CSN Login
Members Online: 7

Folfox 6 treatment effects.

LeesburgKate's picture
LeesburgKate
Posts: 10
Joined: Oct 2010

Hi,

hope someone out there can tell me what to expect. I just had my first Folfox 6 infusion on Wednesday and went home with a pump until Friday. To say I feel like I am "in a fog" is really minimizing it. I have read of some symptoms that I don't have (YET!) but feel so weak that I can't believe it. How does one "live your life" while on this regimen? I should mention that I start shots to bring up my counts tomorrow. Will that help???????

kate

traci43's picture
traci43
Posts: 448
Joined: Jul 2007

Kate - The fog you mention is pretty common. I was weak from the time they gave me the 5-FU bolus until the pump was removed. The day after pump removal I started feeling better. Keep eating and drinking as much as possible. That helps a lot. Since you're getting oxiplatin make sure the drinks are room temperature or warmer. Wear sock and gloves when going out in the cold. Next week you should feel much better. Exercise can really help with the fatigue as well, just don't over do.

I'm surprised you're getting shots to bring your counts up so soon, but good for you! This will help ensure you can continue treatment uniterrrupted. Usualy by round 6 or 7 I'd have to wait a week or two because my platelets were low.

Good luck to you, Traci

LeesburgKate's picture
LeesburgKate
Posts: 10
Joined: Oct 2010

Thanks, Traci. I have always been a "glass is half full" person and just hate feeling so down. The shots are a normal part of the cycle with this doc but I figure it can't hurt (which may NOT be true literally from what I have read. Oh well, I am so used to being poked now maybe I won't feel them).

Also had surgery for a port earlier this week and my chest/neck is hurting. That is just adding to the frustration.

I am in awe right now of anyone who completed 12 rounds of this!

LeesburgKate's picture
LeesburgKate
Posts: 10
Joined: Oct 2010

Thanks for th helpful comments, Traci. I had radiation and chemo (Xeloda) before surgery and the onc said they are still affecting my counts. Seems like one is normal, the other low and then they switch it around on me! This round is to catch any bad guys that may have escaped but so far the difficulty level is right up there with everything else. I have always taken good care of my body, exercised regularly and take no meds. They tell me I am young and healthy....ha, I went straight to the big C. Spoke with doc earlier tonight and he says it does get better. I'd like to know when, if you recall? Many thanks.

AnneCan
Posts: 3693
Joined: Oct 2009

I am not on the same chemo as you, but wanted to say hi.

LeesburgKate's picture
LeesburgKate
Posts: 10
Joined: Oct 2010

Thanks, Anne. Have never posted on a message board before but it looks like people draw a lot from each others experiences. Hope I can be of help to someone in the future.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Welcome to the board. I'm sorry that you are feeling foggy and weak.

The fog? hahaha ... I spent all Tuesday (day after my first infusion) thinking it was Saturday and sending emails to myself, then having to forward them out to the real intended persons when the email arrived in my inbox! Yep I got the fog. When I went in on Weds. for disconnect the nurse just patted me on the knee and said "It's ok, it's just chemo brain". I don't even remember what I said to her to make her say that. UGH!

As for feeling weak, I can certainly relate. I was surprised that just opening the sliding glass door to let the dog out was a physical chore that I had to mentally prepare myself for (OK.. get ready .. you can do this ... 1, 2, 3 ... Darn, think it's time to replace this thing with french doors! ... stop to mentally picture french doors ... oooops no picture pops into my head ... oh well, I'll think about it later). Wait I think that goes up there in the fog/chemo brain paragraph.

If your weakness is due to low counts then, the shots should help with that feeling. But, if it is just the side effect of the chemo then it might not.

I will hope that things get better for you soon. Personally, I'm tired of feeling like crap. But, I am feeling better today than yesterday so, there is light at the end of the tunnel. Hang in there, you are not alone. HUGS to you.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Folfox ,don't get in panic about anything while on folfox , that's all I can say about, Anything is possible ,is a rough drug ,but worth it!
Hugs!

jararno's picture
jararno
Posts: 189
Joined: May 2010

Hi,

I recently completed my 12th treatment. I can't say I was exactly in a fog, but I spent most of my Chemo weeks in bed. Even getting up to go to the bathroom took a lot of thought
( Do I really need to go?? ) I had severe nausea/vommiting which was helped by using a Sancuso patch and taking oral Emend. The trots were really bad.

The cold sensitivity was no fun. Food tastes terrible ( I ate lots of Turkey and mashed potatos ) I could not prepare food and many times the smell of food brought in made me have severe nausea.

The peripheral neuropathy that I have is not really painful, just annoying. My hands feel kinda numb, but tingle. Same with the feet.

I never had any injections, never lost my hair, I don't think I had any Chemo brain ( that I recall )

I had problems with my Port not giving blood flow and had to go to the hospital for Dye Studies on the Port. I had treatments to clear the Port.

I had a bad reaction to treatment number 11 ( face turning red, itchy, swollen...nausea ) They stopped the infusion and have me benedryl and Zantac which stopped the reaction.

My last treatment was about 4 weeks ago...I am still having fatigue and neuropathy. Food still tastes bad and I am still sensitive to cold. I don't know how long it takes to start feeling "normal" again.

Each person seems to have different reactions and side effects. Just make sure that you let the doctors know when things seem wrong!

As to living your life on this, I admit that I have very few things that I actually have to do in my life. My kids are grown, I didn't cook before this and I don't mind staying in bed!
I did manage to take a few important trips on my off weeks and when I feel well enough I have gotten out to do a little shopping with friends. I have not been able to take my dog out as he is too much for me to handle on a leash. As others have said you sometimes have to stop and think about how you can do things to make them easier. I actually took the doorknob off my bathroom door as I had trouble opening it. I hope to start being able to do things again soon, but for now it is just taking things one day at a time.

Best Wishes,

Barb

stratplayer's picture
stratplayer
Posts: 41
Joined: Jul 2010

After 3 treatments of Folfox, Oxcilaplatin, Luecuvorin and 5Fu, Bad spelling I know, I chose to stop my treatments. I was due to take 6 treatments.The neuropathy was becoming very bad for my hands and feet. My Onc was a bit upset that I was quitting. I took about $30,000 dollars from their next billing cycle.
The nausea and the left arm pain was increasing. I had Zoloda when I took radiation. That was not fun.
Folfox is one bad mother drugger.
I wish you well with prayers to God.

abrub's picture
abrub
Posts: 1542
Joined: Mar 2010

Hang with it as long as you can. I quit Folfox 6 after 7 rounds because of side effects, but more significantly, because they did not know if it was effective for my kind of cancer (appendix) - it was just a best-guess treatment, with no markers, no way of telling if it was effective. For that reason, the known side effects were not worth the very questionable value. However, it is known to be effective for colon and rectal cancer. If I'd had colon cancer, I would have pushed through more treatments.

LOUSWIFT
Posts: 372
Joined: Aug 2006

Sorry you're on this stuff but what can you do? I am through my second treatment which ended three days ago. I didn't get the folinic acid to boost the effects of the 5-flu because of shortages. I now do have sensitivity in my hands to cold and stomach cramps with the nausea. But nothing to my feet which is very good news because I have damage to my feet from Xeloda hand and foot syndrome four years ago. The cramps are worst then the nausea. I find that some controlled breathing helps with the nausea. I wasn't as tired this time maybe because no folinic acid but I don't feel I'm bouncing back as fast as I did on the first treatment. I have been experiencing diarrhea not the "flood kind" just the need to go a little very often. My hemorrhoids are threating to sue me for abuse:). Nothing tastes good and I hate drinking fluids at room temperature. So I drink hot chocolate and coffee (don't like coffee)and some tea. I sleep when I can usually about 2-4 hours at a time. This is about it for now. I have my third treatment on Nov. 8th. Doctors are discussing rather for me to do 8 or 12 treatments. I imagine they will want 12 since my insurance has authorized the 12 treatments and this makes me an important billing cycle for the doctors and medical facilities. Wouldn't it be great to have a doctor who has had cancer and folfox so when they act like they know more than you they actually do know what it is like? Hang in there I'm just ahead of you in folfox. Lou

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

You've gotten some great answers here. Gotta love the semis.
Keep in mind that just as each person is different, each cancer is different. There are patterns for how cancer responds to chemo, and there are patterns to how each body will respond. Some folks cruise through Oxy, some folks are hospitalized by it. Your response will have similarities to others, but mostly it will be unique to you.
It's great that you are asking questions early on. I didn't and suffered a bit more than I needed to. It's your disease and you are in charge of managing your side effects. Keep asking questions to your doctors and here.

You will get stronger.

"How does one live your life?" By staying positive. But don't try to fake it. No one is positive all the time. When it's time to fight --fight. When it's time to float - float. When it's time to sit and be sad, sit and be sad. Just try not to wallow in it.

I don't know if I'm supposed to be measuring my life by months or by years. So I'm trying to do both. I don't ask myself "how do I live my life" anymore. I ask myself, "How do I love my life?" The living flows out from there.

I read your 'about me' page. You are right. Angels are everywhere. Absolutely everywhere.

Stay strong and focussed - Roger

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network