Friendinpenn Here! Anyone just using 5fu with leucovorin only? (first time writer...).

Friendinpenn
Friendinpenn Member Posts: 70
edited March 2014 in Colorectal Cancer #1
I had a bad reaction to the oxiplitan yesterday only about a half hour into the treatment....I had the full FOLFOX and FILFIRI in the past and never had this type of severe reaction...it was really bad and scary yesterday...

I'm now off the oxiplatin and will be seeing my oncologist next week for consultation...

By the way, I am stage iv with three successful surgeries to remove tumors in my colon, liver and a small nodule on my lung on August 30th...

Apparently I am on a "preventive reoccurence treatment"

Xeloda was also mentioned and I was on that temporarily two years ago while I recived 28 radiation treatments on my colon...

Any advice or experiences will be greatly appreciated!!!

Thanks

Comments

  • PGLGreg
    PGLGreg Member Posts: 731
    #2
    Here.
    That's what I had, together with radiation for rectal cancer. But I was only stage 2a. I don't recall anyone here with stage 3 or 4 saying they had only 5fu and leucovorin.
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Friend:
    Hello and welcome to the board. After Folfox in 09, my hubby went on 5FU and Leucovorin and it has held things in check for 48 weeks. Unfortunately, his CEA is rising so this week we did the CT and PET scans to see where we stand.

    He tolerated the 5FU and Leucovorin very well. It was more of an inconvenience going in for the 30 minute infusion but after Folfox, it did its intended job for much longer than we though it would. He was very fatigued but he had just completed Folfox, surgery, and continued to work. He did not experience any nausea.

    My husband was advanced Stage IV at diagnosis and other than chemo, the only surgery was removal of the primary tumor in the transverse colon.

    Take care and Welcome - Tina
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #4
    Friend
    I am right there with you on the reactions. If you want to read my postings on them, I have put those on my blog so that you won't have to search for them. I've been given dex and benadryl to help with the reaction but, had to do it twice the first infusion to get through and then once again this last time (only 2 infusions so far). I'm not sure yet how my onc is going to handle it since I had this last reaction even with pre-meds. I'll find out next week when I see him. There are things they can do besides just stop the oxy all together.

    BUT, I do want to welcome you to do board. Sorry you had to join but, so glad that you found us here. Great bunch of people with lots of love and expxerience.
  • HollyID
    HollyID Member Posts: 946 Member
    #5
    I had a nasty allergic
    I had a nasty allergic reaction to the oxaliplatin (Satan-in-a-bag) about 20 minutes into my seventh treatment of Folfox. My onc wouldn't give it back to me with all the suggestions and begging I did. I was left with only 5-FU and Leucovorin for the last few treatments.

    I was a stage III B.

    Good luck with your onc. Hopefully he/she can provide you with an alternative medication to help you out. My onc said we could try irinotecan, but he later said that the 5-FU and Leucovorin would be sufficient.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #6
    Old School
    I had only 5FU and leucovorin with a dash of camptosar. I was stage 4 with liver mets. But this was awhile ago, 9 yrs to be exact. It worked fine. Been clear ever since. As far as side effects, I am a bad example, as I had none. Honestly, none.

    Hope it works well for ya!

    Stacy <----who has been trying to keep from posting because I feel like I hardly know anybody on here anymore, even though I've been on here since I found this place in 2003 LONG after my treatments were done (2002). Happy Thursday!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #7
    StacyGleaso said:

    Old School
    I had only 5FU and leucovorin with a dash of camptosar. I was stage 4 with liver mets. But this was awhile ago, 9 yrs to be exact. It worked fine. Been clear ever since. As far as side effects, I am a bad example, as I had none. Honestly, none.

    Hope it works well for ya!

    Stacy <----who has been trying to keep from posting because I feel like I hardly know anybody on here anymore, even though I've been on here since I found this place in 2003 LONG after my treatments were done (2002). Happy Thursday!</p>

    Stacy
    Thanks for posting! It's always a great inspiration to have someone who has so many years under their belt and to have them clear is just the best.

    Did you know that the site started a long term survivors board? I mention it as it might be somewhere that would work for you. But, please ... we love those rays of hope that the long term survivors are for us.
    :)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #8
    Lori-S said:

    Stacy
    Thanks for posting! It's always a great inspiration to have someone who has so many years under their belt and to have them clear is just the best.

    Did you know that the site started a long term survivors board? I mention it as it might be somewhere that would work for you. But, please ... we love those rays of hope that the long term survivors are for us.
    :)

    Xeloda
    Is a very common maintenance chemo and is almost the same than 5fu ( fluoracil ), advantage of Xeloda and l guess that's why is more common as manteinace chemo is that is a pill so you don't have to be hooked to the pump for 2 days.
    So I guess 5fu is a good option as post op chemo, despite uncomfortable to handle with!
  • geotina
    geotina Member Posts: 2,111 Member
    #9
    pepebcn said:

    Xeloda
    Is a very common maintenance chemo and is almost the same than 5fu ( fluoracil ), advantage of Xeloda and l guess that's why is more common as manteinace chemo is that is a pill so you don't have to be hooked to the pump for 2 days.
    So I guess 5fu is a good option as post op chemo, despite uncomfortable to handle with!

    Pepe:
    When George was on 5FU and Leucovorin as a maintenance chemo there was no pump. He just got the IV infusion for about 30 minutes.

    Hugs - Tina
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #10
    geotina said:

    Pepe:
    When George was on 5FU and Leucovorin as a maintenance chemo there was no pump. He just got the IV infusion for about 30 minutes.

    Hugs - Tina

    Thanks to clarify it Tina!
    30 minutes every day?
  • ron50
    ron50 Member Posts: 1,723 Member
    #11
    Hi Friend
    I was on 5Fu leucovorin but In nearly put me into renal failure I spent so much time on the loo. I finnished up having 48 weekly sessions of 5Fu and levamisole every second week. This was one of the original regimes for late stage colon ca. I'm like Stacey ,for whatever reason it worked and I have been ca free for nearly thirteen years. Wishing you the best of luck for a ca free future. Ron
  • geotina
    geotina Member Posts: 2,111 Member
    #12
    pepebcn said:

    Thanks to clarify it Tina!
    30 minutes every day?

    Pepe:
    Was off for a while. No, 30 minute infusion was once a week. Thats why George said it was more of a nuisance than anything. But heck, if you think about it, if it keeps things stable and not progressing, etc. a 30 minute nuisance once a week is a small price to pay.

    Take care - Tina
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #13
    Welcome Friend
    Sorry, I can't help you out but wanted to welcome you to the forum.
  • Friendinpenn
    Friendinpenn Member Posts: 70
    #14
    To all regarding Stage iv colon cancer dx
    I wrote my first post yesterday and want to sincerley thank those that gave me a response. Being it was Veterans Day I had a holiday off today...(and I am an "old veteran")...after yesterdays episode with a severe reaction to Oxyplatiln...I went to my cabin today and split a pickup load of wood...like taking out my frustrations on my depression and angry and all...

    I felt strong... and the wood spliting seemed to somewhat take off the edge of the stress....I still have incredible strength as I'm told...even with the stage 4 thing...not sure where I found the strength...

    Sometimes when asked how I do it I say..." It' all an act" !!

    I don't know anyone on here yet....but I do know we all have something in common...and for that I feel close to you all....

    Again...I'm glad I joined this group.....I need you
  • Wenchie
    Wenchie Member Posts: 88
    #15
    Friendinpenn said:

    To all regarding Stage iv colon cancer dx
    I wrote my first post yesterday and want to sincerley thank those that gave me a response. Being it was Veterans Day I had a holiday off today...(and I am an "old veteran")...after yesterdays episode with a severe reaction to Oxyplatiln...I went to my cabin today and split a pickup load of wood...like taking out my frustrations on my depression and angry and all...

    I felt strong... and the wood spliting seemed to somewhat take off the edge of the stress....I still have incredible strength as I'm told...even with the stage 4 thing...not sure where I found the strength...

    Sometimes when asked how I do it I say..." It' all an act" !!

    I don't know anyone on here yet....but I do know we all have something in common...and for that I feel close to you all....

    Again...I'm glad I joined this group.....I need you

    5FU and Leuc
    Hey Jim:
    I'm stage IV too and I've been on 5FU and Leucovorin for the past year and a half plus Avastin. I have lung mets and as of 2 weeks ago, they've begun to grow again so I'll most likely go on Erbitux. The 5FU (minus either Oxy or Camptosar) worked for quite a while and although it didn't make the tumors vanish in the lungs, it kept them under control for quite a while.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #16
    Friendinpenn said:

    To all regarding Stage iv colon cancer dx
    I wrote my first post yesterday and want to sincerley thank those that gave me a response. Being it was Veterans Day I had a holiday off today...(and I am an "old veteran")...after yesterdays episode with a severe reaction to Oxyplatiln...I went to my cabin today and split a pickup load of wood...like taking out my frustrations on my depression and angry and all...

    I felt strong... and the wood spliting seemed to somewhat take off the edge of the stress....I still have incredible strength as I'm told...even with the stage 4 thing...not sure where I found the strength...

    Sometimes when asked how I do it I say..." It' all an act" !!

    I don't know anyone on here yet....but I do know we all have something in common...and for that I feel close to you all....

    Again...I'm glad I joined this group.....I need you

    More in common
    We need you too; I am glad you joined! Besides colon cancer, you have something else in common with some of the people here - the wood splitting thing seems to be big - maybe I'll have to try it! Take good care!
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #17
    First
    First off, let me say congrats on the successful surgeries!!!!
    I don't know a darn thing about your chemos. I've had Xeloda though, and it was good for me, but not necessarily the same for all.
    Your experiences on the liver and colon tumor surgeries however would be great if you could fill me in a bit on how they went for you, my surgeries are coming up soon.
    Winter Marie
  • Friendinpenn
    Friendinpenn Member Posts: 70
    #18
    herdizziness said:

    First
    First off, let me say congrats on the successful surgeries!!!!
    I don't know a darn thing about your chemos. I've had Xeloda though, and it was good for me, but not necessarily the same for all.
    Your experiences on the liver and colon tumor surgeries however would be great if you could fill me in a bit on how they went for you, my surgeries are coming up soon.
    Winter Marie

    To Winter Marie
    I had the colon surgery first...about two feet was resectioned...I was lucky not to need a bag...I seemed to recover quite well from this and was given FOLFOX chemo as a follow up...was sore for awhile...no lifting but after several weeks I did well...

    In my case, after a follow up PET scan they found two spots on my liver...went to University of Pittsburgh Medical Center (UPMC) and was told I needed to get something done and not to wait around too long to do it...I was like "where do I sign up"...

    I was fortunate to be a candidate for a liver resection...they took about half my liver out and told me the cancer was contained and did not spread as far as they knew...

    This time I was on FILFIRI for a chemo follow up....I will admit this surgery took longer to recover from, but again I did well and was back to work in 12 weeks while doing the chemo...

    I'm glad you have a chance to get this terror out of you...I will think and pray for you....you'll be fine...I know it....
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #19
    Friendinpenn said:

    To all regarding Stage iv colon cancer dx
    I wrote my first post yesterday and want to sincerley thank those that gave me a response. Being it was Veterans Day I had a holiday off today...(and I am an "old veteran")...after yesterdays episode with a severe reaction to Oxyplatiln...I went to my cabin today and split a pickup load of wood...like taking out my frustrations on my depression and angry and all...

    I felt strong... and the wood spliting seemed to somewhat take off the edge of the stress....I still have incredible strength as I'm told...even with the stage 4 thing...not sure where I found the strength...

    Sometimes when asked how I do it I say..." It' all an act" !!

    I don't know anyone on here yet....but I do know we all have something in common...and for that I feel close to you all....

    Again...I'm glad I joined this group.....I need you

    Hey Friend
    It's good to "see" you! Welcome to the board. We need you too.

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