Hair Hair Hair - Another question

DiZZyMom

Friar Tuck  is exactly what my husband said when we were looking at the catalogs. He said "you just better hope your hat doesn't come off!" I thought there's no way I'd get one of those, but now I'm thinking I might.

LeeA

I can't take credit for Friar Tuck...someone mentioned it on the January 2013 chemo Facebook group (it's kind of an offshoot from the chemo thread).  Lots of banter!  

Victoria, I have a little spa towel that I've used on my hair for years (I think it's about 15 years old!).  Anyway, I still use it when I get out of the shower.

I'm wondering about that type of oil that starts with an A that I've seen mentioned - perhaps even mentioned on this thread.  I suppose using anything like that is kind of a waste at this point.  

Oh, one other thing - re: my husband (rolling eyes here) - on the occasions when I do de-cap he'll come up to me and kiss my 99.9% bald head!  I feel like the Gerber baby!  I guess that's his way of saying "hey, grandpa, you wanna get lucky?" (because I sure do feel the opposite of sexy with my current state of the hair). 

DiZZyMom

Yeah, when he saw me post shave, he said "Sinead O'conner in da house". 

Victoria38

LeeA, yes, I use a spa towel too!!!   The opposite of sexy is sleeping with a bandaged arm or my big nighttime lymphedema garment. Oy.

DiZZyMom, my halo has velcro on it.  So even though I never attached the second half of the velcro to my cap, just having the one part does help to hold it.  I've only worn it with turban or Abbey caps, I never worried.  I guess with regular hats or ball caps it could happen!  Eek!

LeeA

Victoria, I didn't know there were nighttime lymphedema garments.  I have one to wear when I exercise (walk) but I keep forgetting to put it on (most of the time).  Did you have lymphedema massage therapy?  I think I recall seeing you mention manual lymph drainage. 

Victoria38

Yes, I had five weeks of 4-5 therapy sessions a week and 24/7 bandaging.  Now I must wear a sleeve and glove every day.  At night bandaging works best, but there are these big padded nighttime garments.  Think giant pot holder!   My lymphedema is mild to moderate, mostly moderate right now.  I struggle with keeping it under control every day.  No fun, but it sure beats the alternative!!!

DiZZyMom

When did you seek treatment for the lymphedema? My left wrist/hand are slightly swollen. Sometimes more than slightly, but mostly just a little. It was barely perceptible when my MO looked at it and she said sometimes it just resolves and sometimes it gets worse. If mine gets worse, she'll refer me to a therapist. But now, it's like I'm in limbo. I'm afraid to do too much with that arm. I'm not doing any resistance exercising or my pilates class that I loved to do before surgery. I think I'm just going to ask for the referral and see the therapist just so I really know my limitations instead of just winging it. And I know this is the hair thread, sorry!

Victoria38

I hate to say it, but once you have it, you have it.  So many oncologists are so in the dark about it, as was mine.  So I went longer before getting help than I should have.  I would guess about 6 weeks before I got treatment.  I probably had some symptoms even before that.  If your insurance covers it, you should get referred as soon as possible.  The earlier it is caught the better.  There is a lot to read under the Lymphedema forum here. Good luck!

Terryberry23

I always washed my scalp as it keeps the pores open and it still gets oily.

Sandra60

Lee - just had to compliment u on your cap and halo hair - u look really cute !!

DiZZyMom

Thanks, Victoria. I have my second round today and will ask for the referral when I'm there.

Have a good day everybody!

lago

DiZZyMom and Victoria if you are a stage 0 there is a chance you can reverse lymphedemia. Also if the area hasn't thickened it might be possible even in a stage 1 to get rid of the fluid, at least that was my understand from what my LE MD (president and one of the founders of LANA). I know I'm a stage one and I seem to have some thickness that won't go away so I know it will always be there. I don't have to wear a glove anymore because my fingers don't swell.

DiZZyMom I 2nd what Victoria says. It's best to treat LE earlier than later. Go get evaluated. Here's a picture just before I got treated. Most people can't see the difference in my arms: linky  My onc diagnosed me with this picture. 6 weeks isn't a long time to wait unless it is really getting bad.

DiZZyMom

Thanks Lago. that's about how mine look now. I have an appointment with a therapist on Monday.

cgesq

Love the halo hair and caps.  I have used a halo/cap combo throughout chemo.  I thought it looked more like me than a conventional wig.  It is also much cooler than regular wigs.

On the shampoo question, I didn't use shampoo during chemo.  I sort of felt that there wasn't hair to clean, so why use shampoo.  I use dove soap on my body, and used it on my scalp during chemo.  I found my scalp was less itchy---maybe the moisturizers in dove lessened the dry skin.  

Lastly, for those who take or took biotin after chemo, what is the best dosage?  Is there a recommended brand?

Thanks,

lago

5mg of biotin. Actually took it through chemo because I've been taking for years. My dermatologist confirmed the amount. Not sure if brand matters.

Marianne52

I bought CVS brand. 5000mcg. Marianne

islandmom

I do not think the brand matters.  I am almost 2 years PFC and I did not take Biotin until the last 6 months and I can tell you that the growth rate has increased.  It is easy for me to measure because I color my hair so I have to do it more often.  

The reason I started to take Biotin was because I noticed my hair was falling out around that time, 1.5 years PFC.  I would notice a lot of hair in the shower.  Anyway, the hair is no longer falling I do not know for sure if it is the Biotin or  just a hair cycle but I will take Biotin forever.

WaveWhisperer

Like Marianne, I take the CVS brand, 5000 mcg, which is 5 mg...have been taking it since final chemo. And, like cgesq, I used Moisturizing Dove body wash for my body and scalp during chemo. 

Victoria38

Ok ladies, for those who have been finished for awhile - how many months before you went "topless" in public?  When I am out for my walk, sometimes I get very hot and take off my cap. I don't mean that, I mean really out.  Grocery shopping or church or with friends, or?

ChemicalWorld

@Victoria, I had my last treatment at the end of March and by the end of August I was ready to go bare in public.  But I had a weird bald spot in the centre of my forehead that took a while to grow in for some reason.  I had my first "trim" (micro-trim?) on my diagnosis day at the end of Sept. 

dltnhm

Victoria - topless out the gate.

I researched and decided against cold caps. Then I got a wig. Had pictures of myself wearing the wig and not on the same day when I was fitted for it. No one could tell the difference.



But when it came down to it - I looked in the mirror and the person stating back was me - with or without hair :-)



So .... No wig wearing or scarves. And minimal cap wearing ... protecting my scalp when I ran in the extreme cold, a couple of drafty places, to my first Bulls' game - a Bulls' cap and to my first Cubs' game - a Cubs' cap. All about being a fan! A few other times just to rock the cap look ;-)



Whenever you choose - realize you'll do just fine!!



Hugs.

islandmom

Victoria, I put my wig away at 14 weeks PFC.   My scalp had coverage but the hair was very very short, so I wore a cap frequently.  At 18 weeks PFC I colored my hair to cover the gray and did not feel the need to wear a cap anymore.  

Speedy4

Dtlnhm~I'm deciding on whether or not to do the cold caps. Do you mind me asking why you decided not to? Thanks, Deirdre

lago

went topless at 13 weeks. (Note Herceptin slows hair growth. My hair typically grows fast but a little slower on Herceptin. Noticed this once I was off Herceptin).

DivineMrsM

Victoria, it was about 8 weeks before I went out in public topless.  It was easier start out by going places where I felt anonymous.  I doctor in Pittsburgh, about an hour from home, so I went there to a few small shops and the hospital, just to 'try it out'.  It helped me learn to be less self conscious when I was around people I know.  In my small town, I run into people who know me every time I go out around here.

The main reason I started going topless is we were going to Lake Erie for the weekend with family.  I wasn't going to sit in the hot sun wearing a wig.  I casually mentioned ahead of time to a few family members that they would see me without the wig.  I didn't want it to shock them.  Then I was anonymous to mostly everyone else on the beach, no one cared about my hair or lack of it, and I never wore the wig again.

AEM47

Finished in April and was topless some time late June...so somewhere around 8-10 weeks -I think the weather helped my decision!

EmmaC

I finished late July and went topless by halloween. It was hard but being covered was annoying!!!!!! I was on herceptin.

GuyGirl

My last Chemo was  Nov 8, 2010 and I went topless February 2011.  I always wore a wig to work and when I went to work without the wig, the one's who did not know I had been sick thought I had gotten a haircut.  I had my hair colored and shaped up before I went topless.  I was told I was sporting the Mia Farrow look.  Go for it.

Eileenohio

wow ladies,  I am so jealous. My final chemo was May 31,2012 and my final herceptin was Feb 6,2013 and I am still no where near going without my wig. My hair is growing but it is sooo thin and white that you can see my pink scalp. Since I am now done with herceptin maybe my hair will start to fill in. I do take 5000 mgc of Biotin twice a day and I have been using Garlic Shampoo for about a month. I think maybe my age has something to do with my thin hair,but it was not this thin before. My wig is not awful,but I cannot wait to give it up for real hair...

Lauren423

KristinFro - I saw your posts ages ago on another board (I think?) and I made the halo that weekend.  It was a good project and it came out beautifully, although I used human hair and found it to be much more difficult to style and maintain than synthetic hair.  Thanks for your post, though - great idea.

Victoria - I went topless at 8 weeks.  I'll never forget - it was the weekend after Thanksgiving and I wanted to go out on Sat or Sun to do some shopping, and I thought, well, might as well jump in the deep end!  I didn't ease into it at all.  I did feel awkward, but I got the nicest compliment from a gentleman I bought some hand scrub and lotion from at one of those kiosks...I want to say he was from the Middle East...he told me he had no idea and that I looked very European.  That many women wear their hair short in Europe.  Now, I was very happy to get the compliment, but I said back to him, "But I don't live in Europe!!"  I went for my first trim (which, BTW, made a WORLD of difference) in January, so around 3 months PFC.  It looked SO much better, and not a bit shorter, than before.  I am planning my next trim in a couple of weeks, which will be about 22-23 weeks PFC.

Here I am last month, about 3 months PFC: http://i952.photobucket.com/albums/ae10/l_jaeger/BC Hair/ScreenShot2013-02-26at34305PM_zpsd7897b69.png

Sorry for the link...my image code didn't work when I tried to make the pic show up in the message.