number of rounds with oxaliplatin???

ccartwri
ccartwri Member Posts: 82
edited March 2014 in Colorectal Cancer #1
Hi all. I am on folfox4 and am scheduled for 12 rounds (stage 3 rectal cancer with high lymph node involvement). i am going through my fifth round now, woo hoo! have had some neuropathies with the oxaliplatin (jaw tightens when eating, finger tingle, sensitivity to cold, etc) but nothing i can't handle....give it all to me and kill those motherf.... evil cells! but today my oncologist suggested only doing the oxaliplatin for an abbreviated period. she said they usually do 4 rounds only and do the 5FU and leucovorin for 8 or 12 rounds. It seems to me from most of the posts on here that those who received oxaliplatin as part of the folfox regimen did so for 12 months or six months minimum, unless it was discontinued because of cumulative toxicity, right? can you share your experiences with this?
Thanks,
Claudia

who is still relieved at having a clean liver on MRI last week and cannot wait to spend a desolate christmas and new years in the outer banks of north carolina....

Comments

  • CAMaura
    CAMaura Member Posts: 719
    Hey Claudia,
    I was on Folfox6 (and have no idea what the number means...), but your onc may have a good plan - because a lot of people do not make it through the whole 12 with Oxy. I can think of at least four here who have posted other than myself. The cumulative toxicity could be key; my liver became impacted at 9 of 12 so I stopped the whole regime.
    My new motto is: I think I should wear platinum - not have it running through my body. Don't mean to sound jaded, but I think I worried more about what everything was doing to a healthy liver liver, lungs and heart; and I still do (with a bit of new roaring in my lungs).
    Anyway, see what others have to say, and you might get a second opinion or push your onc for more info - but Oxy is hard on the body. And while you are on chemo, I would really suggest looking at some nutritional info. It helped me so much to clean my body out after chemo and it will keep me healthy - and, with luck and good work, cancer free.
    All the best to you and I hope you receive lots of good info -- Maura - who is thrilled to be flying to LA for a beautiful and warm Christmas Holiday.
  • CAMaura
    CAMaura Member Posts: 719
    Oh Claudia,
    Forgot to ask.....why the MRI intstead of a CT scan for liver involvement? I asked my Gastro for the MRI but he is pushing for the CT (based on the radiologist's opinion). Do you know about the sensitivity of each? I would really appreciate less radiation......
    Thanks, Maura
  • crazylady
    crazylady Member Posts: 543
    Hi Claudia,
    I just finished my 4th round of folfox. My onc hasn't mentioned stopping the oxaliplatin at all. I had a scan today and am waiting for results, but as far as I know I will continue with what I've been doing unless I need a change because there is no improvement.
    I'm so glad that you got good news about your liver.
    Take care and enjoy the holidays!
    Jamie
  • taraHK
    taraHK Member Posts: 1,952
    Hi Claudia,
    I just finished FOLFOX. I was scheduled for 12 rounds. I completed 11. The last one was cancelled due to various factors (low WBC count, elevated liver counts, and in general my body showing that I was approaching toxicity. Had I proceeded with the 12th round, it would have been without the oxaliplatin (according to my oncologist). He never discussed skipping the oxaliplatin otherwise. I would check this out. Early on in my 'journey' I switched from FOLFOX6 to FOLFOX4 (or was it the other way around?? -- anyway, I went to 80% of the original dosage. This was mostly due to white blood cell problems.

    I can sympathise with the symptoms you describe. Like you, it was all stuff I felt I could handle. But please don't hesitate to contact me if you want to discuss anything. Fatigue hit me much harder after about round 9.

    Good luck! It ends! (and I am enjoying that right now).
    Tara

    congrats on the clean liver! hoorah!!
    And - enjoy Outer Banks -- one of my favorite spots -- altho i've only been there in summer
  • ccartwri
    ccartwri Member Posts: 82
    CAMaura said:

    Oh Claudia,
    Forgot to ask.....why the MRI intstead of a CT scan for liver involvement? I asked my Gastro for the MRI but he is pushing for the CT (based on the radiologist's opinion). Do you know about the sensitivity of each? I would really appreciate less radiation......
    Thanks, Maura

    Maura
    I had a PET CT and an MRI because i had suspicious activity in the liver. I think they use CT first as a good screener and the others more expensive if they need to confirm or reject. My surgical onco said the MRI is the most sensitive test for the liver.
    claudia
  • BusterBrown
    BusterBrown Member Posts: 221
    Claudia:
    I did 12 cycles of Folfox 4, Oxiliplatin, 5Fu, Luecovorin with teriffic results. In my case the folfox treatment wiped out 3 liver lesions in just 3 cylces, and I'm happy to report they lesions have not come back.
    Happy Holidays...
    Buster
  • wendy_21
    wendy_21 Member Posts: 30
    I've finished 2 rounds of FOLFOX6 with oxaliplatin (plus Avastin as part of a study for STage III colon cancer with 2 lymph nodes involved). So far only slight sensitivity to cold in my hands and strange sensations in my jaw when first eating. I'm scheduled for 12, but we will see what happens!
    Enjoy the holidays. And I'm with you -- give me whatever will kill all those evil cells!
  • andyc56
    andyc56 Member Posts: 42
    Claudia, my wife (stage IIIC) made it through all 12 rounds (with oxaliplatin) of folfox6. Doing just 4 rounds with it does not sound like the standard folfox protocol to me. I would suggest discussing further with your oncologist. Good luck and Merry Christmas! (I've been to Nags Head, Rodanthe, etc. many times-I'm sure its nice in winter, too!)
  • jana11
    jana11 Member Posts: 705
    hey claudia. When I did oxaliplatin - I stopped sooner than I had anticipated. Both times I did chemo, my onc stopped before I thought we would. I totally trust my onc and know that he is being very aggressive.... and, the side effects were never bad for me. I started chemo July and finished early Nov.

    Hope this helps.

    Have a wonderful christmas!! jana
  • fredrick55
    fredrick55 Member Posts: 9
    Hi Claudia,
    I have stage 4 colon cancer with mets to the liver and some spots on the liver and lungs. The liver tumor was the size of an egg, I did 4 rounds of Oxaliplatin, Leucovorin, and 5 fu ( actually the last round the 5fu 46 hr. pump was substituted for Xeloda pills. I had a ct pet scan done last week and the cat scan showed the lungs and liver clear. The pet scan showed some activity where the liver tumor was which means it's there but too small for the cat scan to pick up. The chemo for me is doing remarkably well. I am scheduled for 4 more chemo treatments with Oxaliplatin and Xeloda, then a re-evaluation for possible surgery. Don't give up hope, I had hundreds of people praying for me, I believe in the power of prayer and praise God for His healing powers. By the way I complained about the jaw pain and they said I was the first to experience it.
  • Kanort
    Kanort Member Posts: 1,272

    Hi Claudia,
    I have stage 4 colon cancer with mets to the liver and some spots on the liver and lungs. The liver tumor was the size of an egg, I did 4 rounds of Oxaliplatin, Leucovorin, and 5 fu ( actually the last round the 5fu 46 hr. pump was substituted for Xeloda pills. I had a ct pet scan done last week and the cat scan showed the lungs and liver clear. The pet scan showed some activity where the liver tumor was which means it's there but too small for the cat scan to pick up. The chemo for me is doing remarkably well. I am scheduled for 4 more chemo treatments with Oxaliplatin and Xeloda, then a re-evaluation for possible surgery. Don't give up hope, I had hundreds of people praying for me, I believe in the power of prayer and praise God for His healing powers. By the way I complained about the jaw pain and they said I was the first to experience it.

    Hi Claudia,

    As you can see, we all have had different experiences with oxaliplatin. I had 12 treatments with it. On about the 9th or the 10th, I developed toxic hepatitis...extremely high liver levels. At that point I had to wait until they corrected themselves and then I resumed oxaliplatin. My doctor did not reduce my dosage but rather extended the infusion time from two hours to three. It has been a year and a half since my completion of Folfox 4.

    I'm thinking of you and think it's wonderful that you are seeking additional information on your treatment options.

    Keep us posted on your progress.

    Hugs,

    Kay
  • scouty
    scouty Member Posts: 1,965
    I did 8 months of oxil and avastin (16 rounds) and the side effects really got bad the last 2 months. I have been off of it for a year now and realize the damage from the neuropathy is going to be permanent. When I decided to stop doing chemo last year and follow an alternative approach, it was because of how the chemo made my body and brain feel. I decided I would rather die from the cancer then the chemo!!!!! I wanted my quality of life to get back close to where it was. I have now learned that Oxil. is being downplayed some on it's duration at the comprehensive cancer centers around me (Duke, UNC and Wake Forest) because of it's toxicity and long term effects.

    Heed the advice from your oncologist. And if you really want to give the **** cells a dose of their own medicine, try juicing and change your diet!!!!!! Stop fast foods, processed foods, sugar, bleached white flour products, etc. etc, etc. Eat raw fruits and veggies. Eat as close natural foods as you possible can. Eat only God made foods, stay away from man made synthetic crap.

    I love the Outer Banks and have a wonderful time there. FYI, the Weeping Radish Restaurant in Nags Head serves loads of natural and healthy meals. Cutting edge kind of a restaurant!!!!!

    Happy holidays Claudia,

    Lisa P.
  • sam991
    sam991 Member Posts: 16
    I had a modified FOLFOX (adjuvant therapy) but with I believe the same level of oxaliplatin as FOLFOX4 (85 mg/square meter) for 12 sessions over 6 months and I had no lymph nodes involved, negative CT scan but a suspicious PET scan with a couple of hot spots probably due to healing from the surgery. I had the usual or perhaps milder than you describe neuropathies during treatment which became worse as treatment progressed. My neuropathy has continued with foot/hand numbness and some pain, but not severe although I had some trouble driving and feeling the pedals but a bit better now. It has been almost 9 months since I finished treatment so the neuropathy seems here to stay for a while but I am 67 years old and I used to drink "a bit" which could make my nerves more susceptible to damage. During the treatment my oncologist said he would skip a couple of weeks to allow recovery if the neuropathy got too bad. Terminating the oxaliplatin was apparently an option if things got really bad which they didn't in my case. Also my neuropathy seemed to go away after treatment ended but began again about a month later which is apparently not unusual. My blood tests stayed pretty good throughout treatment which may also be a factor in staying with the oxaliplatin. If you are not already receiving them, ask about calcium and magnesium drips which may (some research says) reduce neuropathies. I had them but I have no way of knowing if things would have been worse without them.
    Colin
  • timlou
    timlou Member Posts: 60
    CAMaura said:

    Hey Claudia,
    I was on Folfox6 (and have no idea what the number means...), but your onc may have a good plan - because a lot of people do not make it through the whole 12 with Oxy. I can think of at least four here who have posted other than myself. The cumulative toxicity could be key; my liver became impacted at 9 of 12 so I stopped the whole regime.
    My new motto is: I think I should wear platinum - not have it running through my body. Don't mean to sound jaded, but I think I worried more about what everything was doing to a healthy liver liver, lungs and heart; and I still do (with a bit of new roaring in my lungs).
    Anyway, see what others have to say, and you might get a second opinion or push your onc for more info - but Oxy is hard on the body. And while you are on chemo, I would really suggest looking at some nutritional info. It helped me so much to clean my body out after chemo and it will keep me healthy - and, with luck and good work, cancer free.
    All the best to you and I hope you receive lots of good info -- Maura - who is thrilled to be flying to LA for a beautiful and warm Christmas Holiday.

    What does "your liver became impacted mean?" My hubby is having problems with liver enzymes had to be taken of lipitor for high cholesterol and I have been worried about what this implies since he did have all 12 rounds of oxaliplatin. We have a port flush appointment on Thursday but aren't scheduled to see the Doc till February that will be his one year anniversary off chemo. I am living in limbo happy when he's happy scared when he's scared. I think you are the expert on juicing if so would you send me some info. Thanks Louise and Tim