scalp pain

For those that don't know I am on shot 8/48, Geno 1a stage and grade 1.  I have been on procrit since week 3 and neupogen for the last 2 weeks. In the last week or so I have had scalp pain mostly in the top of my head there are a couple little bumps and those hurt also but a lot more of the skin area hurts.  Am I getting ready to lose hair?  I am using Nioxin shampoo and scalp therapy to help prevent it.  also is there anything I can put on it to make it quit hurting.  My hair is short so it is not the weight of the hair.

On a better note my doc in Pittsburg finally did a PCR (week 6, shot 7) and I will find out the results the 27th when I have to go down there. Wish me luck  I am trying to find a doc that is treating Hep C patients that is closer than 4 hrs away but so far no luck.  You would think it would be easier to find one.  I can't believe that with such a prevolent disease it is this hard to find someone who is treating patients.

[friole]

Sorry, but I bet you are going to start losing hair.  I didn't so much notice pain as itchiness - drove me to extreme scratching.  I too used Nioxin and thought it helped, but I think, what is going to come out is going to come out.

My niece has cancer and after her first chemo her head hurt terribly.  Her mom who had the same (form of breast) cancer told her that her head hurt really bad when the hair fell out. Niece just went ahead and shaved her head.

I hope your fallout is not too bad. I figure I lost about 40% and it became terribly thin and straight. It started at about 12 weeks and lasted about 12 weeks.  Now, 5 weeks post tx I am still waiting for it to come back in.

[NYgirl]

Like my Friend Friole knows.....I've lost about 60% - 75% of my hair pretty much at this point.  Oh there are still pieces all over my head so I don't look "bald" but I look like i have the THINNEST hair in the universe.  It's so odd because I always hda WAY too much hair in the past.

But...my point (cause i ramble so much( I ALSO had the thyroid problem and one of the sides of THAT is hair loss and I really believe it contributed to it BIG TIME.  Right about that time when it was coming out in fistfuls...is when my thyroid started to die.

I THINK as far as I've read the people who have it BAD have only lost like 40% or so.  That is livable if you ask me to get rid of this disease.

I've not heard of anyone really losing hair like you picture with chemo...where you put your hand in your hair and it just all falls out in your fist --- it more like falls out in dribs and drabs in the shower and brushes and stuff.

I wouldn't sweat it at all if I was you.  It is either going to or not and nothing will change it.

I do believe Cuteus said BIOTIN is the vitamin that helps.  Maybe you can start taking that.

[way]

Yes the same thing happened to me and the hair was falling out all along. I scratched scalp too much and then got a scalp infection and head was weeping. So be careful and don't scratch too much.

Maybe you can put some kind of an oil conditioner treatment and leave on overnight. This may help to sooth scalp.

My scalp is so dry now and I have dandruff from hell. If I bend over and sctrtch it's like it's snowing!!

Somebody posted about their ears peeling and mine are too.

[sfbaygirl]

A few weeks ago my scalp and (other hairy parts) were itchy, weepy and I felt sores all over. I started using T-Gel and it seemed to go away. I was really happy! My hair is shredding, really dry now and I don't have much hair loss, but is coming out a bit. My hair is thick and long. It seems to break off in little pieces and come out in long clumps. I hope I don't lose too much, and it doesn't seem to be much of a problem now. I am on 21/48 now. The conditioning idea is a good one. I need to go have my cut quite a bit as it is really getting straight and stringy, opposed to curly. In the whole scheme of things, this doesn't bother me too much.

How is the neupogen? I am going today and switching from Neulasta to Nuepogen. I had a great week, almost felt normal! Went to 3 baseball games, one football game, dinners with friends. It was wonderful! I am hoping that Neupogen doesn't put me down for a week like the Neulasta. Tx is starting to be doable, except for these Neulasta shots.

Hope all is well!

[Fisheress]

Hey all!  Just wanted to jump in say hi and comment on the hair thingy.  Friole, yours coming back ok?  LOL I have Alfalfa sprigs growing everywhere, bout to drive me crazy!  Just colored my chair Sat. for the 1st time since off tx.  Washed that grey right outta my hair!  The hair thing is a bummer but should be the least of worries, it does come back.  It a bummer though to lose it though.

Just got last weeks lab report back.  Everything is LOOKING GOOD!  Hgb up to 13.7!  WOOHOO and feeling it too! HCT 40.8,  ALT 19.....AST 16, WBC 7.27

If I am not mistaken, those ought to be some pretty good numbers!  Just found out last week that they will do another biopsy in Jan. to compare to the one before tx.  So almost completly done!

Hope all are well here, have not been on the computer much reading, out enjoying shopping and stuff.  My sincere good wishes to everyone here.

Fisheress

P.S.  Took a friend with me last week to clinic, she got to visit w/my cooridinator about her hep C and new tx.  She has been on maintenence for 5 years!  Anyway she has never been tx'ed with current meds and now going to do that thru Galiti.  My team and Galati was in Brazil on study all last week.  COOL HUH?

[tulsatime]

My hair started falling out around 16 weeks. I would see it on the kicten floor in the bed all over the house my hair is dark brown and real long too. I used a no peroxide or amonia (ammonia) semi- perminate hair color. And it seemed to do fine. I only lost about 30% of my hair, but I was only on treatment last time for 24 weeks. After 6 weeks of stopping TX I made the mistake that I could go back to dying my hair with the hard stuff, When I rinsed the color out It came out in clumps. Use the gentle stuff even after stopping treatment for about 3 months I would say. It did finally return to normal, even got the curls back. This time I am on TX for 54 weeks, I hope I do as well as some of you doing TX for a long time too. Cheers ladys to having hair when this is all over!! Debi

[tulsatime]

We crossed paths, wanted to say YESSS INDEEDYYYY those numbers are sounding wonderful. Glad to hear you are feeling great. Can't wait to see the biopsy to see how much your liver has backed up. Have a great day, Debi

[sfbaygirl]

Glad to hear you are doing well Fisheress!

I colored my roots before I went to Jamacia. I haven't had my hair bleached for over 6 months, but was thinking about doing it soon. Not a good idea, huh? Does it make it fall out more?

[Fisheress]

I did my roots a couple of times while on tx.  Did not leave it on as long and the last 5-10 mins I took what color was left in the bottle, added shampoo to it and did the rest of my hair.  That helps the color not burn up the rest of you hair and still gives it the enhanced color.  The reason for the shampoo is not to cause overlapping everytime you color.  Full strengh will burn your hair up and cause breakage.

Good luck!

[Mister beagle bailey]

Where have you been? I sure miss you and can do man's humor.  I really could use it right now.

Beagle

[Mister beagle bailey]

Where have you been? I sure miss you and can do man's humor.  I really could use it right now.

Beagle

[painterlady13]

I had a feeling that that might be the beginnings of what is to come....  Oh well TX is worth it I just hope that it won't be too bad.  I did cut my hair right before TX it was growing out and was getting just right at a little longer than shoulder length.  Now it's short again which I hate but my mom thinks looks great.  

SFBayGirl - Neupogen has been ok I was concerned at first also and the first shot I got really nauseous but doc said that was riba not neupogen....  uhhh huh But I didn't get sick the last one and the Procrit is kicking in also. I am being able to do more things now.
Now I just wish my roommate would realize just what low WBC is and means.... lol I was supposed to go with her when she went to visit her 2 yr old nephew this weekend and she didn't want me to get him sick with the small amount of congestion I have. He is in Daycare and starting to come down with something... Needless to say I declined the visit for my own health not his.....  I guess I just feel like she really doesn't understand what this TX is doing to my system. Sure wish I was back home in Sac as at least I would be near family and they have made an effort to search the TX and it's effects.  Am I the only one here that doesn't seem to have a supportive home life? Sorry just groaning a bit here.

[painterlady13]

Just went back and read your note again

Wow How Fantastic on the bloodwork.  you are right it looks really great!!!!!  Way to go!

[tulsatime]

Believe me not a good idea to bleach at all. I am a hair dresser or was once a pon a star. I only do my roots and only with the colors that have no peroxide and no amonia (ammonia). I almost cried when I did the regular perminate hair color and my hair came out in clumps and I had been off tx for 6 weeks. let me know if you do decide to do it. I will be interested to know how it comes out. But I wouldn't if I was you!!!LOL, Debi

[Algernon]

My scalp was itchy but, even worse, really hurt a lot.  I didn't start losing hair until about 16 weeks, but it didn't stop falling out until two months AFTER TX.  Pain went away when it stopped falling out.

I had short hair to begin with but got it cut REALLY short after TX.  Like Fisheress, I had a weird grow back pattern.  Grew in like a Mohawk--a stiff tall ridge down the center of my head, with the sides nice and flat.  Now, a few months later, it's finally long enough that the ridge leans a bit (progress, I say!).  On the up side, it ain't gray (I had colored my hair for so long, I figured it had to be all gray) AND it's very thick.  No pain, no gain?

Don't worry, it won't all fall out and it will return.

Hang in,
Deb

[Fisheress]

Heeerrrreeee Beagle!  Come here Beagle Beagle!  Have you been a good puppy?  Chasing any wabbits?  Finally did a major dust wabbit cleaning around here, left nothing unturned.  Took 2 days of constent work.  Tiki found the momma wabbit den in one of the closets and daddy wabbit was hiding under my dresser in my bedroom!  After Tiki got ahold of them.......they won't be back!  My dirty house guilt IS GONE!

So how the heck are ya?  Did you decide to take a break from tx for a while?  I was at the clinic last week, they are starting a new study for non responders.  I am not quite sure what meds they will be using.  Wish you were here and could go see my team.  They are wonderful.

So sorry I have not been here to humor you although you, cando, rocker and the whole buch of ya have been weighing heavy on my heart and mind.  Not been at the computer too much.  With HGB back to noemal I have been out running the tires off my car!  Shopping till I drop!  I have not forgot about ya and will continue to check in.

OXOXOXOXOXOXOX
Fisheress
Going fishing!  WOOHOOO!

[sindog]

I'm bald on top with hair around the edges. Haven't lost a strand of hair in 45 wks of tx. Go fiqure.

[Mister beagle bailey]

So god to hear from you and glad your back to normal.  Because os my thalassemia anemia no dr will treat me.  I'm going in Feb to see Dr Schiff but don't know what the out come will be.  I still have riba left but the new drug coming out is called tribavirin, it doesn't attack the HGB so it would allow me to treat longer with procrit.  But who know's when it will be out. Did your Dr say what meds they will be using for the trial?  If possible, please find out.  Thanks

Beagle

[painterlady13]

Yes I am From Sacramento,  I didn't leave there till I was 40, but live in northern PA now Just almost as far as NJ anyway, might as well be, it feels like it. I'm only 46 now but I sure miss family support.
as far as the neupogen I didn't get headaches but it did make me feel wierd and kinda nauseus the first shot. But since you have been on neulasta already maybe this will be just less.  Lets hope so for your sake. I took the 2nd shot last week and no sx at all..... Good luck tomorrow

[friole]

ny - You are right about that hair loss.  Seems that when your hair falls out you notice those with thin hair more. My hair loss was nothing compared to some people I have seen.  My hair just changed from thick and full of body to thin and straight -

and NO - fish - my hair isn't coming back at all yet.  I keep wondering when...  That is awesome that the clinic is going to take your friend on.  I hope they have success too.  I am surprised and pleased to hear you will have that post tx biopsy in January.  Are you going to have a 3 months post PCR?  

Glad you are going fishing again - catch the big one for me!

Beagle - I can't imagine how you feel.  At least you are going to see the best.  Surely Dr Shiff will have a solution\

frijole

[sfbaygirl]

So you lived near Sacramento? Now you are in NJ right? That must be hard without a good support. I know that if I didn't have hubby here, it would probably be better alone. Who else would put up with my moody, lazy butt? LOL

I am switching to Neupogen tomorrow. I am hoping for less sx. That seems to be the worst shot for me. I told my doc I got migraines from the shots, he said it was the INF. I didn't know. Well I know now, b/c the only time I get them for 7 days is when I take that shot! It seems docs love to blame the sx of the drugs on the other dr's drugs. Guess they don't have to deal with it then. LOL

[dyce]

Painter, Ive lost some hair here , some of it may be to the wife slappin me about the head!!!

  Beagle, get yur beagle nose back in the air and start windin them bunnies again!!
   Your a strong dude , you'll beat this and besides your beagle liver is in real good shape, plus the tx gave it a good rest!!

[Alady1620]

I have scalp pain and I'm on treatment.  It is not sores.  The skin hurts.  I have no idea what to do about it either.  I wanted to let you know that you're not alone.

[way]

Just in case you need it....
The product I was Rx'ed for my scalp infection is "DermaSmooth"

It is a medicated scalp oil with some cortisone in it also. You apply amd leave on overnight(use showercap). This worked for me in two applications and my scalp was no longer sore and healed up. Now it's just real flaky.

[sfbaygirl]

Thanks for the tip! I guess I will do my own roots again and wait not do a coloring. I usually do highlights and low lights, but don't really need to. Geez, I have a hard time looking for the darn polish remover or getting a hair cut. I really need one at the moment. My hair looks like straw!

[Forseegood]

Hi, haven't started treating yet, but I'll tell ya, started on that Biotin about a year ago and I can see that it is helping my hair loss (prob due to menopause but God knows, there could be SO MANY things going on in any one body...these boards have helped me come to that conclusion) so I'd really try it...you can google (or I use yahoo search engine) and see stuff on hair loss and Biotin is right up there...my hair is coming in thicker even though I tint it, which used to make me lose my hair as well...I hate to sound so vain, but my hair is kinda my signiture, and the thought of losing masses more then freaks me out, I'll admit it, I"m vain...

NYGirl: that's where you come in, thanks for talking about hair loss like that, gives me some perspective that it could be doable like you like to say, those percentages don't seem too bad, I know it's hard to calibrate these things with any one person, but what you said made me feel a little better about losing it...I have kind of a big head and I'm always afraid I'd look like a beach ball without any hair, maybe I'll still have some, ha ha! I know how trivial this sounds considering all the stakes, and I applaud the women who don't mind losing it too much, I just ain't one of them...unfortunately...thanks!

[Forseegood]

Let's do the timewarp again!!!! I'm right in the 60's and 70's and I ain't comin out!!! ha ha! I love "fro looks" wether they be Jew or what...to me, "All roads lead to Rome"? All roads lead to hormones...menopause and male menopause, and a little ditty called Male pattern baldness are the reasons for hair loss...I haven't really heard anyone say that just having hepatitis lead to their hair loss, just the threatment for it, but what do I know anyway....My younger sister has ESLD and she has more hair then a troll doll, some of this is prob just plain ole genetics....

that Biotin really works for me, course I'm not on treatment yet...I'll go and try and look for these really good shampoos that I've heard mentioned that are supposed to be the best for hair loss, specially for chemo related hair loss, don't have time now but I will find then for you, maybe someone else knows right off hand

hope youre well...how did you know I had long hair? just curious...heard someone say in a documentary that the editor is the co-writer of the film, Sean Penn or somebody, thought of you....

[pigeonca]

Like Forseegood, my hair has always been signature - thick and curly.  Never could get it long like hers though.  It just gets bushy, and Jewfro's are just so 70s.  But I've noticed some thinning over the past few years, and attributed it to menopause or whatever.  Could it be the hep?  Maybe after I treat the hep, the hair will come back in all its former glory?  That would be nice.

[way]

Were you thinking of Nioxen for hair loss?

[Forseegood]

thought this might be appropriate, love self-hypnosis...

Hair Loss
Here

[pigeonca]

I knew you had long hair 'cause you referred me to your listing at Janis and Friends.  You said I should contact you via e-mail there re lunch/coffee one of these days.  Maybe later this week??
pigeon

[Forseegood]

Oh, right!!! duuuuh...forgot about those little scrunched up pics they have on your profiles over there..he he...yeah, email me anytime, whenever you feel up to it, have your people call my people, ha ha ha! I was really glad to know that your biopsy went well...I'm really keeping my figers crossed that it isn't too bad, it usually isn't...

Just not Farmer's Market/Grove, it's Bedlam over there unless you go in the mornings, and I usually am working in the mornings...we'll figure something out..be well and it'll be really nice meeting you....youre really an asset to the board, those blood sugar things you posted were quite illuminating, I've always thought you needed to fast, etc etc...great stuff...

[painterlady13]

The Nioxin is supposed to be good for people treating with chemotherapy.  I got it at Wal-Mart in the hair salon  And while it was $35 for the bottle I'll bet ya it will last me all my TX it is a quart and I got the "Deal" which was the $25 bottle of scalp therapy (a conditioner) also.  I started using that right when I started TX in hopes that what hair loss I might experience will be minimal.  we'll see....

[beamishboy]

hey BB, yu sound down but not out..hopin new doc is the man with a plan!...relapse must be the worst feelin ,but i know ya got 9 lives,oops that's kittys...if the new trx protocol includes 48 weeks of this daily toxic ****-please try and enjoy,exercise and recoup that wonderful humor,compassion & strength -You will need it!!! now go bay at the moon you ol hound dawg...
sindog-yur monk's tonsure of a haircut sounds perfect!...easy to access the itchy spots and vanity is already a nonissue...also no need to dye your chair?...i'm not losin much hair but my brain is goin bald..

[Forseegood]

You know, it wasn't Nioxin that I was referring to, now I can't find the info...I'll find it though...tell us how the Nioxin is working for you though...

[sfbaygirl]

Another CA girl! Thanks for the input on Neup. I am hoping for less sx as well! Maybe my labs will be great after 6 days of Inf. and I won't have to get any shots tomorrow. That would be the best. I have to be in court Wed. for Oral Argument with John. Really want to make that!

Come out and visit anytime! It would be fun to visit.

[Lonestar823]

Yup, Sounds like you're ready to lose some hair.  For me the scalp pain was caused by severe itchiness.  I finally found a product in my drugstore called Scalpicin which would stop the intense itch which led to the pain and extra hair loss from scratching.  Claritin allergy tablets helped with the all over itchiness too.  Jeez, sometimes I used to wonder if people suspected I had head lice. ; ]  Nioxin didn't work for me.  It made my longish curly hair dry, straight and brittle.  I switched to baby shampoo and children's detangler.  I only used a wide tooth comb to comb my hair straight back then clipped it in a bun so I wouldn't have to comb it through the day.  I did lose about 40 percent of my hair but what I had left was in very good condition using the baby products.  If you want to color your hair use only the gentle rinses.  I used the Clairol (sp) 7 day rinse for weddings and funerals. ; ]  It made my hair feel thicker too.  I'm off tx now for about 10 weeks and I already see tons of new hair. You'll be okay Painter.  I just know it.