Stopping Folfox after 8?

2»

Comments

  • EissetB
    EissetB Member Posts: 133
    edited June 2017 #22
    Talked to my onc yesterday

    I talk to my onc yesterday about stopping FOLFOX treatment at 8 or 10. She said I have 7/15 lympnodes were affected, so said she can't give me the 8 or 10 treatment only. I guess if you passed a certain number of the affected lympnodes of which is 5 then it's a no-no. I was sad to hear her answer :(

  • Phil64
    Phil64 Member Posts: 838 Member
    Hard decisions. I stopped the

    Hard decisions. I stopped the first chemo after ten treatments because CEA was climbing (not a choice). And I have permanent (we think) neuropathy in my feet. Not debilitating but certainly a major annoyance affecting walking and sleeping.

    That being said I always trusted my oncologist's intuition and flollowed his call to the tee. 

    Good luck and best wishes. 

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited June 2017 #24
    EissetB said:

    Talked to my onc yesterday

    I talk to my onc yesterday about stopping FOLFOX treatment at 8 or 10. She said I have 7/15 lympnodes were affected, so said she can't give me the 8 or 10 treatment only. I guess if you passed a certain number of the affected lympnodes of which is 5 then it's a no-no. I was sad to hear her answer :(

    Control

    But remember, doctors give advice but you ultimately control your own medical treatment.

  • mozart13
    mozart13 Member Posts: 118
    Dose change

    My oncologist dropped dose of oxilaplattin a bit, it made difference like day and night in side effects.

    Good Luck!

  • Tunadog
    Tunadog Member Posts: 235 Member
    I don't think I'll ever do more Oxaliplatin..

    I had the full run (6 months)Oxaliplatin and Xeloda. I handled it pretty good. After my last infusion I coasted for a couple of months and then it hit me hard. 

    A year later my hands are 95% resolved and my feet are getting there. My balance is still a bit off. I still don't drive.

    I have had a recurrence and I'm taking Xeloda with a shot of Avastin every three weeks.

    Be careful.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    My Neuropathy Permanent

    Did 8 rounds and my neuropathy was permanent.  I'd made a comment to my oncologist about my symptoms and she told me that "it was only a nuisance."  When seeing her last my visit my statment to her was "I'm suffering because I'm not able to feel my hands and feet and it's much more severe than you thought."  She told me "yes, we've gotten some statements about that.  She wouldn't reduce my oxy and that's what made me now dependent on Gabepetinen everyday.  You need to do what is right for you.  Wishing you well.

    Kim

  • ellend
    ellend Member Posts: 109 Member
    Only 8 treatments scheduled

    The oncologist prescribed 8 FOLFOX treatments as adjuvant therapy. He said it was because I already had undergone chemo/radiation prior to surgery to shrink the tumor. I didn't have lymph node involvement, so that may have also impacted the number of treatments. I had to stop the leukovorin and 5-fu portion of the infustion after 2 weeks because my platelet count had dropped too low. I still had the 5-FU bolus for 48 hours though.

    I'm glad I didn't have to endure more because it was getting cumulative. I finished at the end of October, but I still have lingering neuropathy in my hands and feet. I'm not sure whether it is getting better or not, but it isn't as bad as some. At least it isn't really painful, mostly just tingly and annoying. I wear socks to bed because the cold seems to bother my feet, even when it is warm out.

    Best of luck to you,

    Ellen

  • MAliceR
    MAliceR Member Posts: 98
    Did 12, had lots of neuropathy

    When I was 1st diagnosed with stage 3 colon cancer, I had surgery then they prescribed 12 infusions of Oxaliplatin and Xeloda. At the 8th session my nueropathy got so bad I was numb to my knees and my fingers were completely numb. My oncologist was very concerned about stopping my treatment at 8. She said I had an agressive tumor and wanted to go with the full treatment. She referred me for accupunture. I had 38 sessions of accupunture. Starting before I finished the chemo. By then end of the 38th session I had all the feeling back in my fingers and most of the feeling back in my feet. It has been 5 years and to date the only issue I have is a bit on the very ends of my toes and a spot about the size of a quarter on the ball of each foot. I make sure to wear good fitting shoes and I walk every day to keep my nerves alive. I am not sure going the full 12 helped. I have since had to recurrences. My 2nd recurrence was followed by surgery and then 6 months of a different chemo. My oncologist didn't want to use the same thing and risk more neuropathy. Plus she wanted to be more aggressive. I was honestly sick for 6 months. Could hardly get out of bed. Kept telling myself I was ensuring this evil cancer didn't come back. About 15 months later it did. This time we did surgery but no chemo. I have been NED for 14 months now. In fact, just starting my round of tests. Sitting here today waiting for some test results. I guess where I am going with this is, no one, including your oncologist has a crystal ball. I think you have to be an active player in your treatment. Researcha and get the facts to the best of your knowledge and then work with your Dr. to find the best treatment for you. I would suggest if you are dealing with horrible neuropathy you ask for accupunture. I firmly believe it made all the difference for me. Blessings.

    MAlice

  • SophDan2
    SophDan2 Member Posts: 150 Member
    AmaP3 said:

    Quit after 7

    Sorry to hear you've had a recurrence. I tell my family that recurrence is fairly likely no matter what I do, but I know it will be tough if it happens. I think 7 or 8 rounds of full-dose Folfox is good enough. I know I'm no oncologist, and I may be pushing toward getting off just because I'm sick of the whole routine. But, I really think I've reached a happy medium among all of the opinions out there. 

    I'm curious, did your neuropathy decrease or disappear?

    Did you stop at 7?

    Hi AmaP3,

    In the end, did you stop after 7th treatment, if so how do you feel now. I just completed my 6th and I'm on the same train of thought you posted.

  • lizard44
    lizard44 Member Posts: 409 Member
    My oncologist scheduled only 8

    There may be different protocols for different stages and  conditions, but for whatever reason, my onc   decided on 8, not 12,  neoadjuvant treatments with  FOLFOX plus Avastin for my Stage 4 with liver mets, followed by  radiation  with 5FU. Turns out the  chemo and radiation shrank the tumors  so that they were not seen on CT scans and I avoided surgery, although it's been just over two years now and surgery  may be back on the table in the near future.  I was one of the lucky ones as far as side effects from the  FOLFOX, but that may also be because of the premeds I received before the infusions to prevent nausea, etc. Also,my onc told me to not ever let my hands and feet get cold, so I wore socks all the time and gloves whenever I  touched anything cold. I was also told not to eat or drink anything ice cold- something hard to do in Alabama in the summer, but it paid off and I  had minimal problems. I do have some mild neuropathy in my feet but it's more annoying than debilitating or painful. Edited to add that I did  have a problem with low white blood cell counts while on FOLFOX and  needed to take Neupogen shots during the treatment.

  • mozart13
    mozart13 Member Posts: 118
    edited August 2017 #32
    Study

    Here is the link to nteresting study, it looks 7 is sufficient but 8 igives you better chance:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980863/#!po=27.5000