Cold Caps Users Past and Present, to Save Hair

ughhh

Hi new friends,

I am new to the whole discussion board thing... But so thankful to hear from girls that have gone through so much.  I am one of the types who would not even consider chemo if I have to lose my hair.  You can call it pride, you can call it vanity, I call it privacy and identity.  I hate everyone knowing my struggles... IF I choose chemo I have two sister's to help - yet I feel ovewhelmed by the info - shampoo - iron - fingernail stuff?  Latisse?  other supplements.... I want this whole thing to just go away... But if I do chemo, I want to do it best - Is there a place for overall best case scenarios for optimoum outcome?  It seems so overwhelming!  219 pages.... Is there one place to get important factors at once? Even ordering the PCC seems like I can hardly handle it.  Thermomters, coolers, gloves...UgHHH.... what does FCC mean?

makingway

Hi All- I'd like to share something that most of you probably already know, but just in case you don't...The cold caps work because the cold constricts the blood vessels or capillaries, which in turn prevent the chemo from damaging the hair follicles. Sucking on ice chips during the Taxotere/Taxol infusion can prevent mouth sores and the metallic taste which some women report of after having chemo. While keeping your fingers/toes on ice during the Taxotere/Taxol infusion can prevent nail loss and discoloration. Rash can be a side effect of Taxotere or Taxol chemotherapy. Corect me if I'm wrong, but I belive it to be a 13% possibilty. I have helped several women in the last few months who had developed rashes. Two of the women developed shingles. Generally they treat this by prescribing more steroids a.k.a. Benadryl. In the case of the 2 women who developed shingles they were prescribed Valtrex. I hope this helps someone. No one should have to suffer with this... I spoke with an oncology nurse who shared with me an interesting theory she had. She said that months would go be without any incidence of patients with rashes. Then suddenly 3 or 4 patients would develop a rash. She attributed it to the agent that is mixed with the Taxotere or Taxol...It sounds logical. Cetaphil is a gentle soap that I've heard recommended. One of the women I helped used a detoxifying charocal soap. She said it was wonderful! I don't recall the brand name. I look for it the next time I'm at the health store.

hbb

Makingway, thx for the stats on the rash,I was beginning to feline theed only one! Today it seems a tiny bit better but my face its still sooooo inflamed. Next Tuesday is tx2 and I'm more scared of repeat rash than anything else!

Ugh,I know how you feel. The cold caps process is very overwhelming however if it works then I'll do whatever it takes! I'm only 13 days post tx1 sooooo I don't really have any cold caps tips of my own to give. What chemo TX have you been given?

hbb

Geez, auto text...*feel like

mdg

I had a horrible rash from TC. It started after my 3rd chemo and my med onc acted like she had never seen a patient get a rash from chemo. It was horrible and mine lasted three months. My skin was so inflammed and it was uncomfortable. I used Sarna cream (it is OTC and I got it at CVS) to sooth it.



Ugggg: I have some tips on my blog for cold caps. Post any questions you have here and we will answer them. The thread is very long and getting longer all the time. It is hard to navigate. We are happy to help. Feel free to PM me too if you like.

dancetrancer

uggh, it is definitely overwhelming to get up to speed on the cold caps process.  sebm9  has a very nice, helpful write up she will email you if you PM her.  It was very helpful to me.  I'm planning on writing my own up, too, but haven't gotten there yet!  This thread is too long to read.  Just read the write up and what is on the PCC site, then post questions here, and we'll guide you through the process!  

Laura5133388

ughh, No one here would call it pride or vanity. We understand exactly why keeping our hair is so important. Still seems like a miracle that I actually was able to.

 Some time ago, several of us posted our best advice. If I can find it, I will let you know. Also, there is a topic "Cold Cap Usage Tips" on this forum.

Do you know which drug regime you would be given? I was given a choice of either AC-TH or TCH. I chose TCH because it has less chance for heart problems. Once I found out about cold caps, I was glad I was doing TCH, because the caps seem to work better on that regimen. 

I understand how overwhelmed you feel right now. I called and emailed several past users when I was first getting started and they helped me so much. It gets better. We are all here to help you.

.

dancetrancer

Hi all - just wanted to share a little blurb at the end of an email from Geralyn:

A note on hair shedding

Hair shedding is normal; Cold Cap Therapy works by protecting the young to
medium hair follicle bulbs against the chemotherapeutic drugs . The
chemotherapeutic drugs accelerate old hair follicles to shed early, thus
hair shedding (plus natural hair shedding occurs). Please also remember
everybody's metabolism is different, so hair shedding can happen at
different times.

hbb

Mdg, was it on your face? the rest of my body seems to have gone away but my face is horribly irritated red and uncomfortable. not to mention it's also covered in pus, disgusting.

I'm still wondering what all of you did in the summertime with the caps. just being outside makes me paranoid that my head will get hot and my hair will fall out. I have two toddlers so it's unrealistic to stay out of the sun all of the time.

hbb

Two more questions...what temperature do you all use your caps at and do any of you do anything special for sleeping besides the satin case? I'm half awake all night thinking that just my movement will pull my hair out.

mdg

The rash was not on my face.  I had it on my chest, arms, torso, and thighs.  I hope your rash goes away soon....I know how horrible it is!!!

dancetrancer

My temp is -30 C.  I sleep in a satin cap on a satin pillowcase - works great!

sebm9

ughh: if you send me your email address, I'll send you my writeup on PCCs -- it includes  many other tips and recommendations for chemo, and getting  a handle on it all.

Susan 

Laura5133388

hbb, Frank makes temperature recommendations based on your hair type. Mine is med. thick, so my temp. was -33. I didn't do anything special at night, besides the satin pillowcase. Gerilyn (from PCC) told me she wore a cap out of the freezer when she was outside for extended periods.

I know how scary it is right now, but after you have had a few treatments and still have your hair, you will start to feel a lot more confidant. It really helps to talk to others who have been through it, we are all here to help you.

cwsterling

Do the elasto-gels work as well as the PCC? I start chemo 7/18/12-4ACX2weeks, taxol x12 weekly- and would love to keep my long hair. Will I need helpers to change the caps? I have access to a freezer at chemo.

cwsterling

So, after reading sebm9 posts, looks like PCC are way to go. Did anyone use a freezer at chemo then cooler with dry ice for 4 hours later at home? I can not imagine staying at chemo that long after or anyone wanting to help that long on one day.

bunbunsmom

CW....I finished ACT 10 weeks ago and still have my hair. It has thinned quite a bit, mostly post-chemo, but I never needed a wig. I do have to wear it up in a clip because it is too thin to look good when it is down. I will be using natural dye next week to color it and it is filling in quickly with new growth. I have about 2 inches of new growth now. ACT is very aggressive and promises 100% hair loss without the caps. I had 2 coolers with dry ice and continued it at home for 4 hours after. I spent about 10 hours in caps on chemo days. It goes much faster than you think and you will be so happy you made those sacrifices to keep your hair. No one would ever know what I was going through if I didn't tell them. I had wonderful support and basically split the day in to 2 shifts so not one person was overwhelmed. I always had at least 2 helpers and sometimes more at any one time. During my chemo, my mom and I began to help another girl we had never met with her caps because someone had done it for us and it meant so much. I was very depressed about 3 weeks ago when I thought the shedding would never end, but it has and I am in a good place now. Good luck. It's worth it!

hbb

Laura thanks for the support. And bunbun it's good to hear another successful case! The girls are right, the day really does go sooooo quick. I know once I make it past next week I will be more confident. It's just a scary three weeks of waiting!!

Hortense

I am three days post my third T/C treatment and have most of my long, straight blonde hair. Today, as I haven't been able to wash it for the past six days - as per protocol, it looks awful, but when I do wash it, it looks quite normal. I'm looking forward to washing it tomorrow.

At chemo I met a woman who just finished her TCH treatments three weeks ago using cold caps and she had the most amazing head of long, thick wavy hair. I was awestruck. She claimed it had thinned a lot, but looking at her, I would never have been able to guess she'd lost a single hair. 

dancetrancer

Awesome Hortense, just awesome! 

cwsterling

bunbun thanks for the info. Guess I am feeling a little overwhelmed by it all, focused on surgery and now need to gear up for chemo. I will try and assemble a team to help with the caps.

hbb

How did you all deal with the itchy head that accompanies barely washing it?

dancetrancer

Itchy head only happened to me when I used too much shampoo and/or didn't get my scalp clean enough during my washing b/c I was afraid to gently massage it.  

I now use a small amount of shampoo mixed with a bunch of water in a small bowl.

When I had the itchy/flakey scalp, I added just a few drops of vinegar to my shampoo - this eased the symptoms.  

ckk

Hi Ladies,

I'm 4 months PFC (T/C x 4), and my hair was looking really dry and frizzy. I had a coupon from Origins, and picked up the Rich Rewards Intensive Moisture Treatment. I washed my hair, combed the treatment in, left it in for 30 minutes, and then rinsed out. My hair is now soft and shiny again! I'm still washing the hair only 2x/week, so I'll probably use it again in a couple of weeks. 

For those of you just starting out, there is a thread called "Cold Cap Usage Tips", which will get you on your way. Hang in there! Regardless of shedding, you will end up with hair that will fill in nicely. I had most of my shedding after the first tx, then not much after. The hair that shed is filling in and now my hair looks thick at the roots again. I also used Latisse daily after my last tx, and stopped when I saw lots of eyelash growth. My lashes are now long and thick.

Laura5133388

cwsterling,  My facility accepted a donated biomed freezer from www.Rapunzelproject.org  so we were there for 4 hours after as well. My helpers were my husband, daughter, sister, and best friend, sometimes all at the same time.  I figured they could do shifts too, but they rarely did. They told me they were just so glad there was a way they could help me. I know you can't call chemo fun, but my little group and I sort of made it fun. You are so busy with cap changes, the time goes by quickly.

mdg

cwsterling:  I also used freezers at my chemo center and spent the whole day there.  It went by pretty fast since you change the caps every 30 minutes.  My husband and helpers did not mind being there all day at all.  My husband came with me every time and I had a different helper each time join us.  I actually had quite a few friends volunteer to come with us and help....too many!  I had to turn a few down.  Please feel free to ask questions to any of us...we are happy to help!!!  Good luck!

hbb

dance, lol, you caught be, no scalp massage during that last shampoo at all! I guess I need to be less chicken to ward of the itch, or rinse more, or both!!!!!! I know it's the paranoia. T-6 days till 21. 8-0

cwsterling

Laura5and mdg,

Thanks for the encouraging words. We live a thousand of miles from any family-I know my mom and sister would do it in a heartbeat but I will have to find others to reach out to.

Laura5133388

cwsterling, I feel for you being so far from family. Many cc users only had their husbands each time and husbands do a great job, so don't let it worry you if you can't line anyone up. I don't know where you are located, but if you live near anyone on this board I'm sure they would be willing to be a helper on cap days. I know Makingway has helped many women with them.

dancetrancer

cwsterling, family is thousands of miles away from us, too.  Just me and hubby.  I had volunteers (friends), but once DH and I did it the first time, we decided we wanted it to just be us.  He did such a good job, I didn't feel I could trust anyone else (paranoia!).  And he really enjoyed being able to do something concrete to help me.  So it's ok if it's just you and hubby.  

The other possibility - contact your local American Cancer Society and/or Race for the Cure branch - I bet for sure you could find some volunteers willing to come help!  

And as Laura said, yep, I'd be willing to help someone who lived near me.