I was on Triple with Incivek. I did a total of 48 weeks of treatment.
I was lucky in the hair department. My hair got a lot thinner, and it seemed hair was always falling, but usually 1-4 hairs at a time, not a hand full of hair (which can happen). I think I lost maybe 1/3 of my hair, maybe 1/4. My hair is fine anyway and not exactly thick to begin with. But I know it is quite a bit thinner now. I am the only one who can tell I lost the hair. Mine started thinning more in about month 3-4 I think. I did not lose much at the beginning.
However, I have been off treatment for 13.5 weeks and it is filling in again.
Plus, I seem to have darker hair than before. And, even though I had very little grey when I started treatment, I have less grey now. I think most of the grey fell out on treatment and it is coming in darker.
If you are concerned about major hair loss, which some people do have but the majority do not, you could do what I did. Before I ever started treatment I went to a shop that carries the scarves and hats for people who have had chemo. I picked one out, the color and the style, but I did not order it. They said they could get it in a week so I waited, knowing that I may not lose my hair. Plus, my hair stylist could direct to towards the wigs if I needed on.
Hi - my husband experienced some hair loss, I believe it started around the third month or so, and it continued throughout the 24 weeks of tx. While it was noticeable (mostly to him) it wasn't dramatic. He swears it's not coming back 6 months post-tx, but I see a big difference. While it seems like a big deal going into tx, I've heard many people say that they would trade their hair to be free of Hep C, and that any hair loss was worth it. I believe Pooh made a great suggestion about being prepared with wigs in the event of a great deal of hair loss, but in my year on the forum, I don't recall anyone actually getting to that point.
I have another possible suggestion. I had read that a lot of people who have chemo cut their hair short before starting chemo. The idea is that longer hair is heavier and pulls the hair out easier than if it was shorter. Plus, combing longer hair pulls a lot more too. Also, do not color or highlight the hair.
I cut my hair pretty short, not a crew cut, LOL, but more like a pixie cut. I am waiting until about 6-9 months after end of treatment to get it highlighted. I do not want it all to break off.
I finished triple tx with Incivek about 9 weeks ago. I was unlucky as to hair loss. It didn't start to become become noticeable until about 4 months in, but by 6 months I'd lost about 70% of my hair. The loss was fairly diffuse, with just a couple of areas really down to noticeable bare scalp. It has been growing in for months now, but since it is also still falling out, the net effect is no change. I wore scarves some of the time, but mostly found hats to be the easiest solution and I now have over a dozen cute hats. I know it will start seriously growing back any day now, and although the hair loss was upsetting, it will absolutely have been worthwhile when I hear that final "SVR". Don't let hair loss stop you from keeping this horrid virus from destroying your liver!
Read your profile -- welcome to the forum, by the way -- and it looks like your mom is the one treating and this is her second try. What happened last time? I personally found the hair loss to be about the same with triple therapy as I experienced with Interferon and Ribavirin. I was on Victrelis, not Incevik, and lost maybe 50-60% of my hair and it went from thick with some natural curl to absolutely straight and fine. I started losing (both times) at about 12 weeks and the hair loss subsided mostly by 24-30 weeks. Now I am 4 months post and it is coming back with an unusual curl pattern. I really need to find out what the brain function is on my lower left back quadrant because it is curlier than the rest of my head. My hairdresser and I laugh about it every month!
ceanothus -- why are you still losing? Have you checked your thyroid function lately? That certainly can cause hair loss to continue post tx.
Hi...I had such thick hair curly hair shoulder lenght & the only way you could comb it was to get it wet..started years ago on dual therapy (inter/rib) and hair started slowly thinning out and my skin became very sensitive to light. Hair finely stopped falling but is fine and straight. Figured if I had started TX I would have just shaved head and saved myself the stress. Be thankful you can do TX whether you lose your hair or gain weight..I can not because my liver is so decomposed...good luck to you...
I was on double therapy - INF and Riba. Off six weeks now and I'm still losing hair. Can't remember when the loss started - probably about 2-3 months in - but I know it got progressively worse as treatment went on.
Pooh55811 - good for you for waiting to highlight. I did at 3 weeks EOT and I'm losing more now than I did while on treatment. Dang it.
On the plus side - I saved a lot this past year on haircuts and highlights.
I'm in the 3-4 month range and notice similar things (hair not as gray, it was silver, thinner and no need for a flat iron) as pooh.
Been finding more information here than from my ifd. So a question about coloring and highlighting, was told to only stop drinking and not make any nutrition or diet changes. What is the downside of hair color during tx?
I know this sounds crazy, but someone had told me to put extra virgin olive oil in my hair, just once a week and it would keep the hair from drying out, I did and I have not had any loss as of yet, although I do not do it once a week just when my hair starts to feel dry, then I just rub it in let it set for the day and just wash with conditioner, and I do not use shampoo but every couple of days instead of everyday, although I do use conditioner everyday. Hope this helps it did for me, I am in week 22
I think it's the interferon that causes hair loss.
Treatment is very drying to both our hair and our skin.
Olive or coconut oil is good for both.
I've used fine extra virgin for a long time on my coarse dry locks but I still lost 3/4 of it during treatment. However, it's grown back thick as ever.
Like Pooh, I cut my hair very short (husband says I look like a little boy). I can't notice the loss so it's good. It'll grow back after treatment so I was willing to cut it all off and avoid noticing the long hair coming out. I think it does help without the weight of the hair as well. Good luck.
I think you are right ... it's the interferon ... it was the only common denominator I found. Wish my hair would grow back like yours...never thought I miss that wild mass of curly thick hair but the grass is never greener is it... my hair has remained thin and short... and relatively straight. I have been using wen products but I think I am going to try your coconut oil idea...thanks
I'm at week 9 of combined tx and I'm experiencing severe hair loss. My hair is very long and has some wave (fortunately) but it's just not enough. I'm about to wash my hair & have my mom cut like 4 inches off, I can't handle watching it fall out and am sick of fearing washing it!!! As for people who want to color their hair there are several companies that make "natural" hair color that is ammonia and peroxide free. I will post the names & websites as soon as I get all the info. Would love any info on online chemo stores that sell scarves, etc.
I had a mane of hair. Long blonde, thick. After about 2 weeks of being on treatment, I noticed my hair falling out unreasonably. I cut it to just below my shoulders (oh the pain the pain!), but less hair following me around. I found a shampoo that was also perfume etc free. I've found it's more about not putting anything astringent on your head. Let the natural oils build up. Brush with a very soft brush or a wide toothed comb twice a day. It grows back. And why would you want to dye what is falling out?
Save all the money to treat yourself for a new look AFTER treatment.
I haven't had the energy to think about how to try and look better when I feel like ****.
interferon and riba cause hair loss, dry skin, sensitivity to light, and rashes. I also had a very thick unruly mass of blonde curls to mid-back length and after the combo regimen hair started thinning and breaking off. Finally got tired of it....did a mini-cut....and I mean mini....and it came back in straight and thinner but never have gone back to that mass of heavy curls I use to curse daily.....LOL
I know this is an old post however anything to do with hair I have to jump on the bandwagon :)
My hair is growing back thicker and fuller than ever. I even have curls! Before I had fine thin straight hair.
You should check out the other current hair loss thread at http://www.medhelp.org/posts/Hepatitis-C/Hair-Loss-Survey/show/1959624?
I also would recommend YouTube for videos on different ways to wear scarves. There was one great video that a chemo patient made showing herself making a beautiful head-covering from an old t-shirt and a little added decoration. I liked that better than most ready-made scarf solutions, but in the end I usually found hats to be the quickest and simplest solution - you throw them on fast and they don't have to be adjusted all the time like a scarf. I lost 70-80% of my hair but I still always had enough to look pretty normal with a hat on, as it always showed the most on the top of my head. Check out Sierratradingpost.com for a good selection of cheap hats . I was able to get 9 or 10 hats on one shopping spree for a total cost of about $100 with tax! I also found YouTube videos on how to sew your own hats and made one cute one myself when I couldn't find any in a color combo I wanted.
you know oddest thing...saw hepatologist today. The transplant nurse said to me....your hair is looks different...what did you do...I said nothing...she came up and looked at it and said wow...wow...your hair is getting looks like it is growing and getting thicker...I had thought so too but just thought it was wishful thinking,
The only change in medication I've had in the last couple of months is for my thyroid. Never took thyrroid meds before. Once I did I read up on side effects and it said that they actually could cause hair thinning.... For some odd reason I always seem to respond to a drugs in the reverse......could the riba and interferon caused a problem with my thyroid that I've had to deal with this last decade??? Since taking meds and not freezing like I have been for years...still tired but that is the HCV...will never get away from that until I get rid of the HCV....but have seen others post that they have had to take thyroid meds since starting treatment. They didn't have problems with the thyroid before treatment. strange hair.
Wish wigs didn't look like muskrats on my head (lol) I'd just wear then (LOL) Tired of dealing with it. I'll try that place for hats...when outside even on mild day it feels like sun is burning scalp. Thank heavens I look good in baseball cap but they aren't for every occasion and bless the fact I''m not a vain person focused on my looks like a couple of my friends,,, they spend so much money and time in pursuit of youth which has gone bye instead of enjoying today for what it is,
Hair loss for women though is especially tough because we don't want to go out in public....it's hard to fix our hair to make it look acceptable,...it affects our feminity,,,,it's an additional adjustment on top of everything else,,,,how come men look so good as they grow older and they look great when they get bald.....hmmmm. ....
I noticed hair coming out actually shortly after I finished the Incivek. I manily noticed it in the shower, not really the mirror so I guess I didn't get it that bad. One thing I did get was itchy scalp and I sort of resolved this by washing my hair every other day as opposed to every day. I am now 2 months post EOT and I can't really tell if my hair is coming back or not because although my hair thinned, it didn't really alter in appearence. Good luck, I'm still undetected waiting for SVR hopefully. Keep going!!
I've been using a hair colour for years from a company called Herbatint that is made in Italy. It's a vegetable dye with no ammonia and peroxide I buy at the local health food store. I tried it about 4 weeks into tx but found it irritated my scalp which I thought was strange.
Your advice has helped me decide to not colour until well after EOT. I just cut off 6 inches to a short bob, as I have lost about 1/4 of my fine thin hair and yesterday I found 2 bald spots. They are hidden so it doesn't really bother me. I wear a ball cap, but mostly due to my light sensitivity.
I really hope my hair grows back curly like some have said, it will be a welcome surprise if it does!
You know I was coloring my hair too....had a combination of gray at temples and side and the rest was dark blonde. Would color to blend all together.
Didn't color for about 3 months and I realllllly like the gray. I just have to figure out what to do with the back side of my head to make it all match and think I'll do a Haley Berry type of cute.....like short hair but don't like it real structured...like it messy and spikey.....plus it would be one less thing to have to be concerned about when I have tp.
I am about 6 weeks after a 24 week treatment of triple therapy ( incivik, interferon, & ribavirin) and at this time I am undetectable which is great news.
My concern, I have waist length, dark, baby fine hair, or should I say I used to have waist length hair. In the last 2-3 months, I have been loosing hair like crazy. I first noticed it in the shower when I washed my hair so I changed to a strengthening shampoo and conditioner and using a tangle free spray after towel drying but the loss has continued. I have never used a dryer or chemicals on my hair because it has always been extremely straight and baby fine but I always had a head full of hair. Not anymore.
What I would like to know, is there anyone out there that did not get their hair back? I have always wanted curly, or wavy hair and that would be great, LOL, but I would be happy to just have my hair back. My friend, who is a hair stylist, said cut it short and it wouldn't be as noticeable, but I just can't bring myself to do it.
Don't get me wrong, I am extremely grateful to have SVR undetectable, and would forgo my hair for it. I am just wondering if there is anyone who didn't get it back and if that is what I should possibly prepare myself for.
Also, is there a timeline that I can look for after ending treatment for it to stop?
Hi, it will come back, I lost most of my hair during tx and most of it is back now a year and a half later.
It stopped falling out within 3 months of finishing tx, I refused to get mine cut as well.
At least I had some hair when the rest of it fell out. Many people on here treated when I did, their hair came back.
In all the time I have been on here, I have met one person who lost all of her hair and did not come back,
Congrats on tx. It does come back, you will improve
I started out with medium length hair, and it didn't start falling out until a couple weeks after my 28 wk Tx with Victrelsi was over. I started taking the B vitamin Biotin, I took a pill a day for 60 days, and that seemed to help. By 3 months post Treatment, my hair had completely stopped falling out, but since I was so freaked out by the whole experience, I then dyed it black...then got sick of that color, and cut tons of it off...and the back and mid-section grew back curly, and I love it!! The top is just wavy, but I love my big spiral curls, on the bottom :)
It will grow back. I started with very long fine hair and I cut it to chin-length when I first started, so losses would be less noticeable. They always show more with fine hair! I had to treat for 48 weeks and it really started falling out a lot at about week 20. By week 24 it was thin enough to leave me with distinct bald spots at the front and also at the top back. I cut it shorter yet and I started wearing hats whenever I left the house. They are much quicker and easier than scarves, and even though I eventually lost about 75% of my hair I always had enough left around the lower areas to look like I had fairly normal hair as long as the top of my head was covered. The losses slowed but didn't stop until about 16 weeks after tx ended, and then it still has taken about 9-10 months to get some abundance back again. I've ended up enjoying my now very short cut, and decided to keep it at least until fall. My hair grew back with exactly the same texture it had previously(alas, no new curls), but I did get one pleasant surprise: it has much less gray in the new hair. I can call myself blonde again instead of gray!
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