Cold Caps Users Past and Present, to Save Hair
Comments
-
Murphy, the elastogels were basically a one man job. I made special cold bags for my hands and feet too so that is why we took a second helper, plus it was more fun! They offered us a private room but those had beds not chairs and I wanted the picture window view!
I know ACT has been hard on the hair of several of the ladies here. I only did the Cytoxan/ Taxotere. Bottom line I think any of the drugs are tough on hair and results are individual.
I am working on a blog as we type but it will take me ions to make it look as nip ice as Maria's, if it ever does! Looking forward to your email !
Lynne0 -
Day 18 after first chemo and my scalp is itchy as can be and quite tingly. I'm having some shedding - probably 4-5x more than what would be typical in a regular day. Otherwise, things are hanging on. I went to a party last night and everyone was shocked to see that I still had a full head of long hair. I think they were expecting a bald person. I realized that if not for the cold caps, I probably would be bald or close to it by now. I've got my second chemo next week and I'm guessing the shedding will speed up after that treatment. I've got a good amount of hair so I'm not terribly worried but I am keeping and collecting the fallen hair in a plastic baggie just to get a sense of how much I'm losing. But I would say so far, so good. I'm really looking forward to seeing the medical staff next week and showing that the caps are working. Maybe they will begin to change their opinons about what the caps can do.
BTW, I want to mention to anyone who may be just starting to look into using the caps, please take some time and look through some of the older posts from this thread (I read through all of them and it took me about two weeks). There are tons of tips and tricks to be gathered from all the past users that will help you with your own capping experience. For me, reading through the old posts helped me to realize that shedding will be happening and not to freak out. It just helps to normalize this whole experience. Also, there is a member named Susan who posted extensively for quite some time about her experience with the caps and developed a detailed instruction sheet that you can obtain by emailing her. It's very helpful.
0 -
Ok Ladies! My husband got us a blog up and running. Almost makes up for that grey hair comment! The videos of the Elastogel cap changes are posted. Enter at your own risk! It is definitely a work in progress. The avitar on the blog is the last day of chemo so you can see my hair. We are working on a timeline of hair pics now.
Http://LaughingThruBreastCancer.blogspot.com0 -
Ladies,
My mom is 2 months PFC. She said she is ready to color her hair and use demi-permanent color. Have any of you colored this early? She is a hairdresser and going insane. Lol! Is this a horrible idea? The nutratint (sp?) did not work to cover her gray!0 -
Gildedcage- you are so right about the old posts! I picked up so much info from these ladies. It is also where I read about the shedding being worst between the second and third treatments and that days 20-35 were the worst. And yup, they were right in my case! Everyday my daughter asked if it was day 35 yet! I found shampoo with tea tree oil really helped my scalp too. Take Care
0 -
gildedcage - do you have an email for susan, or a member name to make searching easier? I want to finish this process feeling like I did everything i could to make it work! Thanks!
0 -
mfm - Good luck! I'm glad to see another caps user right now. Before you posted, I think it was just me and gildedcage (and maybe one other?). I sure have learned a TON from these ladies who came before us.
Thanks to everyone for chiming in on the headaches. I'm not taking Zofran (took one and it made my nausea worse & I started throwing up, so I said no thanks!), but every anti-nausea medicine has headaches as a side effect, as do both adriamycin and cytoxan. So between the meds and the steroid crash and maybe my headache was some sort of bone pain from Neulasta? I seriously doubt it has anything to do with the caps either. I don't think I'd get a headache a week later from that!
So... I'm day 17 from my first tx, had my second Thursday, and NO hair loss <knock on wood>. I know the big shed is due to start pretty soon, but I'm still walking around with my normal hair and I love it! So hoping these caps keep doing their work! I did manage to find a wig that's very close to my style, just in case.... but to me it would never look the same. I have dark (with highlights) very thick, naturally curly hair layered to my shoulders.... it pretty much has a mind of its own. So trying to duplicate it? Not really possible. I guess it would be passable for anyone besides me, but I really really hope I don't need it!
0 -
Hello ladies - I'm 3 taxol treatments away from being done with chemo. I'm on Taxol now (1 down, 3 to go). I already did 4 AC. My hair is long - I notice the thinning, but others claim to barely notice. I can't tell if they're being nice or if that's true. Because it's on my head I notice immediately. My question: I'd like to start using a thickening or fast growing champoo... is it too early? any recommendations? I've heard a lot about F.A.S.T. by Nisim - anyone know about this?
0 -
For those interested, Susan's user name is sebm9. If you send her a private message, I'm sure she will email you her instructions. That's what I did and she was very accomodating.
0 -
anniej great going - you're almost there!
i didn't do too much research on hair thickening shampoos. but there was a woman at my dr.'s office who was going through chemo at the same time i was and we stayed in touch. after treatment she started using "ovation" products and raved about them. you can get them on amazon. i also had a hair stylist recommend aveda's "invati" products for hair loss/thinning. she said to check out the testimonials that are online. i haven't had a chance yet but i plan to.
kay
0 -
I remember someone commenting on tea tree oil having estrogen which is a big no no if u r Er positive. I was using it on my nails during chemo but stopped. Please read up on it.
0 -
Thanks Schoolmom!
I will do some more research. I always check everything at Sloa Kettering's integrative site and this was all it said about TeaTree:
http://www.mskcc.org/cancer-care/herb/tea-tree-oil
In vitro studies indicate that tea tree oil has weak estrogenic and antiandrogenic properties that may alter the estrogen and androgen signaling pathways
I will do some more research! I had picked up the tip on these boards and the tea tree works great for hair and scalp. Go figure then that it might not be good for us to use!0 -
Murphy,
I have been working on info for the EG caps for you and the blog needs help, but it's a start! Pics and vids are there. I did find old posts here you can look up for lots of tips. Wish I had found them when I was starting but I didn't go far enough back to find people that also used EGs. The posts are on page 93 and ther abouts. Page 112 too.
Torigirl was the first to post about them, I think. Samdobbs was the sweet capper for his wife and ArleneA is another. There might be a couple more too. Motherofpatient used both types and was really not happy with EGs but she has some good info. Sebm9 also has great tips and a protocol sheet she shares, but she does PCCs for people and has helped tons of people! I am trying to pull all the good hints, tips and advice into one place but not sure I can get it together before you start.
Unfortunately the company they say is awful is the one I used because at the time I didn't know any better. Boy do I now! The local people were fabulous but the guy in charge--big jerk. That is why I am now trying to pass on info about how you can do it yourself because some of us cant afford PCC!
I'll be thinking about you this week. What day do you start? Let me know if you have any questions and I will try to answer! You can do this! Best of luck and ((big hugs))
Lynne0 -
Hello ladies, I didn't see this info posted already so I wanted to share. I will also create a new topic with the same info.
Wake Forest University/Baptist Medical Center in Winston-Salem NC is enrolling patients this week in a study that uses a type of cold cap called DigniCaps. The study is for Stage I and II breast cancer patients undergoing chemo. (This is an FDA limitation I am told. I'm Stage IV and therefore ineligible. :-( If anyone is interested in the study, please contact Scarlett Hutchens, the study coordinator nurse, snhutche@wakehealth.edu. I do not know how effective these caps are, but I can tell you that if you want to try them but aren't sure you can switch hospitals for your treatment, you can. It is no big deal. It seems a lot of ladies are unaware that they can go to different hospitals for treatments and tests. I do. Best health to all.0 -
TarheelMichelle - How thoughtful of you to post this information - and how smart to start a new topic with it. I hope someone reading through this website, while trying to decide what to do, will find it useful and be able to take advantage of your kindness.
I am so sorry you were not allowed to take part, seems downright unfair. But, so is your having those awful mets all over the place. I hope you are able to control the pain they cause enough that you can enjoy life and family.
0 -
TarheelMichelle - I love your saying "Every day is a win"! So true on this journey!!!
Question for everyone who has been down this road.... I'm coming up on "the big shed".... I'm on day 19 right now and noticed more hair in my comb today. Does the shedding increase for a while and then slow down again, or am I in for a slow but steady hair loss from now on? I promise you I read this whole thread from the beginning, but I can't remember - I'm blaming it on chemo brain! LOL I know everyone is different, but just want to have an idea of what to expect. I am on AC and still have all my hair. Woohoo! <knock on wood>
0 -
gildedcage - fingers crossed! As for the itch, I had tons of itching and flaking. Add a few drops of apple cider vinegar to your shampoo and wash with it. It helps minimize the flakes. i also would put an ice pack on my head from time to time when the itching was unbearable. It will eventually calm down.
lighthouse lady - fingers crossed for your also. The big shed for most of us was between Tx 1 and Tx 2. I started literally on day 21 and into the day of TX 2 (day 22). They were some nasty sheds; quite a lot came out. But never did i shed as much as that point in time in one day. For many of us, it was a continual daily shed. I found shedding to be worst on wash days and inbetween washes it was usually not too bad. Best of luck!
Note - I have very curly hair also - I did not comb it with a regular comb. I used my fingers on non wash days and a pick on wash days, to try to minimize the pulling. The key is trying to keep out the tangles, because you don't want the tangles getting stuck to good hairs and pulling them out.
curly0 -
Thanks curly! With my very curly hair I use a wide-toothed pick-like "comb" on my hair. I'm doing dose dense AC, so I am 5 days post tx #2 right now. I didn't wash it today, but wet it in the shower (on cold) to erase the "bed head" look. I just want to prepare myself if that's how much I'm going to see coming out every day. I know I have a LOT of hair, but still.... you know how I feel. LOL
0 -
Thank you, Hortense and Lighthouselady for your kind words. I know that if chemo is recommended for me at my next visit, and I choose cold caps, I have a friendly place online to go to for support.
Wishing all of you ladies the best with your treatment.
I've had such extreme hair loss from every single hormonal treatment. I look forward to a time when the side effects of hair loss and scalp sensitivity are ancient history!0 -
Thanks for the reassurance, curly. I've got some shedding happening but even though it seems really bad, when I look at the amount of hair that has come out, I realize it's only a small portion of the hair I've actually got. I'm trying to keep this all in proportion. My hair is greasy as can be and not looking it's best but at least I've still got the hair. No complaints here!
Also, I saw my oncologist this morning and she was surprised at how well the caps are working. She was a big doubter who told me to save my money and forget about the caps but today she acknowledged that the caps must be working because by now (day 20 after first chemo), nearly everyone is either bald or has lost a significant portion of their hair. She told me that, in her experience, 90% of people have lost their hair by the end of week 2. Hopefully my experience will make it more likely that my onc will start mentioning cold caps as an option. I know that it's really helped with my mental health. I was out this weekend at two parties and those who knew I was going through treatment were shocked at how great I looked and those who didn't know I was going through treatment were none the wiser. It was an empowering feeling and it helps me to feel much more comfortable going out into the world.
0 -
Lighthouse - I was dose dense AC and my shedding started on day 22. It wasn't terrible. It seemed like a lot because I hadn't been shedding before then and I was watching for it. But it when I combed, it was maybe 20 - 30 hairs. The thing is it was fairly constant; hairs on my pillow, hairs on my clothes.
But as Gildedcage said, we have so many hairs that it's not really impactful. Gradually, you will notice a general thinning. I was 4 dose dense AC and then 4 of Paclitaxel. I came out of AC with most of my hair.
I hoped that the T (paclitaxel for me) portion would be easier on my hair. I seemed to shed more in the first week and then very little in the second. I can't say I shed more than during AC, but because my hair was thinner, it was a higher percentage of what was left and seemed to have a greater impact.
To me, keeping it at all was success, and while mine was very thin by the end, I was grateful I never had to wear a wig. ACT is tough on hair and I made it to the end with a covering... just in time for it to start growing in again.
0 -
Sending minimal SEs and light shedding wishes to all! To the current cappers my thoughts are with you. I remember when the shedding started and I just hoped I had enough hair to make it through. You do!
Also, just a thought...at night when I get the flashes I curse my satin pillow cases. They just seem so warm. So it got me thinking... They are great for the hair from a no friction standpoint, but I usually lay on one side or the other. It got me to wondering if I lost so much hair over the ears, like most of us seem to, because body heat is trapped between my head and the pillow. I have had barely any shed in the front or back. Just food for thought, especially for you new cappers. Hindsight, I might have tried a neck pillow or something?
So I go for surgery tomorrow and what has me most worried? The cap they put on and off in the operating room! 5wks PFC and shedding is slower but still in swing so I don't need them knocking any extra off!
Hugs to all. Have a great week,
Lynne0 -
Ugh. I'm SO nervous. Last night at my daughter's softball game, I had one little curl that was blowing crazy in my face and I grabbed it to kind of tuck it back and IT ALL CAME OUT!!! To me that seems more than "shedding". I'm so afraid that maybe the caps won't work for me. I've done 2 AC treatments so far, am 20 days post first tx, so I know I'm getting into the big shedding period, but I expected overall hair shedding (which I have), not a clump. Boooo. I'm trying to baby my hair, I didn't even take a shower today - just spritzed it with a leave-in conditioner to get rid of some of the bed head. Am I on a downhill slide to losing my hair???
0 -
Lighthouse. Hang in there! You will make it through with hair. How much nobody knows :0( I hate when light hits the top of my head because I think it looks like an almost bald spot. People tell me they can't tell. Don't know if they are just being nice or are just shorter than me!
I read on here days 20-35 are the worst. My daughter asked daily if it was day 35 yet! But it did slow then and I have had bad shed days but nothing like that first one.
Good luck! Did your team win?.0 -
Hello ladies,
Hope everyone is well and happy! I am 13/33 through radiation. Extreme fatigue and a great deal of pain. Definately rougher than I anticipated (not as bad as chemo of course, but I was hoping for an easier time). Oh well. Just trying to power through.
My hair is holding up great. I am back to showers, my old shamp/cond, my blow dryer, and ponytails. I have not flat ironed yet. Made an appointment for a relaxer a couple of days after I am due to finish rad. That will definatley be a celebration week!
I did want to share that I finally got my invoice from Penguin (aftter several urgent emails) and submitted to my insurance company. I am waiting to hear back. If I get any reimbursement I will post all of the information- probably both here and on the penguin board.
Trying to spend a lot of time with my 4 year old. I know I am over compensating (I doubt he realizes mommy is "sick"), but I can't help it. Lots of pizza date nights, starbucks runs, trips to gymnastics and the playground. I finally got him sleeping in his own bed!
0 -
4sewwhat - thanks for the pillow tip, I never thought about it. Prayers out to you for surgery.
0 -
Murphy,
Thanks! Emailing you now. Best of luck to you tomorrow to you too!
Tmb173-- awesome you are done, sorry it hasn't been easy. But....you are done. I start in two weeks so we shall see.0 -
Lighthouse - you made it well past the "regular" shedding time. That's a good indication that the caps are working. Everyone is different of course, but you seem to be on the right track. The "red devil" is tough, but I made it through with hair; you can too. Hang in there.
0 -
Hi tmb173
I originally read you were 33/33 on rads then saw 13/33. Sorry wish it was over for you. I start in two weeks and also didn't think it would be too rough. Sorry you are having a rough go of it.
I asked my RO about Miaderm and he said it was good but he recommends something called
Lise-Flo by Nature and Herb from amazon for about $12. It is supposed to be similar to what they use in Germany that is not FDA approved here yet.
My lymphedema/PT lady also said she thinks it works really well. Also she said to get cotton flannel, nice and soft and soak it in aloe and drape it on the radiation area. old t-shirt would work too Maybe that would help?
Great news about the hair. Oh how I long for a nice hot shower where I can let the water pound on my head and neck!
And, just my philosophy. We are not "sick". We were invaded and are all at different stages of kicking the beast to the curb! I bet your 4 year old is enjoying the extra mommy time no matter the reason!
Best of luck through rads.0 -
Thanks! I bought a package of men's undershirts and they seem to be working well. I have one perscription creme along with aloe and udderly smooth. But to be completely honest, the only thing that's really helping are pain pills. I'm sure that is contributing to the fatigue, but what can you do. I only have a month to go and I'm not going to second guess anything that is working for me.
0
