Folfox - 12 rounds - Not sure I can do this

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  • Allidoisyoga
    Allidoisyoga Member Posts: 37
    Trubrit said:

    Neuropathy

    Do not let it get too bad - unless it already has, because there is a good chance you will suffer from it for the rest of your long life.  I speak as an example, and there are several here, who will also say the same. 

    I hope that you have a good relationship with your Oncologist, as you need to talk to him about exactly how you are feeling, especially the neuropathy.   The fatigue, weakness and many of the other things you are experiencing, will go away, once treatment is over, but the neuropathy may haunt you every day. 

    I think I mentioned before, that I had nine treatments of FOLFOX. I had radiation and 24/7 5FU, and as a Stage IV patient I have surpassed their five year prognosis and heading into my seventh year. It can be done, but you have to fight all the way. 

    I remember - mostly because I did a video blog for myslef, during treament - saying more than once 'I just want to be me, again'.  I did not recognise myself any more. Like you, I was beat up and beat down.  It does get better, I promise you. 

    So, chin up and ride the storm out. Talk with your Onc about your neuropathy and ALL that you are experiencing both physical and emotional. Stick with us, here, and we will stick with you. Ride the strom with you. 

    Tru

    Thank you

    Hi Tru

     

    Thank you for your reply. Thank you for sharing your story.  It is a rough treatment for sure. I am supposed to have 12 rounds of Folfox.  Not sure how far I will make it... just one treatment at a time. Thank you for your compassion and love.

  • Allidoisyoga
    Allidoisyoga Member Posts: 37
    zx10guy said:

    Some points.  The other

    Some points.  The other members had covered a lot of good information.  As have been stated, the Oxali can be reduced or eliminated all together while still going through the main bulk of the chemo treatment.  To emphasize, 5FU is the main workhorse chemo drug in the FOLFOX treatment.  It's not Oxali.  Oxali is an additive to enhance the treatment to get a few percentage points more effectiveness.  Some information about Oxali.  Why it is a cause of neuropathy is because Oxali has platinum in it.  It's a heavy metal that attacks nerves.  It starts at the nerve endings and works its way in.  This is why your extremities are the first to experience symptoms.  It is very important you discuss signs of neuropathy and how prolonged they are.  As had been said by the members, the neuropathy can get severe and be permanent.  If this is addressed early, the symptoms can be temporary or at least mild.  I still have some mild neuropathy at the bottoms of my feet 7 years after my last chemo treatment.

    Celebrex.  I tried it and couldn't stay on it.  Your oncologist would probably be monitoring for this.  But my liver enzymes shot up when I went on Celebrex during chemo treatment.  My doc pulled me from using Celebrex because of this.  So be careful if you go down this route.  In addition, I don't know if anything has changed but there is a chance Celebrex won't be covered by your insurance.  As far as I know, Celebrex hasn't been officially recognized to be a therapy for cancer.  At the time I took it, it certainly wasn't.  I had to pay out of pocket and at that time I had to go name brand as no generics were available.  I paid $370 for a little over a month's supply.

    Recovering from symptoms.  I did this inadvertently but there was science behind why this was helpful for me.  Unfortunately the best resource that explained this was Tom Marsilje's online blog.  He wrote an article about fasting during chemo.  Sadly he passed away a few years ago and his blog page has been taken down.  It was a wealth of information as Tom was a cancer drug researcher.  He was also interviewed for the PBS special on cancer called the Emperor of All Maladies.  From what I remember, there was mounting evidence and research that fasting just before starting a treatment cycle and during resulted in better effectiveness of the chemo treatment and faster recovery.  I know when the nausea hit, I was eating very little during my infusions.  I quickly discovered that my recovery took only a day or two versus almost a week.  I also started the anti-nausea meds the day before going in for my infusions.  You want the anti nausea meds in your blood stream to get ahead of any nausea before the symptoms start.

    And has been stated, the reduction of cycles from 12 to 6 has been green lit as an approved treatment regiment as there appeared to be enough evidence from a clinical trial to show there was no reduction in effectiveness and outcome with reducing the cyles.

    Hope you get through this.

    Thank you for the information

    wow. I was under the impression that the Oxaliplatin was the main cancer drug and the Folinic Acid and 5FU were in addition to increase the effectiveness. I am now having neuropathy in both my hands and feet so I will keep discussing this with my doctor. 

    Could you please let me know the details of the fast? I am currently receiving my treatments on Monday and not feeling better until Friday.  I would think getting all these infusions on an empty stomach would cause horrible nausea? But I am open to anything that will help with this treatment.

     

    Thank you for your support.

  • Allidoisyoga
    Allidoisyoga Member Posts: 37

    Ugggg

    Oh, I'm so sorry you are going through this.  I've been there and it's hard to sometimes get through the day.  Please, let your doctor know about the neuropathy.  My doctor wouldn't listen to me when and now I've got permanent damage where I'm on medication every day.  They are able to reduce the Oxy if you can tolerate it.  Don't give up hope, as you have us here.  It is very common for you not to have energy and just feel like crap.  It's also normal for you to have highs and lows, tired and normal, acceptance and denial.  It's just a rollercoaster of emotions and you are on that now.  Just make sure you are your best advocate when it comes to how you feel and your concerns.  Always post questions here, as we will help you get through this.

    Kim

    Thank you for your lovely post

    I am so sorry you have had to experience this. Thank you for giving love, hope and guidance to others. Your posts are a gift. Yes, a roller coaster of emotions is what I am going through.

     

    Thank you for supporting me.  Have a beautiful day friend.

  • SnapDragon2
    SnapDragon2 Member Posts: 714 Member

    Thank you for the information

    wow. I was under the impression that the Oxaliplatin was the main cancer drug and the Folinic Acid and 5FU were in addition to increase the effectiveness. I am now having neuropathy in both my hands and feet so I will keep discussing this with my doctor. 

    Could you please let me know the details of the fast? I am currently receiving my treatments on Monday and not feeling better until Friday.  I would think getting all these infusions on an empty stomach would cause horrible nausea? But I am open to anything that will help with this treatment.

     

    Thank you for your support.

    I semi fasted,minimal carbs

    I semi fasted,minimal carbs for 24-48 hrs before infusion.  I wouldn't think you would want to not eat at all for a day or two due to weight loss which is not good in itself.  I would say eat healthy, low to no folic acid and low carb before infusion.

    Yes, Oxa only gives a  3-5% advantage maybe.  5FU is the workhorse!  

  • Allidoisyoga
    Allidoisyoga Member Posts: 37
    NewHere said:

    Sorry I am late to the party

    Here is a bit I wrote from 4 years ago.  Basically when my neuropathy would not resolve between sessions, I was done with the OX part of the mix.  Studies were looking reducing the treatments from 12 to 6.  My neuropathy got pretty bad.  When I was done with the Ox part, playing guitar was impossible.  Was like having novcaine on my fingers.  :)  About a year and a half later it was like a switch was thrown, and it resolved a lot after improving little by little.  I have since had another 26 rounds of FOLFORI and started on chemo pills a few months back.  And those are working :)  Good luck with it - it is not easy but to me it has been worth it without a doubt.  I am Stage IV and when disagnosed the 5 year survival rate was 10%.  I am 5-1/2 years in and in better health than most people other than the cancer :)

    The way it was explained to me was that each things adds some percentage to the overall effectiveness of treatment (though I was only on 12 treatment cycle).  So, and these are not the actual numbers, if 5FU reduces the chances of a reoccurance to 50%, adding the Oxaliplatin would reduce the chances to 40%.  Again, those are not the acutal numbers.  From what I recall I was told overall the treatment reduces a 50-60% chance down to 25-30% chance.  My oncologist also does not use the Oxaliplatin in all 12 sessions.  The most he will do is 10 out of the 12 because the neourpathy risk in doing 12 outweighs the cancer fighing benefits.  He wanted a minimum of 8.  I was able to get that far.  Sessions 7 & 8 was where the peripheral neuropathy kicked in for me and he said it snowballs and is not linear, so he tapped me out.  He mentioned there are studies of only doing 6 treatments overall and not 12.  Others have mentioned that doctors in Japan (I think) only use 6 treatments.  

    Thank you

    Hi! 

    Thank you for this post.  It is very informative.... and very interesting that some places only recommend 6 treatments.  My neuropathy kicked in at round 6, and I am definitely glad the Oxyplatin was reduced.  My neuropathy for round 7 has greatly improved. 

     

    I am so sorry you are going through this too, but thank you so much for sharing your story. 

  • Paige1138
    Paige1138 Member Posts: 8
    3 sessions left

    I had surgery in March and started chemo 6 weeks after. My protocol is Folfox - my premeds are anti nausea drugs and dexamethasone. I currently have 3 sessions left. I had an interruption to my treatments when I got a MRSA blood infection in my port (Long story). I had it removed and a new port was placed after 6 weeks of IV antibiotics at home. I think that gap held off some of the neuropathy side effects. I had only completed one cycle of 2 chemos. Lately my diarrhea has gotten worse and starting to have bleeding/skin breakdown. My surgeon has prescribed some ointments - we will see if they help. My oncologist adjusted my treatment - with my 5FU pump connection she d/c'ed the bolus I receive before being hooked up. I told the nurse last time the neuropathy is getting worse and my fingertips are numb. They will adjust the oxaliplatin next week. Be open with your oncologist and know things can get better and be changed. I have actually gained over 15lbs with my treatment - the nurses keep telling me not to worry about it. They say it is the steroids and lack of activity since I am on disability bc I can't work while in treatment. My MRSA infection and Covid risk make it too difficult to work in a health care setting right now. 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Just chipping in, late I know

    Just chipping in, late I know, as I'm one who did the 12 treatments of Folfox [without Avastin] and came through relatively unscathed. I was weaker and slower, but I worked through it, thankfully it ran Dec.-May, as the SoCal heat would have gotton to me. I had the hand and foot stuff for almost 2 years after, and may have a tiny residual amount, but I can't tell, as I already had a neurological disorder. The hot and cold sensitivity went away right after treatment ended. Good luck with your treatment, and welcome................................................Dave