Cold Caps Users Past and Present, to Save Hair
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I did TCH plus perjeta for 6 rounds and am on Herceptin/Perjeta every 3 weeks. I am 4 weeks PFC and had my first Herceptin/Perjeta last week. I too read about the hair loss and asked the docs and nurses they told me no to the hair loss,
So far I have had alot more shedding the first couple of weeks following my final treatment, but just Monday it seemed to have slowed down I had some lousy side effects with all 4 drugs, rash, diarrhea, burning eyes, bad metallic taste and very tired for first 4 or 5 days. and just some neuropathy in my feet which started after the 5th treatment
The only real significant side effect I am seeing with H&P is muscle pain in my thighs and continued neuropathy. I have a runny nose, but not too bad. My taste is off slightly, I can eat but everything tastes a little different.
Also, re hair, I have noticed growth over my ears which thinned the most, I also noticed some growth on my chin (oh yay) and little bit on my eyebrows.
Hope that helps
Sue
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Thanks Sue! Are you planning on continuing the use of your cold caps for a while, or sending them back? And it sounds like your cold cap experience was pretty good, are you pleased with your results?0 -
those caps were packed and out the door by 9 a.m. the next morning haha, my experience was pretty good, If you didnt know me you would never know that I went thru chemo, other than now my hair isnt blown out and colored the way I would normally wear it. I really havent worn mascara for the majority of the time, trying to not stress my eyelashes. So far I still have about 80% of them. same with my eyebrows, I fill in with Anasatasia brow kit and it works beautifully.
I didnt save the hair that I lost, but am now only because I want to use Olia by Garnier and want to test sample it on my own hair.
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Hallo all you beautiful ladies,
Thank-you so much for all your updates and feedback on the use of cold caps. I read all the updates every night before going to sleep. Your stories have definitely helped me to stay informed and give me an idea of what to expect. They also help me stay positive that this will work.
I started chemo (TC) on Wednesday, 16 April. I am using the Elasto-Gel caps which were organized for me by my oncology centre. Unfortunately there is only one nurse at the centre who knows anything about using the caps, and her knowledge is very limited. My husband and I did a lot of research on the net and read all the posts on this site.
My husband is being so supportive and wonderful, he has taken full responsibility of the cold caps and ensuring they get changed at the right time and as quickly as possible.
We are using a conventional deep freeze and a cooler box filled with dry ice to freeze the caps.
On the day of chemo I had the caps on for an hour before the actual chemo drugs were started. We changed the caps every 30 - 40mins. I also kept the caps on for 2hours afterwards, and did another 90mins session that night and the following night.
I washed my hair for the first time the following Tuesday, 6days after chemo. There was a bit of shedding, but not too much. I comb it once a day and have been collecting the hair that sheds since my first wash.
Last Saturday (10 days after chemo) my scalp started feeling sensitive in certain spots, but it was bearable. Just sensitive to the touch. On Sunday the sensitive spots had moved to another part of my scalp. And on Monday they'd moved again.
On Tuesday I had my weekly wash, (13 days after chemo) and so much hair came out. It looked like I had a small fury animal lying in my hand basin.
At first I wanted to hide the hair from my husband as I was so disappointed and a little embarrassed, but I then decided to share it with him. His eyes teared up and I could see that he felt just as disappointed and maybe a little responsible for the amount of hair I'd lost. He wanted to throw it away as quickly as possible, get it out of my site. But I showed him my little plastic bag of hair and he understood.
Last night when I combed my hair there was once again quite a lot of shedding and this morning was a lot too, similar to what I lost on "wash day". At this rate I don't think I'll have much hair left by my birthday (12 May) or any left at the end of my 6 treatments.
I float between feeling totally disappointed and upset and then having hope and being positive that it won't be as bad with every treatment. That it will get better, that the shedding will get less and this will be successful. At times I go into a total panic and break out in a cold sweat.
I know we're all different and our bodies react in different ways, but has anyone else experience a similar amount of shedding in the first 2 weeks after chemo while using the caps? I think I just need a little reassurance. Unfortunately in South Africa hardly anyone uses the cold caps, and no one in East London (my hometown) has used them, so I don't have anyone to talk to about this.
I'd really appreciate any comments on this...
X
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Kilinki: I was exactly where you are in mid-February, right before my second chemo (days 16-20). I used Penguin Cold Caps and was about to ship them back and give up. All I could think about was my hair—how much I was losing, was the loss visible, what would I look like in two months when chemo was over. It was stress I just didn't want to deal with. But, my oncologist's nurse practitioner urged me to keep going, and told me the hair loss really wasn't that bad. The day after my second chemo, the shedding decreased significantly. There *were* a few days here and there when it picked up, but nothing like after the first infusion. As you can see from photos I posted a few pages back, I did end up with some small bald / thin-hair spots, but they're easily covered by a headband. If I combed it carefully, I could probably get away with not wearing the headband—it would just look like I have thin hair.
I'm now exactly four weeks PFC. I *think* I see some new hair growth and the shedding has slowed to a few strands when I comb my hair.
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kilinki, I hope you won't give up yet.. By day 17-21 all of the non cappers in my chemo group completely lost ALL their hair. I think if you make it to that point with hair you are doing good. One thing I noticed is that you are wearing the caps 2 hours post treatment and I think the standard us usually 4 hours so I'd recommend that going forward. I didn't save what I lost but I know others did - if you can post a picture they can weigh in to let you know how it compares. Keep the questions coming, I'm sending you all good wishes!
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kilinki, remember that when you wash only once a week, you have a whole week's worth of hair coming out. Remember that you have about 100,000 hairs on your head, and what has come out so far is only a small fraction of the total. Remember that a sensitive scalp is normal - I think we all had that. Remember to drink lots of water, especially on chemo day, to keep those drugs moving! Remember that most people who had your chemo regimen did very well with cold caps, and even if they noticed thinner hair in the end, noone else could tell the difference.
I would recommend that in addition to wearing the caps longer after chemo, you change your caps at least every 30 minutes. I know some who used Elastogel changed every 20 minutes, because they said the caps didn't hold the cold temps as well as Penguin.
Best of luck to you - keep your chin up!
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kilinki, I know it's stressful, but try to focus on the hair that's still on your head- not what fell out or what you might lose in the next few weeks. When your hair dries, how does it look?
I had a follow up visit with my oncologist this afternoon and I was so pleased to hear that there have been several other women that have successfully used cold caps at my treatment center. I was the first and made a cold cap believer out of my oncologist and her staff. She now suggests cold caps to women about to begin chemo. It really made me happy.
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Kilinky- Ii started losing hair starting day 10. I'm one week PFC and still shedding like crazy. First hair wash after last chemo I lost as much as the first hair wash between 2nd and 3rd chemo. I've shed a lot after each chemo. I'm the one who keeps count of the lost hairs when I comb. I even made a spreadsheet, ha ha that's how bad it was. I have two big bald spots along the hairline above each ear, but the hair on top covers it and I've had people compliment my hair. I had a lady said how she wished she had all this hair, I looked at her and she indeed had very thin hair and she never had chemo. I always think: If they only knew about the bald spots I'm hiding lol. The positive is that I still have lots of hair, and I'm hoping that in 3-4 weeks it will stop or get lesser and still have hair. I know everything will be fine for you.
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hey guys! I have a question - during chemo do we typically loose hair more after the third and fourth treatment? Just curious on what to expect. It's like everyday gets a little more nerve wracking
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Dlove72- I lost a lot of hair after 1st tx, and them hardly any until I was finished. I do think everyone has a different experience. It is very nerve wracking! Good luck.
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In my opinion everyone is different on the shedding pattern. I did not start shedding on my head until day 21 after my first chemo. I continued to shed for several months after I finished chemo too. It's hard to say how you will shed. I just would look in the mirror and ask myself "do I have a full head of hair?". If I said yes, then I was reaching my goal. You do have to accept that you WILL lose some hair. Your hair will not look and feel the same. In the end the goal is to preserve as much hair as possible to avoid being bald and not have to wear a wig. Even if your hair is thinner but you have a full head, you have achieved your goal. I know how hard this is....I obsessed when I went through it. Hang in there!!!
Another thing I wanted to share.....Usually I blow dry my hair straight. My hair is wavy and frizzy if not tamed by the blow dryer and styling products. Last summer I finally started to get sick of taming the beast so I started wearing it wavy and more curly in the summer when it's humid. I only wash my hair twice a week since chemo...it never gets greasy anymore. So what I noticed last summer is that I felt like I was losing a TON of hair. I constantly felt hair falling from my head on to my arms. When I washed a ton came out...way more than usual. I started freaking out. Then in the fall I went back to blow drying my hair like normal. Once I started doing that again it seems like the shedding stopped. I realized that the difference is when you blow dry and style your hair you get all the loose hair out in the brush. When you air dry...it just falls out randomly all day long. There is also much more hair coming out in the shower when you wash it because you did not get all the loose hair out with a brush. Does that make any sense? My hair is thick as ever so I know I am not losing hair....it just depends on how I style it....Have faith!!
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Mdg- that totally makes sense! I too have thick curly hair so shedding seems normal to me. I have my 3rd treatment next week and of course thinking what's going to happen next?! It almost gets so stressful overthinking lol! everyone's success stories definitely gives me faith! I also avoid hair wash as much as possible! & thank you Marley2! Everyone really does have a different experience- it always helps reading others posts.
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My shedding began after my second treatment, so after day 21. I had a heavy shed for about a week or so, then it slowed down. I would have a bit more shedding the week after each subsequent treatment, with steady shedding in-between. Shedding got lighter for about a month after my last treatment, then picked up pace again which was alarming. I continued to shed for another three months, so in all I shed for a total of 16 weeks after my last infusion.
I always had complete coverage and no one knew I had been going through chemo. I probably lost about 35% of the total volume of my hair overall. However, the hair I lost started regrowing with a vengeance about two months after my last treatment. I had an army of baby hairs coming in all over my head. It was great because it quickly filled in between the remaining hairs and gave me volume.
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hortense- your hair looks fabulous in your avatar! How many rounds of chemo did you do?
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I was noticing today how much thicker my ponytail seems, so took a comparison picture - the middle and top of my hair is definitely filling in, just the bottom that still seems thinner and regular trims are helping even that out. First picture is my pony last July and then again today...also including a recent shot of my hair now 13 months pfc.
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You look beautiful!!!
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Morning ladies,
I'm writing this post in a very emotional state... Yesterday I had major shedding and thought it couldn't get worse. But I was wrong. Today was probably double or three times the amount of hair that shed yesterday. So disheartening...
Maize, Hope, Patin, JC, and Sweetmom, thank-you so much for your comments and reassurance. Both my husband and I have read your posts and highlighted the positives and tips to improve on what we did with my first infusion.
Hope, your hair looks amazing! Well done! We will definitely extend the time that I wear the caps afterwards to 4hrs. I'm a bit nervous to post the pics of the amount of hair that I've lost so far. Worried you look at them and think to yourselves I'm being crazy even pursuing this further... I should just give up...
But here goes...
1st pic taken after my first wash ~ day 7 (I count my chemo day as day 1, not sure if that is right?)
2nd pic taken after my 2nd wash ~ day 14 (and to think I was upset about this amount of hair loss!!!)
3rd pic taken yesterday morning after my daily comb ~ day 17
4th pic taken this morning after my daily comb ~ day 18
As you can see, it has gone from bad to worse!
When I combed this morning I did it in sections so that I could actually see where most of the hair was coming from. It seems to be from the middle of my head. My hairline at the front, above the ears and around the back seems to be holding on, for now...
The little monster in my head keeps reminding me that if this is how much hair I'm loosing now, there definitely won't be any left after another 89 days (yes, I'm counting down to my last infusion date, being optimistic that I won't have to delay an infusion due to complications) of this.
And my husband keeps reminding me that the hair lying in the basin looks worse than it is as my hair is long (past my shoulders). I guess that's his way of being positive and encouraging...
Patin, thank-you for putting everything into perspective for me. We will now change the caps every 20-30 minutes and hope to have greater success. My husband wraps a white bandage around my head in order to ensure that the caps fit tighter, so it takes some time to get them on properly after every change. Below is a pic of me at my first infusion...
Me in my cap at my first infusion... Looking very glamorous!!!
JC, when my hair is dry it looks normal, unless you know me well you wouldn't even notice that it is thinner. I used to flat iron my hair so it used to be sleek and smooth. Since starting chemo I've left it to air dry. It has a natural wave so looks thicker too.
Sweetmom, I wish I had your patience to count my hair, maybe that would make me feel better and I'd have an idea of what percentage I've lost so far. Congratulations on completing your chemo. Hope your shedding slows down soon.
My oncologist insists on me having 6 TC infusions. Seems like the norm is 4 on this site... Having 6 also worries me regarding how much hair I'll have left at the end.
I'm having my port inserted on Monday. I'm even stressing about lying on the theatre table without my satin pillow case! I've seriously become an obsessive freak.
Ok, now that I've had my cry and got all emotional sharing my mornings news, let me dry my tears, wash my face and get ready to spend some quality time with my precious little boy and my amazing husband.
I hope you all have a lovely, hair loss-free day!
X
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what is the reason your MO insists on 6 chemos? You can check treatment protocols on the NCCN website. Make sure you are not getting over treated.
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Hi Mdg,
The doctors wanted me to have TAC but I had my quota of Adriamycin and can't have any more. Maybe that's why they want me to have 6 x TC as I see TAC is normally 6 infusions.
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Hi kilinki- I understand how you are feeling but don't lose hope! If weren't for ladies like mdg, dancetrance, hortense, and warrior woman whose posts I read and re-read early in my treatment- I think it would have been worse. These ladies(and others) have paved a way, showing how what you are feeling is normal, and keep on in your fight because those around have been successful. I have to admit I lost probably 40-50% of my hair- mostly because I had the hardest chemo (AC/T) and 8 rounds total. My thinnest area is around my part and the top of my scalp- but again- most people don't know about my battle when they look at me- no wig needed. I was so happy to pack up those caps and ship them back to Penguin!
I had my last chemo this past Tuesday and this picture is from after washing it yesterday- Friday. Chin up!!
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Kilinki: I wish I had taken photos, because that looks almost exactly like the amount of hair I was losing on those days. I would comb my hair over the sink and, one morning, the entire sink was absolutely coated with hair. I can almost guarantee you it'll slow down in the next few days. I had the least amount of shedding between treatments two and three. A little more between three and four, but not nearly as bad as after the first treatment.
Are you taking any supplements (biotin, silica)? And are you wearing the caps in between treatments? I did a couple days, and hour or two a day, in between.
I'm now 30 days PFC and the shedding is still very minimal—perhaps even normal (I never paid attention to hair shedding before all this, so I don't know what's normal—ha). Hoping it stays that way. I bought some all-natural hair color (Logona) and it's taking everything not to use it. The box is sitting on my bathroom counter, taunting me.
I'm going to force myself to wait two more weeks. 0 -
I had 6 rounds of TC (Taxotere and carboplatin) FWIW.
I did notice you waited a week after your chemo to wash your hair. I think Geralyn had said it was just as important to wash your hair frequently enough as it was to not wash it too frequently. She said something about getting the chemicals off the hair.
What kind of caps are you using? How about shampoo and conditioner?
Don't give up just yet. Concentrate on what is still on your head and I will be praying for you.... That the shedding slows down and your next rounds are less stressful.
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Ladies just so you know not sure if anyone experienced brow and lash thinning but castor oil actually speeds up hair growth ! If you look into it many people use it to grow out eyebrows and lashes. Just thought I would share that with everyone.!
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Kilinki- I am so sorry you are upset. (((hugs!)))
First, I believe you should change your caps every 20 minutes to be certain your scalp remains uniformly cold. Second those changes need to be made quickly, within 2 minutes total so that your scalp does not warm up. Third, I almost had heart failure when I had my big shed and saw how much was coming out. I took a deep breath, and decided to wait a bit to see what would happen. It let up after, I think, two shampoos and I kept most of my hair. I never needed a wig and no one was the wiser.
I do think that you ought to be washing your hair very gently every three days. I also think you should seriously consider using a wet hair brush instead of a wide toothed comb. I found wide toothed combs - and I tried three different kinds - took out too much of my hair. I switched to the wet hair brush and used it extremely carefully. Starting from the bottom of each section, I would work upward. I'd hold the section higher up to prevent any pulling on the scalp. I lost a lot less that way. I would only use about the front third of the brush when brushing. A wet brush can be used with surgical precision on knots by working just a few teeth in the first row of the brush into the bottom of a snarl and carefully loosening it. Also you could air dry your hair and once it is completely dry, rub dry cornstarch into any snarls to work them apart with your fingers before using the wet brush to gently loosen them from the bottom in the same way.
My nurse, who had a lot of experience with cold caps, told me that shedding starts between the 18th and 21st days after chemo and mine did exactly that. Remember, that's the point when your hair follicles are at their most delicate state, and when non-capers go completely bald - losing hanks of hair at once.
I didn't dare think the caps were working until almost my third session, but that's when I allowed myself to become a believer because I should have not had a single hair on my head by then. As far as six T/C sessions, others on here have gone six sessions successfully. Good luck!
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Hello everyone,
Praise The Lord!!!!! My mother's final chemo was on Thursday. The Elasto Gel Caps did work. She did lose some hair, but she doesn't have to wear a wig.
I'm now asking how long did you all wait before you dyed your hair. We have noticed that the texture has changed. It's more porous. I just don't want her to lose more hair.
Thank you all!!!!!
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Deelightful!
I'm so happy to hear you guys are DONE and came through withh hair! Another success story!
My texture changed some too but it is going back to normal and not so dry and frizzy now. Your mom should expect baby hairs to start popping up all over in 3-4 weeks!
Congratulations!
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Hi, I used the cold caps and kept my hair!! So happy, it thinned a lot, but NEVER needed a wig. One less thing to worry about since my diagnosis. Does anyone need cold caps? I have 6 like new cold caps for anyone who is interested. I will try and figure out how to post a pic of them or you can email me and I can email you a pic. They are in great condition, I just no longer need them and I know how expensive everything is, so just hoping to pay forward a little good will. Everyone was so nice to me when I was diagnosed! Breast cancer is awful, but doable when we have support and a few tips to make it a little less horrible.
kellisimonton@yahoo.com is my email if anyone is interested in the caps, I have a thermometer for your cooler, the instructions for the elastogels, (name of company) and can give you the tips that helps me.
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Hi ladies! The countdown is on, chemo starts weds. I couldn't get my Dr to change my infusion schedule, he wants max premed time before starting taxotere. Whatever, it just means that once I do pre and post chemo caps I'll be wearing them for 11.5-12 hours. Not excited about it, but I'm determined.
I've read somewhere about putting the caps in 2 gallon freezer bags to use only 1 cooler instead of 2. Have any of you done this? I'm hoping to make some of this easier for my mama.
I don't have chamois for under the chin strap, what else could I use?
Do I pull the caps out every 10 minutes to check them and knead them before each cap change?
Has anyone used wen shampoo? I was thinking of trying that. I'm also open to all shampoo recommendations.
Thank you
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Morning ladies,
I am writing this post in a very emotional and heart sore state.
I lost more hair on Sunday and again on Monday morning. I combed it before washing yesterday morning and a lot of hair came out again. While washing more loosened causing a big matted dreadlock on top of my head. It is terrible! Between my husband and I we are taking turns to try and remove the matted hair without cutting. But it seems like a battle we are going to loose...
Any suggestions on removing something like this? We tried detangling spray and conditioner but neither worked.
I also had my port put in yesterday, so all in all it was a bad day...
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