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

joemetz said:

24
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!

mskautz said:

folfox effects
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.

i just got rpund 6 of oxaliplatin on 5fu pump now. I got nauseated and got a migraine while at the hospital today. Onc says we might need to postpone next round due to platelets taking an 80 point dive Last round. Have had basically every imaginable side effect, even the really abnormal ones so an extra week or two off might be really nice. Seems doubtful at this point that I will finish all 12 rounds. Halfway scans scheduled for next week. Fingers crossed!  (33yo stage 3c lynch syndrome colon cancer)

Fallenstar said:

6 so far

i just got rpund 6 of oxaliplatin on 5fu pump now. I got nauseated and got a migraine while at the hospital today. Onc says we might need to postpone next round due to platelets taking an 80 point dive Last round. Have had basically every imaginable side effect, even the really abnormal ones so an extra week or two off might be really nice. Seems doubtful at this point that I will finish all 12 rounds. Halfway scans scheduled for next week. Fingers crossed!  (33yo stage 3c lynch syndrome colon cancer)

Sorry you have this dreaded disease, and such a young age. 

As Lizzard mentioned, this is a really old post, and several of our friends have now passed on (oh, just look at their sweet names. So sad!). We would love to have you post a new thread and introduce yourself, and let us welcome you. 

Here is the link http://csn.cancer.org/forum/128  Just see on the right where it says under Colorectal Cancer - Post new Forum topic. 

Again, welcome. 

Sue - Trubrit

Stage 4 colon mets to liver.  Just had my 14th FolFox 5 treatment with take-home pump.  Colon mass is nearly gone and liver masses are about half gone.  Numb fingers down to the palms and numb toes, slightly off balance when walking ,  itchy head scalp and skin--- must shower every day,  taste for food is off a bit.   Doc pulled me off of Oxiplammallion (sp)  at treatment number 11 due to side effects  --  all other chemo drugs remain.  Next Ct Scan is early March.

Just starting on Alkaline Water (1 qt per day)  and CBD Hemp Oil extract with Docs blessing and is compatitble with Folfox 5 drugs .  We shall see.  Lots of folks have good luck with these two remedies.

Stay close to God thru it all.

NEDbound said:

9 of 12 so far

Hello!

I just finished my 9 th treatment of 12.  I have low white blood cell count and platelet count.  I may have to wait a week between treatments if they go any lower due to the treatment I just had.  Symptoms are neuropathy - I have numbness and tingling in my hands and feet, but no pain.  I use my hands at work so I am concerned but I'd rather change jobs than die....

I have severe fatigue and some nausea.  I take Emend for the nausea. It is expensive but worth it.  I have numbness in my mouth and my lips as well.  That's one symptom I don't hear many others complain of.  Also have pretty bad hair loss, really bad taste in my mouth, it hurts to take first bite and to cry (like salt on an open wound), and I have altered bowel habits and bad gas (TMI sorry). 

I have 3c (T4aN2b), basically one cell layer away from stage 4 so I want all 12 treatments.  I had reduced oxaliplatin dose for the last two treatments.  I didn't notice any relief of symptoms with the reduction.  I will take all 12 treatments.  If neuropathy suddenly worsens a lot, I'll take 5FU without the oxaliplatin. 

Thankfully I have a very supportive husband.  I have twin 3 yo girls who need lots of attention.  I disconnect on Sat, so Sat and Sun are my bad days.  When I get too tired, I just disappear to my room.  My husband takes over wonderfully.  It's kinda sad though; my girls are becoming accustomed to hearing "Mommy doesn't feel good."  They know to look for my pump before getting on my lap.  Today I mentioned to my husband something about it being "monday after chemo."  One of my girls said, "what's chemo, mommy?"  Something a parent should never have to hear their child say.  Ugh.

Summer

There's no such thing a TMI on this forum. You've gotta know, we talk about everything. Part of the reason some of us are as far along as we are (as in Stage IV) is because of our culutral reluctance to talk about our personal bowel habbits or hemmeroids or rectal pain, or......  well, you get the idea. 

Knowledge is power, so we share it all. 

Don't push your body too far, especially with the neuropathy. I'm glad your Onc is cutting it back. 

Sue - Trubrit

abrub said:

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.

6 rounds this year, 5 last year.  Neuropathy in the fingertips, it feels like I have something on my fingers but I can't feel the strings on my guitar, can't deal cards, etc.  Folfox will only delay my colon cancer.  Last year I had mets in the liver.  Wonder what it'll be this year!

Where do 

i receive replies. ?

After folfox i have clear liquid with some blood from the anus. Anyone else. ? Onc at Sloan Kett. is not sure why. 

Trubrit said:

My suggestion

is for you to open a new thread here http://csn.cancer.org/forum/128

Just click on Add new Forum Topic (below Colorectal Cancer and above Topic and the top thread) and ask your question. 

This is an old thread, with several who no longer post because they have passed on. 

SUE

Maddening.... i cant get on line...

I seem to be online.   Thanks. 

Any responses to my concerns? 

I have no other reaction to Folfox other than some fatigue and the mucous from the anus.