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FOLFOX- how many treatments did you make it through? Lasting symptoms?

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 499
Joined: May 2012

I just had Folfox #5 today and vomited while there. That was the first time this happened. I usually get sick on disconnect day. So I wanted to know how many people make it through all 12 treatments? What symptoms did you have and are still lasting? Did you stop treatments and did your onc agree with it? What stage were you? What was the hardest part for you? Did you get a CT scan and CEA level after 3 months and how long until next one? I know everyone is different and tolerate it different but it's nice to see how other people get through it. If you finished Folfox did you have a reccurrance after having clean scans?
Sandy:)

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

But I had been told that they didn't know nor would they ever know if the Folfox would benefit me. If/when my cancer comes back, they will not be able to say it was delayed by the Folox; if it never comes back they won't be able to attribute that to the Folfox either. My onc was very clear about the uncertainty of efficacy of Folfox for my cancer (metastatic mucinous adenocarcinoma of the appendix; Stage IV, but no lymph nodes involved.)

Side effects were extreme for me (neuropathy, hand-foot syndrome, first bite syndrome, and a blindingly painful anal fissure that I was told would not heal until after I was done with chemo.) I decided that the known problems were not worth the unknown benefit, and chose to discontinue.

4 years later, I still have some residual neuropathy, tho it only has minimal impact on my life.

However, Folfox is known to be effective against colon cancer. If my cancer had been different, I might have struggled through one or 2 more rounds.

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

I had 8 treatments of FolFox6 + Avastin and then 5 weeks radiation. Unfortunately, the FolFox didn't help me as much as the onc had hoped, but everyone is different. It was a tough ride. I was tired most of the time and only managed to work part-time. Slept til noon many days. I remember the nausea and vomiting. And yes, the neuropathy set in pretty quickly. I still feel it a bit in my feet a year later. It is managable though - the neuropathy I mean. I think I had mouth sores and gum bleeding as well. It's definitely no picnic. I'm praying for you and sending good vibes your way. Hang in there.
SharonVegas

Jaylo969
Posts: 826
Joined: Jan 2010

Hi Sandy,

I was staged as stage II A/B ( whatever that means?) I made it through only 5 treatments with Folfox and my onc said "No more!" The neuropthy in my feet, hands and arms was very severe.It started with the 3rd treatment and by the 5th I was walking with a walker. She then had me on Xeloda only and that lasted through 4 more treatments at which time my feet, that were already numb, started turning various odd colors and cracked and bled. I also was having nosebleeds. My onc decided that 9 treatments of some kind of chemo was enough. I was disappointed but I agreed that my body could take no more, especially since I was only stage II.

During chemo my worst symptoms were horrendous fatigue and neuropathy. I also had some vision problems which corrected itself a few months after stopping chemo. My teeth were in excellent condition one week prior to surgery.I have since had to have 9 crowns and my dentist says it was absolutely the chemo that caused the damage.I do have residual effects from the chemo over 2 yrs later. I still have neuropathy, I am still fighting fatigue, I have chemobrain.

I am almost 3 years out from diagnosis and surgery and finished my chemo in May of 2010.I had 3 month check-ups for the first year, the went to every 6 months up until the present. I have had 4 clear CT scans since finishing chemo and 1 MRI. I am due a PET/CT next week...never had a PET before, so I am anxious.

I see on your bio that you are staged as IV so your situation would be different, especially having the option to quit chemo with your oncs blessing.I hope that you have been given anti nausea meds? If not, ask for some and take them before you go for chemo.If it doesn't work ask for another kind. There are several out there...some work better and faster than others.

Good luck and good wishes for you.
-Pat

wmcbane
Posts: 33
Joined: May 2010

Sorry you are having hard time of it. I got through all 12 tx, 4 before surgery, 8 after. Last tx sept. 2010. I'm about your age, dx with stage iv with 1 met to liver. Have been NED since surgery. Are you on Zofran for nausea? It worked for me. I also took alpha lipoic acid, a supplement supposed to help with neuropathy. I had mostly tingling and numbness, unpleasant but not debilitating. I did have to get the shot of neulasta after each tx, starting about halfway through due to low WBC counts. I was fatigued/spent a lot of time resting, especially in days right after. Had really dry nasal passages, too, so had a vaporizer. Everything got worse toward the end, with same issues to greater severity. I hated the neuropathy and the pump by disconnect day. Neuropathy eventually cleared up after tx stopped. you hang in there. You're nearly halfway done.

herdizziness's picture
herdizziness
Posts: 3647
Joined: Apr 2010

You should ask your doctor to do your CEA monthly when you go in for treatment. When on my chemo, I had my CEA taken and the results every month. This way you know if your CEA is a good factor for you (mine is)but you can't get upset over every rise point (when I was NED it would go up a point or two, then back down a point or two)but the reason for the CEA is to see if it's going up 5, 8 or more points up. Plus if it's staying steady or just rising a point or two it helps with knowing that your chemo is working while waiting that time in between. My CEA has been good marker for me, I didn't go in for July CEA although I was supposed to, I went in August instead, I'm regretting that transgression just a wee bit. They should be taking blood looking at potassium counts, etc., anyway, what's a little extra vial???
Hope your nausea was just a one time deal.
Winter Marie

PatchAdams
Posts: 272
Joined: Nov 2011

I finished all 12 about 3 1/2 years ago and still have neuropathy. I was Stage IIIB but am now Stage IVa because of a small liver met I had surgically removed early this year.

The liver met developed from a very tiny spot viewed on my CT at original dx. It didn't change for over 3 years.

toyfox's picture
toyfox
Posts: 156
Joined: Apr 2011

Finished all 12 weeks a year ago.
He was staged 3B.
The chemo had to be reduced several times due to heart pain.
No problems with nausea or diarrhea.
We feel that change of diet and excercise made a difference
with side effects.
He still has some neuropathy in his fingers and feet.
He just had his 3 month lab work....cea normal....still ned.
Take care....linda

marbleotis's picture
marbleotis
Posts: 577
Joined: Mar 2012

Sandy,

I am a stage 3b with 3 nodes and no mets. I had 12 treatments (Oxali with 5FU from March 7, 2012 - August 23,2012). My scans are on 9/18/12, then every 6 months for first 3 years and the repeat colonoscopy in Jan 2013, then yearly. I feel fortunate because I started with clean scans taken before the actual Dx.

My side effects - on disconnect day TIRED. Because I could not sleep while connected (??). Diarrhea for 2 or 3 days after disconnect. Pills helped with that. I also lost 60 pounds in total. Neurpoathy hands, feet, lips, teeth and tongue. Hopefully that will improve.

CEA with cancer was a 7 then three months later while in chemo was 0.08. Onc will do CEA monthly to start then every three months.

I did not stop treatment but was delayed one week on #8 because platetlets were low. They came back nicely.

Now I focus on the Wellness program offerred free from the Hospital (8 weeks of monitored exercise and yoga and Nutritional guidance from a RD who specializes in cancer patients)

Each day I have a little more energy. I tried to clean the whole house today and finished half (that's ok).

If you can get through 5.....trust me you can get through to 12. There were times I was so tired I felt out of my mind, but slowly you come back.

I focus on all the things I love doing and how I can reach out and help others that this horrible cancer has touched.

RickMurtagh's picture
RickMurtagh
Posts: 554
Joined: Feb 2010

I had 11 treatments. Neuropathy, tanking blood numbers and general fatigue really took its toll on me the last few treatments. My onc was a researcher and showed me on a research site, what the difference was between 11 and 12 treatments - less than 2% stat-wise. I gave up that 2% for a much better quality of life, not sure how bad things would have gotten with that last treatment, but I am glad I never got to fin out.
So far no recurrence, just recover.

YoVita's picture
YoVita
Posts: 589
Joined: Mar 2010

I'm a rectal cancer survivor, stage 3C, so my Folfox treatment was a bit different. 4 treatments of Folfox followed by radiation and chemo and ending with 4 more treatments of Folfox. I had all the side effects and loss of hair (which my oncologist said wouldn't happen). Neuropathy is the one still with me but it's livable. I also had mouth sores, nausea (treated successfully with medicine), cold discomfort, bad metallic taste from food and others I've blocked. The mouthsores and neuropathy were the worst for me. My oncologist stopped my treatment because of those two. I did not have the final Folfox treatment. I had clean scans for the first 2 1/2 years following treatment. Just recently had a lung nodule appear in my most recent ct and petscan. It was removed with clean margins. I do believe the Folfox, though wretched, gave me 2 1/2 years to live life and see my son meet his special love. They'll be married a year from now. I'm planning on sticking around for their wedding. Folfox is tough - no doubt about it. Good luck to you.

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I am one cycle behind you...I just had number 4 today. I have the fatigue, lack of appetite, some neuropathy, some diarrhea, and the mouth issues. I did throw up after treatment number 1... Thankfully I have not had that since. They are adding Neulasta on Thursday... My chemo was cancelled last week due to low WBC. I am not looking forward to the possibility of bone pain from the Neulasta ... I did get the Claritin ...which is supposed to help along with Tylenol and if needed Percocet.

I had to ask for my Cea to be run last week...the number came back at .9 ...so that was good. I am hoping to make it thru all 12 treatments.. I am a IIIb with signet ring (which is aggressive) so I will do what I can to keep this at bay...even if it means having to deal with the side effects of the chemo. I will keep you in my thoughts and prayers Sandy.

Alex

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I made it thru all 2..
I have neuropathy.. in hands and feet...
It never made me sick but very tired..
we discovered me CEA doesn't register...
I had a pet scan and found mets in my lungs... thou my colon is clean and so are my lymph nodes.. hmmmm..
If I had known the neuropathy gets worse after the treatments end.. I would have refused to take any more of it once I started to feel it..

Speak to your dr...

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

I was a stage IIIb diagnosed 3 years ago in August 2009. I had 12 Folfox treatments between September 2009 and early April 2010. A couple of treatments were delayed by a week due to low blood counts.

Side effects I had were neuropathy in my fingers and feet, the first bite pain, and extreme fatigue on the day of disconnect and the day or two following that. Now, 3 years later, the neuropathy in my fingers is almost entirely gone (not even noticeable unless I think about it) and my feet are much, much better than they were, though there's still a little numbness in my toes and the pad of my foot behind the toes. Oddly I still occasionally get a slight touch of the first bite pain, but it's essentially gone. I never had issues with nausea or vomiting. I had medication for nausea with my infusion before the pump connect, and I had a bottle of prescription medication for nausea at home with strict instructions to take it immediately if I had even a hint of nausea. Once or twice I did take it and that was about it.

The hardest part for me was the fatigue for the couple of days following disconnect. I really couldn't do much more than get in bed and sleep a lot.

I have been lucky and haven't had any recurrance since completing treatment. All my scans, exams, and labwork have been good.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Folfox is 5FU, is that correct? I've sort of lost track a little bit, but think I'm currently on treatment 34. After infusion and getting my pump hooked up, I'm pretty weak and tired, very unsteady on my feet and a very thick fog in the head. After the pump comes out, it's a physical battle to stay awake long enough to get home. I'm Stage IV.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I had 14 treatments of folfirinox (irenotecan + oxaliplatin + 5Fu pump) and made it through not too badly (lots of diarrhea and fatigue)until I ended up in the hospital with a perforated bowel (3 months in hospital). I can't resume that treatment because of the
diarrhea issue. I am now having a bit of neuropathy in hands primarily.
Cheryl

Sundanceh's picture
Sundanceh
Posts: 4410
Joined: Jun 2009

Folfox = Oxaliplatin / 5fu / Leucovorin

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Thanks, Craig. My first onc took me off of Oxaliplatin after about 12 treatments due to the neuropathy. I don't recall when I went off Leucovorin, no later than April 2010 though.

pluckey's picture
pluckey
Posts: 479
Joined: Jul 2009

I just ended chemo last week.
I made it through 6 Folfox treatments. Had allergic reactions on #^ and &. So did #& and * without Oxi, just the ironotecean and 5fu pump. Major fatigue, blurry viion, chemo brain.

My feet are wonky from neuropathy. No clue if it will last.

Peggy

steved
Posts: 836
Joined: Apr 2004

I had a swollen tongue on oxaliplatin with xeloda and avastin and they thought that was probably an allergy to oxaliplatin so stopped it. Had 4 cycles with it and hated it- had it through a peripheral iv line (no port) so got arm pain really badly for several days and started to get the cold intolerance and neuropathy coming on so was pleased to be given an excuse to stop it. Some nausea and tiredness but still able to work full time and only once vomited at the chemo unit.

We are all individual and no one can predict how you will fair.

steve

PS I think Peggy above 'had an allergic reaction on 6 and 7. So did 7 and 8 without oxi' if I interpret her problems with the shift key right.

Sundanceh's picture
Sundanceh
Posts: 4410
Joined: Jun 2009

Began to get to a point where the platelet levels were damaged with Oxy...part of a condition called ITP.

Cycles began to move further and further out as platelets levels halved with each infusion...got down to the low 50's and would not climb...so we discontinued and we stayed with Xeloda and Avastin to finish out the protocol.

Recurred...etc. etc.

Mostly recovered from the neuropathy, but still some tingling in hands and feet.

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

I was diagnosed stage 3C.
Missed a lot of time due to white cell and then platlet counts.
I didn't make it through all twelve scheduled treatments.
I got every symtom in the pamplet, except ironicly, hair loss.
The onc said I was exhibiting symtoms most patients experience after eight rounds after my second treatment.
The worst for me was the nausea and food tasting foul/wierd.
I lost 55 lbs starting at 210 to a low of 155 lbs.
Still suffering from neurapathy almost two years after my last Folfox treatment
I had a CT at the end of treatment, a second last November and my third will be this coming November.
CEA tests every three months - 1.1

Praying there will never be a recurrance.

thxmiker's picture
thxmiker
Posts: 1283
Joined: Oct 2010

I made it through 10 treatments. FolFox put me in the hospital for 16 days. (2 stays x 8 Days) I lost some hearing, eye sight, feeling in my toes, feeling in the last two finger in both hands, and still and cancer reoccur.

In the same issue, my odds of living past 60 months was 35%. Scary at best! I am an engineer and looked at a lot of possibilities for treatment. FolFox had the best results at the time. (Stage 3B Signet Ring Cell) I am now doing the juicing thing, easing into the Gerson
Style diet. Consulting tomorrow for surgery, again.

Bottom Line: Do the treatment that is best for you! If that is not successful, Plan B!

Best Always, mike

PS I would think long and hard about alternatives before I did FolFox again.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

i made it through 24 treatments of FolFox6 with Erbitux.
there were two times that they had to stop the treatments...
first time was due to the extensive skin rash and infections in my eyes and nose from the Erbitux.
the second time was with mouth sores from the FolFox6 (not sure which is was from)

the neuopathy problem is always there... and sounds like it doesn't go away anytime soon.

i've been finished with FolFox since July 3, 2012.

on Monday, sept 17th i begin "maintenance chemo treatments" to keep the small amounts of remaining cancer, where they are and to keep them from growing or spreading.

well, at least Thats the plan.

I begin Xeloda with Avastin next week.

nervous!

Sundanceh's picture
Sundanceh
Posts: 4410
Joined: Jun 2009

"Say it ain't so, Joe..."

LOL!

Hang in there, man!

-Craig

mskautz
Posts: 30
Joined: May 2012

I had colonrectal stage 3, surgery in March. Dr. has me on 5-fluorouracil think that is folfox and oxaliplatin. Finished 6 with 6 more to go. I had symptoms right from the start,everything everyone else has had. I take the anti-nausea medicine, so damn tired specially when I get the pump off. I also have the first week when I've tried to drink something cold the feeling of glass in my throat. Every time I go in to see the Dr. I try to get him to lower it a little at a time. I hate chemo, can't stand the thought of going back but it's all I have to trust that the Dr's know what they're doing. I had it in only 1 lymph node out of 58 so they say this is preventative chemo. I take it a day at a time and 1 treatment at a time, sometimes I think I can't go 1 more but then I force myself. I just started feeling better after the surgery and then started the chemo which took me right back to feeling like crap. I have to walk with a cane as feel weak all the time. The worst symptom I feel can't really be describe except that it is an all over feeling of being poisoned. Best wishes to you and while i'm at it me too.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Hello MS Kautz

you sound like you would be a perfect candidate for some 420!
(some good old fashioned ganja, mary-jane, you know... Weed!

find some and get that in you!
you'll relax, you'll feel better and you'll make it through this crap!

my best

Joe

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Hey Craig

yep... a bit nervous about getting re-started with chemo.

i feel so damn good that I wonder why i have to go onto maintenance.

it feels real good to feel good.

but, honestly... I have a 3 day weekend with my wife and family to really get my head on straight to be ready to attack this stuff.... again.

cheers my friend.

Joe

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