Cold Caps Users Past and Present, to Save Hair
Comments
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Hi ladies -
Just got back from a business trip. I am currently 3 weeks PFC and was a little nervous about interacting with all directors of my company. Some people know I'm going through chemo treatment and many others do not. During a breakout session, we built bikes for kids. At the end, our groups had to select a rider to race an obstacle course. My team selected me. I graciously declined because i don't have the strength or stamina for that. My point is that i obviously do not look like a cancer patient because I have hair! No one looks at you any differently if you use cold caps. If anything, you may get less support and no slack at work.
Good luck to the newbies!0 -
Love it, Loafer! I had a somewhat similar experience....held a meeting for the faculty of a course I direct. About half the folks attending knew my story; the other half had no clue. And didn't. When it was time to share what was going on in our lives, I shared about the half marathon I've signed up! After the meeting, one of those 'in the know' came up to me and said, "You definitely are NOT the face of someone going through chemo! Anyone you didn't tell doesn't know!" Love it!
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Hello everyone,
Today was the first day using cold caps and I feel like I am still wearing them. DH did a good job but kept worrying that the cold caps weren't cold enough so they got down to 36 below. I guess that is why they still feel like they are on my head! Anyway, I won't know if its working for a few weeks but I'm confident they did.0 -
Well, today is day 16 post ist TC cocktail with the PCC. At this point I've not had any shadding or hairloss. I'm caustiously optimistic but....... sigh........ we'll see how it goes. LOL!
Deb
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Good luck Amrdbit. I did not shed until day 21 after my first chemo...hoping it is light.
Good job Rhonda - you have got one under your belt now!
Hope - have faith! Hoping for minimal shedding!
Loafer - my business colleagues came in town a few days after my last chemo and they did not know I had BC. They knew I was out for some surgery. I went to dinner with them with a full head of hair.....no one knew. I also returned to teaching aerobics a few weeks PFC and still had my long ponytail...again, no one knew. LOVE the cold caps!
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LOVING these stories!!!! We have control of who knows our personal situation and who doesn't. Priceless!
So happy to see so many newbies doing the cold caps. I do believe the word is spreading <cautiously optimistic>!
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Hi Patin MN-
Thank you so much for the tip on the color mark recommendation-I'll order it today!-and good luck with the color!!
Also to Rhonda- I agree-I started using the same products as you -the nourish and the kenra and cold rinses a few weeks before the caps/chemo started and do think my hair looks thicker than before (good to start with what seems to be more)- Also Hortense is right about keeping an eye on what you normally lose prior to starting if you can- about 3 yrs ago I clogged my tub drain and was shocked at the amount of hair the plumber removed!!- From there on I got a hair catcher and was initially shocked by the amount of hair I loose everytime I wash- that may help to put our loss in prespective-
Good Luck and thank you all for the advise!
Bernac
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Hi all - I have now tried most over the counter products to cover gray and bald patches. I have found the thick colormark to be best for covering gray. Its like a magic marker and covers larger patches which I need. It's not permanent, so you can still see gray just not as startling as it would be against the contrast of my dark hair. The other product I would recommend is Toppik to fill in the thin patches. I find myself touching my head and getting the stuff in my fingernails though. Also tried Joan rivers beauty great hair day to cover bald patches and think this is not necessary with the other two products. Good luck!
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Great success story, Loafer!
There are 3 of us in the January chemo group using the caps (amrdbit, Rhonda and me) so I think word is getting out, it's just sad that more people either don't know about the caps or get shot down by their doctors. One of the ladies in our group commented that her center had a freezer but she hasn't seen anyone using them...that's too bad. I know it's not for everyone and is certainly a financial and time commitment, but I would have been really angry if i had learned about this option after the fact. I plan to share with anyone I can and hope I do draw attention to myself at the treatment center so maybe someone else gets interested. Hoping also I can change the outlook of the nurses so maybe in the future they are encouraging vs discouraging of patients who want to use them. Okay, off the soapbox
Keep the good vibes and all the tips coming!
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Was just at the MO's office this morning getting my Herceptin, and I asked my nurse if anyone was using the cold cap room now. She said just one person, as far as she knows. Sad - we have a freezer, and we have a fabulous representative of Penguin Cold Caps here in the Twin Cities to help (she did training for my helpers, filled in when someone couldn't be there, brought dry ice one day when the freezer was acting goofy, etc.).
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Pat that is sad! I think I used the cold cap rep you are talking about , Susan, - I am in Chicago but flew her in to train my team and work with us on the first day. She was an incredible help and between her and my wonderful local mentor, mdg, I know I will be a success!
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Hope - yes, Susan. She is wonderful, isn't she? As for mdg
I read her blog when I was researching cold caps, and it was very helpful! Yes, mdg, your ears are ringing!0 -
Pat, I also learned about the caps from mdg's blog. It was so informative and then later on when I wanted to go back to it I couldn't recall what the URL was and just kept thinking how can I find the blog with the girl who had the mini pads on her ears? LOL Little did I know that I'd find her again on these boards and that she only lives a short drive away...divine intervention I must say. She's been a real inspiration for me...
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My ears are ringing!!! Such sweet comments ladies. The funny thing about my blog was for almost a year I never had any photos or personal stuff on there. I got so frustrated with the lack of information on cold caps and lack of support of the medical community I decided to "go public" with it all. I can tell you my blog was just therapeutic at first, now I hope to continue to offer information and success with PCC's. The most visited posts on my blog are all about the cold caps! If anyone is interested in sharing their story about using the caps or sharing photos for my blog, I would love to add them in. I only have one other person on there right now. I just want to help offer more resources and proof for people that are researching them. If you are considering sharing photos, I can block out your face if you like to keep it more private. I have photo editing software and it just takes me a minute. PM if you want to share your success on my blog!
It was super fun to meet HOPE49 for lunch a few weeks ago and meet up the day before her 1st chemo! I have also connected with other girls via phone that have used the PCC's...probably about 6 other women over the past 1 1/2 years. I am happy to support those going through this.....it's not fun and the kindness of someone who "gets it" makes all the difference for some people.
So I still have to laugh at your comment Hope about the woman with mini pads on her ears.....I have been referred to by many characteristics in my life, but that is the first time for that one! Oh well..........
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For anyone getting treatment in Michigan, i also have to give a shout out to my helper - Eileen and her husband. They were the most warm, caring and knowledgeable people. Eileen herself had undergone breast cancer and begged to use the caps. She helped persuade Beaumont to set up a trial and purchase the freezers. It was very nice to go to a hospital where all staff endorsed and supported cold caps ( onc and all nurses). I would show up for treatment and have everything taken care of for me.
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Just about 3 weeks pfc. Little to no shedding....normal prechemo pattern. Trimmed about 1/2 inch today before washing to get rid of some of the straggly ends. Able to comb/baby clip the top to cover thin areas on top. Not sure how much has grown back but I am getting used to the thinned out hair. No one notices....some have said, oh you cut your hair.....happy with the results. The no chemo look has been great going back to work after more than 3 months off.
Radiation starts this week................
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Does anyone know why it is not recommended to trim your hair while using penguin cold caps???
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Never heard that one... Maybe they're thinking if you go to a salon as they'll use strong products and comb it alot? I don't see why you couldn't gently trim it... I trimmed mine.
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Congratulations schoolmom! Well done. With luck, you will not shed anymore.
3131 - I don't think trimming a little hurts. I trimmed several times during chemo to keep it shaped, but no more than half an inch each time. I think the idea is not to cut a lot off at once so that there is no change to the normal pull on the strands. My hair was growing like crazy, judging by the length of my roots, so I felt trimming a bit every three or four weeks balanced that out.
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I was told not to trim my hair during treatment, at one month PFC it was okay to trim up to 1/2" per month. I think it has to do with not stressing the hair unnecessarily during this time...I'd say to PM makingway to see if she has more info...let us know what you find out!
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hope49 - that is exactly what I heard....it has to do with the stress to the hair follicles. I figure I will trim once a month and maybe some of the thicker shorter layers will help fill out the thinned out longer hair that came out at nape of neck.
Couple of coloring questions....
Touch Back by colormark - temporary hair color that you paint in and washes out. Can this be used during chemo? If not, how long after chemo to use it?
Keranique - a hair growth product with shampoos and conditioners that include 2 % monoxodyl. Can this be used after chemo. If so, howlong after the end of chemo?
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I had such excessive hair loss between #2 and 3, I cut my hair from well below shoulder to chin length. Hair was coming out in fistfuls and all over me and the house. I had written myself off as a failed cap user. I went to my hairdresser and had her even it out at chin length. I have a low hairline in the back and my caps did not cover this area. After getting rid of all that hair, which wasn't attached to any hair follicles anyway, the shedding slowed down to a manageable rate.
I also used the colormark marker when my roots started coming in around #3. I can't wait to get some semi-permanent color on these roots. Will set up appointment with hairdresser 5 - 6 weeks PFC.0 -
I used color mark during chemo with no ill effects. Yesterday (7 weeks PFC) I went to the salon and had my hair colored with the Clairol Beautiful Collection that a couple others used. My colorist went to Sally Beauty Supply to get the color, and they didn't have a great selection. She figured she'd need two to color my long gray roots, but they only had one in the right color that was specifically for better cover of gray. So she blended it with another one that was the right color and we hoped for the best. The end result was not bad, but not full coverage either. But so much better than it was! My colorist used some spray on powder (Bumble and Bumble) on my part area and it made my hair look perfect! She gave me 2 partially used cans of the spray so I can fix myself up when I want to look better.
Next step is to get my hair cut - I haven't cut it since mid September. My guy doesn't work Saturdays or evenings and it's hard to take more time off work when I'm already missing time for rads and Herceptin. But I'll figure something out.
Oh, one problem with the color. I went to the gym today, and brown sweat dripped onto my pink t- shirt. I don't know if it was the Clairol or the spray powder, although the powder was only on the top of my head. luckily the sweat that dripped on my face wasn't obviously brown...0 -
I am due to start chemo in three weeks- have seen a Medical Oncologist at Weill Cornell Breast Center who recommended the ACT treatment. I am seeking a second opinion at MSKCC in two weeks. My plastic surgeon told me about cold caps today during my first tissue expansion today- I am very excited at the concept but have a few questions:
1) How effective are the cold caps for a combination of Adriamycin and Cytoxan IV then Taxol IV? The short cold caps info section on this website says the following: "Women who got both an anthracycline and a taxane in their chemotherapy regimen (combination chemotherapy) seem to have the worst results with cold caps, though some of them still kept some of their hair." Has anyone had positive results with ACT treatment?
2) Is it true that MSKCC does not allow cold caps during chemo treatment? Does anyone know if NYU allow them?
3) My head is quite big and I've read that I can use the strips around the periphery but it does not seem very effective- any comments?
4) Which brand do you recommend? Penguin or the Dignicap System?
Thank you all!
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Hello Pei. I had success with the ACT treatment. I actually have 4 rounds of AC and 12 round of Taxol. As I have said before, if I was able to freeze my hair follicle 16 times, anyone can. I definitely followed the Penguin Cold Cap protocol and now 8 months pfc, I couldn't be happier with how healthy my hair looks.
I live in the Chicago area so I am not sure about the centers that you were referring to.
Let me know if I can help with anything else
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Hi Pei-Some have had success with the caps on the ACT regimen. There is more data on the TC regimen because it is prescribed much more often than ACT. Remember you are not only a 'patient' but also a consumer. There are many, many oncologists. Let them know that if they are unwilling to accomodate you that you will take your $$ elsewhere. You definately want to use the headbands over the caps. Especially so, because you have a large head. The Dignicap System is not available to the public yet. It consists of a cap connected to a machine. There have been some clinical trials using the machine. Once it is avavilable it most likely will be rented through the hospital. If you need someone to help you with changing the caps let me know-I have a contact in your area.
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Hi Y'all!
Here's an update. I am at 19 days post cocktail 1 of TC. (2nd treatment is on Wednesday) My hair started shedding on day 17ish, I think. I'm shedding a lot. Today I went walking with the dog. We did 3 walks totalling about 4 1/2 miles, and each time when we got back I could see a bunch of hair on my tank top. I swear if I even look at my wide tooth comb, more hair falls out. Not sure if I'm going to fall into the "it worked for me" category or not. I hope so..... but we will see. I keep following all of the rules, regs and protocol. Fingeres crossed...... b/c I've been bald once 18 years ago and it sure wasn't pretty then. LOL! Deb
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Hi Ladies,
Just a note to let you all know that tomorrow is the day I'm giving my invited talk on the evidence around cold caps to the Breast Tumor Board at my institution. Just heard from my BS who was wondering how to introduce me. I'm psyched and set to go! She said to anticipate controversy. I told her I woulnd't expect anything less!
Will update after the talk.
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301724 - good luck! Can't wait to hear how it goes!
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301724-Best of luck to you!!! Shame those doctors/nurses who haven't done their homework! You might want to emphasize that those doctors who accept cold cap use will continue to get more business.
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