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

I quit after 7 treatments
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.

Folfox
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

Sandy
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

Finished all 12 weeks
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

treatments
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.

I am one cycle behind
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

Finished all 12 treatments
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 said:

Not sure
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.

Fourteen Treatments
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

pluckey said:

I just ended chemo last
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

Allergy to folfox
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.

steved said:

Allergy to folfox
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.

"8"
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.