• Stopping chemo early?

    Asked by Skyemberr on Monday, November 21, 2016

    Stopping chemo early?

    I am currently on round five out of nine in FOLFOX chemo. Last time I saw the oncologist he said that five may be my last round due to neuropathy developing in my hands and neutrapenia every single time that causes a problem and lands me in the hospital.

    My question is if any of you were told to stop early, and what you think about the doctor wanting to stop? Should I be pushing to keep going even though it's making me pretty ill?

    13 Answers from the Community

    13 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Skyemberr, what does he plan to do instead? Does he just want to stop without any other treatment plan?

      I think he's considering your quality of life by recommending that you stop that treatment. There MUST be something else instead???

      (I know there are many others here who have stopped treatment warly. I hope they see your question and respond.)

      over 3 years ago
    • geekling's Avatar
      geekling

      I think you may have a compassionate doctor. Ask him or her about alternatives or have, perhaps, the drugs done their job early?

      Point being .. Do you still have a cancer? Is it shrinking, if you do? If it isnt all gone, what are your alternatives?

      And then get a second and independent opinion too.

      Hoping for a best outcome for you.

      over 3 years ago
    • abrub's Avatar
      abrub

      Many people do not complete the chemo; sometimes the damage is too much. (I have permanent neuropathy from Folfox.) 5 is more than half of your scheduled rounds. See how they are monitoring it, but don't be afraid to drop it. I've had friends who couldn't have the chemo at all.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      My Dr. didn't stop chemo but they did lower the dosage and postpone the other half for two weeks. Like geekling, I recommend a second opinion. Also there are clinical trials out there for colon cancer perhaps you can research to see if some of them are right for you. The National Institute lists some of these trials

      over 3 years ago
    • IKickedIt's Avatar
      IKickedIt

      The neuropathy is caused by the oxaliplatin which is not the primary drug in FOLFOX. It is not uncommon to stop the oxaliplatin, but continue with the 5FU which is the primary drug and also the cause of the neutropenia. They usually give a bone-marrow growth stimulant (i.e. Neulasta) to off-set the neutropenia, but you've mentioned that your neutropenia has been severe with complications. So unfortunately, both drugs are affecting you in an adverse way.

      So while there are resolutions for both these problems, your doctor may be weighing out the possible risks of long-term, permanent damage. As abrub has mentioned, permanent damage due to neuropathy is a real possibility. I also have it, and my oncologist said that because mine (and others) has been so severe and has not resolved completely, he is now seriously considering not giving his newer patients all the rounds of treatment.

      Honestly, I would have been nervous to have completely stopped "early." We all know our most important goal is to do as much as we can possibly do to get rid of the cancer completely. However, when you are going through adjuvant therapy, it's more of an insurance policy. Many times, they're not even sure you have cancer anymore. It may have all been removed with surgery, or eradicated with radiation or only a few rounds of chemo. They don't know for sure what is the correct number of treatments should be. I had to go through 12. You are going through 9. My doctor said they are studying whether it should only be 6. We all think the more we get, the better the probability of completely being cancer-free. However, because we don't know at what point we are cancer-free, we also don't know when it is the right time to stop treatment and taking into consideration when the long-term, permanent risks outweigh the possible gains (of which no one is certain).

      Just for the record, my oncologist stopped the oxaliplatin after 8 rounds. I did have a lot of complications and now have long-term, permanent damage....but I have been cancer-free for five years.

      over 3 years ago
    • Boomgirl's Avatar
      Boomgirl

      I have neuropathy after 12 rounds of FOLFOX, presumed permanent. My oxaliplatin was reduced after the first round but I still had the cold-induced neuropathy after each round. After treatment my neuropathy in hands and feet is no longer related to cold; now it's there all the time. Was it worth it? I don't know yet. CT scan on the 29th, oncologist appointment Dec 5th.

      over 3 years ago
    • spdsgrl's Avatar
      spdsgrl

      I had to quit the oxyliplatin after one or two treatments and just did 5fu. After that I had remission for a few, months and started folfiri. After that I started Stivarga pills and added Herceptin infusions a couple cycles after starting Stivarga. I have been on that almost 2 years. Side effects are getting worse, but can still handle them. So far cancer is progressing slowly so my doctor is happy. I am praying it continues to work. I hope it all works out for you. I just wanted you to know there are other chemos out there that you can try if you have to. (*Oh..I had genetic testing on my tumor and Jane wild type gene wroth HER receptors and that's 2 I'm on my latest specific cocktail)

      over 3 years ago
    • Skyemberr's Avatar
      Skyemberr

      Thank you for all the excellent advice! I was thinking that my doctor was trying to be compassionate but wanted to double check that he's not off the wall. I'll get a second opinion, but more importantly I think I need to ask him what my risk is if I stop now vs. risk if I continue with the chemo. At least I already did a long course of Xeloda prior to cancer surgery. Doc told me that they consider that chemo as cumulative with FOLFOX, which is why he only wanted me to do 9.

      It makes me nervous to just stop because I know i had regional metastases, and also it got into my lymph system, so I'm not sure it's all been killed off at this point. Maybe the answer is doing another chemo instead as some of you pointed out above.

      I hope you all have a wonderful thanksgiving!

      over 3 years ago
    • Sylvc56's Avatar
      Sylvc56

      I was only able to complete 5 cycles of XELOX due to the neuropathy. When I mentioned to my oncologist this he immediately dropped the oxailapltin and kept me on Xeloda. I wanted to push another cycle but glad I didn't, it got worse before it got better.

      over 3 years ago
    • SandiA's Avatar
      SandiA

      Hi, I was on a. Clinical trial that was suppose to last for two years. It was for nivolumab. I had to stop early. I completed over a year but I had to keep stopping and taking breaks due to major achy joints and fevers. There were days when getting out of bed and getting some clothes on wa a major challenge. So my doctor stopped the treatments in. July. It was hard and I knew the toll it was taking on my body but I was afraid to stop. I have asked him about other options but we are still trying to manage my side effects and hopefully taper off the steroids. I think for now he is leaning towards monitoring me closely and no treatment for a while. It's a little scary, so i know how you feel. My doctor did say we can look at other options when I am stronger or when the scan indicate I may need additional treatment. I wish you all the best and let us know how it goes.

      over 3 years ago
    • Skyemberr's Avatar
      Skyemberr

      Ok, so I went in yesterday, and my doc was at the other clinic so I did not get to meet with him.

      I prepared to start chemo, added the nicest asked me questions about side effects I'm having. I told her about the neuropathy and she immediately stopped questioning me and went to call the doctor. Two hours later she came back to my bed and told me I was approved to have chemo, but without the oxyplatin.

      It turned out I have stage three to four OTIN, which is PROGRESSIVE oxyplatin neurotoxicity. The doctor was concerned that if I was actually a stage four, I could progress to stage five at next dose and it could kill me. No joke!

      I am on chemo today, BUT IT'S LEUCOVORIN AND 5FU. It's so much less awful feeling.

      This was a much more dramatic outcome than I had been aware of for FOLFOX, so was pretty surprised when I came home last night and looked it up. It's different than the cold neuropathy, and usually has progressive neuropathy in the extremities that sticks around after the cold neuropathy has left you. I think that I read that repeated severe and long lasting neutropenia can be part of progressive as opposed to acute toxicity.

      So I wanted to post here what I learned yesterday. If any of you are reading this and have neuropathy in your extremities, be sure to discuss oxaplatin toxicity with your oncologist and ask him to lay out a plan for you

      over 3 years ago
    • Boomgirl's Avatar
      Boomgirl

      Thanks for reporting this. I had my scan today and see my oncologist on Monday. I will see what he says. I do have neuropathy in my extremities after the chemo. My family doc has me on Lyrica. I will keep you posted.

      over 3 years ago
    • Skyemberr's Avatar
      Skyemberr

      @Boomgirl hopefully you will never have to take it again!

      I was already on lyrica for neuropathy I'd had before cancer, and it had helped, but it didn't make it go away. Hopefully it can make a big dent in the stuff in your extremities!

      over 3 years ago

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