Cold Caps Users Past and Present, to Save Hair
Comments
-
I used to wear cute hats to deal with bad hair days. This was especially true towards the end when my hair was thinner and the roots were longest. They can look really cute. We can look good in the cute caps and hats because we still have hair to hang down. Thanks goodness.
0 -
@lara-Of course you should try the caps! You'll be glad you did.
Not everybody sheds the same, it's so individualized. Some don't shed at all, while others shed after finishing all thier chemo. If you start at the very beginning of this thread you'll find me. I've been gathering information to help cold cap users find the answers they are looking for in one location. At that time it was recommnded to use Johnson's Baby Shampoo. It was very drying. Frank no longer makes shampoo product recommendations. You will find much more objective information on this website than the other forum. If you'd like to see a list of products other cold cap users have tried go to the website at penguincoldcap.net
BTW I like the Natures Gate products. The conditioner didn't detangle as well as some, but it was much better than others I've tried, and it's non-toxic. It's best to gently brush or comb your hair prior to shampooing. This reduces much of the hair tangling.
I learned an interesting bit of information from a world reknowned oncologist in Beverly Hills, CA The patients whom I've helped with the caps are always asking me what I think about using Latisse. I tell them that if they do lose their eyelashes/brows it usually happens after all the chemo has been completed. The lashes/brows grow back super fast-in a matter of weeks. If they are receiving a Taxotere infusion and are also using Latisse it can exacerbate any eye problems. The doctor explained that Latisse accelerates the growth of the lashes and she believes that it could actually cause the exact opposite of what you're trying to accomplish. The way she explained it it made perfect sense.
0 -
makingway: when I asked my MO about Latisse, she gave me the same explanation. She said it basically accelerated the growth and the subsequent loss of the lashes, and also had caused many eye problems for her patients. Most of her patients who had tried Latisse had lashes come in very quickly, but then fell out again. So they had to endure having repeated loss of their lashes rather than just go through it once. So she did not recommend it and would not write a prescription. My lashes did not fall out but my brows did, but only for about a week before growing back almost overnight.
Fwiw.
Susan
0 -
I decided not to use the Latisse though I got a prescription for it. I didn't want to risk eye pigment changes. My brows and lashes stayed in fine until the last treatment of T/Cx4. They then both started to thin considerably. I started to using a brow pencil and still used mascara on the lashes I had and took it off gently with a wet washcloth at the end of the day. I would say it took about 3 weeks for them both end up their thinnest-I never lost all eyelashes or all brows at the same time. As they were shedding, new growth was starting and within a month my brows look normal again and I have all new (still growing) lashes.
For hair products, I have found Alba hair (and skin) products really nice as well as the Jason brand. I am now 3 months PFC and wash my hair a couple times a week in the shower with tepid water. I usually wear it up to look best with a clip in the back and the thiness does not show at all that way.As I lost most of mine after the first chemo (day 17) I feel the reason I lost so much (about 30%) was because my hair was probablyl more in the "thick category". I was comparing myself to people I know who have really thick hair and felt mine was more medium-for anyone considering using the caps, it may be worth talking with Geralyn or your representative and really figuring out which hair protocol to use based on their knowledge.
I can't wait to have my thick shiny hair back again! What I have is much better than bald though.
On a different note, has anyone tried Brassica Tea with SGS (a compound found in broccoli and other cruciferous plants)? I actually read about it in a cancer book but find I will have to get it online. I also read good things about Brocco Sprouts but they are not widely found either. I wonder why these products that sound so good to protect against cancer are so hard to come by. I know the main thing is to eat plenty of fruits and vegetables but I have a hard time consistantly maintaining the 5 servings every day and like the benefits or power products. I do like and easily find brocolini in the stores which is much more potent than brocolli.
0 -
Is Taxol processed through the liver like some other Chemo regimes? I am afraid to take Tylenol or other pain relievers when have A/C.
0 -
Marie3, I also heard that brocco sprouts are good for you, you can buy the supplements on amazon, I checked out my local vitamin shop but they didn't carry them.
0 -
Hi all: Don't come here very often but just popped in to catch up and see Susan is still coming on. For all you newbies, Susan is the best and has GREAT information and 'cheat' sheets to help out.
So you new girls will know there is a light at the end of the tunnel....today marks one year since I finished chemo!
)))))0 -
All you ladies are so brave, I feel like I have no energy left to deal with this. I am three weeks pfc and washed my hair today, taking a zanex first. I had a major shed and it's so discouraging. I want to roll up in a ball and hide away for the next few months. I have been loosing eyebrows and eyelashes as well and am scheduled to return to work on Monday. When does this get better......I feel so lost and down. My emotions are all over the place, finding it hard to focus on anything. Haven't taken any prescription drugs except on hair washing days..........I'm on the ledge'!!!!
0 -
leveled! I'm so sorry for how you are feeling! I haven't finished chemo yet, so I'm not on the other side and can't offer advice as to when it gets better...but just wanted to send you some hugs and positive energy! I also wanted to say that I've heard from ladies who have finished treatment that there can be "post-treatment blues" - that the transition back to life is tough b/c you finally have time to think about all you've been through and are scared about moving forward with no active treatment, etc. So, your feelings may not all be related to the caps and the hair loss you have - but I suspect all the post-treatment issues are rolled together into one big ugly mess of feelings. Be easy on yourself during this transitional time.0
-
Thanks dancetrancer, i guess I have been experiencing PTSD. I have read about it. It's been tough jumping back into life, which is not the same life, just all together different. It's been tough to sort out my feelings. I have also tried to keep this as private as possible which also leaves very few people to talk to.
This support group has been wonderful but without faces I still find it sometimes hard.
Thanks for the hugs.
Lisa0 -
@leveled-Do you know if you're low on iron? I've read of a few women who've had more shedding were low on iron. Once they got an iron infusion or started supplementing the shedding slowed down.
You've past a major hurdle-give yourself some love. The eyelashes/ brows will grow back very fast! Can you take another week off before starting work? It might allow you some time to catch your breath after all you've been through.The whole BC process is so rushed we don't have time to process it.
0 -
Leveled, Dancetrancer is right. It is like PTSD and there is a post-treatment letdown. And having actually been through this twice (once 5 years ago & went bald and now using cold caps) I can say that you do have to experience a "new normal" once on the other side of active treatment. A clinical social worker that specializes in this area once told me that many times women report that it takes as long as it takes for your hair to grow back in order to feel "normal" and for me that was pretty much true. So even though you may have shed a great deal (im so sorry- i know how traumatic that is!), perhaps you will more quickly be on your way to that new normal. I am hoping and praying for that for you! Make sure you are getting lots of rest and be kind to yourself. Sometimes when treatment is over we want the whole experience to be over (or others do) and we try to do too much too soon. Once you go back to work, try to keep realistic expectations and take it slow and easy. I am sending you postive thoughts and energy! Hang in there!!
0 -
Leveled~
I agree with the others.
Right after chemo was the hardest time for me mentally.
I was one that did take iron as I was anemic and that may have helped me with less shedding?
Please take care of yourself and know that we are here for you.
0 -
Makingway,ccb2,Ang7,
Thanks so much for all your responses, I appreciate it and it was very much needed today.
I have been taking 45mg of iron not sure if that's enough, but I have been taking it for the last three weeks along with 10000mcg of biotin and 1500 mg of silica. Drinking water, eating right and no alcohol, well I have a glass of wine in the last three weeks last Saturday at a family get together.
I have been so strong through this and I am falling apart at the seams. I feel like I have to be strong around my kids and my family and my wonderful husband, then everyone leaves for the day and I am home alone to dwell on all my issues, so I thought going back to work might help. I am the benefit carrier as well. I have been out for the last three weeks and really don't want to go back to work at all. I go back for two weeks and then I am on vacation for a week at the beach. So I thought the two weeks of work might do me good, as I only work in the office three days a week and the other two at home.
Thanks for the positive thoughts......somehow I am sure I will get through this I just thought it would be sooner...........0 -
Leveled, I think a lot of us can understand exactly what you are going through. It is hard not to have anyone to talk to who knows what you are going through, but this forum does help. When I was going through radiation right after chemo I was in a bad frame of mind and just didn't want to be going through anything else treatment wise. I got to know a couple of people who I saw almost every day while waiting for the radiation. It was so good to talk with others who were going through the same thing and could totally relate. It also made it much easier to be there every day. There was no connection like that with others during or after chemo.
I try to get a regular dose of things important to me as much as possible:time with my kids, friends, my photography, etc. which really helps me feel better and get over the bad days. Hang in there-day by day things will start to get better.
0 -
Marie3, thanks so much for the words of wisdom. I am feeling a little better tonight. I enjoy photography as well. Maybe i should be doing more of it.
0 -
I have used the Whole Foods and Cost Cutters store brand shampoo and conditioner and am happy with both. My hair doesn't tangle much so that was never an issue, although when I have a tangle, the whole thing comes out. I know it is off protocol, but I have worn my hair in a pony tail from day one -- maybe that keeps it from tangling.
I'm a week or so shy of 5 months PFC and I think the shedding is slowing. I lost NO hair during chemo so I want to stress that you should not freak out if after chemo, it starts going. I have a lovely combination of 3(?) inches of mousy brown and grey roots atop my naturally blond hair plus mousy brown and grey sideburns -- I think I'm setting a fashion trend. Towards the middle of July, I'm meant to color it back to my natural blond but I'm not sure I'm going to be quick about that unless the shedding has slowed to almost none -- my normal state.
My eyelashes fell out for the most part about 6 weeks PFC. Don't know about the brows -- I never paid that much attention until a friend commented but, never thick, they thinned considerably. I think it is interesting that when I pluck them, the brow hair has a huge root. Not sure what that means, if anything.
I didn't do Latisse during Chemo -- started about 6 weeks PFC when I saw the writing on the wall. My lashes are thicker than they have ever been, but completely straight. I dare not curl them
Leveled, that slump is very familiar to me. For a couple of weeks, about the only thing I did was lie around googling "chemo fatigue" trying to figure out what the hell was wrong with me. I'm still doing Herceptin so it isn't over, but there is something about BEING done without FEELING done that creates cognitive dissonance.
I read one website that recovery takes one to two months for every treatment, so I decided to give myself at least four months since I had four TCH treatments. I think that was about right, save the days I lose to Herceptin every three weeks.
Part of the challenge is that we look "normal" -- THANK YOU FRANK - and it is "over" and mostly those around us are done processing it, except we are just now starting. I still can't get my head around it.
0 -
Leveled: I, too, extend my sympathy and best wishes to you. I am surprised at times by how tired I feel, though I am still midway in my treatment. Today, after eight days of staying home, I just told myself to keep pushing through and forced myself to do things. To my surprise, I was able to do them, with rest stops, and ended up feeling energized. Tomorrow I hope to get out and do more. We'll see.
I have noticed ladies posting repeatedly that it is important and very healing to get up and move even when you do not feel like doing so. Thinking about those posts is what kept me putting one foot in front of the other today.
Maybe it would help you to find people you could confide in or simply talk to about what you are going through. Does your cancer center or local hospital have any Breast Cancer support groups you might join? Or a social worker or Psycologist? When I was at Memorial Sloan Kettering for surgery I was offered all of those and in fact was called at home by one of their social workers who went over everything offered - help for me, counseling/education for my family. I was surprised by what was offered.
I would also like to ask if anyone could tell me when we should be taking the iron or other suppliments to help slow shedding - during treatment or after it is finished? I'm shedding a good deal which makes me nervous, though I still have a lot of hair. On the other had, I think iron causes constipation which is not something I need any help to achieve.
0 -
Hortense: I didn't start taking iron until after the fourth infusion. I wish I had taken it earlier. My oncologist told me my hemocrit numbers were low after my second infusion. I didn't figure out that the hemocrit number and iron were related. I had also had a very heavy period during the second infusion and lost a lot of blood.
I shed the most after infusion 2 to infusion 4 and started iron 3 weeks post pcc. I stopped shedding at the 5 weeks post pcc. I took Biotin, Silica, vitamin c, e, iron and Maxi Hair vitamins everyday after chemo. When I started radiation I only took Biotin, Maxi hair vitamins and Iron. Once I finished radiation I moved on to hard core prenatal vitamins. I colored hair with the real stuff at the 4 month mark with no ill effects.
Now that I am 8 months post pcc, I realize I lost more hair than I once thought. Hair dresser finds shorts hairs every where.
The four months following chemo were the most difficult for me too. Trying to ease back in to your old life is hard. The people in this world are very ignorant about cancer! I feel that many dismiss what you have been through and others treat you like you are going to die. For me navigating through the social challenges has been the hardest. I see myself as a soccer player, mountain climber and adventure seeker and now cancer survivor. My views of me never changed. I was taken back when others treated me differently. Oh well, another hurdle to get past.
I was so impressed with Guillana Ranic and the way she shared her story. I am a young woman too and felt so much comfort with her graceful and brave story.
0 -
Leveled--I am 4 months post chemo and I still have my moments of feeling down. I was in battle since Oct 22-first surgery, then chemo, then radiation--the fight to keep the hair--so I was always preoccupied with the fight. When it was all over--I had more time to think about the cancer. I am just starting to sleep through the night. Also, friends/family see me looking better and know I am done with treatment, so they don't ask me how I am doing. They don't realize I am still suffering inside.
In terms of shedding--I stopped 5 weeks post chemo and never shed again. Today, I am getting my second vegetable dye. Geralyn said I can play around with highlights at the end of the month. I am taking regular showers and washing my hair normally in the shower. That actually helped my mood-it feels wonderful to wash my hair normally. You will soon be at this point and it feels great. Also, the hair I lost is rapidlyl coming back.
So, yes I do still have my moments where I just cry--but overall It gets easier every day.
0 -
Soccergirl, were you told to stop the Silica with radiation. I am almost done with TCH (#6 next week) and I want to start taking Silica. I don't know when I'll start radiation but I was hoping to continue on with it. Thanks.
0 -
It has been wonderful to hear everyone's thoughts on healing, thanks so much. I guess it's like anything else, one day at a time and time heals all wounds. I hope to be back on track soon. Thanks again.
Lisa0 -
Starting cold caps on Wed June 13! Wish me luck! It seems like it will be a good distraction during chemo. Did any of you wear hats during PCC? Or use anything to cover your hair when it is looking bad?
0 -
I have started using a small scarf sometimes when I go out as I can not wash or dry my hair the way I used to and as a result it does not look its best. It often looks either dirty or messy wavy, which is not how I wear my usually straight hair. My hair needs to be blown dry to shine and look nice and I have not been doing that, although I have dried it a bit on cool air twice when I was feeling cold with wet hair.
I am grateful to have my hair still, two treatments into the four I need, even though it is shedding a lot.
0 -
Mamacath, Cold caps certainly are a great distraction during chemo. Sebm9 will email you great tips and instructions if you contact her.0
-
mamacath and any new PCC users who are reading: If you send me your email (via PM, preferably), I can email you my extensive writeup about my experience with PCCs -- how to do them, the hair care protocol, and other tips for getting through chemo and battling cancer and keeping your spirit. (The writeup is too long to fit in a PM, that's why I request an email address.)
Cheers,
Susan
0 -
Mamacath- I did wear a hat on occasion to cover the roots and nasty hair look. I wore a cute black hat that was kind of like a baseball hat but much cuter. I just pulled my long hair back in a low pony tail and tucked the end through so it was pulled up and then put the hat on. Worked well for me. I know you have to avoid heat on your head so I only wore it when I went out...not around the house at all. Good for you doing the caps! We will be here to support you and talk you through it! Good luck!
0 -
@makingway, yes, I'm sure I had Taxotere with AC&T. It is actually very common.
@dancetrancer, thanks for posting the photo. Looks very good! You may even inspire me to post a picture of my hair :-)
Hortense & Leveled, totally understand the frustration you are experiencing. Bad hair days were very hard for me as well. Some days I felt embarrassed about my hair. It was discouraging. But I realized that I was often harder on myself and that others never thought my hair looked as bad. It also helped that I wasn't working so I didn't have to look good everyday. I tended to wear my hair down more often because pulling it into a ponytail can put pressure on the roots. But when I just couldn't stand it, I did put it in a ponytail. For encouragement, I am 7 weeks PFC and my hair looks better ever day. It feels good to see it getting stronger.
As far as the shedding, luckily, I do not have any post chemo shedding. However, I did shed a lot during chemo. Between my 2nd-4th chemo, I shed the most. At worst, I probably could fill up a ziploc sandwich bag with the hair I shed during a hair wash during that period. And when I combed my hair, strands equivalent to a fist full of hair would come out every time. But eventually it stabilized when I was on Taxotere. I would also have loose strands hanging down from the ends of my hair that would drop everywhere, but that was nothing compared to when I was on AC which is harsh on the hair. All that to say, I never had a balled spot and still retained 70% of my hair.
So please hang in there. You will have good days and bad days. But you will be so happy when chemo is over and you see how all of the ladies that did not do cold caps are obsessing about hair regrowth. Your starting point will be way better than starting from scratch.
0 -
leveled: I did take Silica during radiation and I wore light weight hats.
0 -
Hola on this beautiful warm, sunny day. I was perusing through a stackful of catalogs last night, and noticed an item in the Brookstone catalog which might be of interest to folks in warm-weather climates. It's a baseball-type hat, but you run it under water, wring it out, and then wear it. It has an insert which uses the water to keep the hat and head cool, by about 20 degrees. I didn't get the catalog number, but can look it up if anybody is interested.
Cheers,
Susan
0
