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Questions about later rounds of FolFox Treatment (just completed round 7 of 12)

Phil64's picture
Phil64
Posts: 435
Joined: Apr 2012

Hello everyone. I just completed my 7th FolFox treatment. This round my platlettes were low so the doctor did not include the oxaliplatin this treatment. He is also planning to reduce the dossage.

It seemed like the neurapathy symptoms were negligible by the time the next treatment rolled around. However, this treatment it seemed like some of the neurapthy symptoms (tingling / numbness in figers and toes) did not go away. How do you know when this might become permanent? Also, the doctor's / nurses asked if it was severe, like causing problems walking or holding things??? My answer was no - but their question really scares me. I want to avoid permanent and/or dibilitating neurapathy if at all possible; however, I really don't know how to do this??? Is it like one additional treatment may put me over the top? Or is it a gradual increase in the neurapathy where if it is too severe I can yell stop??

He is going to reduce the Oxaliplatin in future treatments; I hope it will be enough to avoid the dibilitating and/or permanent neurapthy.

I also noticed that without the Oxliplatin this round side affects were minimal compared to previous rounds, e.g. I didn't crash and sleep for two days like previous rounds. I did sleep more but not as bad...

Is it normal to have to reduce Oxliplatin? What are your experiences in later rounds of FolFox treatments?

marbleotis's picture
marbleotis
Posts: 485
Joined: Mar 2012

Phil, I finished 12 rounds of Oxali and 5 FU on 8/23/12. I have neuropathy in hands, feet, teeth, tongue and lips. At chemo #5 my Onc added mag/calcium drip before and after treatments. It did help lessen the neurpoathy. It is worse now because at the 12th you are cummulatively full of chemo. I have found that some days it is less irritating. My Onc says it may take time to lessen and/or diminish. I never had Oxali removed I just was delayed 1 week because of low platetlets. It may sound nutty but I wanted to go all 12 rounds with everything they had! With neuropathy you really don't know if it will come and stay or come and go or totally go. Best to you!

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Mine was cut, and finally discontinued. I could not fasten my seatbelt or fold a piece of paper in half (to stick a check in my purse.) I stopped after 7 treatments because of severe neuropathy which has mostly subsided.

Be honest with your chemo nurses, and don't try to show how strong you can be. If the neuropathy is a problem, say so. Remember that they start you at the highest reasonable dosage, and cut back; there is nothing to say you need the maximum dose. Very few people complete the 12 rounds at the initial dosages.

toyfox's picture
toyfox
Posts: 146
Joined: Apr 2011

My husbands onc stopped Oxaliplatin after nine treatments.
His onc felt he did not want to see him have serious problems
with neurapathy later. We are so glad his onc made that decision.
He has some problems with neurapathy but could have been so much worse.
Linda/Andrew

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

13 rounds....
I thought the neuropathy was minor too.. till about the 10th round.. and then once completed about 3 weeks later it surged.. and it has never left.. that was about 11 months ago.. my new onc was the effects usually go away in a year to 18 months following final treatment.. at this point I don't think they are going anywhere and are here to stay..
I know everyone has a different experience... so i wish you luck.. and recovery...
Donna

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am heading to Folfox treatment #5 tomorrow. My dr and I had the discussion about neuropathy this past week. If it gets worse they might change my treatment or possibly cut back on the oxaliplatin . I was them to use all the guns... I can deal with the current level of neuropathy... But if it gets much worse I will let them know and we will change things up a bit. Right now it is mostly hands and tongue and lips. I have had a little neuropathy in my feet in the morning when first getting out of bed..had to stand there for a minute or two just to make sure I can walk.

Alex

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i completed 12 tx of folfox6 july 2011. i did have neuropathy after #1 thru 9 but it just lasted a couple of days. after # 10, 11,& 12 it stayed. it never was real bad but for awhile i could not fasten a necklace & feet & hands tingled. it has improved & the only effect i have is off & on tingling. everyone reacts a different way but i would not push it as it could cause perm. damage. also i had to watch cold food, drinks, & objects. (my dr did not reduce the oxliplatin as he felt i was not in danger of perm neuropathy). be careful around cold objects, food, & drinks as repeated exposure can cause perm. nerve damage. good luck with your tx.
hugs
judy

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 446
Joined: May 2012

I am right behind you - just finished # 6 today. While I was there my fingers started tingling, this was the first time for this. My tongue is very sensitive to drinking anything. Really tired, but that has been the same for all 6 treatments. The cold sensitivity is much worse. Just washing my hands hurt. I need to learn to wait until the water is Luke warm. I would like to keep the oxy dose the same, my labs have been good - platelets have been running between 250 - 405. WBC has not been below 3.5. But, I will wait and see how this week goes before I make that decision. How much lower have everyone reduced the oxy dose?
Sandy :)

taraHK
Posts: 1961
Joined: Aug 2003

Unfortunately, I don't think there is any way of knowing who will be left with permanent symptoms and who won't. I am one of those who had neuropathy while taking oxi but it completely resolved (took a couple of months). I did full dose and at least 12 treatments.

Tara

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

I did not experience any nueropathy till after my 12th rd of the folfox f5u. But I still have numbness in hands/feet and my last treatment of that stuff was in Apr of 2011.

mskautz
Posts: 30
Joined: May 2012

I am right there, just finished 7 out of 12 and am wondering the same things. I was just asking someone if the side effects pretty much stay the same for the final 5. Least I can count down on one hand now instead of 10 fingers plus 2 invisable fingers. I have had all the yuck since 1st treatment..tingling in mouth, roof of mouth, pain in jaw after biting, cold drink will feel like I'm swallowing glass, and damn shock in fingers when forget and grab milk out of fridge. I hate, hate , hate, chemo but am going to try to get through. My dr. is all I can trust in right now...or can I? Also does anyone get that all over feeling which I can't describe but I call it the feeling like **** all over feeling? Sorry for cussing but that's the only way I can describe the incredibly sickening feeling.

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

My FOlFox treatment ended in March 2011.

I still do not have full feeling in my last two fingers in either hand. It is not as bad as it was during chemo. I lost feeling on the outside perimeter of my feet. I am exceptionally cautious on a ladder.

The Cold Sensation took about a year to go away. I wore Shorts and a Polo everyday and had to go to long pants and a sweater for 18 months. lol The smell and taste came back with in a few months.

It is not uncommon for the doc to reduce the Oxi for the last few treatments. They are trying to keep a toxic level against the cancer and not you.

Best Always, mike

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

If the neuropathy gets too bad, ask you doctor about switching to FOLFIRI instead of FOLFOX. Both have been shown to work against colorectal cancer. I just got my 6th treatment today, but my side effects (cold sensitivity in fingers and mouth, plus leg cramps and occasional jaw cramps) have subsided within one week so far. My oncologist at Northwestern (I have one in Kalamazoo where I live as well) seems much more concerned about oxali than the local guy. She was the one who mentioned FOLFIRI. FTR, I am also taking Avastin.

Tedd

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