Folfox - 12 rounds - Not sure I can do this

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

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.

Annabelle41415 said:

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

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.

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.  

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.