Cold Caps Users Past and Present, to Save Hair
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Thanks, lighthouselady!! How far through your treatments did you get before realizing the caps weren't working, and how did you know for sure? I ask because I'm going to cut my losses (literally) the second it looks like my hair is going to fall out. I hate using the cold caps, but love having my hair, and it's honestly a close call on chemo days whether I like my hair more than I hate the cold caps.
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lawyergirl, hoping all goes well so you can show Ms know-it-all. I'm afraid I was Ms Know-it-all with a recent newbie on another topic and I feel bad about it. We just want to help and those of us who have "been there done that" are desensitized to what it's like to navigating this new territory when you are basically in shock. I will say your acquaintance said pretty much what my oncologist said but she didn't call it "pretty hair" which sounds condescending.
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I don't think I had any issues post exchange with my hair. I had my exchange in June and finished chemo in early May. I was still shedding at that point but didn't notice any change after exchange. I have high profile round implants. My PS only uses round implants. I can't answer about gummies at all as mine are silicone. Check the Reconstruction threads or ask Whippetmom about the gummies. Send her a PM. She knows everything about foobs!
As far as shedding at my moments of despair I looked in the mirror and thought "do I have a full head of hair?." I did have a full head of hair. I tried to focus on that as much as possible. The goal was to have enough hair to look normal through/after chemo. I achieved that. I had to accept that my hair was not going to look completely like it did before chemo. That would be an unreasonable goal. I think we have to try so hard to keep prospective. I know how hard this is...and I know how easy it is for me to say three years later. I am offering what I learned from this experience. Soon enough many of you will be saying the same things.
As far as AC and T....I did not have that chemo but there are a few gals around here that did. I know overall the success was not as good with it, but many of the girls continued to use the caps. Even if you have to wear a wig for a while - you will not lose all hair. Once the hair at the scalp starts growing in a few months after chemo, it will mix in and make the existing hair look thicker and the scalp will no longer be visible. I think it may be worth continuing to use the caps. Also there are some people that have experienced permanent hair loss from Taxotere. The doctors don't seem to discuss this possibility with women before chemo. If you look around they will say 6% or less have this issue, however I think the rate is much higher. I personally know of several women that have had permanent hair loss. Some are 3 years out and still have a visible scalp. None of them used cold caps. I am glad I used them. I can honestly say the hair elsewhere on my body is all much finer and thinner since chemo so I can only imagine how the hair on my head would be if I had not used caps. Just my opinions. People still have to evaluate the situation and make the best decision for them personally.
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I had 5 rounds of TC and lost between 1/3 and 1/2 of my thick head of hair. I never once thought I would permanently lose my hair. I had to be positive as there were enough things to worry about. My hair is growing and filling in nicely where I lost hair and I think my onc is a believer in PCC. She sure tried to discourage me initially but the thought of letting the whole world know what I was going through was not an option. My last chemo was 7/2/13 and on about 9/1 I couldn't stand the dullness, shapelessness and roots showing so I went to a hair stylist who treated my hair very gently, but put in a chemical free color and cut and styled my hair to make it look 50% fuller than it was. I loved her for that and in fact am now seeing her permanently. She's using regular products now and my hair is as good as it was a year ago before this nightmare started. Good luck to you all.
Amy
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reneerDSM - I don't have a port and I did not realize it required surgery for removal. Sheesh. Another surgery many of us have to go through. I've lost track of the number of pokes, cuts, slices, etc. but I'm glad to hear it doesn't become a hair loss issue.
Sweetjam - I agree that the hair is harder than the boobs and I'm not sure why. Maybe it's because I know I'll be getting new boobs and the entire world doesn't get to look at them. When I made my decision for chemo it was based solely on medical necessity. Hair is down the list of priorities. My primary objective is to be healthy and cancer-free. Second is quality of life and third is to look as reasonably attractive and normal as I can. Please make the right decision for yourself after careful consultation with your MO.
Lawyergirl - Okay. The big brain freeze. Thankfully I learned from the wonderful women here that my head would go numb after the first ten minutes and it did. During that time I recall thinking that I would not be able to tolerate it. I just kept thinking 10 minutes, 10 minutes, 10 minutes. And then my head was numb. The first minute of a new cap is a bit of a shock. I've gone through other painful cosmetic procedures - lasers, peels, injectables, etc. I remind myself of the long term goal and try to ignore the discomfort.
When people I don't know well ask me about the caps, I downplay the likelihood of their success. I tell them I have a wig on reserve and that they keep my mind off of chemo. I see no point in defending them until I've had success myself. It is most awkward with women who have lost their hair and did not use the caps either because they did not know about them or did not have the resources. Women who actively chose not to bother are different. I can imagine how bad I'd feel if someone else kept her hair and I lost mine when I really wanted to keep it. I try to schedule a private room for the chemo to avoid making a big display of it. And so, your friend looks at you and recalls the heartache of her experience and clearly feels conflicted. Her word are directed to you but it's really about how she is feeling with what she has been through.
LHL - Good to see you. I followed your story here. I hope you're doing well. I know how disappointed you were and it
Marsha - The couple times I mentioned the caps on other threads it was not well received. It's hard to know how to let someone know about them or ask questions about shedding without feeling like I should have just kept my mouth shut. With that said, it was because you and others posted your photos on this thread that I decided to take the plunge.
It's actually easier for me to talk about my boobs. When a neighbor commented that I used to have such a nice "rack", I responded by saying that I will soon have the boobs of a 20 year old and I invited her to my wet tee shirt contest that I'm planning for this summer.
mdg - Thank you for sharing your exchange experience. I'd hate to go through this only to wake from surgery with new boobs and no hair. Cripes, I can hear my PS talking to my husband now. "Well, your wife did very well with the surgery and she is recovering comfortably. However, we did have a slight problem....". LOL! How do you like the rounds, btw? I may go with them for the upper pole. I just need the reassurance from my PS that they won't look like oranges on my chest. Gummies have advantages if they don't sag but often they do. Today I did exactly what you suggest. After I placed my pile of hair in my baggie (because I'm a weird-0), I looked in the mirror and reminded myself that I still have plenty of hair and tomorrow is magical day 21.
Amy - It is great to read your story because you're back to normal in such a short amount of time. I'm sure it felt like a long time when you were going through it but it is well behind you now.
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Thank you to all you wonderful ladies for the prayers and support. Tomorrow morning is the CT scan. Also having a bone density conincidentally. Keep thinking this is a big mistake. The doctor asked if I had been sick due to scattered lymph nodes on my pet that were mildly enlarged. I told him no at the time. That night I realized I had taken Claritan, flonase and tylenol sinus the past 2 weeks for drainage and mucus in my head. He seemed bewildered by the scatter of the lymph node mild enlargement....I am hoping if the nodes were carrying cancer they would be next to each other and not spread out. Thank you all for your thoughts and prayers. Will keep you updated. Love to all.
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Good luck schoolmom! I will be keeping you in my thoughts and prayers tomorrow.
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So WW....,
How full is your baggie today?
How is that for a salutation?
May your baggies be light as air today!
~Stephanie
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I got the eye infection before I ever started chemo. Bacteria builds up on the brush and gets transferred to your eyes. Latisse is packaged with multiple brushes to prevent it but if your dr says to put the drops in the cap, that is a significant source of infection on
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anybody else have dreams where their hair is coming out in huge clumps? I have had several loose teeth dreams through the years but I don't recall having these hair dreams until I started chemo.
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I had a dream my hair all fell out when I was going through chemo. Nightmare!!!!
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Hi Ladies, I haven't been on this board for months. I've thought about you often, but just needed to take a break. I have a lot of reading to catch up on! I'm sorry there are so many new "faces" but I'm glad you all found this amazingly helpful site.
Schoolmom, I see you are having some worries. I will be praying!
I'm 6 months PFC and doing really well. My hair is thick and curly. My brother makes sheep jokes! I wouldn't mind if the curls stay, but I'm told they won't. I am so grateful for the caps. My biggest fear was permanent hairloss and that I'd spend life with thin hair. That is the reason I cold capped.
I had dose dense AC-T and though I probably lost about 70% of my hair, I never had to wear a scarf and by the time I was done round 8, new hair was already growing in. I had 30 rads sessions with almost no skin trouble, after my chemo. And now I've been on Tamoxofen for a month with no side real affects.
My biggest trouble was post-treatment depression. I have really struggled with it, but I'm doing much better. My Onc recommended I sign up for counseling that is offered by the Cancer Agency. She suggested it before I was done treatment and said it's common to experience a dip. I signed up and just before my first session, I crashed pretty badly. It's been about 3 months now and I'm doing much better. Life is going well and I'm about to start a new job. I feel like I'm starting afresh.
To all you women who are dealing with chemo, it will be over before you know it. I know it doesn't seem that way, but just keep putting one foot in front of the other. You'll get there.... with hair!!!
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I have a question for ladies who dyed their hair before cold caps(have gray hair). I know I am supposed to still baby my hair(last tx was 12/27), but I cannot go out with all of this gray! I have been using a spray root coverup, and am wondering if that is causing this shedding. Would it be better to just go ahead and dye my hair with a organic color? Any thoughts would be greatly appreciated.
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Marley2, I also have very gray hair. My roots were quite long after treatment, and I used .....oh gosh, I can't remember the name of the stuff now, but it's like a mascara wand and you sort of paint it on your roots; or there's another type of the same brand that's more like a magic marker. In any event, it helped but wasn't perfect. I colored my hair at about 7 weeks PFC, using Clairol Beautiful Collection (no ammonia, no peroxide), because I couldn't stand my roots any more. But I wasn't shedding at all, so I felt OK with it. The color didn't take too well because I was afraid to sit under the dryer as the directions say to do. By the next time I colored it (maybe 5 weeks later) I felt OK with sitting under the dryer, and the color turned out much better. Since then I've been using my regular color (I go to a salon for color).
I will say that the Clairol Beautiful color rubbed off on pillows, and dripped when my head sweat (like when I was at the gym). I ruined a few t-shirts that way. It also turned a greenish color as it washed out. And once we started using the regular color, it took a very long time to get the long, formerly gray roots to match the rest of my hair. So - I can't really recommend that brand.
I hope your shedding stops soon!
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schoolmom -- good luck with the scan. I know waiting is the hardest part.So I'm 14 weeks PFC and I colored my hair at the salon today using a non-ammonia color. It had to sit on a really long time since I didn't go under the dryer and it dripped all over the place. (Previously I used a creme that was painted on.) I colored my hair before chemo to match my roots (dark brown) when previously I had colored my hair red for 25 years. Between the hair color, weight loss, tummy tuck and new boobs people constantly are shocked when they see me and often don't recognize me. The color is very DARK but I know it will become lighter and more varied after a while.
I have hair around my forehead and temples that is 2" long. I never noticed that this area was particularly thin but apparently I did loose hair and now it is growing back. There are longer "short" hairs in other parts of my head. My stylist said the hair in the front hairline grows slower. I can sort of imagine what my hair might look like now if I had lost it all.
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Marsha, I have those same short hairs growing by my ears. They're only about three inches long now at 7 months PFC. It's a constant reminder (in a good way) of what my hair would look like today if I hadn't used cold caps. Like you, I never even realized I had lost hair in that spot until it started growing back in. I guess that shedding had to come from somewhere! Glad to hear you're doing well- that first time coloring post chemo makes you feel like a million bucks, doesn't it?
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Shipsgirl, I'm glad you checked in. I've been wondering how you're doing. I'm also struggling a bit and discussed it with my oncologist last week. She said it's very common for women to struggle with fear and depression after active treatment. I think I was so busy just trying to get through treatment that it wasn't until afterwards that the reality of my cancer and its future implications set in. I wanted no parts of a support group during treatment, but now I'm considering checking out a few. I'm also looking for a new job...
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Shipsgirl and JC - its really great to see new people on this thread but it is also nice to see some old names checking back in. I have also been riding the cancer coaster a bit lately. I'm almost 12 weeks PFC, 4 week post rads. The hair is doing well, although I did shed a lot these past 12 weeks. I finally figured out my "organix" shampoo wasn't entirely organic - read the labels ladies - since I switched back to true paraben free sulfate free, the shedding almost stopped. I have started back at the gym (to shed the 10 lb weight gain) and am trying to find ways to feel good about myself while my hair, body and mind all recover from this journey. I have also started looking for a job. Some days are really hard as the reality of what has happened and the knowledge that it may not be forever over hits me. I have to have my ovaries removed in a couple of weeks in order to start on aromatase inhibitors. The concept of another surgery really hit me hard. Surprisingly, my kids were so "yeah ok mom" when I casually mentioned I'd have to have a quick surgery in February. Like this is their new normal. I hate that its their new normal.
Ships, I'm glad that you are doing so much better. I have a pretty solid faith and I think that this is God's way of reminding me that I am not in charge, that he is, and to stop and appreciate my life, my family, my friends and my world as its pretty darn good. We can lose sight of all the stuff that is right at our feet sometimes and get caught up in stupid stuff. Cancer makes you stop worrying about stupid stuff. About the only good thing about it I can come up with
For those of you in the beginning of the journey, the caps are really fantastic. They let you retain your dignity, your privacy and your sense of self. They allow you to move on as soon as the chemo effects have worn off. I am so glad I found them and so glad I used them.
Good luck to you all!
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Schoolmom - I know you must be terrified. Its a horrible place to be. I have been praying for you that its all a big mistake or explainable by some other non-threatening issue. Lots of ((((((hugs)))))).
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Good morning ladies. Had the CT yesterday. My veins are very tiny and scar tissue around from all the pokes. The first IV try did not work. The second worked with a tiny needle. Unfortunately my moving around for the first part of the CT dislodged the needle and the contrast dye leaked down my arm instead of in my vein. The tech fixed it and we finished.
Trying to stay positive that the CT will be clear.
Does anyone know if I was using flonase, claritin, tylenol sinus etc prior to PET if it would have created the mild scatter of lymph node enlargement around my chest. I neglected to share with onc and he was bewildered by the configuration , asked if I had been sick and did say it was MILD enlargement. Just trying to work out a scenario in my head. I don't understand why if there is a 1 cm spot in the lung that it wasnt killed off by the chemo I had from 11/2 to 1/13.
Sorry for rambling. Check in later.
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schoolmom - Maybe you have some sort of low grade infection that the lymph system is trying to knock out and that's why some of your lymph nodes are slightly enlarged. Here's hoping its as simple as that.
I didn't quite understand, did you tell your oncologist about the over the counter meds you were taking for your symptoms? Could you have a sinus infection?
When will you know the results of your scan?
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Schoolmom - Any news from the CT scan? I think you have the review of your previous tests coming in tomorrow?
Ladies - I survived TC#2 and my MO told me that most women have lost a lot of hair or all their hair by now but he didn't notice any loss with me. However, a lot more came out yesterday and by the time I looked in the mirror this morning I noticed a couple bald spots. One is about the size of a dime in the back of my head and the other extends to the right from the back of my part. Cripes, day 22 and bald spots already. However, I am not giving up because I still have most of my hair. I am hoping the shedding slows but frankly it is picking up speed the last few days.
I have not yet had hair nightmares because I'm too busy having cancer nightmares. The teeth falling out nightmare is actually one of the most common universal dreams. People all around the world, including me, have had that nightmare many times. I have great teeth and was reassured the current treatment won't mess them up. They better be right. Bald, flat chested and gumming it is not the look I am aiming for.
Stephanie - I am walking around with big heavy bags. :P I'm hoping for tiny light bags soon. Too funny.
Sciencegal - Upon your recommendation I ordered the toppik fibers. I ordered the hair building fibers, spray applicator and hairline optimizer. Thank you for this recommendation. I would never have known to try this. Based upon the photos on the website, it looks like it may well disguise my bald spots. I am also hoping they start to fill in quickly as you suggest. I keep thinking back to the old time commercials for the spray on hair in a can. LOL With the toppik fibers, can I leave them in at the end of the day or do I need to remove them? I am hoping I can just spray it on and leave it until the next washing.
PatinMN & Marley - I believe the product you're referencing is Color Mark. It should be arriving here any day.
Yesterday I met with the social worker at the cancer center. What a waste of time that was. She told me that there are no counselors who specialize in oncology. Total BS. She suggested I see someone for "Women's Issues". She even recommended someone who works with domestic violence. Are you kidding me? I have a lot of problems but family violence isn't on the list. What a moron. There are many counselors who work with cancer. I told her I'd find someone myself and she thought that was a good idea. What a joke. Totally unethical not to offer to assist me in a search. What she doesn't realize is that I'm a Licensed Professional Counselor with 30 years of clinical experience and I run an undergraduate program to train students as counselors and social workers. I'll be using her as an example of what not to do when I return to teaching. And the dietitian I met with yesterday was equally unhelpful. She gave me handouts of websites. Whoop-dee-do.
I hope everyone is well and I appreciate your continued help and support.
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Warrior Woman, then what the heck is the social working doing at a cancer clinic if she doesn't deal with oncology? What a crock. I'd complain if I were you. Such a complete waste of resources!
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AmyQ - I agree 100%. I did post to my local group on here and received a referral within minutes for a counselor in my area who does individual and group counseling for breast cancer only! She is reasonably close to me. How our local social worker doesn't know this is beyond me. I do plan to email her with what I find so she can pass it on to others. and mention my disappointment with her skill set. I won't complain over her head but I will zing her by mentioning my credentials. That should be enough to get my point across.
BTW, if anyone needs a referral resource service I did find this:
http://www.apos-society.org/survivors/helpline/helpline.aspx
REFERRAL INFORMATION FOR CANCER PATIENTS
AND CAREGIVERSAPOS offers a Toll-Free HELPLINE ~ a national resource provided to help people with cancer and their caregivers find counseling services in their own communities.
APOS has a toll-free Helpline through which cancer patients, caregivers and advocacy organizations may obtain referrals for local counseling services throughout the United States.This referral program aims to connect cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress.
If the Helpline staff cannot find local support services and there is an immediate need for help, an APOS mental health counselor from the Helpline will continue to support them by phone while they seek professional help with coping in their community. Counseling sessions will be scheduled at the discretion of the Helpline counselor according to patient need.
To request a confidential referral, please call: Toll Free 1-866-276-7443
(1-866-APOS-4-HELP) or you may send an e-mail to the Helpline.The following information is requested:
- caller's name (spelling of the last name)
- contact phone number(s), including area code
- patient’s city/town and state of residence
- zip code of the location where you are searching for a referral
Calls are accepted 24 hours a day through a voicemail system and then handled by trained staff members who have access to a national directory of community mental health resources. Helpline inquiries will normally be returned within 24 to 48 hours.
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I've been following Amy Robach's story - she's an anchor on Good Morning America who learned she had BC during a story she did to encourage women to have mammograms. She had a MX before the holidays and I noticed a few weeks ago she cut her hair short. Today she said she's heading to the Olympics soon and will be between chemo treatment 2 & 3...I have to wonder if she is using cold caps, i know they've featured them on GMA before. I'm thinking by now she would have lost her hair and been using a wig, but this short hair looks real up close - and it doesn't look as good as I'd expect an on camera wig to look...more like the creative styles we all had to come up with in our journeys. Just wondering if anyone noticed this - it would be so great to have a celebrity user show the success of PCCs to the masses.
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I just looked her up on the internet and it says she cut her hair to "take back control of what this disease is doing to her body" but it doesn't say anything about preserving her hair through cold caps. It definitely looks like her hair and not a wig. I wonder what chemo she's getting? Perhaps it's not as toxic and that hair loss isn't a given. Anyone else know?
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I just watched a little video segment and she said her doctors told her everyone is different and lose different amounts of hair, and that she was young, so she cut it short and is hoping she'll be able to keep some...it does look good for this far in. I don't think any of our MOs were near this positive about our chances :0 It will be interesting to see how she does and I wish her all the best.
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there is one chemo regimen that has little hair loss for BC. One of my friends did it. I think it's CMF but I can't remember for sure......My friend's hair thinned but she never wore a wig. Kind of like ours I guess.....
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Yeah I have been following Amy Robach and I am not sure what regimen she is on. I actually tried to get in touch with her through twitter about using the cold caps but I never heard from her. She must be on one that does not cause complete hair loss.
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well ladies.,... TX #4 of 6 in the morning. Trying to psyche myself up. I will be so happy when all of this crap is behind me!
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