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Posts: 544
Joined: Jun 2004

Hi everyone,
I hope that you are all doing well! My brains still spinning from everything going on.
I will be starting folfox soon. What are the side effects? Will I lose my hair? According to my oncologist I will, but I couldn't find anything on line that confirmed that so I'm confused.
I'd appreciate any information that you could give me.

Betsydoglover's picture
Posts: 1234
Joined: Jul 2005

I'm surprised your onc said you'd lose hair as typically with 5FU and oxaliplatin you do not. I've had 4 cycles of Xeloda (think of it as oral 5FU) and oxaliplatin (plus Avastin) and I have just lately noticed a little more "hair shedding" in the shower. Nothing major and nothing that you would notice from looking at me. My oncologist says it probably won't get any worse.

Good luck with your treatments.

Posts: 168
Joined: Feb 2005

My mom had hair loss on her legs only. She did not lose any other hair. She had tingling in her fingers and lips for about 48 hours after each treatment. She said wearing gloves and not drinking anything cold for about 5 days after treatment really helped with the oxilplatin side effects.

goldfinch's picture
Posts: 737
Joined: Oct 2003

Hey Jamie,
I've only had one dose of the oxaliplatin. Started folfox this week, so I don't know about the hair thinning. My hair is finally growing back after the camptosar, 5FU combo. I know the 5 FU causes some thinning, but the camptosar sent it over the edge.
I'm grateful to all the folks here who warned me about the cold liquids and the jaw pain that you experience with the first bite of foods. I knew, immediately, what was going on when i tried to take a drink of water wed night and i felt a choking sensation. Warm to hot water goes down well. Then when I had my first bite of food wed night and felt that pain in the jaw, i knew it wouldn't last (because i read it here), and sure enough, with the 2nd bite it was all good.
Good luck!

Posts: 1961
Joined: Aug 2003

Hi Jamie,
I am on cycle 8 of folfox. Side effects have been manageable so far -- I am continuing to work. Mild fatigue, mild nausea (for me, last during the 3 days of chemo and about 2-3 days after).

The 'weird' side effects of FOLFOX - related to to the oxaliplatin - are finger and toe 'tingling', and sensitivity to cold (avoid eating, drinking, touching anything cold -- for me, again, this means during the chemo days and a few days after - -but I understand this can become somewhat worse over time). Also, the 'jaw spasm' - during first bite of food. I get swollen lips - last a couple of days.
Some people get bad diarrhea. I have had problems with my white blood cell count, resulting in delays, but that seems to be under control now with the drug Neupogen (some people use Neulasta).

I have had hair thinning, but not total hair loss. I understand that hair thinning is most typical. I actually bought a wig but haven't had to use it. I did have to have my hair cut shorter. My husband assures me that only my hairdresser and myself probably notice the hair thinning.....I will mention that I haven't shaved my legs or under my arms for months!! But, my eyebrows, eyelashes unchanged.....funny thing.....

Good luck to you and don't hesitate to ask any other questions.

Posts: 708
Joined: May 2004

Jamie, I don't know about your oncologist... geez. I only had minor hair thinning, and I have a lot of hair; so only I could notice because my shedding in the shower increased and my ponytail holders became a little loose. No one else had any idea... people couldn't even tell I was on chemo. EVERY person is different, but try not to stress until you start loosing tons of hair. My onc told me most will have thinning, but people rarely loose hair and need wigs. When I asked them where to go to get wigs they laughed at me and told me to chill out. :)

I did have the cold neuropathy - drinking only warm (yuck) but caffine free drinks - not easy! I had diarrhea and a funny saliva gland sensation with my first bite of food; it felt like eating something VERY sour and would only last for a second or two, but be prepared. Lots of diarrhea, popping imodium like crazy, but controlled OK.

Good luck - I will be thinking of you. jana

HisJoy's picture
Posts: 115
Joined: Feb 2005

Hi, Jamie!
I have completed TWELVE treatments of FOLFOX with Avastin. The side effects already mentioned are the most common ones, and I had those. I did NOT lose my hair, but it DID thin out and I didn't have to shave my legs hardly EVER. *yea* I wear wigs (I have NINE now), but that was more because it's FUN than anything else.

Along with the low white counts (I took Neulasta shots after each treatment to rectify this), tingly feeling in fingers, lips, toes with exposure to cold that have been mentioned, I started experiencing severe diarrhea and hemmorhoids after about 3 months of treatment. The diarrhea lasted until about 2 weeks after my last treatment and now I am proud to say that I have actual, real bowel movements now. (isn't it crazy what you talk about after colon cancer?!!)

I had liver problems BEFORE the cancer, and so my liver has really suffered through this chemo. We finally had to stop the oxaliplatin for the last 2 treatment cycles because my liver had reached toxicity. I also experienced blood clots, so I had to take coumadin. The side effects are cumulative, so after about 8 or 10 treatments, the fatigue really started getting to me, and I am SO WEAK that it affects my daily living. This could be in large part due to the chronic diarrhea I had from May through September.

The nausea I experienced was quite mild and was easily mitigated with Phenergan. Probably what bothered me most, besides the fatigue and weakness, is the pain I have in my right shoulder due to my port. We have x-rayed and ultra-sounded, but they really can't tell me why I am in such pain. My movements are so restricted that I have great difficulty dressing and undressing myself. I am still convinced it's because of all the tissue damage and swelling that happened when they put my port in, because they had a heck of a time doing it and it was SORE SORE SORE after surgery for quite some time.

Mouth sores are another possible side effect. Those only got so bad that I used the "miracle mouthwash" twice in all the months of chemo. One thing: drink PLENTY OF WATER. This will help flush the chemo out of your system and will help with all of the side effects. The anti-nausea drugs (Eloxy and Decadron) that they gave me started causing me to be HUNGRY all the time. I started gaining weight and ended up picking up TWENTY-FIVE unwanted pounds throughout chemo. I expected to lose weight, but the opposite was true. I never lost my appetite!

Insomnia is another side effect that would trouble me about 2 nights each cycle, but all of these side effects are manageable. The most serious thing that happened during my chemo was that I picked up a secondary infection due to low white count. I was DEATHLY sick and totally miserable for a full month. I went through 3 rounds of antibiotics before it cleared up and I felt human again. (that may also be contributing to my weakness and fatigue) I DID try to work during chemo, but found that I was able to do only 1/2 days, and by the end of the treatments, I could only do 1/2 days three days a week, mostly due to the fatigue. I have been totally off work ever since I had that infection, and I'm taking all of October off to try to regain some strength and energy.

That's about it! The entire experience wasn't all that bad, really. Good luck as you start your treatments!!


Posts: 719
Joined: Feb 2005

Hi Jamie -- I think people have touched on just about everything. I did have a problem with my red count and not my white; so, I had a shot every other week and it boosted the cell-production. My liver counts became high about three-quarter's through and I had to stop. I really look at that as my body saying 'enough!'; and I was happy to stop and to move directly into a nutritional program. Also, one of the drugs (or the combo) really messed with my hormones. Folfox did not throw me into any sort of menopause, but it has taken a long time to settle things down to normalcy (five months and counting). All the best to you and I hope you handle the side effects well. My regimen for nausea had to be tweeked and my chemo-doses had to be decreased from time to time. It also became helpful for me to have copies of my bloodwork and go through it with the doc at appts. Take care. Hope you breeze through - Maura

Posts: 3
Joined: Oct 2005

Hello Jamie,
I'm writing on behalf of my husband who will begin Folfox next Tuesday for metastatic colon cancer.
After speaking with his doctors and a cousin who is an oncologist, we learned that an infusion of calcium & magnesium can reduce the effects of neuropathy (tingling in fingers & toes and sensitivity to cold). You may want to ask your doctors about this.
As far as the hair loss is concerned, I think everyone is different. You may be one of the lucky ones.
Good luck, my husband will be checking in periodically, so you can compare notes.
Though we are not new to cancer, we are to this chat room. We are thankful to have you all to discuss our concerns and give us an idea of what he may face.

well's picture
Posts: 26
Joined: Apr 2005

Hi Jamie,

I'm not sure where you live (what season it is there) but I can tell you I had the majority of my oxaliplatin infusions at the least-pleasant time of year for them. :-) Not that chemo is ever pleasant of course, nor do we expect it to be, but one of the common side effects of oxaliplatin (that my onc called "quirky" and I had another word for that I'll let you imagine) is what he called "cold sensitivity."

Basically, you get up in the night to pee or something, and absent-mindedly go to the fridge to get a glass of orange juice or something, and bam, you learn not to do that again. :-) It took me about half a sip to learn, and that was of room temperature water, but more on that in a second.

Everyone differs of course, but for me, it was as if my throat was closing off, breathing etc. That's the best way to describe it, but isn't quite accurate. It's a strange sensation that seems to start in the back of the mouth, and jaw, and rapidly progresses. Apparently I was more sensitive than most, because even room temperature liquids triggered a reaction for me.

One bit of advice if it's cold where you are: bundle up WELL, particularly your head and neck area, even if others don't consider it cold enough for that.

It tends to be worst in the days immediately following the infusion, and then tapers back off to more manageable, just in time to start all over again with the next round, heh.

As far as the peripheral neuropathy, I developed it eventually, though not at first. (I couldn't grasp a coffee cup without possibly dropping it.) But I tend to think it may have been from the capecitabine which I was concurrently on, because I also had the reddening of the skin on my feet, etc.

Keep an eye on your side effects, and don't hesitate to mention them to your medical oncologist. Sometimes there are treatments that can be given to help, and sometimes it's appropriate to delay a round for a week or so, (because toxicity IS dangerous with this stuff) to give your body a chance to recover adequately to be SAFE to have the next round. I know it felt like a "failure" to have to wait without treatment, but really it's much more important to be able to continue "eventually" after your body can handle it, rather than end up hospitalized for a couple of weeks fighting toxicity.

And my personal advice? Hydration! get those anti-nausea meds in you right away, don't wait until you already have symptoms, and force fluids, force fluids, force fluids. (Warm ones, heh.)

You may feel "lousy" after the infusion, but believe me, that's nothing compared to how lousy you can feel after the infusion plus being dehydrated ,if you let that happen. I learned fairly early that I'd feel much less rotten if I drank as often as I could, like it or not.

One way to get dehydrated is to forget those anti-nausea meds, vomiting every few minutes for literally hours, well, you just don't want to go there.

On a related note, food won't taste "right" most days. An odd metalic taste is common, but even that will vary from day to day. What tasted lousy one day, you may crave the next, then find disgusting the next. :-)

Did I make it sound terrible? I didn't mean to, it's not pleasant, but it's certainly survivable (and I'd sign up for it again, even knowing, if that helps.)

In any case, be well, and best of luck to you with the journey. Treat yourself special too, you deserve it. :-)

well's picture
Posts: 26
Joined: Apr 2005

Replying to myself here.

Duh! I forgot to answer your one question. Everyone is different, and my onc warned that I "might" lose my hair, but I didn't at all that I can tell. It had been a concern of mine, I admit.

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