nodules on his omentum. They continued the gem/cis then did a scan. The nodules grew and they saw others. The switched him to oxaliplatin and 5FU.

    Their thought was that since some grew they were becoming resistant to the gem/cis.

    #9833
    crissie
    Spectator

    I talked to my dad today. He is angry…well angry is an understatement. He doesn’t feel well and is on oxaliplatin and 5FU. He says he goes from bed to the couch and vice versa. This is his first round of this chemo. He says if he doesn’t feel better he is going to stop. He says the NP doesn’t listen to him, doctors dont do anything, wants to just die….

    I am thinking of maybe starting (or suggesting) Hospice to him. Can they prescribe pain, nausea meds? Any other ideas? I think he is not going to last with this. He is always angry and he has a right…..this cancer is horrible.

    #76400
    lisas
    Spectator

    Well, this morning was my 30th radiation treatment. I got hugs from my radiation tech, the nurse, the nurse practitioner, and the radiation oncologist when I was done. I finished my planned chemo last week, getting the 5FU pump off on Friday. I also finished the iv antibiotics, so they took my picc line out Friday. I’m on an oral antibiotic to keep from getting another bile drain tube infection for the next month.

    So, now I wait. That’s the part I have the hardest time with. I’ll meet with my oncologist next Wednesday. I assume he’ll do lab work and then he’ll schedule my scans, looking at about a month or so from today to do them.

    Anyway, I seem to be hanging in there okay. My goal for now is to gain back a little weight. I was down to 114 this morning. I can’t believe The words “I need to gain a few pounds” would ever come out of my mouth, but it’s true. I am hoping I will have more appetite and foods will go back to tasting normal. That’s been my biggest issue.

    Lisa

    gavin
    Moderator

    A trial looking at oxaliplatin and 5FU for advanced biliary tract cancers (ABC-06)

    At Liverpool and Manchester, phase 3.

    http://www.cancerresearchuk.org/cancer-help/trials/a-trial-looking-at-oxaliplatin-and-5fu-for-advanced-biliary-tract-cancers-abc06

    #76392
    lisas
    Spectator

    Quick update on me.

    5 more days of IMRT to go. Yesterday was my last chemo day with cisplatin. I had to get a 2d dose of iron because I’m anemic (got a bag of iron the week before, too) and this is my last week of wearing the 5FU pump all week. It will come off Friday, as will the picc line they put in my other arm for the IV antibiotics I’ve been taking since I spent most of February in the hospital with infections and dehydration. I think they will keep me on an oral one while they are deciding if they can remove my bile drain tubes, because I’ve had lots of problems with them.

    My oncologist said that since I only have 2 days of radiation next week, I don’t need the chemo then. They are sorta like snow days, tacked on at the end. I would have finished radiation this Friday, but I ran a fever one day and was told not to come and the other day, the machine was down, so I’m making them up next week for the full 30 days.

    I will go Monday and get a 3d iron infusion. They said anemia happens with cisplatin particularly. No wonder I feel draggy and tired.

    Still not great appetite. Wondering if that ever returns. I hover between 117-119. I think everyone would like to see a number closer to 130.

    And then …. I wait.

    I’ll see my oncologist the next week (I’m assuming he’ll do labs then), and we’ll schedule my scans. I know they want at least 4 weeks to let the radiation finish and to let the inflammation die down to get as good a picture as they can. My pre-radiation scans were really hard to read.

    And then … I don’t know what comes next. The scans will be key.

    I am trying to get some normal life back. I rode my bike about 6 miles Saturday and it was cold and windy. I’m signing up for a 23 mile charity ride this weekend. Last year I did the 30 and 50 mile routes of these respective rides without even thinking about it, to give you an idea of how my “then” versus “now” is.

    Still, my oncologist was pretty amazed I did the 6 mile ride at this point in treatment. He said I looked fantastic (and I don’t mean looks – heck, he’s probably never seen me with a lick of makeup on).

    So, I have no idea what the future holds, but I’m trying to hold on to some normal life (whatever that is anymore). I still feel that 2d shoe hanging over my head, ready to drop at any minute.

    What is the balance when you are done with active treatment, but still aren’t a candidate for resection (and trust me, if they say no here, I will be getting 2d, 3d, 4th opinions).

    Lisa

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