Well, the hair is going...

[txrepub4God]

Hello to the best Weggies on Earth! I pray you're all coping as well as can be expected (who the heck knows how "well" that actually is! :flapper:). I've finally come to the decision this weekend, that it's time for me to chop my hair off. Sniff sniff. After 3 months on CTX, I've pulled out a chihuhua-sized pile of hair everyday, and the excrutiating pain on/in my scalp is still there. I was blessed by my dad, rest his soul, to have a TON of hair, so at least I had 3 months before I have had to cut it. There is just too much coming out, & the weight of my hair is killing my scalp.

I did find a super-cute, inexpensive wig that I ordered tonight, so I can still feel woman-ish when I feel like it! I used to be a hairstylist in my 20s & cut my hair off on a whim all the time. I love short hairstyles, but this will be extra short & my husband likes my long hair (although he understands why I'm cutting it off).

I'm getting it done Tuesday night. I told my stylist I might cry - she said she might, too! :)

[Pete]

Hi Teri,

Sorry about your hair and hoping it grows back after ctx.

Do you take folic acid? My doc prescribed 1 mg/day when I was on methotrexate. I didn't experience any significant hair loss when I was on it.

I was on 100-150 mg/day of oral ctx for 16 months. My hair thinned a little (I attributed it to aging - late 60s) and it came back in a little coarser after I got off ctx.

[txrepub4God]

Hi Teri,

Do you take folic acid?


No, I never have & it wasn't mentioned to me by my rheumy, but I can definitely ask her about it! Thanks for the idea!

[whatthewhat]

Hi Teri - we went thru this with my teenaged daughter. Thinned from Mtx, so she went short (mid-back to ear length) and then huge patchiness from Ctx so she shaved it. She swears by Biotin, and her doctors don't care. I started taking Biotin too just 'cuz and it has made a noticeable difference to me for sure. Shaving it was such a huge relief to her as she was embarrassed by the drain getting clogged and annoyed by the amount of hair on her pillowcase and clothing. She was gonna do a Henna pattern on her bald head but we both chickened out :-) She was given a very nice wig but only wore it a few times; mostly she just rocked a slouchy beanie when she went out. Best of wishes to you. Hair is such a personal thing, maybe especially to you gals in Texas :-D

[gilders]

My hair came back quite quickly after CTX was stopped.
I had brown hair with a slight wave to it. When it came back it has been virtually black and much curlier!

[txrepub4God]

Thank you so much for sharing your daughter's story with me. It's funny how different it feels to see a super-cute short haircut and decide on a whim to go get all your long hair cut off, versus HAVING to get your head buzzed because it's falling out because of chemo. I'm okay with having short hair, I've had pretty much every length, shape, and color you could have......I guess it's just weird that it's a disease treatment that is causing me to do it this time. I haven't even felt like fixing my long hair in the last few months - it has just been pulled back in a ponytail and under a baseball cap, so I guess the buzz cut will be much easier!

I've heard that after a couple of days with the henna tattoos, the dye begins to really smell bad, so it's probably a good thing ya'll didn't get it done. :) I'll be getting some slouchy beanies myself, plus a couple of long wigs to play around with on the days I feel like it. There are so many wig options these days, my husband will never know who he is coming home to that day.


Hi Teri - we went thru this with my teenaged daughter. Thinned from Mtx, so she went short (mid-back to ear length) and then huge patchiness from Ctx so she shaved it. She swears by Biotin, and her doctors don't care. I started taking Biotin too just 'cuz and it has made a noticeable difference to me for sure. Shaving it was such a huge relief to her as she was embarrassed by the drain getting clogged and annoyed by the amount of hair on her pillowcase and clothing. She was gonna do a Henna pattern on her bald head but we both chickened out :-) She was given a very nice wig but only wore it a few times; mostly she just rocked a slouchy beanie when she went out. Best of wishes to you. Hair is such a personal thing, maybe especially to you gals in Texas :-D

[MikeG-2012]

Thank you so much for sharing your daughter's story with me. It's funny how different it feels to see a super-cute short haircut and decide on a whim to go get all your long hair cut off, versus HAVING to get your head buzzed because it's falling out because of chemo. I'm okay with having short hair, I've had pretty much every length, shape, and color you could have......I guess it's just weird that it's a disease treatment that is causing me to do it this time. I haven't even felt like fixing my long hair in the last few months - it has just been pulled back in a ponytail and under a baseball cap, so I guess the buzz cut will be much easier!

I would hold off until you know that it will fall out. If you're doing pill form Cytoxin, you may not have bunches falling out, it may just get thinner. Mine just thinned out quite a bit, but never really looked unnatural or patchy.


There are so many wig options these days, my husband will never know who he is coming home to that day.

Heck, forget the wigs! Just being on any amount of pred changed me from day to day. My wife never knew who I was going to be when she got home from work, Grumpy, Sleepy, Dopey, etc. (-8

[txrepub4God]

Mike, unfortunately, I have already lost about 60% of my hair as far as thinning goes. That's not really the issue, as I had a TON of hair. My hair has never been this thin in my life. :) My problem is, I have had clumps already fall out, but the huge issue with me is the excrutiating scalp pain - my long, thick hair, even the little that I have left, is pulling on my scalp. I have spots on my scalp that hurt so bad just to move one hair that I've been in tears with this pain - and I'm a fairly strong, pain-tolerant type of chick. The wind blew my hair a couple of days ago and I screeched. So cutting it off SHOULD be at least a huge pain relief, if nothing else. :)


I would hold off until you know that it will fall out. If you're doing pill form Cytoxin, you may not have bunches falling out, it may just get thinner. Mine just thinned out
quite a bit, but never really looked unnatural or patchy.

[annekat]

I'm so sorry you are having such pain with the hair loss! That didn't happen to me, though I was on CTX and definitely lost some. Another case of everyone's WG experience being a little different! I hope when you are off the med the pain will stop and the hair will grow back in as full as it was before. I'm at the age where it was thinning anyway, so it's a little harder to tell, but the loss has stopped and I think it's growing back in, though it seems a little slow, in my case.

[MikeG-2012]

Mike, unfortunately, I have already lost about 60% of my hair as far as thinning goes. That's not really the issue, as I had a TON of hair. My hair has never been this thin in my life. :) My problem is, I have had clumps already fall out, but the huge issue with me is the excrutiating scalp pain - my long, thick hair, even the little that I have left, is pulling on my scalp. I have spots on my scalp that hurt so bad just to move one hair that I've been in tears with this pain - and I'm a fairly strong, pain-tolerant type of chick. The wind blew my hair a couple of days ago and I screeched. So cutting it off SHOULD be at least a huge pain relief, if nothing else. :)

If I had those kinds of issues, I would have probably done the same thing.

Let it go, Let it go... (you're welcome for having me put that one in your heads folks!) (-8

[whatthewhat]

Our daughter says that for her her head would get cold at night, so she thinks beanies you can sleep in are important. Also, her little brother gave her a beanie (not slouchy) that is soft on the outside but lined with the softest fake-sheep type thing on the inside; he had bought it at Kohls. The scalp pain sounds like a Prednisone side effect to me, but blaming things on Pred is my fall-back position ;-)

[Trena]

HI Teri!

i can totally relate with you on the hair loss issue. I'm actually going in this Thursday to get a buzz cut for the first time...ditto on the sniff sniff feeling...part of our emotional journey!!! My kids (8 and 11) have been wonderful throughout this journey and my hair loss hasn't been a issue (or embarrassment) for them at all. My 8 year old son actually thinks that it's pretty cool that I'm getting a buzz cut...just like he has gotten in the past. Yet this is emotional because this is another thing that is out of our hands and not something that we can control. It's one thing if we cut our hair extremely short by choice, yet it's tough when the medication makes the choice for us.

I did take the pill form for my chemotherapy and unfortunately I lost about 90% of my hair. I tired to keep it as long as I could, yet it continued to fall out for months after chemotherapy (which my doctor said is normal). I have new hair growth starting (about 1/2 inch), so I will just ask her to use my new hair growth as a fresh start and I won't have to shave it all off. I have always had longer hair, yet I am honestly thankful to just be here to see my kids grow up and I have to remember that my hair will grow back. Keeping my eyes set on the good thing...things to be thankful for is what helps keep my spirits up and it helps me to stay focused on what's important.

While I've been loosing my hair I have enjoyed having my "hat wig"! It's really awesome and I love it....its just a baseball cap with long brown hair attached to it. These are available in different hair colors and different hair lengths. I enjoy mine because I can just toss it on as I'm running out of the door which is much easier then putting on a wig. I also talked to my health insurance and they will cover a wig at 100% because of the chemo. My doctor just completed the paperwork and forwarded it to my insurance, so I think that's the last hoop that I needed to jump through. I will also enjoy being able to pick out a wig for the times when I want that normal look with "hair". I'm comfortable around the house without wearing anything on my head, yet for me I have noticed that I feel more like my "old self" (before getting sick) when I do wear my hat wig. It's not that I can ignore being sick, yet there is something about being able to look in the mirror and seeing a piece of my old self.

Good of luck to you with this new journey!

[txrepub4God]

Thank you for sharing your story, Trena. I'm getting more used to seeing my short hair in the mirror, but I still don't like it. I can't even really style it, because as soon as I put my hands in my hair to apply product or fix it, huge clumps come out in my hands. I doubt I will have hardly any hair in the next month. I know it's just hair & it'll grow back after I'm off the meds, I just miss feeling somewhat attractive. My weight is higher than I like because of the prednisone & the thyroid issue, and now the hair. Guess I'm just having a down day about all this. My rheumy started decreasing my prednisone & I'm feeling ALOT worse. Was hoping to get off the steroids, but I don't think it's going to happen right now.

Good luck with the head shaving! I'm probably right behind you!

[Pete]

Hi Teri,

We all have a love-hate relationship with pred. While you have active disease, a higher dose will keep you feeling better. When in remission, you may need a low dose to maintain it. I've been holding at 5 mg/day for about six months. I can't seem to get below 4 without roaming joint pain returning.

It will take some effort to get the pred pounds off, but it can be done. Healthy eating, portion control, and exercise will be key. Start slow and easy with exercise and increase very gradually.

I feel bad about your hair loss. Hope you can get off the nasty stuff soon so it grows back.

Keep fighting!!

[Trena]

Hi there! I'm so sorry to hear that your hair is still falling out. I've noticed that I have such a personal attachment to my hair and this has been the hardest thing to lose. Gaining weight is also difficult like you mentioned with the medication and the combination of the two does make it VERY difficult with feeling comfortable in our own skin and feeling somewhat attractive. Having these physical changes takes quit a lot to get use to!

Ive also been decreasing my prednisone and like you...I am feeling a LOT worst! I have my next appointment on Thursday and I hope to have some good news for an adjustment in medication.

The ONE light/inspiration is that I am forcing myself to keep remembering to use this as a example for my kids (especially my daughter). My kids see that we are more than what my be on the outside with our physical appearance. Sometimes at times like this there are things that are out of control, yet it doesn't change who we are as a person. My kids love me exactly the same and we hold our head high together when we are out in public. My kids also look at me exactly the same and we tell each other "I love you" with the same smile and twinkle in our eyes. When I need inspiration I just think of them!

This too (with our physical appearance) will pass and things WILL get better! We may not look in the mirror and see our old self, YET I'm trying to get familiar with my new reflection in the mirror and I'm trying to like and accept the new me.