Cold Caps Users Past and Present, to Save Hair
Comments
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Mari- I forgot to mention that I also had tingling in my scalp and thought that was a very bad sign. It happened after my first treatment. Every day I expected my hair to fall out but I just had some light shedding. Sometimes I had to sit on my hands to keep from scratching my scalp because of the itching. Are you washing your hair on day 3 after chemo? I started waiting till later in the day on day three, just to make sure I'm getting all the gunk removed from my scalp. My chemo was on Thursday, and I washed Sinday late afternoon.
KCMC- ask your PCC rep to send you via email the PCC Handbook which includes drugs covered. Also ask for the 8 page Hair Guide.
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BBwithBC--no worries
Pambc--I was never told my dosage, and am surprised You know yours. I was just told Ithad to do with my weight. By all means, if you want to add the dosage to your pics, maybe it will help.
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Hi Vivlaniu8, thank you for the pictures. Your hair still looks good and yeah I would not be able to tell your having issues with your hair if you didn't mention it. I was so stressed out about my hair being all tangled and matted that I could not sleep. I woke up the next morning and went to the salon and she had to cut a chunk of my hair off at the bottom on both sides. My hair is thin and the texture feels weird but it's ok. I am keeping my hair in two lose braids so it won't tangle at night and one of the nurses and the hair dresser advised that I not wash it only when it's the two day wash day before treatment, because every time I touch it, it will come out. I too hope what I have left stays the way that it is until my treatments are over. Good luck to you as well.
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thank you!!! So relieved you had itching also! I am waiting to day 4 to wash, two shampoos in the coldest water I can take!!
I had a hair cut before started chemo it's chin length but still tangles a bit. I use a leave spray. I would love to have a blow dry!!!!
Pam- thdnk for the tip on the time. I will def ask
Keeping my fingers crossed
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Mari - I would wash on day 3 like PCC states. Did Artic cap give you instructions that said something different? PCC states if the residue stays on your scalp it will burn your hair follicles and it's very important to wash on the third day. Why do you want to wait to the fourth day? Also, I have used room temperature water every time I've washed my hair. i usually put my hair a the shower cap first and wash my body in regular warm water. Then, I take the cap off and wash my hair with a light spray of room temperature water. It doesn't have to be freezing cold, just no hotter than room temperature.
I have not had issues and I use a hair dryer with cold air only on my hair, which they told me would be ok. Just make sure no heat on the scalp from the hairdryer. Heck, if I go outside and dry it, the air is fairly hot out there. I figured the cold air hairdryer is better than hot air outside. I had no issues with extra shedding from using the cold hairdryer. Good luck
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Pamela23 - PCC required me to get the dosage of each drug and the infusion time before they would give me my prescription of cap wearing time. I had to go back to the doctor and ask for this specific information. It is based on weight and that is what the M2 is for, m = weight. I guess it's a formula but PCC converted it to cap wearing time. They sent me a prescription telling me to start wearing my caps 50 minutes prior to chemo being injected, 3 hours during injection, and then I wore them 4.5 to 5 hours after the last chemo was finished. Ialways wore mine five hours afterwards. For me, I ended up wearing them nine hours the day of chemo.
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Pambc010417 - Thank you so much for the information. Now I don't feel quite so paranoid every time my head heats up outside.
Does anyone have any tips on applying Toppik? I know you can buy the applicator, but is there another method you've found helpful? I didn't see any instructions with it.
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Soxfan75 - I just sprinkle Toppik on my head and pat my hair with my hand. I did not buy the applicator.
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hi all,
Hot flashes?
Anyhow thought I'd share that I 'think? 'this product is really reducing my hot flashes. It is the magnesium I was after. I have half as many flashes and less severe. I'm not on tamoxifen yet. Crossing fingers. I take in the afternoon. Warning it may cause diarrea! I have opposite problem so it's great for constipation!
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elastogel thank u!! Mine are a little better on taxol than AC but still at night I str
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mj- maybe the magnesium will help! As always ask your doctor before you add the stuff to your diet. It may give you horrid diarrhea on taxol! I had every kind of poo problem with the taxol.
This aweful stuff will be over before you know it! It's the tamoxifen and AIs side effects with hot flashes many of us have to learn to deal with. I'm sleeping better now with the magnesium and melatonin. Crossing fingers on Tamoxifen.
All during chemo my sleep, hot flashes, and poo problems were way worse. Things will get easier!
Hugs e
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Hello! I had my 2 chemo last Wednesday i washed my hair Saturday and was expecting another big shedding and it didn't happen yet. I still have my head full of hair except the hairline where i had the pony tails tangled. Because those pony tails were the longest part of my hair now i have it short. I dont leave it loose because i had long curly hair and i dont want nobody to notice that i cut it or something is happening. I am afraid of washing it 2 times a week. What do you suggest? I have 4 more to go and the last 3 docetaxol. Do you think with that the shedding is going to be worst?
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Viviumlu8--I was on a weekly treatment and advised by PCC to wash once a week, 3 days after chemo. Sounds gross, but it was tolerable, and I think you scalp/hair gets used to the infrequent washing. So if you are fearful of washing twice per week, perhaps stretch that out a bit, but be sure to wash 3 days after chemo to eliminate the chemo buildup.
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today I had my first big shedding, how scary! I have now a bold spot on top of my head size of a big grape and all over thinned. All the nots every where, never understood all the posts about nots. My hair is chin length and sort of straight. I have my second chemo on Monday, not sure how I will bring myself to wash my hair ever again!
With the cold caps, is there always thinning? Wonder if it's just the process or is not eorking
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hi Mari, I'm 5months PFC and yes there is thinning and shedding. It's normal. But I know how you feel. Every time I had wash day I cried in the shower because I was so scared. Don't worry you will get through this.
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My head was itching so i washed my hair after 4 days, i was scary because what i heard about the second chemo big shedding again and i shed but very little. So i hope it will be like that everytiime. I have more rounds to go. Keeping positive.
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vivianlu8, I haven't started capping yet (I have surgery to clean up a positive margin next week then start chemo on 7/28), but I have gotten the hair care info from penguin cold caps, and they are very specific about needing to wash your hair the 3rd day after chemo.
This is what they said about the timing: "wash your hair on the 3rd day after treatment, your hair can be washed before if you want to but must be washed AGAIN on the 3rd day. This is because the liver is cleaning the blood and some of the chemical gunk it leaves through the skin and scalp.... if left on the scalp after the 3rd day it can mildly burn the scalp and leave it red and sore."
The itchy scalp you experienced may have been from the chemo being released thru your scalp. I haven't read anything about changing bedding during chemo, but based on this, will also plan to wash linens on day 3 as well.
Glad to hear you had very little shed and hope your scalp is back to normal feeling
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Yes Willow I washed my hair the 3er day after chemo for sure. And between treatments i will try to wash it only 2 times a week. I will see how it goes. I hope it will go ok.
Thank you.
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I finished 4 AC treatments, 3 weekly taxol. I lost tons of hair! And the shedding has not slowed down!!!! I am following all Pinguin instructions, but it's not working! Should I give up and buy a wig? I have 9 more taxol treatments and if the shedding doesn't slow down, I will have nothing!!! Anyone experienced the same? I am taking biotin and silicon. Should I start taking Viviscal?
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ykh- I did Ac T I had the majority of my shedding three weeks into taxol. I did dose dense taxol. I was ready to quit thought it was a lost cause where you are now. Don't quit. Even if it looks horrible you'll get fast regrowth. I used toppik or light weight scarves for my own sanity. I think bald and possible follicle damage is something you might still want to avoid.
Though,,, I get it! You have a lot more treatments than I did on 12 weekly taxol. 12 weekly is better for neuropathy so it's a much better choice.
Hang in there. It will be over soon.
Hugs e
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Elastogelgirl, is 12 weekly taxol supposed to be easier on hair than dose dense taxol? Do you think the shedding supposed to slow down??? Btw, does toppik interact with cold capping? Should the scalp be clean before cold capping?
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ykh- I lost a lot of hair by taxol 5 then hardly any shedding at all since then! 2 more taxols and I'm done I can't believe it. I think I look at my hair in the mirror 20 times a day to see if it's growing haha It's like watching paint dry!!
I was where you are but I stuck with it! My hair is really filling in and I can see tons of regrowth. At treatment 5 I had some huge spots and could see my scalp but used the toppix and it has not interfered with cold capping at all in my opinion. I think weeks 5-7 were hardest for me as I realized most of my long hair was gone but I'm so thankful for the growth coming in. I am way ahead of where I would be had I not capped!
You are so close!!!
Elastogel- your post made me laugh about all the side effects!! My digestion is better than on AC!! Can't wait for it to be back to normal.
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Mjpow, so happy for you about your new growth! And you are almost done too!!! I had to miss 1 treatment because I had very low white blood counts!!! So, now I will finish 1 week later (if my blood counts won't get low again). Do you take Viviscal?
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HapB the shedding depends greatly on regemin and your own growth. If not doing radiation take really good vitamin, more fish and good leave in conditioner don't wash hair a lot. Use hot tools couple times a week. Wear hats etc to give hair a break. The rest is waiting game annoying but true. Hang in there!
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mjpow, did you notice new growth after you stopped shedding or while your hair was still shedding? Just wondering... thanks
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Okay I was ready to order the Penguin Cold Caps and met with the Infusion nurse for a tour and she gave me 4 Elastogel caps she said someone donated them to the infusion center brand new never used. As soon as I am finished they will go back to her. My situation is I am ER PR an HER2 positive. I will be having Carboplatin, Docetaxel, Pejeta and Herceptin. I have 6 rounds 21 days apart. Then Herceptin every 21 days for a year. They figure the process should be 5-6 hours for the chemo infusion will 4 elastogel caps be enough. will I be able to rotate them and cool them up to the right temperature? I imagine I will need a cooler, gloves and thermometer. Also do you think one helper is enough. I also have heard Elastogel is not as good as Penguin but I am not a wealthy person by any means. I called the dry ice company by me he asked me to call the day before I am going to the Dr. and he opens at 7:00 am. He will give me a discount too. He knew all about cold capping and said he would arrange caps and ice for me. Do you think 4 is enough? I know I have to cap an hour before and 3 after . Lucky me I live 15 minutes from the infusion center so that will make it easy no roadside changes of caps. Any advice you could give me would be greatly appreciated. I don't know what I would do without you ladies!
Thank you!
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KCMC-I had four elastogel caps and we only everused three. They get plenty cold.
Hugs e
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Thank you Elasttogel Giirl. I feel so lucky I just can't believe it, thank you so much for answering me. I notice they have a 1-800 number I am going to call them today. Yeah! Finally something good out of all of this.
Monica
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KCMC- you also need a temp gun..amongst other things. Other gals on this site can direct you to the best instructions. I did not have a set of rules. Be sure to follow the cold cap rules as best as you can and be careful with the caps. You need more straps and head bands to keep the caps tight. Buy a tight wide head band from Kmart it is good for the whole head. I also made more Velcro straps for over top of that. Tight and full coverage is the goal.
If you can get ice pellets from an air gas place they might be cheaper. Call around for prices.
Good luck with all
Hang in it will pass
Hugs e
Below my straps headband and I made ear covers out of baby socks 2 socks each side with a chin strap to keep them on during cap changes we also taped them down. I got frost bite on my ear early on. Make sure you don't get your ears wet!
The wide pink band goes under your chin. I have a huge head so wide and tight worked for me if your head is smaller just try and get it tight you could add a sock under your chin.
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KMC my advice is to tell penguin your regimen as if you will rent from them, to see how many hours you need to cold cap , that is the success i think. Me i have to cold cap 9 hours. And take the tips from them too.
Good luck. Although is a lot of work, stressful i think It is worth it.
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