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I need answer, please!!

EissetB
Posts: 135
Joined: Apr 2017

I am only on my 3rd FOLFOX infusion on the 12th of this month. I have a stage 3 which is bad. But my hair is falling out already!! And I am freaking out....my onc told me my hair will get thin but not lose it. Are you having this kind of issue too? If so, what do you do? Please help me figure this out. I need some comfort, too. :(

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

But when mine  thinned out to the point I had bald patches I bought a wig, but it was uncomfortable in the heat, so I opted to get my hair shaved off, leaving  just enough on top to spike.  Then I  bought some hair cement and spray on dye, spiked it and  dyed it blue. My kids and grandkids loved it! It  grew back in time, but I think  it must be somebody elses's hair growing on my head because it's  growing in wavy and curly in places, whereas my hair had been straight as a board for  seventy years.

Grace/lizard44

EissetB
Posts: 135
Joined: Apr 2017

Oh no! That means my hair will eventually fall out in 6 months!! Oh my! I might have to purchase a wig soon. But I wonder why my onc told me my hair will only thin out. Every time my head itches and I scratched it, some hair would comes off

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

I’m getting ready for my 10th FOLFOX infusion and also stage 3. My hair started thinning at treatment 3.   Also, my eyebrows, eyelashes and body hair in general thinned and for the most part stopped growing.  However, at treatment 8 my oncologist stopped the oxi due to the neuropathy and I have noticed my hair, eyebrows, eyelashes and body hair have started sprouting! Woo-hoo!! Not sure if my oncologist will put me back on the oxi for the last three treatments or not which will have an impact on hair growth as well as other side effects.

That said, as much as I am freaking out, too, about how thin my hair is and how much comes out after each wash or even brushing/combing, my friends and family say it doesn’t look as bad as I think it is.  We are just so aware of what is happening and others are not.  Also, in general the current thinning does continue to cover my whole head and I do not have any bald spots. It just looks overall a bit flat. I was used to washing it every day, blow drying and using a hot iron and now I wash it two days a week and minimally blow it mainly to give it some volume.  I will say it is so frustrating to finds hair all over my clothes, the floor, etc.  I used to pull it back too when I worked out or on the weekends and now I just let it hang.  I do still color it and it hasn’t been a problem. I use eyebrow pencil to fill in my brows and eyelash thickener to highlight the fine hairs when I go out. 

I must say that overall my hair is hanging in there as I’m sure yours will too.  I am thankful that I have not completely lost my hair as other chemos do have that affect.  Talking with other cancer survivors they have said their hair has grown back in full without any long term affects.  

Cindy   

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I didn't lose any hair from chemo. But I did lose hair a couple of months after the PE I had while on chemo and the doctors said it was from being on so many drugs to save me so I'm probably of no help at all. In my case a lot fell out but I still had hair so I got it cut shorter so it wasn't so obvious. It was then in kind of a page boy style, which I hated, but at least it looked okay. My ponytail was about half an inch long. Hopefull your's won't completely fall out.

I hope this is the case for you and you just get thinner hair. Good luck!

Jan

EissetB
Posts: 135
Joined: Apr 2017

I just got out from shower today, and oh my!!! looks like half of my head lost half of my hair. Two handful of hair fell off from here and there!! My husband came home from work to check on me, and I told him what happened to my hair. He calmed me down and said it will all come back when the treatment is over. His words calm me down a little bit.

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

My hair thinned out so much, I looked like Gollum from the 'Lord of the Rings' movies. At that point, I just shaved it right off and was very happy with my shaved head and didn't bother with a wig. 

It is quite disheartening to see it falling out. Quite a shock to the system. But alas, like everything else, this too will get better. 

Now, I don't want to hear you saying that Stage III is bad. If you tell yourself its bad, then it will be bad. Tell yourself that you are so happy its not Stage IV, and that Stage III means you can beat this Cancer. Its all about perspective and good vibes. Fill yourself with positive, good thoughts, happy thoughts. 

There are a million former forum members who are Stage III. They don't post anymore becaue they are off having a happy life, Cancer free.  Some stick around and help the new folks, and for that, I am very grateful. 

Chemo is wicked, no doubt about it, but try your very best to be as positive and healthy as you can, and you will make it to the end of treatment and count yourself blessed.  

You know we are here for you on the forum.  Chin up! 

TRU

Bellen
Posts: 281
Joined: Aug 2016

I am having folfiri (same as folfox but irinotecan instead of oxyplatin) + avastin.  My hair looked okay for about 4 treatments, had been following out a bit.  Then started seeing hair everywhere (my hair was fairly long).  After about 8, I snipped off the back and left a little back there.  It is super thin, very little left.  Looks pretty bad.  I had bought a longer wig before I even started chemo - similar length as my hair and have been wearing it for a while now when I go out.  Have old wig that I wear with a hat.  Wear a comfortable hat or no hat around house.  The wig feels like a hat on your head all the time, but I just want to look similar to what I did pre-cancer diagnosis.  I think you need to do whatever makes you feel the best, whether you go with a wig, scarf, bare, etc.  So important to do what makes you feel the best because we have so many other side effects and issues with our chemo.  I had cancer 11 yrs ago, lost my hair then, so I just expected that I would lose my hair this time also.  Best of luck with your decision depending on your hair loss.

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

With Folfox, it's not a given.  The hair on my head changed consistency, but never fell out.  However, all the hair from my eyebrows on down disappeared.  

It will grow back.  While it's upsetting to lose your hair, do what makes you most comfortable in terms of dealing with it - wigs, soft scarves or hats - and accept this for part of the torture that is cancer treatment.

As for staging - I'm stage 4, and was diagnosed in 2007.  I'm doing fine (and all my hair returned to normal.)

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh yeah, I forgot about that part! I lost most of my eyelashes and eyebrows as well as my leg hair. My eyebrows have grown back kind of oddly with some hairs going in crazy directions, my eyelashes are there but they're not as long as  they were, and I've growm back about 5 legs hairs in total, 3 on one leg and two on the other. Shaving my legs is now just finding a hair and dealing with that one hair. Funny how it affects the hair. My uncle has long term shingles and has had it for over twenty years. The side of his face that's affected does not grow the old man long eyebrow hairs that the side that's not affected does. Strange.

Jan

EissetB
Posts: 135
Joined: Apr 2017

Thank you all so much!! I am blessed to have you all around me. You are all beautiful persons. Yes, Tru, I should say I am blessed it's not stage 4 that I had to deal with. Three is bad but not worse...I should be taking care of myself instead rather than to complain or be a cry baby :D

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

It is good to have a good old cry, just keep it in check.  It can overcome you, and your system will have a harder time fighting the Cancer.  

You are definitely NOT a cry baby. 

TRU

EissetB
Posts: 135
Joined: Apr 2017

Thanks, Tru!! 

marbleotis's picture
marbleotis
Posts: 696
Joined: Mar 2012

I was a stage 3b signet cell and am 5 1/2 years NED.

My hair "thinned" about chemo #4 till it was fine, some bald spots but it was hard to tell.

After my 12 rounds of 5fu and Oxi, it all came back with a better textue may I add.

Bottom line, as upsetting as it is.  It is just hair - it comes back

Robert2015
Posts: 5
Joined: Apr 2017

I think the real insight is we all respond a bit differently to chemo/radiation. I am male with the old fashion male pattern baldness, so I was not all that worried when my once shared with me the potential for losing my hair.  Around the 4th folfox treatment i began losing all hair on my body south of the belt line. That totally took me by surprise.  i lost all of it, but over time post treatment (1 year ago) some  came back but not all.  To Tru's posts, you have to roll with the punches the disease and treatments serve up. Stay positive and remember you have many here in the trenches that are fighting with you. Communicate how you feel to us and those around.  Blessings to all!

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