How many cycles are enough?

cahalstead
cahalstead Member Posts: 118
edited March 2014 in Colorectal Cancer #1
Hi to all,

Please forgive me for, again, coming to you guys w/your comments and experiences regarding the total number of cycles one needs to finish the chemo Folfox regimen and feel okay about the decision and outcome. This is becoming a real issue for me since I'm winding down with the treatments.

I'm going to be doing my 8th Folfox cycle next week. I'm just doing the 5fu, my onc stopped the oxy for the last two treatments to see if my neuropathy would improve. I'm having real weakness in my legs and he noticed a change in my reflexes. I'm curious as to how many of you had to cease the treatments early and what the reasons were. My dr said the clinical trial protocol that he uses allows for cessations and reductions in the dosage. He is going to put me on a 50% reduction when I do return to the oxy. He also that the reduction in treatment and dosage will not affect the success of the chemo.

Please give me your experiences and any advice if you have it. You guys have been through it all and I really respect your thoughts!!

Thanks.

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    I know of many warriors that have had their chemo strength reduced, and they improve dramatically! AND it hasn't affected the overall treatment. Seems that once things stabilized, at this lower dose, the frequency is increased...

    As my onc once said to me: "The goal is to kill the cancer, and save the patient, not the other way around!"

    PLEASE keep us posted...

    Hugs, Kathi
  • JoyceCanada
    JoyceCanada Member Posts: 134
    Canadian regime????

    I was diagnosed with stage III rectal 2 nodes involved.

    My treatment was:

    1) 2 rounds of Folfox

    2) 28 rounds 5 days per week continuous 5FU/radiation

    3) 6 rounds of Folfox

    I was told this was the standard treatment for Rectal Cancer.

    I have been NED since October 2006. I have been left with quite extensive neuropathy in my feet.

    I have read that the British Cancer society has been doing research and have suggested that 6 rounds of Folfox may be all that it necessary.
  • jams67
    jams67 Member Posts: 925 Member
    My understanding is that each person's tolerance and the effective number and strength of doseage are different. I had only 5 1/2 cycles of chemo, because my body was saying that is enough. Also, at that point, I was NED so onc called quits. Your decision is one only you and your doc can make.
    Jo Ann
  • davidsonxx
    davidsonxx Member Posts: 134
    My tumor was T3N0M0 but there were only 6 nodes to test so I opted for the chemo. I made in through 3 rounds of Folfox and stopped. The chemo made me so sick my onc recommended I quit. Given the clear nodes I was glad to stop. I had a lot of muscle weakness from the chemo. I wasn't sure I could walk to the car after my last treatment. Thank goodness I didn't have to drive. I had to be very careful about what I picked up with my hands because I didn't have much grip strength. The chemo also really hammered my blood counts.

    I worry abot a recurrence since I was barely into chemo when I stopped but still think it was the right decision for me.

    I've seen some preliminary trial results that say 9 treatments of Folfox are as effective as a 12 cycle course. I also have seen the British study that is looking at the effectiveness of just 6 courses.

    I understand your struggle with the chemo and whether to continue. If I had had a positive node I'm not sure what I would have done. It's a tough choice to make.

    Good luck and keep us posted on how things go.
  • cahalstead
    cahalstead Member Posts: 118

    My tumor was T3N0M0 but there were only 6 nodes to test so I opted for the chemo. I made in through 3 rounds of Folfox and stopped. The chemo made me so sick my onc recommended I quit. Given the clear nodes I was glad to stop. I had a lot of muscle weakness from the chemo. I wasn't sure I could walk to the car after my last treatment. Thank goodness I didn't have to drive. I had to be very careful about what I picked up with my hands because I didn't have much grip strength. The chemo also really hammered my blood counts.

    I worry abot a recurrence since I was barely into chemo when I stopped but still think it was the right decision for me.

    I've seen some preliminary trial results that say 9 treatments of Folfox are as effective as a 12 cycle course. I also have seen the British study that is looking at the effectiveness of just 6 courses.

    I understand your struggle with the chemo and whether to continue. If I had had a positive node I'm not sure what I would have done. It's a tough choice to make.

    Good luck and keep us posted on how things go.

    Added info, I was diagnosed as Stage III (colon), one local node involvement out of 15. I'm just so unsure as to how far I want to go with treatment since I'm getting close to the end. Thanks.
  • claud1951
    claud1951 Member Posts: 424 Member
    I doubt this will help you, in an answer, but you have helped me in that you mentioned muscle pains. I am having them , too, in my legs, and couldn't figure it out. I have to sit down more often and just can't stand like I used to.

    My Onc told me 6 months worth of treatment. Stage 3 with 2 lymph nodes (cancereous) out of 28. So far I have had 4 Oxaliplatin and 3 with 14 days of Xeloda (each treatment). Had to be taken off of the Xeloda because my hands and feet were peeling terribly bad. The 4th treatment,they put me on the "pump". Wear that for 46 hours.

    Repeat every two weeks.

    I also have the effects from the cold. Can't eat, drink or touch anything cold.

    Next time I see Onc..I will ask him how much longer I have to go. Nurses don't think I'll have the whole 6 monhts.

    It's a mind game we play. Just don't know the right answer but I have to trust the doctor on this one. I had mentioned to him, once, if I had to go the 6 months...he said if we didn't go 6 months and the cancer came back, we wouldn't like ourselves to well.

    But then...if we can't handle the chemo...


    Wishing the best for you

    Claudia
  • davidsonxx
    davidsonxx Member Posts: 134

    Added info, I was diagnosed as Stage III (colon), one local node involvement out of 15. I'm just so unsure as to how far I want to go with treatment since I'm getting close to the end. Thanks.

    For me the key question I asked myself was "If the cancer comes back will I really regret stopping or not taking the chemo?" As long as the answer was yes I stayed with the chemo. It was why I opted to try it in the first place. The answer became no when the chemo made me so sick. I did the best I could to try and avoid beating myself up about a bad choice if I have a recurrence. What makes it all so hard is that there is no "right" answer because we can't see the future. You have to make a decision and just make the best of what comes after.
  • AveriRN
    AveriRN Member Posts: 61
    I'm not sure what the best # of doses is. My onc continued giving me the oxal for 3 mos after I was in remission. I ended up with a total of 14 cycles and it took 11 months. I had neuropathy in feet and hands but he did not want me to miss any scheduled doses. He did however do 20-30% reductions of dose a few times. I am seeing that it appears there is no "set" # of doses.

    Averi
  • apache4
    apache4 Member Posts: 272 Member
    I have Stage IV colon cancer and have had 15 treatments over the past year. The standard..5 Fu pump, Oxaliplatin, Leuvoricane (sp?) and Avastin. I would do it every two weeks, then skip to the third week and back to two sessions two weeks apart. This pattern continued for the year and now he has me on every three weeks. My counts have gone low, but I only had to have Neuprogen twice. I have neuropathy in my fingers and feet, but have told my Dr. it has to be alot worse for me to stop my chemo! With my diagnosis there is no "stopping point"...it will be when I absolutely cannot tolerate it any longer. For myself, I will do as much as I can. I still do all the things I like including Taekwondo and am happy to be stable. I had no lymph node spread but my liver has too many tumors to count. I am 63..a mother and grandmother. I am fighting like hell!
  • lfondots63
    lfondots63 Member Posts: 818 Member
    Hi,

    I think this is a very personal thing. You really have to feel totally comfortable with what you decide. Ok, what I did. I made it through 9/12 treatments. Stage 3 colon cancer in the sigmoid. In the wall but not through. I'm diabetic and the oxiplatin was kicking my behind. My blood sugars were always high and my neuropathy was getting worse each treatment. I told my onc that I thought my body was saying stop so that is what I did. My onc was comfortable with my decision and I will never regret it. The weird thing is that the neuropathy in my feet got worse after treatment. I had it in my hands too but that has gotten loads better. I'm going to try a compound cream that someone mentioned here. I now just have to find a pharmacy that will make it. Will keep you posted on the results. I'm still "clumsy" with weakness in my legs and bad balance. I think that is from the chemo but might be partially from not much feeling in my feet. Take care and whatever you decide is right for you is the best.

    Lisa F.
  • hoagiemom
    hoagiemom Member Posts: 87 Member
    I'm on my 9th cycle out of 12 and I understand where you are coming from. My platlets were low and my onc lowered the oxy. He said he rather lower it then stop it completely. I worry that since he lowered it will it make a big difference on it coming back. I have to have faith in my onc I think it is better than quiting it completely. Even though I ready for it to be over. I'm stage 3 colon with 2 nodes. My side effects are tolerable but boy am I ready to end this. Hang in there and we'll both be done with this sooner then we think.

    Michelle
  • kmygil
    kmygil Member Posts: 876 Member
    It's individual. I had dosage reduced 25% after my 5th cycle, and had to quit altogether after 9th cycle. I am almost 5 months post chemo and having real problems with neuropathy, chemo-brain and leg pain. I feel I should have stopped sooner.