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Hair loss

ameryan7
Posts: 7
Joined: Aug 2013

I am taking 2 rounds of 5FU and wonder about hair loss.  Ive had one round and start the 2nd in 3 days.  My hair is coming out a few at a time and seems like it is suddenly very coarse?

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I'm sorry your circumstances have brought you here, but I welcome you.  I began to lose my hair on day 21 of treatment and would guess that about half of my hair fell out.  It came out in patches all over my head.  Mine, however, did not become coarse.  I have very fine hair.  Some people have hair loss with this treatment, others do not. 

I wish you all the very best with treatment.  Please let us know how it goes.

TraceyUSA
Posts: 132
Joined: May 2013

 I started losing my hair around the 2nd week after my first round of 5FU & Mitomycin. I had thick hair and it started falling out by the hand fulls and continued through the end of treatment. I lost 1/2 to 2/3's of it (some spots were thinner that others). I refused to shave it - if the drugs were going to take it, I wasn't going to help them. :-) It did not start coming back until about 6-8 weeks after the last treatments. I finished chemo/radiation in March of this year and my hair is now very thick, very wavy (it was straight before) and a shade darker. Of all the side effects of this treatment the hair loss was one of the most bothersome for me.  I think it was a visual realization that there really was something "wrong" with me.  Don't get me wrong, the mouth sores, diarrhea and burns were bad too but this really bothered me.  The good news is the hair will grow back! 

jcruz
Posts: 216
Joined: Jan 2013

Like TraceyUSA, my hair loss began the week after my first round of chemo.  In horrifying clumps.  My dear hairdresser came to my house and cut it quite short but we agreed not to shave it all off.  It did all fall out after the second round of chemo and didn’t really look like it was coming back for about 2 months.  The complete hair loss was stunning for me but what I really struggled with after it came back in was how different it looked.  It was super curly and coarse and my hair had been a little wavy and thin before.  Now it’s beginning to look a little more like its old self, nearly a year later.

 

I wish you well with your treatment and recovery.

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

...for a man to talk with women about hair. But forgive me ladies, I will still give my input.

I went through the same radiation and chemo most of you did. I didn't notice any major hair loss on my head, but by the end of treatment some of my pubic hair fell out, which is of course is not a bid deal. I don't know if this was from the chemo or radiation.

Now I'm going through IV chemo which is the same like Xeloda (5-FU) and Oxaliplatin. I noticed some minimal hair loss sofar And my doctor said it will not be noticeable.

I believe there is one more factor that can add to course hair or hair loss. And that is nutrition. Radiation and chemo messes us up. It demages your appetite, the absorption of nutrients and in case of diarrhea or vomiting we can lose a lot of nutrients and vitamins.

I think taking Vitamin A and E and other vitamins plus keeping yiurself hydrsted could help to maintain the quality and quantity of hair and if it still falls out, to regenerate.

Laz

 

Marynb
Posts: 1134
Joined: Aug 2012

Still sporting that Telly Savalis look down below......lol. I am sure it is the radiation. I finished treatment 2 yrs. ago.

Marynb
Posts: 1134
Joined: Aug 2012

I was one of the lucky ones and maybe you will be too! I was told to expect hair loss. Instead, my hair got thicker and changed texture. My hair is thick to begin with. I don't know if was due to anything that I did or didn't do. I used baby shampoo, wide tooth comb, Infusium 23 leave in conditioner, and no blow drying. I also ate extra protein on a daily basis and kept very well hydrated. my hair got wavier!

If you are taking any vitamin supplements make sure you tell the doctor. I was told to take nothing, so I didn't.

Good luck with your next round of chemo. I am sending positive thoughts and prayers your way! You are getting closer and closer to a cure and healing. Hang in there.

lowens's picture
lowens
Posts: 33
Joined: May 2012
Like others have said, I am so sorry you had a need to join this elite group but I am happy you have a place like this to visit. Glad to meet you and all others who are reading this!

I had NO hair loss at all. My oncologist suggested that I cut my past-the-shoulder-blade hair to 1/2 to 1 inch around week 2 of my six-week course. He said that the follicles can get sore as the medicine does its thing and due to the length of my hair it could make it more uncomfortable. On the psychological end, he said it may be easier for me to handle if I were not experiencing my long hair falling out in clumps as my sister's did as she went through breast cancer treatment. So with that information, I cut my hair in a Halle Berry style, although I looked nothing like her! The good news for me was I did not lose any hair with two 5FU infusions and the 6 week course of Mitomycin (1 pill M-F). To add a little humor here, due to the radiation, I did lose hair elsewhere, if you know what I mean. BUTT, I have kept my hair short and life is great just a little over a year post-treatment!

After seeing my sister go through her 9 months of chemo, surgery and radiation, the whole time dealing with one side-effect after the other, I feel blessed to have had anal cancer and not breast. Yes, my "booty-burns" were not the most pleasant but the loss of her hair was one of the hardest side-effects for her to deal with, although not the most painful, and she has drugs to continue taking for a long while. No one can truly understand until they have walked in cancer shoes. When I see someone who has lost their hair due to cancer or whatever the case may be, I now look at them as a soldier wearing a medal of honor. I admire all of us!

I WISH YOU WELL! Many prayers for comfort and peace during this time. I completely understand what you are going through. 

eihtak
Posts: 822
Joined: Oct 2011

All my life I've had thick wavy hair. Different styles/lengths. During treatment for anal cancer (2.5 yrs ago) it got VERY thin. I never shaved my head but my pillow case was covered every morning. At the time it was chin length so just kind of wore a head band thing. Within weeks of finishing treatment it came back as thick, and wavy as ever and as a plus a bit LESS grey! Then, a year later was treated for breast cancer, again did not loose it all but it thinned and when came back was thick but much less wavy. Now I keep it no longer than chin length but change styles frequently. I am on some long term breast cancer meds so that may be contributing to the loss of waves......but still less grey than 4 yrs ago!! Sometimes I wonder how people would be if like legs, chins, arm pits, we all, men and women shaved their heads always?????

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

Why some people have straight hair, some waves, some really really curvy. Well it depends on the cross section of eachl hair. The cross section of straight hair is perfectly round. Waive hair is elliptical and really curvy hair like African-Americans' is very elliptical.  Of course the cross section of the hair is genetically inherited.

Laz

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

I did not have any hair loss during radiation and Xeloda. Recently I did 3 rounds of Folfox IV and I'm losing some hair, but mainly each hair got really fine and thin. I've had long hair in the last couple of years. It is noticeable to me and my wife, but I dont think strangers notice it that much. I won't do any more treatment before surgery so I hope it recovers before I start 5 rounds of  Folfox again.

Laz

Squirrel_Hill_Amelia
Posts: 1
Joined: Sep 2013

I was diagnosed 2 weeks ago with rectal cancer, and the doctors are going to test the degree of invasion before deciding whether to do surgery first or shrink the tumor by radiation and chemo.

It is important to me to avoid hair loss. 

Presumably they do the radiation plus chemo because of some synergestic effect. Presumbly there have been scientific tests with adequate data samples to show which gets the most bang for the buck in shrinking the tumor - chemo or radiation.  What if the pt refuses chemo and just does radiation?  Anyone know actual data on results for that?  How does it impact long-term survival rates?

Also, somewhere I read a possibly crackpot idea that if a pt packs their head in ice during the chemo infusion it will prevent hair loss. the doctors allegedly don't like the idea because they claim the cancer cells will "hide" in the hair follicles.  Anyone know about this?

If I am going to eventually croak, I intend to meet St. Peter at the pearly gates with my hair intact. I get the impression that the doctors optimize for extending life, without regard to the crappy quality of life the patient may have due to the treatments.

The colorectal surgeon claims that hair loss is not a side effect of whatever drug they would intend to give me, but my husband thinks he is lying.

Any feedback is appreciated.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

You are certainly entitled to your own opinions and to make your own decisions, but you asked for feedback, so here's mine.  If I was told, as I was, that the chemo is extra insurance that the radiation will have maximum effectiveness by making the cancer cells more susceptible to the radiation, then I would not hesitate to receive both the chemo and radiation.  I think vanity should be put aside when one's life is on the line.  Hair grows back--mine did.  Sure, it took awhile and for some time, I looked like I had the mange, but a ballcap covered that.  I could have worn a wig, but chose not to.  I would hate for you to go through radiation without chemo, then learn somewhere down the road that your cancer had returned or was never completely gone from the initial treatment.  I'm sure at that point you would be regretting your decision.  Rumor has it (and I cannot confirm this) that Farrah Fawcett chose to not have chemo so she could keep her locks.  We know how her journey ended.  There are no do-overs, so I think doing things the right way in the beginning is a no-brainer. 

I urge you to visit the website for the National Comprehensive Cancer Network and register.  This will give you access to the most current treatment guidelines for anal cancer or rectal cancer, whichever it is that you have.  You will see that the concurrent chemo/radiation is standard protocol.  I seriously doubt that the group of esteemed doctors who compiled those guidelines were  just making this stuff up.  As for your doctors lying to you, if you feel that way, then I would say a second opinion is in order. 

Please note that not everyone loses their hair when they receive Mitomycin and 5FU, the two drugs commonly used to treat anal cancer.  No one knows until they get treatment what the fate of their hair will be.  However, it's only temporary if it falls out.  Even if it wasn't, I would still do the full treatment.  I guess you must ask yourself which is more important to you--surviving or dying with a full head of hair.  I can guarantee you that St. Peter doesn't give a damn if you go through the pearly gates with a full head of hair or bald as a billiard ball.  Your statement about eventually croaking struck me as almost amusing.  We're all going to croak someday, but most of us prefer to hang on to life as long as we can.  Sorry to be so blunt, but I really think you need to think about this.  I wish you luck. 

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Believe it or not, you've got cancer. Hair loss is difficult, but the tried and true method of getting rid of this cancer is to do radiation AND chemo. The chemo may or may not cause you to lose your hair but as Martha said, it will grow back. Life does not. Please listen to your doctors and get the treatment you need.

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

I was told by another cancer early on: "You can't cherry pick and choose cancer treatments." If you want to have a chance, doing it the way it has been done successfully is the only sane choice.

Once a few clumps of hair came out I got my hair cut short very short. It's not like some chemo's where eyelashes and eyebrows fall out. We are lucky for the treatment we have to take in comparison to other cancers.

I got lots of compliments on my very contemporary hair cuts from people that had no idea why I had my hair cut so short and cut so often. I also died it red! That was fun for me.

You are not your hair. Why have hair on a corpse? That's what could happen if you don't do what you need to do to keep yourself alive.

We are here for you. We all hated to lose our hair but I am two years post treatment and am so happy most of my hair was replaced with my new hair which is much nicer than what I lost. I am alive and feeling the best I have felt in years. Anything that happens to my health the first thing I do is blame the treatment but without the treatment I doubt for very long at stage 3 I would have had anything to complain about today. To have been diagnosed in time was nothing short of a miracle and I have to remind myself to be grateful for being this side the ground.

We come here to complain mightily sometimes but we are still coming here because we can help others from having gone through what you are facing and offer hope that it does get better.

It gets better:-)

Hang in there!

Sincerely,

Sandy

 

 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

PLEASE don't let the fear of hair loss dictate your treatment!!! I cried my eyes out and was so upset over the thought of losing my hair after I was diagnosed. I'm not sure what kind of chemo your Dr's are planning, but I doubt they would lie to you... Do research on the drug they are recommending.. Some chemos make you lose your hair; others do not.  The chemo for anal cancer did not cause me to lose all my hair. It got very thin and had bald spots. I got it cut really short and wore a wig when I went anywhere for a while. But when summer came, I got sick of it, and just went with the short, short haircut with some bald spots. It was amazing to me that I wasn't as self-conscious as I thought I would be, and people did not stare like I thought they would..... Don't lose your life over your hair!!! You are worth so much more than that!!!!

Marynb
Posts: 1134
Joined: Aug 2012

I would love to convinvce you to keep a positive and optimistic attitude towards your treatment and don't think about those pearly gates now!

I was told I would lose hair. I did not. My hair got wavier and thicker! Go figure. I had prepared myself for losing my hair and had bought some hats and new earrrings. I know many, many brave women who have lost their hair and they looked just as beautiful without hair! Real women don't need hair! Stay strong and focus on what is important.

Your life is so much more important than your hair. Hair grows back! I want to encourage you to accept the treatments and save your life!

I wish you all the best for your treatment!

TraceyUSA
Posts: 132
Joined: May 2013

Like I said previously the hair loss really bothered me BUT would I have not done the treatment if I knew I was going to lose my hair?  NO!  At the time the hair loss seemed like it lasted forever but now that it's coming back and it seems like a blink in time.  I didn't want anyone to know I had cancer and the hair loss changed that because it was visual and many people guessed why.  That's probably a big part of why it bothered me so.  I never shaved my head, I just let it fall out on it's own and it got VERY thin.  My hairdresser has be able to work with it and make it more managable.  There is also a product called TOPPIK that helps camouflage the bald scalp which make the hair appear fuller.  I know it sounds strange and even goofy but it really works.  TOPPIK is hair fibers that you shake on (an automizer works best) and use hairspray to hold in place, it washes out.  I went to get a wig and the consultant showed me this product to help until I was ready for the wig. They mixed several shades together to match my hair color and I ended up using it and getting shorter haircuts until my hair started coming back.  I never got the wig.  (A few months ago, they even showed this product in Redbook magazine to help with hair loss.)  The other thing is not everyone losses their hair despite taking the same drugs.  My oncologist told me there's no way to predict side effects and he's seem some people actually have no side effects at all.  Please don't let the chance of hair loss determine your treatment plan. 

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

Both chemo and radiation.  I did not lose the hair on my head, but from the waist down I was totally hairless.  Darn it, it grew back!

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

I remember when my hair came in like coarse fuzz. I was so depressed. I had my hair cut very very short when the first clumps came out. The hairdresser did a fantastic job. Then I died it a beautiful red. I had never been a red head before and found it to be a help for my mood. My husband was no help. He didn't even pretend to think the red was a good idea, but I just think sometimes you need to just do stuff for yourself. And being a red head for a few months was fun for me. I may do it again one day..

My last tx was August 15th two years ago. I have the most fantastic hair now. It is curly and soft and stays where I put it. I have it highlighted every three months and wear it long or in a pony tail. It is far better than the hair I lost. I pray the same for you.

But most people go through some changes before the hair that you will get to keep starts to come in. The first hair that comes back is not the hair you will wind up with. This too will pass. Hang in there.

All the best,

Sandy

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

MSK gave me a pamphlet that said shaving your head is a very bad idea. They recommended the short hair cuts which I had. That way if you need a wig it's easy to put it on and wear, but I never did have to get a wig. They cautioned that if while going through treatment you get an ingrown hair you could get an infection. This is a very bad thing for a cancer patient undergoing through treatment and could be life threatening.

Television personalities that have had their heads shaved while undergoing cancer treatments should know better. This behavior is contradictory to sound medical advice.

All the best,

Sandy

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Sandy, you look wonderful. I remember when you had short hair, just after or during treatment - and you looked beautiful then too. Very pretty. Hair does not define us - yes, it's a part of us, but one that can be changed depending on circumstances, events, and just on our every day whims. How wonderful!

Barb5454's picture
Barb5454
Posts: 63
Joined: Feb 2013

I started losing my hair a little bit about the 2nd week of treatment. But it wasn't until all treatment was over that I really started losing me hair. I use to have really thick hair but now I have really thin hair. (I'm 8 months post treatment) I have noticed that my hair is real wavy. Hang in there.

LaCh
Posts: 509
Joined: Dec 2012

My hair fell out in clumps every time I showered and got very till four months post treatment, then slowly stopped.  Hang in; it'll fall out but eventually, grow back. Takes time but it will.

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