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Folfox, why do so many people get it?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm so sick of hearing how people are put on this chemo. It's the worst for side effects and is just a miserable chemo to be on. Yet it sounds like almost every onc has it as their main go to chemo. Some people mention that their onc says they'll be on it for months. Months! I was ready to cut my wrists after a month and a half! And was going to tell my onc that I wasn't going to take it any more until a medical issue caused me to go off of it and I will never be on it again.

Is it some miracle chemo that works the best? Is it the one that the drug companies push the most? Why is it so popular? Does anyone know? I cringe every time I see a post saying that their onc is putting them on it. I think it should be the last one to try.

Any thoughts or info on this? Thanks!

Jan 

zx10guy
Posts: 199
Joined: Dec 2013

Unfortunately, it's the best chemo drug out there which has the greatest results over a wide proportion of the population.  More specifically, it's the 5FU part of FOLFOX6 which is what is used as the mainline drug.  Many people are not aware of this but 5FU has been around for a very long time.  If I remember correctly, it was discovered/created in the late 40's to 50's.  5FU works by messing with DNA replication essentially acting as a DNA scrambler.  It works mostly on cells with high rates of cellular division/replication such as tumor cells and unfortunately cells that make up the GI tract.

While many people take the optimistic approach with cancer drug research, I am more of a pessimist.  The latest drugs such as Vectibix, Erbitux, Avastin, etc don't really extend life all that much.  They're used because from a clinical study aspect yes they are effective.  But we're talking about extension of life span measured in months.  Immunotherapy holds a lot of promise but when there will be a mainline drug from this remains to be seen.  Oh and Oxali which forms the OX of FOLFOX, that only adds a few percentage points onto disease free survival and survival stats.  It's used because any little advantage is viewed as a positive if the patient can tolerate it.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for your reply. My understanding is that the oxaliplatin is what makes Folfox so miserable. I wonder how importantit is to have that as part of it. Maybe the rest of it would be okay without that aspect of it.

I'm on Vectibix/Panitumumab and it is highly effective for me. My cancer willnever be gone but I get very drmatic results when I have it for maintenance therapy. They say immunotherapy is the chemo of the future. It has side effects but is far better than Folfox for that.

I hate it when I read that someone on here is to go on Folfox, sometimes for long periods of time. I can't imagine how awful it would be to be on it for months.

Jan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I was just Googling this. From what I can gather, 5FU is Folfox without the oxy. The likelihood of getting neuropathy is 92% and 12% of those people will have it stick around. 50% will still have it a year later. The number of cycles they suggest is 8 to 12. I could not find an answer as to what exactly the oxy does.

Jan

zx10guy
Posts: 199
Joined: Dec 2013

Neuropathy is really caused by Oxali.  I don't see how 5FU can ever cause neuropathy.  The reason why Oxali is the primary cause of neuropathy is due to the heavy metal platinum that is in the drug.  Platinum attacks nerve endings.  This is why an oncologist who is on top of assessing your treatment progress will ask if you are having numbness, tingling, motor function problems.  If managed properly, you stand a good chance of having 100% recovery from the neuropathy side effects.  If the side effects are not addressed appropriately, you can get permanent nerve damage.  The reason it takes a while for some or all of the neuropathy to resolve is due to nerve ending regeneration which takes time.

The position doctors take with adjusting dosage levels or to even remove Oxali from your treatment speaks volumes on the risk benefits of using Oxali.  Which means permanent nerve damage is not worth the small percentage points of survival benefit.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Yes, I know that it's the oxi that causes it. When I said I wonder what it does I meant what's the benefit of it that they like to use it so much if it's the 5FU that actually has the benefits. Does it enhance the response? Does it provide a possible cure on it's own? What exactly is the point of having it in there.

Jan 

zx10guy
Posts: 199
Joined: Dec 2013

I think On The Road's reply below has the answer as to why the addition of Oxali.  I haven't researched into how it actually works.  It's an additive drug which is meant to provide a bit more effectiveness in the treatment but isn't good enough to be used alone.

If anyone has Dr. Nancy Kemeny as their doctor, maybe they can ask her for us.  From what I understand, she's the one that pioneered/invented the use of Oxali with 5FU to come up with the FOLFOX treatment.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I read On The Road's response after I posted that and I agree. I'm just glad that I'll never be on it again. I got blood clots from it and my onc didn't investigate further or seem concerned and after several of them over the course of treatment one went to my lung and almost killed me. I am lucky to be alive. The doctors said it was amiracle, that my odds of living throughit, particlularly with my brain instact were something like one in a thousand. Every health professional said it was the Folfox except my onc. So I got a new onc. Who I like much better anyway.

I had been planning to tell her I wasn't going to coninue with it when I saw her two days after the blood clot but because of it they stopped the treatment anyway. My new onc had my tumour tested (it sits in the basement of a hospital along with thousands of other people's tumours) and discovered that the immunotherapy is effective for it. I wonder if anyone would have tested that if the Folfox hadn't done to me what it did.

Jan 

OnTheRoad
Posts: 10
Joined: Jul 2018

JanJan,

Oxaliplatin acts somewhat in the same manner that the 5FU does. It disrupts the proccess of the cell copying its own DNA when replicating, killing the cell (apoptosis)

The affirmative Oxaliplatin helps less than 5FU is correct. On Very Very high level stats, what I have read is the following (at least for my 3B staging)

- Surgery alone: the 5 year survival ratio is around 50%

- Surgery + 5FU : you could add another 20%-25% to the 5 year survival ratio, taking it to around 75% 

- Surgery + 5FU + Oxaliplatin (the full FOLFOX mix) : You can add another 5%-7% of 5 year survival ratio on top of the surgery+5fu results, which might take you around the 82% of survival ration mentioned in several researches done in the past years 

FOLFOX is defined nowadays as the mainstream treatment for advanced or metastatic colon cancers and can help a lot in enabling ressectability to initially non-ressectable cancer situations.

I know the side effects are many (and I had 6 months of Folfox, so I can testify this is true), but in a situation where every percent of survival ratio counts, this could be a good tradeoff. 

Of course this depends of everyone's choice of treatment, but Oxaliplatin really brings some benefits for some people... even with all those side effects

Trubrit's picture
Trubrit
Posts: 4826
Joined: Jan 2013

Back in 2015, I listed all of the side effects I got from FOLFOX. These do not include the added ones I got while doing the Radiation/5FU for 6 weeks.  

I have no doubt the Platinum in the Oxaliplatin is the casue of most, if not all of the misery from this drug. 

Anyway, anyone interested can see my list, here  https://csn.cancer.org/node/292593   I won't reprint it (unless requested) becasue its quite frightening. 

Did it work?  While I did have a recurrance in the liver nine months from treatment, I am now FIVE years NED. So, I'm thinking it must have helped. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

I think of Folfox (and Capox) as a club (like a caveman's club).  Maybe it works on the cancer, but it also causes a lot of other damage.  Hopefully there will be more refined methods of treating cancer coming up in the next few years.  I also hate to restart a controversy, but my guess is that Folfox is favored because the infusion process provides good income for the cancer center.  Capox provides less profit; but is likely more effective, why is it less common?  It makes one wonder.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I agree! Killing ants with a sledgehammer. Its a very sloppy drug, in my opinion.

Jan

myAZmountain
Posts: 256
Joined: Apr 2018

After seeing how much one infusion session cost I have to agree, they push the FOLFOX/Avastin.  The 5 Fu should be cheap since it was patented in 1957. Beisdes the FOLFOX/Avastin I was given Emend, Decadron, Magnesioum, Calcium and several others I forget. Avastin was pulled by the FDA for breast cancer, I cannot understand why it continues for CRC. My oncologist said one study showed it "may" extend life by ONE MONTH.  I am also sceptical about giving chemo before surgery--never quite understood that. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

For me they did it before so that hopefully the tumour would be smaller by surgery time. It was the size of a large chicken egg.

Jan

zx10guy
Posts: 199
Joined: Dec 2013

I'm not sure which one is more effective than the other in terms of IV introduced 5FU or pill form via Xeloda.  I do know side effects are different.  The worry with Xeloda is hand foot syndrome.  I have never heard of anyone getting hand foot syndrome via IV 5FU.  Also the treatment dosing is different between the two delivery mechanisms.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

My doctor told me that it is the best combination for colorectal cancer and she wouldn't even reduce the oxi when telling her of my terrible numbness after infusion 4.  Doctors should really listen to their patients when they complain of side effects though because a lot of them (or most) have never gone through it and have no idea how it feels.  If they could experience one day what we all have been through they would listen and maybe reduce some of that oxi that causes so much problems.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I still have some neuropathy in my feet but it's barely noticable most of the time. I am lucky. If I had to live with what it was like being on Folfox for the rest of my life I'd lose my mind. 

Thank you all for your thoughts and information. I was wondering if we ought to suggest to people that they tell their doctor that they do not want Folfox and to start with something else. It sounds like it is actually effective and not just a nasty chemo to be on. So I guess we can't do that. I feel sorry for anyone that has to be on it. I'd hope that anyone who does is on it in the summer at least. Being on it in the winter made it so much worse.

Jan

zx10guy
Posts: 199
Joined: Dec 2013

Having treatment during the warmer part of the season certainly does help.  I started my treatment at the end of January.  I was lucky my cold sensitivities didn't hit till about treatment number 5.  By then, we were about to come out of Winter.  Plus that year the Winter season wasn't so brutal.  But one thing that won't go away is caution when drinking anything cold.  I made that mistake and it was an experience.  I purchased some orange juice from a vending machine.  Forgetting about the cold sensitivity issue, I drank the orange juice cold.  The feeling is only what I can describe as swallowing shards of glass.  The feeling literally took my breath away.  My coworkers standing next to me knew something was wrong and asked what was wrong.  I couldn't say anything to them for a few seconds.

I made the mistake as I had been disconnected and thought enough time had passed.  I was able to hold the cold drink but apparently my throat said otherwise.

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