Cold Caps Users Past and Present, to Save Hair
Comments
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I had a few glasses of wine during chemo with no issues. It did NOT taste good so I had no more....my tastebuds were shot!
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Have had my hair tied in a pony tail all weekend and not been out so have only just noticed how thin my hair is on top. It's hard to see without mirrors so glad I looked. I'm going out tomorrow and it is definitely noticeable. I can deal with how it is now but really don't want it to get worse. Just bought a head wrap off eBay to cover the top so hopefully it's all I'll need. It really needs washing but I'm more scared than ever to wash it now! I've had two chemos so far and still don't know how this whole hair thing s going to turn out! Crossing fingers...
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I avoided wine b/c I figured that my liver, kidneys, etc., had a lot of work to do as it was, but if I was really craving it I'd have a half glass. It tastes really good when you're all done!!!
While waiting to be called for rads, I started talking to a woman who complimented me on my hair and said, "oh you didn't have to do chemo." I explained that I had and told her about hte cold caps. She said, "No one ever told me that was an option!" I still find it odd that none of the techs or other miscellaneous medical staff, who have seen my chart so clearly know I did chemo, ever comment on my hair. I don't mean, tell me it's fabulous, I just mean, remark that it's there at all!
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Hang in there Michelle! It is very nerve wracking but you will keep your hair.
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Cypher - I had the same experience during radiation and it is bizzare. It was not until one of the last of 30 treatments that one tech mentioned that I had kept my hair as if surprised. I had told them about my using cold caps in the begining, so have no idea why the silence or disinterest. She did finally ask a few questions and said she wanted to go look at the Rapunzel Project website. I hope she did.
My radiation doctor seemed bemused by my hair, as if she didn't know what to think or say about my still having it, and only mentioned it politely. The nurse who oversaw my rads was impressed by my positive outlook and surprised that I wasn't upset or depressed about having cancer and having to go through treatments. I told her being able to keep my hair made all the difference, that if I had lost it and been bald I would have felt crushed and defeated by the disease.
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Hello - I've completed my 4th round of Taxol... I take a daily inventory of how many hairs I am losing. I still have a headful. I'm religiously using the Cold Cap. People think I am bringing a picnic basket. I am the only patient there using it. I can't believe it.
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Mermaid - are you doing weekly taxol? I just finished 12 weekly taxols and I really did not notice any shedding other than what I would normally expect. I'm hoping that continues now that I am PFC! As for bringing a picnic basket, my friends and I would walk in with about 5 tote bags - lunch for 3, snacks, drinks, reading materials, all the cold cap supplies... At least I didn't have to haul dry ice, because my facility has a freezer. The freezer is in a private room, so I didn't have to do cap changes in public.
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Thanks everyone for your words of support re: husband's infidelity. Ugh, it kills me to even write that. During the week that I moved out, I found out my husband has reached out to our local New Hope pastor for guidance, started going to church (never has been to church in his life) and has been seeking counseling for his "issues". He was pleading with me to go to one session of counseling and I agreed to go SEPERATELY because of how much his actions screwed me up. I've since moved back home for selfish reasons...it was too difficult for me to go through my 2nd round of chemo without being in the comfort of my own home, especially with all the supplies that the cold caps demand. I'm still not sure if I want to end my marriage but I am making my husband take a polygraph test...and he agreed. I feel I can't trust the entire past 7 years of being together.
Aside from that drama, yesterday was my second chemo session and it went great. It was not nearly as painful as the first session. I'm thinking I was just freaking out on my first session and was going into a panick attack when the caps went on. Ativan tremendously helped this second session, what dose is everyone taking their's at? Mine is 0.5mg.
What I also found that helped tremendously is 1. having the nurse put the IV in prior to the first cap (easier to find veins if your veins like to hide like mine when you're cold) 2. Having the nurses administer the benadryl prior to the first cap. It helped me to relax tremendously and made the whole process much more tolerable.
I'de like to add a quick treat for the day: My husband begged to come with me to my chemo session which I was not very excited about, but again, I selfishly needed the help with the dry ice. SOOOO....for retribution, I asked my girlfriends to make him wear a cold cap for 30 minutes with me during my first cap. My lovely girlfriends made sure that his cap went on extra cold with no thawing
gotta love them. I took such great pleasure in seeing him suffer. I'm hoping for frostbites for him.0 -
ndmk, you crack me up!!!!!!!! Ha ha ha!
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ndmk - So glad you checked back in. I've been worried about you and I am sure so have others.
My nurse always inserted and started the IV pre-meds before my first cap and I was given Benedryl by IV also. The real chemo meds were started ten minutes after I was into my third cap. The first two caps had been on for 20 minutes each - 40 total.
Good for you to make him wear a cap! Cooled him off, no doubt. Let's hope he used the time to do some serious soul searching.
Moving home for comfort reasons makes sense. Take your time and think things through. It will be harder as Chemo Brain sets in and slows down and clouds your usual thinking process, so don't rush into anything. Give yourself time to get through treatments and time to recover before making any permanent decisions you might regret later, regarding staying or going. If you are being pressed for a decision or counseling sessions you may not be ready for, plead illness as a reason to put it/them off. No one reasonable can argue with that.
Best wishes! Frostbites hee hee
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Hi all,
I am new to the BC world, diagnosed 11/8/12.
I have been researching the cold cap idea and just wanted more information before I brought it up to my onco or chemo nurse. I start chemo on 12/26 and I have long hair to the middle of my back and am very freaked out about loosing all of it. I have handled the mastectomy alright emotionally, but I am very stressed about my hair.
So, any input, direction of sights to check out (current research), advice on what to ask my doctor about regarding the cold cap deal would be great! Thanks
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When should I expect to see shedding? Day 14 or 15? I'm on day 9 after my first t/c treatment. I have small section of dry skin on my scalp thats flaking, but so far the hair is still there.
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Hello ErinOrchid - sorry you are joining us but glad you found the cold cap page! There's a shorter version of tips (Cold Cap Usage) that will give you the condensed version. This thread is packed with info but it can take weeks to read.
I finished chemo last week - and I have my hair! Most of us (but not all) have used Penguin Cold Caps. Check out the Penguin Cold Caps website for info and research (http://www.msc-worldwide.com/indexusa.html) . Also, I have compiled over 50 academic references on scalp cooling to save hair. Happy to share it.
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Good for you, ndmk! You certainly have the upper hand in this relationship. Use it wisely with all of your facilities. You are in a vulnerable and cloudy state of mind and body so take your time with this decision.
Just completed 3 of 4 treatments today. Asked onc about taking supplements for hair and he didn't feel they made a difference. Still holding onto hair with shedding.
My helper suggested that I stop using color sticks to cover grey at roots. Told her my hair looks bad enough with serious thinning and no blow drying, I can't go grey natural too. Any thoughts on non-permanent color sticks? My brand covers quite a bit of the grey roots.0 -
Erinorchard---or any other newbie--where are you? I know many of us that have completed treatments are here to help. Coolers, thermometers and dry ice ice add up and the caps are expensive to begin with. I am in the San Francisco Bay Area and have tips and equipment. My husband and I will help out with cap changes (free) if that is needed too.
Going out to work, shopping, hiking...all of it, is much easier not looking like a cancer patient. I am only a month out and would do it again but hope I never have to.0 -
Loafer - what brand are you using? I'm using Colormark but it is expensive and only "sorta" covers my long gray roots. My colorist mentioned a spray on version that they carry in the salon, and I'm wondering how that would work. I finished chemo last week, and I don't know if I can hold out on coloring for 3 months!
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Thanks to all the have responded!
Tuka~ I am in the Sacramento area (Roseville actually)... most of my family is from the Bay! I would love to hear more about your experience with the cold caps... Could I email you??
Thanks again!
Erin
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ndmk, hilarious! It sounds like you are handling this well, considering everything.
Hortense, I mentioned it to my RO (as if it weren't obvious). She said, "oh I hear those are expensive." Yeah, they sure are. But it's not every year you "get" to have cancer, so if I have to throw some money at it to make the whole awful experience less miserable, I'm going to do it. I was pretty irritated. Also, I feel like I'm repeaeting myself so sorry if so!
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Ndmk-Thanks for the update. Have been thinking of you and glad to know tx#2 went well. It's encouraging to hear your husband has sought counseling and is working on righting his wrongs. Trust takes a long time to rebuild, but please concentrate your energy on getting well right now. Having cancer and going through chemo is tough enough without the added emotional turmoil. Your girlfriends sound like keepers!
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PatinMN - The color stick I am using is called TouchBack. I have it in rich black and it rolls on like a thick marker. Best I've found for max coverage and ive tried several. Bought it at Ulta. My husband does my top and thinks it works well. Holds up til next shampoo.
Tlym - good luck with your third treatment, I thought we were on the same schedule! Still waiting on BRAC results for this dang triple negative. No news yet.0 -
Went to the onc. today for my visit prior to # 3 on Monday. He walked in and looked at my hair and said " I'm Impressed!" He seemed totally surprised. I told him he didnt think it was going to work and he said....."I just didnt know what to expect". I told him when I finished he was going to have to accept a freezer for the facility from Rapunzel project.....he just nodded. All my labs have been good but when they tried to do labs today a different girl did it and twice my veins rolled. I told her to stop and I would come back in the morning. They said it was because I was dehydrated.....which I probably was. Good thoughts to all.
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Calling all users - A lady I helped with caps has had two treatments so far. She is a little older and is having trouble navigating this website, so I told her I would post her question and forward your responses. She wrote:
"...the first time after i lost the amount of the size of a golf ball . this time so far the size of a baseball when rolled into a ball. .... did you keep losing hair after each treatment in larger amounts? i'm really getting upset. please let me know if you or anyone else had this experience..."
I myself, shed pretty evenly so I am not much help, but hope some of you can be of help to her. Thank you!
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I can't help - didn't really shed anything appreciable until after third treatment. I do know it seems to vary a lot!
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OK. I started shedding around day 25 after the second. I mean clumps and clumps would come out by the end of the day and I am constantly picking hairs off my clothes, car seat...I mean 10-20 at a time all day long. My #3 is Monday. I feel that it is thinned alot but I had really thick past the shoulder hair. Tonight I actually lifted the back of my hair up to see hair line....OMG behind each ear it looks bald....with fuzzy hairs growing....about 2 inch square. This has been in the last 14 days. Nothing the first 24 days. Also, the parts underneath my top layer of hair have widened but are still covered by the top layers of hair which look virtually normal. Waiting for this shedding to stop. 25 more days until the last chemo on Jan 7. I worry I will have no hair left if the shedding stays at this pace for the next 25 days plus another few weeks after PFC. HELP!!!!!!
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SLB11 - Relax and try not to worry, you are too early to start shedding at Day 9. According to my breast center, which has had about 40 women use cold caps, shedding starts between the 18th and 24th days - that's the point women who do not use cold caps unfortunately lose all of their hair. As I understand cold cap therapy, the oldest hairs stop growing and are shed after chemo hits them, but they do not all come out at once. I suspect the cold caps keep the biggest, strongest hit of chemo away from the follicles on the days you get treatment, but since chemo is still in your system a while, it eventually knocks out the older weaker hairs.
My shedding began closer to the 22 - 24th day and started slowly. At first I just lost a few more than normal and thought that I was "shedding", by a week later I was losing a lot every day and began to get nervous. I hadn't understood what "shedding" meant. Now I understand, but I have also learned it is different for everyone. My experience with shedding meant that hair seemed to be falling out in small numbers all day long and I would find it all over myself and everywhere around the house.
schoolmom seems to be having a similar experience. I think she will be fine, but its nervewracking when it's hapening
A few lucky ladies don't seem to shed much, but I think they are not the norm and I was not among them. I always had a few hairs hanging below the others with more trailing down my sweaters and draped across my sleeves. I'd pick the hanging ones off only to find they seemed to pull others off my head with them, which didn't make me happy. I started getting nervous and wondering if the cold caps were working - just as many of us have before realizing that they really DO work.
A bunch more would come out in the shower when I washed my hair, no matter how gently I did it. I would collect what I lost from the shower mat and compare it with two samples of hair I'd lost shampooing pre-chemo. Doing that helped me put it in perspective since most of the time it really wasn't dramatically more. There were a few heavier loss days when I scooped up masses of wet hair that when dry were the size of a golf or tennis ball. That was disturbing. Those were during the heaviest shedding leading up to and around my third chemo. It slowed down considerably toward my fourth and last chemo, and stayed at the same slower rate for three weeks afterwards. Some women stop shedding about then, to my annoyance I didn't. Mine sped up again before setting down into a steady shed, stopping at 16 weeks PFC. It hasn't shed since.
I still have full coverage and have been growing lots of new little hairs to replace what fell out which are about an inch and a half long at five months PFC. Once during chemo when I was getting nervous about all the hair I was losing through shedding, I actually googled "number of hairs on a head" and was reassured to read that all of us have at least 100,000 hairs on ours and that many of us have up to 150,000. So we can lose a lot before it makes a difference.
Laura 5 - Please tell your friend that I, too, am older, I just turned 64, and had the same experience she is having. I would scoop up the lost hairs after shampooing and gather them into a ball which I kept for comparison, side by side in a row on a closet shelf. There were several times that I had fluffy golf ball sized hair balls and even a few tennis ball sized ones. (I have since thrown them all out.)
I used to get nervous when I saw how much lost hair I was picking up, then I decided as there was nothing I could do about what was happening I would try not to worry. What fell out came uniformly from all over, so I still had full coverage. I was very grateful that I was not bald, and I could clearly see from the length of my natural colored roots that the hair on my head was healthy and growing. My hair did look awful during chemo as it got very dry, then extremely oily and I couldn't take care of it the way I used to do. However, I would happily have a few months of bad hair days rather than a year of bald days followed by several years of regrowing hair to its former length.
Based on my experience, I am sure your friend will be fine. Her hair may end up being thinner in volume than it was, and dryer in texture as chemo seems to do a number on our hair, but she will still have hair. It will have kept growing during her treatments - if she colored her hair she will see that by her long roots, and by the time she finishes chemo some of the hair that she lost during shedding will have already started to regrow, though she may not be able to see it until it's about an inch or so long.
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schoolmom - It sounds as if your caps may not have covered those two spots behind your ears and that you unfortunately lost the hair in those places. Luckily they are hidden by the rest of your hair. It also sounds as if your hair is starting to regrow there already which is great!
You have kept your hair through the roughest time even though you are shedding a lot, so the caps are working. I believe the shedding should slow down after the third chemo, but don't expect it to stop entirely. Your rate of shedding sounds a lot like mine was. It is scary while it's happening, but try to trust that you will keep the majority of your hair.
Congratulations on surprising your medical team! Well done!
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I understand how distressing this is for both you, and the woman you've been helping. Most times I can accurately predicate how well the women I help will do, based on a variety of factors.The woman you helped with the Elastogel caps would have no hair at this point had she not used cold caps. Do the Elastogel caps come with good instruction? Is there a help line one could call for advice? While most of the women on this thread are Penguin cold cap users, a few have used Elastogels. With either of the cold cap brands currently available (Penguin or Elastogel) there are many variables that can be attributed to hair loss:
Correct Temperature
Proper Placement
Timing-Beginning treament and continued cap changes
Hair Condition
Hair Care-Prior to chemo, during, and 6 months following treatment
Each chemo treatment bears the potential risk of hair loss. Cold caps may be done correctly at the first chemo treatment, but, may not be for the later. The results aren't apparent until 2, 3 or even 4 weeks afterward. It's a good idea to have the same helper for ALL treaments.
It is of utmost importance that the caps are chilled to correct temperature range which is consistent throughout the cap. Caps need to be placed on the scalp to cover all areas of hairgrowth. The Penguin caps don't adequately cover the temple and nape areas of the scalp. This is why it is vitally important to use the 'headbands' when using the Penguin cold caps. Many Penguin cold cap user's are not provided with the cold cap headbands. Penguin user's lose more hair than neccessary because of this. And, while the Penguin Co. does provide a 10 minute video that shows the placement of the cap onto the scalp, it is NOT sufficient instruction for the most successful results.
The timing is also important. The scalp needs to be chilled at least 50 minutes prior to the admistration of hair losing chemo with a cap change not occuring too close to it's start.
Most women have been coloring or bleaching their hair for years. The condition of the hair of those who have been bleaching their is often dry and brittle. Damaged hair doesn't fare as well.
Many women don't follow the hair care protocol entirely. They want to blow dry their hair, style etc.-they cheat, and can't wait to color their hair again! The ones that strictly follow the protocol have better results.
It's hard to determine what the contributing factor is for the amount of hair loss she's experiencing. It's likely due to the caps not maintaing the cold temperature long enough between cap changes. Try to encourage her to continue with the cold cap treament. Her hair will grow faster. As well as lowering the potential risk of permanenet hair loss. PM me if you'd like my telephone number. I can walk you through the best options.0 -
Loafer, thanks for the info. I will take the Colormark I just bought back to Ulta and get Touchback instead.
As for the shedding question, Laura5, I can't offer any advice because I still have had almost none and I'm now 7 days PFC (yay!). I really hope that continues but if not I will just come back here and read all the helpful information all the prior users have posted - thanks, all!
I'm now on Herceptin alone, which I think can cause thinning and slow growth. I had my first treatment yesterday, and it was weird to be out in the main room and not in the cold cap room with my helper friends and lots of activity and conversation.0 -
Loafer-I'm every third Friday. Excited I'll be 75% done by tonight!
I had extensive shedding starting around day 18 after first treatment. Two bald patches on top of head, which thankfully can be covered with longer hairs when I do a center part. I was so upset and thought I was surely going to lose all of it. Heavy shedding continued throughout that week and then just slowed down. Hair still looks thick and full to those who don't know me. I'm having tx #3 today and hoping the shedding remains moderate.
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I would like to add I have followed the protocol religiously and still experienced shedding. My bald patches are where there is a seam in the caps (baby hairs starting to grow back in
). We practiced extensively for the week prior to chemo, and during infusion my helper was very good about making sure the velcro straps were on tightly. I wish I had known to order the gel bands, but I was told by Geralyn I didn't need them. Overall, I am thrilled with my results.0
