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Is Oxaliplatin the most important drug in Folfox Treatment?

vtspa6
Posts: 172
Joined: Aug 2015

My husband Tim is having a rough time with neuropathy in his hands, feet, mouth, tongue.  He said he just can't take it anymore.  The Onc. has cut back and he takes Gabapentin 300 mg 3 times a day but it is still bothering him.  Folfox w/avastin is working and I am afraid if he stops the Oxal. meds the treatment will quit working.  He just finished his 10th treatment and will be doing this the rest of his life.  I guess something has to give, it is at a breaking point. 

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NewHere
Posts: 1195
Joined: Feb 2015

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.  (I am Stage IIIC with heavy lymph node involvement).  

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.  

Other things to help on the percentage is exercise and aspirin.  

Speak to the doctor about this since everyone is different, but the above is what I have been told and been through.

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JanJan63
Posts: 2482
Joined: Sep 2014

The rest of his life? Ugh. I found the oxy and the neuropathy from it to be extremely stressful. I had it in winter and the ambient temperature in things like doorknobs in the house even with the heat on was shocking every time I touched one and upsetting. I hated not having a cold drink, ever. Even room temperature gave me the feeling of pebbles in my throat. I remember one time leaving the chemo session and going to my car out in the cold and losing my ticket from paying for my parking. I had to get out of the car and my face started to get the prickles and I was crying and angry. I finally got so fed up I got in line and just barrelled out the door after a car that had a ticket. A block later I saw my ticket on the passenegr seat. The parking was underground so I hadn't seen it in the dark. 

Anyway, I'm just tryint to pass on how awful it is. I was going to tell my oncologist that I wasn't going to finish the chemo but ended up in the hospital before that happened. And that was the end of my chemo. I'd had 8 or 10 of the 12 I was supposed to have. It was mop up chemo that I'd had to start after the 60 day time frame they like to start it in anyway so she didn't think it was going to be as effective as if I'd started it sooner. I'd had other issues that prevented it.

Sorry for rambling. I'm trying to explain how awful it is, I guess. It dosn't sound that bad and can't really be understood unless you've been through it. The shock when you go to pick something up or touch something. It's very stressful.

Jan

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

So sorry to hear this about Tim.  I lasted 12 checmo folfox sessions before the Doc took me off of Oxy. I just finished my 14th session.  He said the effects of numbness of fingers and toes will clear up but its slow going. He says 'we dont want to make you a chemo-cripple'  so i continue on every 2 weeks with folfox with avastin and take home pump, and with my Doctors blessing im adding   Hemp Oil at 25 drops per day and a concoction to increase alkaline in my blood stream (apple cider vinegar/baking soda/lemon juice in 12 oz of water)  The latter also takes care of my stomach nausea too.  My next pelvic CT Scan is early March so im praying that there will be a reduction in the colon mass and liver solid black nodules interally which number in the hundreds.

vtspa6
Posts: 172
Joined: Aug 2015

Do you have to take chemo the rest of your life too?  Did your Onc. say if it would reduce the effectiveness taking you off Oxil. ?  We were so happy with the results of his last scan but he still has many spots in his lungs and I am just afraid that all the cancer will come back.  As a caregiver/wife, it is hard for me to really understand what it feels like having neuropathy, but just seeing my husband going thru this is heartbreaking. 

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lizard44
Posts: 409
Joined: Apr 2015

about oxaliplatin.   I  found out yesterday that I'll be going back on chemo after my next oncologist appointment  in a couple of weeks, this time,  5-FU, Avastin, Fusilev, without the Oxaliplatin. I was concerned that  the onc was leaving ut the Ox part of Folfox and  began  researching to find out  how effective the treatment might be without the oxaliplatin and was surprised to find  an Australian study published in the March 2013 journal, Anticancer Research that concluded: "Our findings suggested no survival benefit with the addition of oxaliplatin to 5-FU modalities in treating CRC in practice. This raises questions as to the net benefit of oxaliplatin, given its known toxicity profile and expense."  It's just one study, and there  will probably be more that find just the opposite,  but it does raise  questions since so many people  seem to have such awful side-effects when on the oxaliplatin.  Here's the abstract of the study: http://www.ncbi.nlm.nih.gov/pubmed/23482781

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traci43
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Joined: Jul 2007

So I went 12 rounds the first time and 14 the second and finally had a bad reaction that landed me in the hospital with a high fever. The last two recurrances I went with XELIRI which is Xeloda (pill form of 5-FU), Irinotecan with Avastin. Irinotecan is a subsitute for Oxyiplatin and has it's own side effects mostly diarreha, but not neuropathy.  You should see if your husband's onc would consider switching him.  The neuropathy is a long term thing so if it gets, to bad he should take a break or stop altogether.  Good luck, Traci

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abrub
Posts: 2131
Joined: Mar 2010

I never heard of anyone being on oxaliplatin indefinitely.  Many drs won't let you have more than 8-10 treatments with it because it is so nasty.  Of my scheduled 12 Folfox + Avastin treatments, I got through 7 and quit (tho in my case, for my specific tumor type, the systemic chemo was of questionable advantage.)  They dropped Oxali after my 6th treatment because of side effects, and I didn't have it for my second treatment because of a chemo screw-up where they overdosed me on my first treatment.  (They overdosed the 5FU and Avastin as well - total miscalculation, but I was able to get those.)  [Screw up was that the intake nurse wrote down my temperature as my body weight in KG by mistake, and that's what my chemo was based on - 98kg instead of 63kg.  (133 lbs. vs 215 lbs.  oops.)

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PhillieG
Posts: 4907
Joined: May 2005

If someone were on oxaliplatin for life they sure wouldn't be on it for that long. As you said that's some nasty stuff. What you Onc possibly meant is that there's the possibility of being in treatment indefinitely.

Damn that metric system!!! In my case I think it would be a wash Cool

-p

vtspa6
Posts: 172
Joined: Aug 2015

Onc. did say chemo for life.  He also said folfox w/avastin is the most effective treatment.  He said my husband 'might' be able to take a break from chemo for a few months but that is it and since he still has mets in his lungs I'm thinking that won't be for a while.  Well, we see the Onc. in 4 days.  Tim says he is going to demand that he gets off Oxil. or reduces the dosage.  Off the topic, but FYI, if your doing chemo don't go out and use the snowblower to clear 19" of snow.  He has been sick ever since!  He has to learn he can't do things like he used to.

 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

I went out and shovelled snow, and the area where I had my liver surgery killed me for a week. We really do have to recognize and accept our limitations; but that doesn't mean sitting back on out hinies either. 

I hope that he has success with keeping those tumours in check and can tolerate the extended chemo. You're in my prayers. 

Sue - Trubrit

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annalexandria
Posts: 2573
Joined: Oct 2011

to recurrence rates, and he recommeded cutting it out all together if it got to the point the symptoms weren't going away between infusions (he forgot to mention this to me until I was already having non-stop symptoms, so I still have problems with it years later).  

It's always tricky balancing side effects with results, but in this case, if it was me I would happily cut it out.

coloCan
Posts: 1956
Joined: Oct 2009

just posted a video :"Negative ACCORD trial results reinforce standard of care for rectal cancer" which compared radiation with 5FU vs radiatiion with oxi and 5-FU in rectal cancer,concluding that "....It showed no difference in terms of pathological complete response,disease-free survival,local control or overall survival by adding oxaliplatin",citing "an increase in acute toxicity by adding oxaliplatin."

I had read several years ago that 5-FU was the most effective ingredient in FOLFOX (researchers like the term "efficacy")

 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

It would be sad for all of us who suffered through Oxaliplatin to find out that it really didn't prove to make things any better. 

Thanks for the info. 

Sue - Trubrit

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

Yes, Oxy is the major Player in colon/liver/pelvic areas.  Doc took me off of it at the 11 th treatment of Folfox 5 -- still on the others incl take home pump.  Finger and toes numbness remains  pretty strong but Onc. said it will eventually disappear but its slow going.  Just started with pure Hemp Oil / alkaline water / and Graviola supplement as a foot note ;  they have done wonders for many people ive talked to .  A Scan is coming up in early March to see if theres progress .

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beaumontdave
Posts: 1055
Joined: Aug 2013

Oxy didn't doing the job in my case according to my onc, maybe the cancer didn't grow that fast to be affected. I did the twelve treatments, suffered a year plus worth of neuropathy, and they won't try it again, so it's not a guaranteed thing by any means.......................................................Dave

coloCan
Posts: 1956
Joined: Oct 2009
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