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6 vs 12 treatments Folfox 5FU Oxal

CJTaylor
Posts: 8
Joined: May 2011

Hello everyone,
I was diagnosed in Jan with 3b, had surical resection and am only scheduled 6 treatments, part of clinical trial, anyone else involved?
I am still not sure if I want to participate or if I should drop out of clinical trial and go for the 12.
Appreciate anyone experience or thoughts!
Thanks so much
CJ

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

the intent of the trial i am aware of is to see if 6 or 12 treatments makes a different to survival and side effects, as the neuropathy is cumulative.

i made it through 12 treatments with alot of dietitary and supplementary supports.

personally i did as many treatments as i could manage ie all 12. if the trial cuts that short then potentially you may no miss out on treatment.

i know some people who did not make it to cycle 2.

if your 12 cycles of folfox is covered i would consider doing it, my top colorectal onc recommended this course of action for me, so be guide by your onc as well.

goodluck and hugs,
pete

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

enough, even as my dr scheduled me for 12. I made it through 7.

They won't recommend something that will harm you, and they will be tracking your counts and doing scans throughout. Personally, I'd prefer the least chemo that is known to be effective, rather than having permanent residual side effects (which I have, and not everyone gets.)

CJTaylor
Posts: 8
Joined: May 2011

Thank you all for your kindness and offering your experiences and advice, after my 6th treatment it is taking longer to recover, but am mostly experiencing extreme fatigue, numbness, cold sensitivity, and "chemo" brain but this is nothing compared to what so many have experienced. I am leaning toward just doing the 6, if those of us have successful outcome with 6 they eventually will be able to change US recommended to 6. It is just so scary, my prayers go out to everyone going through any type of cancer and their families.
I helped my father deal with the disease and unfortunately it took him from us 15 years ago (he was 75), I just turned 53, and am diagnosed with exactly the same thing, T3 N2a MO (so far). I have had 2 colonoscopy's since the age of 40, so not sure where this big thing came from ([possibly missed polyp). My Dads had not metastasized at initial diagnosis, but had 6 months later.
he could not do chemo due to another infection.

I will be checking back and with John 23
Take care,
CJ

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

In my last visit with my onc, we sat down and talked about this very subject.

The way he explained it to me was that 6-treatments was not enough to effectively work and that it has been tried before with little to no effects and that they moved it back to 12 treatments because they found there were better results with 6 months of treatments vs only 3 months.

Chemo infusion is "infractionated" treatments with each dose hammering the remaing cells that are in existence. Since the cells are all at varying stages of their life cycle, the six month protocl was and still is the preferred treatment.

Now with Folfox, many patients do not make the 12 - many do up to 8. The effects of the toxicity and neuropathy factors into this decision as each round you do could create "permanent side effects."

With Folfiri, it is still tough to make 12 but the odds are better with this than Folfox.

-Craig

Lifeisajourney
Posts: 217
Joined: Apr 2010

after two years it has traveled to my liver, so was 7 not enough, or would that have happened if I had 12,,,,,,or would it have happed if I did nothing.......could of, should of, would of type stuff. We are each so unique....Pat

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I think you answered your question, Pat:)

Statistically speaking, there is a little bit better chance by being able to do all 12 treatments...but you risk permanent neuropathy and your chances of a recurrence are still possible even by doing the recommended dose.

I did the Oxy when it was in my liver but ended up with mets to the lung and a recurrence, my 3rd...the treatments are only as good as what the body can handle and tolerate.

I just finished 12 rounds of Folfiri w/pump and did six weeks of chemo and pump combined, big lung surgery and everything....and we may or may not have knocked this thing back down. And if we did, will it appear again. Before this recurrence, I would have said no...with what i've been through this year and learned, I can see recurrence in the not so distant future...that could possibly be the pattern the rest of my days.....fight-clear-watch-wait...and then deal with it when it shows again.

And statistically speaking, my onc said they had tried 3 mos vs 6 mos and just did not get the results they wanted to see, so moved it back to six months for better effectiveness.

-Craig

Lifeisajourney
Posts: 217
Joined: Apr 2010

would just plug into this site and evaluate all that this group goes thru and evaluate what the means of all that is being done. Each procedure, chemo, supplements, food, there has to be an answer somewhere, surgery is good, but is every doctor good. We are spent just making decisions that we will live or die with..if we can get to the moom, I would think we could figure out cancer.....sorry I am venting.....Pat And I am just crabbing about cancer, my poor husband has a heart condition, but they are doing pretty good on that side..if he keels over before me, I'll never hear the end of it.... Pat-again.......

rick1964's picture
rick1964
Posts: 5
Joined: Oct 2010

What my Onc told me was that Stage 2 Rectal Cancer gets 6 treatments and Stage 3 gets 12 treatments. I receive 6 treatments and they were hard. its been a year and 2 months and I still have some numbness in my feet. I don't think I could have handle 12 treatments.

CJTaylor
Posts: 8
Joined: May 2011

Thanks so much for your response, I still don't know what I am going to do. My diagnosis is colon cancer stage 3, the Oncologist assures me the 6 is all for my particular diagnosis, he says it what he would have his own loved one do. It really does seem a crap shoot! I hope and pray your 6 treatments did the trick and you have not had recurrence.
CJ

thxmiker's picture
thxmiker
Posts: 1202
Joined: Oct 2010

The way my Oc explained the treatment to me was: The treatment is to keep the body at a certain toxicity for 6 months. They monitor your blood chemistry to see if they can increase or if they should decrease the toxicity. I made 10 rounds of FolFox, with two stays in the hospital from toxicity complications, over 7 months. I was nearly scared to go in for the "11th" treatment. My wife and I talked until 1a that morning on the up and down sides of getting more chemo. I was sure more chemo was another hospital visit. I felt that toxic. When we went in, the Onc said after testing your blood we feel that you are at a good time to quit. Good news for sure!

He alsoo said that some patients only make 7 or 8 treatments. Everyone was different. He said between 10 and 12 treatments was pretty much the norm.

My Two Cents.
Best Always, mike

CJTaylor
Posts: 8
Joined: May 2011

Thank you for all you have shared with your own "journey" (my sister who is a survivor of breast cancer hates that word :) ), it has surely been a long one for you.
I have a friend that was diagnosed with stage 4 colon cancer and has been hanging in there with various treatments for 4 years, just had "laser knife" surgery and seems to be doing pretty good.
You still may have the day when they tell you are cancer free, I believe they don't have all the answers and are sometimes surprised by miracles! I hope and pray for one for you!

Take care,
CJ

Lifeisajourney
Posts: 217
Joined: Apr 2010

and for your information I was told I should have 12 rounds of folfox and was stopped at 7 due to my reaction....after I read my venting I realized I didn't answer your question. 12 is what all oncs recommended to me.good luck in your decision. Pat

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

All I know is I was diagnosed 6/2010 with 3C. I had the radiation/chemo pump, resection, and 6 months of chemo. My chemo was supposed to be FOLFOX for 12 treatments. I lasted for 6 till the oxy symptoms got me and my onc changed the oxy to irinotecan. I just fininshed and I'm waiting (fingers crossed) for my scan. Good luck with your treatment and which every you choose to do.

Love, Gail

CJTaylor
Posts: 8
Joined: May 2011

Thanks Gail, You and the many other wonderful folks in this group have given me the hope and answers needed to move on, I hate dragging everyone in my life into my darkness, it's just not me. I love everything too much to let this take the best of me. Thank you for your support,
I will keep my fingers crossed for you and everyone else Gail, and say a prayer,
Love
CJ

Sonia32's picture
Sonia32
Posts: 1067
Joined: Mar 2009

...we in the UK are in trouble. I'm in remission from stage 3 (touch wood), from my knowledge (or from what my hospital Christies does and they are one of Europe's leading cancer hospitals) they only do 6 sessions. And that is considered to be enough, this is from what I was told and by research done.

CJTaylor
Posts: 8
Joined: May 2011

Hi Sonia,
So happy you are remission from stage 3, and I don't think you're in trouble, it sounds like UK is way ahead of US. The Oxalyplat took forever to get FDA approval here, while it was having great results in UK. My HemOnc Dr. said he wanted me to do 6 because of the success rates in other countries (UK).
The US can't change the regime without strong data, hence clinical trials, he feels stronly from UK data that 6 is enough an we are over treating in US.
So you should have no worries and enjoy your remission!
Thanks for your response and praying remission is forever for you!
CJ

ThreeStone
Posts: 1
Joined: Jan 2013

Hey CJ


My understanding of the 6 vs 12 question is, just as someone mentioned: there is a question about whether 6 rounds of FOLFOX will be just as effective as 12, and there is some evidence that this is the case from small studies and anecdotal evidence.  Apparently, when FOLFOX was first tested in human studies, they did 24 months (I can't even imagine!! I barely made it through eight!), and this was the protocol until large enough studies were done to show that 12 months was every bit as effective.  The study you seem to be part of is part of the probing to see what the lowest possible treatment period would be without sacrificing effectiveness.

In assuring me that stopping after only eight treatments was a better than the risk of permanent neuropathy, my oncologist told me there was good evidence that the effectiveness drops off sharply in the later rounds - that though I'd had only 75% of the treatment, I'd probably received at least 85 - 95% of the full effectiveness.  If you can tolerate it, going with 12 rounds would assure you that you are getting the best treatment available, and if the neuropathy is too much, you can cut back, comfortable in the knowledge that there is evidence that the full 12 rounds aren't necessarily required for fully effective treatment.

Good Luck,

Bruce

Roddy2
Posts: 21
Joined: Dec 2012

 

I see another Newbie has joined before me and it was about time join in.Was diagnosed with Stag 4 MCRC in Jun 2012.Started treatment in August after tmour removed from bowel with Folfox and clinical trial drug "Congo".went through 8 sessions of Oxally with only minimal side effects of cold sesitivity. Just completed round 13 of Folfox ( minus Oxally now) retained a bit of the sensitivity in the hands and feet but I a assured by Onc that this will disappear soon. I feel I am very lucky that I don't suffer from any side effects from the fortnightly doses of chemo and am able to maintain a normal existance with no fatigue or sickness. My heart goes out to those that suffer with intolerance to the drugs. The Oxally seemed to give a pretty good kick start to the treatment and managed to get a 25% reduction in tumours in livers after first scan 8 weeks after start. Now thankfully progressed to 31% after scan #3. Got to keep positive. Next main target is 50%.

Best wishes,

Roddy

Chelsea71
Posts: 1168
Joined: Sep 2012

Hi Roddy,

Welcome. Will you be getting a liver resection or RFA?

Chelsea

Roddy2
Posts: 21
Joined: Dec 2012

Still early days as far as I am aware. Plan is to stay on the current treatment regime for now.

cheers

Roddy

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

I went through all 12 treatments of Folfox .... I did havethey Oxy cut back 25% on the last 2 rounds.   I am just 2 weeks out from my last treatment... I feel a little fatigue and am trying to deal with the neuropathy.  My dr prescribed neuron tin to help with theneuropathy...hesaid giv it about a week to see if it is working.  The neuropathy is really bothering my hands...I can't open jars, button things, or handle a needle ... Cross stitch is my form of relaxation.  Hopefully the neuropathy will start to ease...it is too early to tell if this is permanent.

 

Alex

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