CSN Login
Members Online: 6

Hair loss from Folfox?

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

When taking Folfox, did your hair fall out and if so....about what treatment?  I'll be starting chemo next week and wanted to be proactive and get a wig now.  I know, it's the vanity in me but I just don't want to walk around with patches of hair missing.  I told my husband since I've always been a brunette, I could get some hot blonde wig!  lol

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I started to lose a lot of my hair After treatment 4 of Folfox.   I still have some hair but it is very thin and does not look healthy.   I used to have long thick hair....I wound up cutting it much shorter because every time I brushed it it just seemed to pull even more hair out.   Be careful when getting your wig...my insurance was supposed to pay for 1 wig but they denied my claim because the wig shop was not in network ... I asked them well what wig shop is and there were none in my area ... I live in a large metropolitan area.  So I wound up having to pay the $370 bill myself....wigs can be very expensive....some of the ones i tried on we're over $2000!  I also ordered a second wig from Paula Young wigs...from the jaclyn smith line...very affordable and actually it is the one that I wear most often.   I think I paid about $50 for that wig.

 

Alex

PatchAdams
Posts: 272
Joined: Nov 2011

I've never seen anyone lose 'patches' of hair from FOLFOX.  Hair thins, yes.  My onc's nurse told me to shampoo gently. Don't tug on your hair.  Not to use things like rubber bands, barettes, or anything that might pull on my hair. She suggested a silk type pillow case.  I have very fine hair and it thinned during my 12 tx's but never looked bad or certainly not noticeable that I was on chemo.  My insurance covers wigs and I qualified for 2 human hair wigs, but I held off after talking to my onc and am glad I did. 

BTW..... I'm also vain.  I won't go anywhere without my make-up done to a 't' and hair looking nice. Even if I'm scrubbing floors or working in the yard, make-up is a must! 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Thank you for the comments/suggestions.  My insurance co. is supposed to pay too but we'll see.  Make up is definitely a must too!

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

The hair on my head remained intact, tho it went dead straight.  No one in my family has straight hair - this was truly an anomaly.

My hairdresser felt like I was a new client every time I went in, because my hair texture changed so much.  We could never plan ahead what to do with it.  However, from what I understand, most people don't lose their hair on Folfox.

Alice

YoVita's picture
YoVita
Posts: 539
Joined: Mar 2010

I understand it is rare to lose your hair on Folfox - so you might be one of those lucky people.  I did lose all my hair - all over my body except for my eyebrows.  It all came back - although not quickly enough for me.  I chose to wear hats, not wigs.  That worked well for me too.  I'm sorry - I don't remember when I lost it - probably midway through.    Good luck!

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I thought about the hats but didn't want to worry about them blowing off my head!  lol

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

I had thinning but no complete hair loss.....never came even close to needing a wig.  Lost my eyelashes. After treatment all hair returned in great shape. I think really good shampoo is a good idea.

One thing I did do was get my bedroom ready....I got a television set up and nice warm blankets.  I chose good things to read that would really hold my attention....I did tend to spend a fair bit of time in the bedroom and on the couch so i wanted those places tidy and comfy. Try to think of little treats for yourself....oh and do you have mittens or gloves ready??? remember no cold things to touch....make sure you have gloves for the grocery store if you have to touch anything cold.....

ahhh shucks....we will be here for you when you get started....ask anything!!!

mags

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I went to Target today and they had their gloves on sale so I bought 3 more pair.  I would have never known about the gloves if it wasn't for this blog so I'm ready now.  I think I would rather lose my air then my eyelashes.  I look like a zombie without mascara!

Trubrit's picture
Trubrit
Posts: 1277
Joined: Jan 2013

I've just passed my second sessoin and my hair is already thinning. When I looked in the mirror yesterday, I could see my scalp through my hair, which I've never been able to do before. 

I can't stand things on my head, so a wig is out, but I do have a few hats which I hate but will wear becasue its bitter cold outside. 

Also the hair on my legs (no, I don't bother shaving in the winter) is bald in patches, and my pubic hair, most of which was shaved for surgery, is not growing back.

I don't expect to lose all my hair, but if I do, I'm going to get a Henna tattoo during the summer. Something fun for people to look at. 

Good luck with your treatments. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Thank you.  I start on Wednesday.  Not looking forward to it but the quicker I start, the quicker I'll be done.  Kiss

Trubrit's picture
Trubrit
Posts: 1277
Joined: Jan 2013

I was so apprehensive about my first chemo infusion, but found that the infusion itself was a doddle. They make you very comfortable, so sit back and enjoy the chameraderie in the chemo room, which is the part I really enjoy.

Are you coming home with a bag?

For me the side-effect part is the least fun part. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

My doctor's office said the first session will be a very long day (not sure why).  They'll give me my pack and it takes 46 hours to run it's course and then I go back on Friday for them to unhook it.  Seems very weird to me sleeping with meds  going thru my body.  They said I could shower with it as long as I covered it up so that might be a challenge.  I've got my bag ready to take with my Ipod, Ipad and Kindle.  My husband isn't a reader so he'll probably just look at me while I have headphones on.  lol   I plan on going to my first session with my "colon cancer blows" t-shirt.  It has a blue blowfish on it and very cute.  Laughing   Side effects are the part I'm dreading.

Trubrit's picture
Trubrit
Posts: 1277
Joined: Jan 2013

I'm usually in the infusion room around three and a half hours, so music, reading, and food pass the time. 

There are many others there too, and I love it when we get talking. It can be quite uplifting and happy.

I cannot feel the meds going into me at all, though I do feel a funny sentastion in my throat and I can taste the chemo immedietely. 

The bag isn't so bad either, though I am SO SO SO glad when its unhooked. I hate to feel confined by anything.

I usually take a bath and try not to get my port area wet. 

Really, the only problem I find with the chemo bag is when I have it by my side on the couch, then I get up and forget its there. OUCH! 

You'll be so happy to get that first session over, then you'lll know exactly what to expect the next time.  Its normal to feel apprehension about something you have never experienced before. 

I go on Wednesdays too, so I'll think of you while I'm getting my chemo juice for the week. 

Good luck!

renw's picture
renw
Posts: 282
Joined: Jan 2013

The reason the first session is long, is because they administervall the various IV's separetely and more slowly. This is to check for possible alergic reactions. On subsequent session they may administer two IV's concurrently and will infuse at a faster rate so these do not take quite as long.

khl8
Posts: 809
Joined: Nov 2009

I did not lose my hair, but I did stop curling it and using a blow dryer. I babied it and treated it gently.  However, I too was worried and bought a wig before the treatment started and it was the best $300 insurance policy I could have purchased.  I knew if I had the wig ready and had talked with by stylist about an after hours head shaving that I would not lose my hair.

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I got a wig that looks like my normal hair and it was only $70.  If insurance doesn't pay, I'm not out any money.  I had it on and sent a picture to my husband and he couldn't even tell!

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

first, I love your user name! gets right to the point, doesn't it?

My hair thinned out a lot so I wore a wig to work (hated the damn thing; it itched) but about 3/4 through treatment, it stopped falling out.  don't know why but now it's thickened out again and is curly!  I like the new texture and can't wait to grow it out.  I even have Shirley Temple spiral curls - well, very small ones. It's definitely a plus.

re; your chemo experience, did you have your mediport installed? I got my port installed and started chemo like the very next day. Ugh. It totally wiped me out and I spent about six weeks on a memory foam, watching Netflix and NCIS. It was rough, but after awhile my body got used to it and i became stronger.  Once I could get up and move around I started walking - one of the drugs makes you sun sensitive, and I had treatment during the summer, so I remember going to a supermarket and walking up and down the aisles just for exercise!!  I couldn't go out side because I'd turn into a radish in about 30 seconds. 

I will recommend chugging lots of water. I must have drank two liters a day. oy!  but i think it helped. I also tried to avoid processed food, or food with lots of additives and junk to minimize the burden on my poor liver.  Don't know if it helped but my liver tests came back all right. And protein - to build red blood cells (especially for women) eat 60 grams of protein a day. I was losing so much weight that I went to a nutritionist.  There isn't any food that I know of that will help you increase your white blood cells and platelets - those get whacked by chemo as well.  My platelets were constantly on the low side (bruised a lot) but only once did my white count drop below acceptable levels.  

I'm done with the first wave of chemo  and have neuropathy now; not pain just tingling. during treatment my hands would sometimes feel weird, so I ordered some carpal tunnel braces and slept with the on, or I wrapped my wrists in ace bandages. that really helped.  Definitely get gloves to take things from the fridge. I got used to eating warm yogurt (took about an hour to cool the little tubs to a temperature I could tolerate.) Cereal was an adjustment - warm milk turns ordinary breakfast cereal to mush.  

good luck with your treatment. This board is a great source of information and support. you're not alone!

cheers

Karin 

Trubrit's picture
Trubrit
Posts: 1277
Joined: Jan 2013

for the food advice. I need to get  grip on my eating habits and eat a little bit more on the healthy side.

As a bird watcher, I also love your picture/avatar.

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

thanks Trubrit - it is, as you probably know already, a lilac breasted roller, a magnificent little bird!

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Karin,

I stole my username from a t-shirt I bought! haha  OMG...I hope I'm not down for 6 weeks because I'm going back to work on the 25th.  That's my six weeks from having my tumor removed.  Where I work they're very understanding and if I have to miss 2 or 3 days a week then I'll take it unpaid.  I'll get the pack unhooked on Friday's so I'm hoping i can recoop on Saturday and Sunday's and be ready to go back to work on Monday.  Ugh.....not looking forward to it at all.  I have my gloves ready and heard that about the fridge/freezer.  It's going to be challenging eating things at room temperature when they're normally cold.  I guess no more coke Iccee's for me.  Darn!

lilacbrroller's picture
lilacbrroller
Posts: 266
Joined: Jun 2012

wear that t-shirt with pride. Yell  enjoy your hot orange juice!  

 

Yeah, everybody has a different reaction to chemo.  don't sweat it. For the first few months I was whacked, but then I went back to work half time (week at work, week telcommuting) and now i"m walking 10,000 steps+ a day.  good luck. 

Coppercent
Posts: 142
Joined: Jan 2012

I lost clumps of hair when I was on my 3rd treatment of Folfox.  I had pretty large areas of bald spots. I ended up shaving my head when it got really bad. I always had a trail of hair. I bought a wig but rarely used it.  I enjoyed the freedom of the bald head. One of our local hospitals had a free wig program. Try looking around for other programs. 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Thank you.  I'll look for that free wig program.

hippiechicks
Posts: 302
Joined: Sep 2012

The hospital I went to also had a wig program ... the nurses should be able to give you the dates they visit if they offer one. 

My hair thinned and broke a lot! I would wake up with it all over my pillow and it would fall out if I put my fingers through it. I did not need a wig, but my hair also changed from curly to straight.  I had cut it very short so not to have a huge change. I think the part that was the strangest thing for me was how sensitive my eyes became to light...which I think was partially because I lost and had thinning eye lashes.  I wore sun glasses all the time.  Even in the house, my eyes would hurt that badly.  

We used my hair as a science lesson here...if we looked at one of the strands we could actually see where I began treatments and how it changed (the actual hair gets thinner) each week that went by.  Not a bad chemistry lesson!

relaxoutdoors08
Posts: 512
Joined: May 2011

I had hair thinning but it seems like losing hair as it falls out.  Don't buy the wig yet.  I thinned at the top and was hoping it would grow back dark and thick like my cousin who had breast cancer but instead it filled in but was white  with a very baby fine texture.  Some on Folfox did not lose their hair at all so best advice is to wait and see.

NB

Fucc
Posts: 84
Joined: Sep 2012

My hair has thinned a bit. It was falling out the most around round four and five of folfox. I am now at round ten and it seems to have stopped falling out. I did not need a wig, however, upon recommendation from my hair dresser I bought this powder that you can put on your scalp to kind of fill things in. I can't recall the name, but I use it on my hair part. It actually makes a huge differenc and makes my hair look much thicker. I found it at a beauty supply store.

Coppercent
Posts: 142
Joined: Jan 2012

Don't stress over how you will react to the chemo. Everyone is different. I had my port put in on Tuesday. Got my first chemo the next morning was done by noon then went into work. Since I was on a tight time schedule I chose to drive myself. It was too inconvenient to meet up with anyone. My sweet sons thought they should be there to support me and each went once. They learned quickly it was boring and it was a good time for me to get work done. So they realized it was better to spend time with me when we could go out and do something fun.  I worked everyday and only took off the morning of infusion. I hated the chemo bag because the ones they use at my center are so big. There was no way to hide it at work but everyone got used to it after awhile.  Good luck it is better after the first one because you know what to expect. The unknown is alway the worst for me.  

 

Glammom's picture
Glammom
Posts: 21
Joined: Feb 2013

Hi I just had my first treatment yesterday and I'm feeling ok. Tired bad taste in mouth and a little acid reflux last night.  I slept worth my infusion fanny pack around my waist no pulling or tangeling.   My question is if you we're going to get sick (vomiting ) from it would it happen after first treatment or can it happen at aany point like the hair.   They gave me anti nauceaous Meds in Iv yesterday a d a prescription at home but I was just wondering and same twitch the neuropathy    Thanks this site it's really great your all so supportive and encouraging!

Fucc
Posts: 84
Joined: Sep 2012

I've been pretty lucky as nausea and vomitting has been quite limited. It's actually gotten better as it moved on. For me, the few times it hit me werdecree evening of day two and the morning of day three. After that it got better. Take the meds as directed. I did miss them a few times which probably contributed to the nausea and vomitting. For me the worst thingduring chemo is constipation like I havenever had or ever imagined could be possible.  I now manage this with laxatives. Although it still gets bad sometimes. 

hippiechicks
Posts: 302
Joined: Sep 2012

Hi...I sure hope you have good luck as many do with your treatments.  As for me, my first was fine...felt great, but by treatment 2 I was violently ill just hours after I came home.  I tried the first script, zophrane I believe, it did nothing to help. I took the second one as they precribed, and that one seemed to help.  I however became so dehydrated from sleeping so much and being so sick that I needed to go to the hospital for fluids.  This also happened on treatment 3.  By treatment 4, I was put on Aloxi prior to treatment via drip and that took care of the violent sickness.  I was still very nauseous and needed to have crackers with me or Lorna Doone's at all times.  As soon as it hit, I would eat a few of those and feel better.  That would last for 4-5 days after the treatment...then I would do my best to eat well and keep the wieght on. 

The neuropathy is more of a cummulative thing...the cold sensitivity hit me right from treatment one, but the true neuropathy did not hit until half way throug...then got progressively worse and lasted for several months after treatment.  I also needed to have dose reductions to get through all the treatements.  

Good luck to you!!

annalexandria's picture
annalexandria
Posts: 2170
Joined: Oct 2011

and hopefully yours will be too.  I did lose every last bit of hair on the second chemo I did (don't worry, it's not one they normally use with crc!), and it was pretty awful.  Weird how hard it can be, for men and women both, to lose their hair.   AA

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I had no hair loss with 12 treatments of FOLFOX, and I'm still taking 5FU with no hair loss.  I asked the woman who normally cuts my hair if it appeared to be thinning (I have thick hair), and she said no and that it was really healthy.  In summary, not evrybody has hair loss with FOLFOX....

Glammom's picture
Glammom
Posts: 21
Joined: Feb 2013

Thanks !

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