Cold Caps Users Past and Present, to Save Hair
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tunderhill, I had the same chemo regimen as you and I was a success story. I lost about 30-35% of my hair. I used the Penguin Cold Caps and am so glad I did. AC-T is probably one of the hardest chemo regimens in terms of the cap's effectiveness with about 50% of users having less-than-favorable results. I was prepared for that going in and figured if I could just keep 50% of my hair I would be happy. Click on my username and you can scroll through my old posts and see pictures that I posted along the way. Lots of good information on this thread if you read back - maybe start with the beginning of the year?
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Welcome Tunderhill. The caps you can purchase from Cure Diva (or Amazon) are not the same caps you rent from Penguin Cold Caps. Particularly when receiving ACT chemo, I would recommend using Penguin if you can swing it financially. If not, purchase the ElastoGel caps but follow the cap protocol recommended by Penguin. For me, it was definitely worth the time and expense because I kept 70-75% of my hair. Although my hair thinned, no one would guess I was going through chemo unless I told them. I would start by reading the websites for Penguin Cold Caps and the Rapunzel Project for more information. Also pick a point in this thread and just start reading. Many women have posted pictures or have links to websites with more information. Better get busy if you start next week!
Edited to add: Search for posts on this thread from "makingway". She has a link to her website that has a good comparison of the differences between Penguin and ElastoGel caps.
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Hello Cappers,
Checking in to say hello. 18 mos PFC and I needed keratin to quiet down all my wild hair. Today at the salon another client commented that if she had all the hair that I have she too would be using keratin. LALALALALALALALALAAAA!
I'm focused on all of my stupid surgeries at this time and my hair issues have faded to the past. Message me if I can be of help to anyone. My before and after pics are on my profile.
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Angiel - What great news about the blow out! I can imagine how heavenly that was. How many weeks are you out from your last Taxol?
Tunderhill - I am using the Penguin caps and have the same protocol as you. I have lost of bunch of hair but it is basically just thinning and I lost hair above my ears. Luckily, I had a ton of hair to start out with so thinner hair for me still doesn't look too bad. I got a subsidy from Cold Caps Assistance project that covered some of my caps cost. You could try that.
edwsmom - You are right that you can not dye it. I have that skunk thing going and it isn't pretty. I use the temporary color with the mascara wand applicator but it only does so much. I am really happy though to have my own hair skunk look and all though.
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Melinda, I had long hair when I started cold capping. In fact, I had an appointment to get it cut when I talked to the president of Penguin Cold Caps and he told me not to cut it. So I didn't. It was a pain to deal with it being so long and not being able to blow dry it--it was winter at the time. But I used those foam curlers and it looked pretty good.
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I am on 6 cycle of TCH, just finished my 2nd cycle. I lost a lot of hairs above my ear, very thin, almost like bald, but i can cover it with my hair from the top.
Is it normal to shred a lot on the area above the ear?
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I think it's the way the caps fit. I lost hair above my ears too and now I have about threeinches of regrowth there.
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Alice, it's very normal to lose hair above the ears because it's hard to get a good tight fit in that area. A lot depends on the shape of your head. I used the extra headbands and still lost hair around my ears. At least it's a good way to tell the caps are working on the rest of your head!
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Leslie: thanks for the info.
anyone with 6cycle of TCH: did you notice some regrowth during chemo? Or is it basically shredding all theway to 6 cycle and regrowth after PFC
this week's shredding (day 22 afterward)is truly depressing. I lost so much hair during wash, makes me nervous to do it.
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Alice, I had the same regimen as you, and I noticed regrowth during chemo, and my hair continued to grow in length, too.
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Just curious, did anyone notice regrowth during chemo while on taxotere/cytoxin?
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Alice, hair washing days were filled with high anxiety for me during chemo. As long as it's not coming out in clumps, your shedding is normal. You're on day 22 and would be losing all of your hair around now if not for the caps. I had 4 rounds of TC. I don't remember noticing regrowth of new hair during chemo, but my remaining hair continued to grow throughout.
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Try http://arcticcoldcaps.com/
They use elasrogels, and are just starting out, so I Heard they are doing some free stuff!!!!!!!!!
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Angiel it must have felt nice to have your hair washed after all this time. How are you doing recovering from your BMX? I will be headed down the same road after chemo is completed.
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Hi ladies, I'm starting chemo in a few weeks and will be cold capping.
I'm Italian. My hair is thick, it's currently kind of short (just above chin length) and mostly gray at this point (I color it dark brown). I also have thick dark eyebrows.
I'm trying to figure out how to manage my appearance for working while going through the chemo since I won't be able to cut/color/blow dry it at all and rarely wash it during this time (correct?). My hair isn't long enough to pull back into a ponytail. I can't imagine losing my eyebrows since they are so dark and prominent on my face.
How did you manage it so you didn't look a mess? Any tips or suggestions?
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Hi ladies
My oncologist was very against my using the cold caps. He said they cost too much and are too much
trouble and that they may cause cancer in the head ???? :-(
Dosen't take much to discourage me so I guess I will not do cold caps.:-(
Rosieo
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Edws,
I am Italian too, I got the extra bands for all my hair. I'm a redhead (northern Italian) and so my brows are reddish blonde and I have been coloring them in since I was 15, so that wasn't much of an issue for me when they were gone. My lashes fell out too but they're normally pale and stubby, my brows came back dark!!
Roseio,
I learned about the caps from my doctors at UCSF, who recommended them to me. I too asked about recurrence and they told me less then 1% chance of recurrence in the scalp which they said was virtually unheard of, extremely rare. I'm a cautious type but since they've done studies at UCSF on the caps, I took their word for it.
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Rosieo, how unfortunate for your oncologist to discourage you like that. This is your decision not his. I had a mastectomy at the age of 34 and my surgeon (who was in his 70's) thought getting reconstruction was 'too much trouble'. For who? I regretted not getting another opinion but was too overwhelmed. I later got reconstruction but was tormented with being single and 34 and missing a breast.
Cold capping is your choice with regards to money and effort, and he is using 'scare tactics ' regarding the possibility of getting metastasis in your scalp. There is much written about women with BC cold capping and there little risk of recurrence to your scalp . I will look for some articles that discuss this specifically.
Your doctor sounds un-supportive and uneducated about it, and he doesn't have to go bald and regrow his hair, you do! Don't be discouraged by one person, decide for yourself what is right for you
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Rosieo, I certainly respect your decision not to use cold caps, but I think a response is necessary.
Yes, cold caps are expensive and in most cases not covered by insurance but there is some financial help available for those determined to make it happen
Too much trouble? Cold caps are quite a bit of work and each woman has to make her own evaluation based on how badly she wants to keep her hair- certainly not up to your doctor to decide for you.
Finally, you are posting on a thread filled with women who have chosen to use cold caps after much research and in consultation with their medical professionals. We did not make our decisions lightly. I assure you, none of us are that vain that we would choose to further jeopardize our health by using cold caps. Your doctor's opinion as to the safety of cold caps is terribly outdated.
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Fwiw... I asked my oncologist today about cold capping and she said the same thing as Roseio heard. She basically said she's seen scalp metastasis and you're going through all this to kill the cancer so why risk it.
I was shocked about how adamant she was...she's a top doc at a well known comprehensive cancer center, I've thought she is a very progressive doctor who is very into research validating treatment decisions. I definitely didn't expect her reaction since my breast surgeon was unconcerned when I brought it up to her
I'm still thinking about it, but I'm now more unsure.I really don't want to lose my hair...
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I don't get it...so why don't they forbid people icing the hands and feet as well to ward of neuropathy? I've also heard that some encourage holding ice in the mouth on some regimes to avoid mouth sores...seems like you're undergoing as much risk with this as with cold capping.
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I didn't mean to imply that I think cold caps are the right answer for everyone. Certainly there is some risk and scalp metastasis, although rare, is a very real thing but I have seen no studies that conclude using cold caps increases that risk. All of our breast cancer treatments involve weighing risks. Chemo itself poses the very small risk of developing a secondary cancer yet we still take that risk. My point was that the women on this thread who have used or are currently using cold caps have weighed those risks and made an educated decision to use cold caps.
My oncologist, also at a NCI designated cancer center, had never had a patient use cold caps but didn't have any concerns about me using them. After seeing my results, she now routinely recommends them to her patients.
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How common is scalp metastasis from breast cancer? The number I have heard is around 1%, like suladog said.
So why risk it? Because to some women saving their hair is worth that tiny risk.
For other women, that 1% risk of scalp metastasis scares them too much to go through the effort of cold caps.
Saving my hair was the clear choice to me, but everyone obviously is different with their risk tolerance.
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For those who are frightened of scalp mets, see this research article:
Scalp cooling to prevent alopecia after chemotherapy can be considered safe in patients with breast cancer.
Breast. 2013 Oct;22(5):1001-4.
van den Hurk CJ1, van de Poll-Franse LV, Breed WP, Coebergh JW, Nortier JW.
Abstract
With modern scalp cooling equipment cytotoxic damage of hair root cells can be prevented in half of the patients with cancer at high risk of alopecia. However, traditionally doubt has existed whether scalp cooling might facilitate hiding and disseminating scalp skin metastases and thus decrease survival. We discuss this risk using frequency data on metastases in breast cancer from observational and autopsy studies and the Munichcancer registry. They showed the incidence of scalp skin metastases to be very low and not differ betweenscalp-cooled (0.04-1%) and non scalp-cooled (0.03-3%) patients with breast cancer and in need of chemotherapy. We found it rather unlikely that the incidence of scalp skin metastases might increase at all afterscalp cooling, whereas a very small proportion of patients receiving chemotherapy are at risk to develop metastases at this site. Scalp cooling can thus safely be offered to patients treated with alopecia-inducing chemotherapy.
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Incidence of scalp metastases in breast cancer: a retrospective cohort study in women who were offered scalp cooling.
http://www.ncbi.nlm.nih.gov/pubmed/19241158
The incidence of scalp metastases was 1.1% (6 cases out of 553 patients) among women who used scalp cooling in the neoadjuvant or adjuvant setting and 1.2% also (1 case out of 87 patients) among women who did not usescalp cooling in the neoadjuvant or adjuvant setting. The incidence of scalp metastases was low and no case presented as an isolated site of relapse.
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my doc Laura Esserman and Jon Park , Park was one of the original herceptin trial team both recommended it to me and when I mentioned the scalp issue they both felt it was negligible. I am super cautious but it seemed a very remote possibility. The first time I did chemo 25 yrs ago there were primitive cold caps but they were not considered safe and so I never used the
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Edswmom, you can manage your appearance by using brow powder on your eye brows, Toppik if your hair starts to thin on top, and various non ammonia hair colors that come in mascara-like wands or Fanciful non ammonia/non peroxide hair color to cover the grey. It's totally doable!
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Another thought on the capping vs not capping....You have a higher risk of getting leukemia from the chemo than scalp metastasis from capping. There is also a higher risk of permanent hair loss with Taxotere than scalp metastasis. I personally have two friends that were told not to cap by there doctors and they listened to them. Neither one of them got their hair back. It has been devastating for both of them. There are a lot of women dealing with significant hair thinning/loss that is permanent from taxotere.
Just like everything else in this process, capping is a choice. I guess the part that bothers me is that the doctors scaring people off from using caps have not reviewed the clinical data indicating there is not a higher risk of scalp mets. I would personally rather have hair and deal with scalp mets than not have hair and deal with scalp mets...there is not much difference in the rate of scalp mets either way.
We all have to decide so many things in this journey - I guess I just urge women to be their own advocate. Look into the clinical information on ANY decision you make along the way. Don't put your complete decision making in the hands of your doctor. You have to live with the decisions you make along the way and fully understand the risks with every decision. If your doctor has not read the clinical information on the caps, that is unfortunate because he/she is not current with information that is out there. They simply don't care about the hair issue for us patients - I do believe I want a doctor that is concerned about all of my concerns.
No judgment if you do/do not choose to use the caps. It just gets hard for us that have used them to see comments that are negative against our choice. I hope you can have a meaningful conversation with your doctor about capping and make your own choice based on clinical findings. Either way, good luck and remember there is no one "right answer"....there is only the right answer for you personally.
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+1 mdg
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A Look at the Numbers...
So, reviewing the odds as I understand them...
1% or less risk of scalp mets in conjunction with cold capping, and no definite relationship has yet been established, according to existing studies
Close to 100% risk of complete hair loss on Taxotere regime if you do not cold cap
6-7% risk of permanent hair loss through use of Taxotere, which is an acknowledged side effect, has been verified through studies, and can be attested to by numerous women who are now dealing with permanent baldness
Undetermined % but real risk of developing future leukemia from chemotherapy treatment - you are warned of this in your consent form
Undetermined % but real risk of developing a future secondary cancer from radiation therapy - you are warned of this in your consent form
Like the carnival barker says, "You pays your money and you takes your chances".
I am doing everything (surgery, chemo, rads) that is appropriate for my stage of the disease to take care of the current cancer and reduce the chance of recurrence. Quite honestly, knowing that I'll soon have to deal with the known risks and multiple side effects of hormonal therapy , I just can't bring myself to worry overmuch about that 1%.
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