Cold Caps Users Past and Present, to Save Hair
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I've been reading some past posts and I saw that some changed their toothpaste. It that necessary? PPC didn't mention that. Also, would you recommend BioSil or Silica?
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Good Luck today Sheri-CT - I take Biosil and Biotin.
7of9 - hang in there, we have the same goals. I'm on Taxotere too!
Last round this week for me, I can't believe I made it with hair!
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Happy Monday!
good luck Sheri-CT!!
I also take bio-sil or cellfood silica and will throughout my treatment. I have made an appointment with an integrated Dr.(just one due to $$) on the 11th of May in order to review all of the supplements and foods that I am /will take and eat through my chemo and radiation. If you have anything specific that you'd like me to ask her, I'd be happy to!
Also, Can anyone give me that name of a dry ice delivery company that I may be able to use? I have only been able to find it at publix and I hate to depend on that one box.
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Estela~ would you mind letting me know what chemo you are taking? Are you just taking Taxotere? or something else as well? Sorry, I couldn't find it in past posts. thanks and congrats on your amazing hair!!
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Sarahrae,
I got my dry ice from a Harris Teeter grocery store near my treatment center. It was in slab form. The manager was very helpful and actually placed orders with their supplier for me a couple of days before each treatment. I advise starting your search a couple of days before each treatment just to make sure you:all have ice available at the right time.
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Yes, I changed my toothpaste mostly because of mouth sores. I use Biotene. I can find it at the grocery store. It's great.
I had TERRIBLE mouth sores during my first round. I could only eat soft things like yogurt and soft bread for about a week. It was probably the worst part. Sucking on ice chips helped but did not totally stop them for rounds 2 and 3. But then a chemo nurse told me about a mouthwash called Prevention. IT IS A MIRACLE! I use it starting on chemo day twice a day and do it for at least 10 days. And no mouth sores!!! Here is the link.
http://www.amazon.com/Prevention-Oncology-Mouth-Ri...
Yes, I take Biosil and Silica everyday for my hair. I have lost almost no hair. And my skin is great too! I think it's the Biosil. I had acne when I first started because I had to go off the pill, but now it's gone.
Good luck, ladies! You can do it! Excuse my good mood, but today is a beautiful spring day, and my last chemo is this Wednesday!!!
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Carbonic dry ice company may be in your area. check here:
https://www.continentalcarbonic.com/dry-ice.html
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Sarahrae - I'm doing 6 rounds of Taxotere
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I'm back from my first chemo round. Honestly, the caps were a nice distraction from the chemo. We were too worried about the caps to pay attention to meds. I think we are getting the hang of it, but we did have one stressful cap change (cap 5). I don't think it was tight enough or it slipped up too high on my head. I hope I still do okay.
Most of the nurses were great and really supportive, but the one drawing the blood at the end seemed annoyed. We needed to change a cap, but she was having trouble getting blood.
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Estela, thank you so much for the encouragement. Shedding day 4 kinda suck but it's not coming out in clumps or anything. Taking my biotine and back to work.
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Sheri-CT -- I ordered the Silica from jet.com. Similar to Amazon. This is the one I bought. I bought Biosil from the GNC store.
https://jet.com/product/Alta-Health-Products-Silic...
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Hello all,
I feel like I am treading on holy ground with your courageous people. I do not have cancer. I will become a capper on Wednesday. My dear friend starts chemo this week and we are doing last minute preparations. The Arctic Cold Cap cooler should be arriving in a couple of hours and we have a Skype meeting with a nurse this evening. My question is this....any tips or tricks on loving, helping, serving while doing this task? Not only will I be a capper, but I will likely be the one that my friends turns to me to say (take these well meaning relatives out of here....I am too cold...I feel crabby...etc...) difficult things. Praying for healing and strength and peace and rest in the Lord for Debby. Thank you for sharing in any way. If I am not welcome as a first hand user of cold caps I will be very respectful and sign off. Blessings to all of you.
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Welcome, Spwins! How kind of you to be a capper for your friend. I just did my first session today and my husband was the capper. The first few caps are stressful, but the we got the hand of it. I have a different capping system, but my recommendation is to make sure the caps are tight! We had one loose cap and I'm still worried about it. Does the clinic know you are capping? I would have her call the nurse so the are prepared. It does slow the process down a little. The first nurse mentioned that I might not be able to wait the full 50 minutes, but thankfully the MO said I could wait as long as I wanted.
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Welcome Spwins... My husband is my capper and while he's kind, it's all business... Treat it like a job and man that thermometer. Be courteous but firm with the nurses if you need to. Your friend and her insurance company are paying big bucks for chemo and part of the cost is service based. She is the patient and customer. If your friend is cooling her hands and feet be sure to take with an electric blanket or handwarmers for her iv arm. Warm tea or ice chips (don't mix with dry ice!)... Be encouraging but be tough and firm. Capping is not a job for the timid. Ram and wrap that thing on tight! You sound like a great friend. My husband's advice to you is take a stop watch or wear a wrist alarm and get one of the laser thermometer from Sears they sell in the hardware section. That determines if you switch caps at twenty, twenty five or thirty minutes.
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Saw my mo (nurse mo) today. She asked about my hair and I told her I was cold capping. My third TC is Thursday. She said another patient had also done it but lost all her hair at the end:( She said the woman had thick curly hair. I think that's the real problem. Thick hair insulates the scalp and I think penguin cc needs to address that a lot more directly! Because if my hair all falls out it will be because my hair was so thick in the beginning my scalp just didn't get cold enough. Short hair and thin hair should totally be saved without ptoblems! Now my hair is so thin I have the opposite problem then my first cold capping. How to stop my scalp from frostbite. Another cold capper said where her scalp got frost biteher hair fell out:( we just can't win. But it's my third treatment and I have hair that's REALLY thin but I still have hair. It's like a catch 22!!
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Aw, Phalia, you must be feeling so stressed right now! Thin hair people don't have it easy, either - shedding is inevitable for everyone, only the amount varies - but we have less hair to start with, meaning less to lose!
Even if you lose hair due to frostbite, it will come back. I had problems avoiding frostbite each time after the second session, lost some hair in the frostbit areas, and and had thin spots at my forehead as a a result. It all grew back very quickly, and my bangs are as thick as they ever were.
I have never seen anyone on these boards on TC who capped and then lost all their hair pfc. The ones that were not successful did not make it through the final treatment and had clumps of hair falling out early in the game. Hang in there! Big hugs!
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Thanks wildflower!!❤️
The dr said the woman who didn't make it with her hair was on Adtc? Is that right?
Wanna hear something funny? Well, not HAHA funny, more like -Are you kidding me- funny... We were working in the yard on Monday and I had asked my son to pull down a dead limb, he did and the little end snapped off (the limb was about 12 feet long). So I went up and pulled on it and this huge limb snapped off in the middle and the limb snapped back and hit me in the head. That damn limb scalped my whole left side! My poor damn pathetic thin thin side has a huge swath of hair scraped off! Like seriously WTF?! One good thing is I'm glad it happened to super dumb mommy who almost maimed her 9 year old by asking him to do something dangerous! Doh😳
I know the nurses are going to ask me why My arm and head are all bruised and scabbed:
Question- best way to protect thin areas from frostbite?? I was thinking to myself that if all my hair on forehead does fall out it is a lot less time to grow bangs then 2 feet of hair;) But that is going to be a wicked bad hairstyle for a while
Hey all you wondering what to do with dry ice after treatment, we called my sons 3rd grade teacher and told her we would have a huge amount the day after treatment and she set up a science day with the science teacher to do dry ice experiments. It was awesome! We also did a ton of experiments at home with what they didn't use. Totally fun:) ps. You can make 2 liter dry ice bombs😜👍
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My head/ears feels warm today (first treatment was yesterday). Is that normal? It's not hurting, just warm.
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Phalia,
WOW! Ouch ouch ouch! Your poor noggin is taking a beating, isn't it! Hope the scrape heals soon...be sure to protect try that area during your next capping session.
I found the best solution to minimize frostbite was to lay folded gauze (the bandage type) across the thin areas. You can cut it to size so it just covers the sore areas. I used 2 thin layers of gauze ( folded). It didn't stop the frostbite completely but it helped.
SheriCT - Those sensations you are feeling are most likely your head and ears reacting and recovering from the new experience of cold they just endured. It doesn't sound serious. But don't be surprised if at some point you feel weird crawling or tingling feelings on your head over the next few weeks as you continue capping.
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Spwins -- Of course you are welcome here! What an amazing friend you are! My mom is my cold capper. And yes, she was very nervous for the first one. She even had a nightmare about not doing it right. But she got the hang of it quickly and has done a fabulous job. And, as others have said, it's so great to have her there and doing the cold capping really takes your mind off the chemo. It's a busy day! It's given us a lot of time to just be together too, and that is what you are doing for your friend. Just BE THERE.
There is a woman in my city that has a cold capping business where she either helps you get started or can actually do the cold capping for you. She knows all the little tricks. And the way she started her business was that she was the capper for her best friend 5 years ago.
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One more thing -- I have my LAST chemo tomorrow. Yes, of course, I am thankful. But I'm starting to get annoyed by everyone being so excited and wanting to celebrate. It's not over. I still have to get through the side effects of this last round, I still have my exchange surgery, and I still have herceptin until September. And I'm really starting to be more anxious about not seeing the doctor all the time and not feeling like I'm "in treatment". Anyone else? Any advice? I know I need to just say "thank you" to everyone. But it's hard to be as excited about tomorrow when it's not really going to be different tomorrow just b/c #6 is done.
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JCS28- I can relate. The end of chemo means the end of that phase. MY friends think I'll be done is 3 more treatments. I remind them that I'll be done with chemo but then I'll have reconstruction surgery, 20 rounds of radiation, and a full hysterectomy. Oh, and hormone therapy for 5 years! I'm a long time from being "done". Congrats on the last chemo and being done with THIS PHASE!
Wildflower2015- thank for the response. Do I need to worry about frostbite at thss point or would I be feeling pain? Funny, I worry the caps weren't cold enough, but I also worry they were too cold. The difference sections had different readings.
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I wish I had read up on how all systems are used. I think if you are just getting started, and have THICK hair, that you might consider wetting your hair before using caps. Here are instructions for pacman head cooling. They wet hair before. I would like to know why penguin caps don't wet hair especially thick hair. Even Arctic caps wet hair...
http://paxmanscalpcooling.com/experiences/what-to-...
Also have any of you used hair color mousse or semi perm color during treatment? I've never colored my hair in my life but my hair is just this pathetic dull weird stringy grey and I'm so not used to this
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Man I don't know why some companies aren't busting hump to perfect this process and figure out the ins and outs. They would make so much money.
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Phaila~ dang! sending love and healing to your scalp! hang in there!
I had another appointment with my onc today. this was the date that I needed to commit or refuse chemo. I spoke with her about cold capping and she proceeded to tell my that a woman recently tried it(same regime of cyclo/taxotere) and lost her hair mid way through.
she was supportive and understood my position however, probably not holding her breath for my success. not sure what I expected but after the chemo room visit i was pretty down. seems like there are several women on this panel that have a similar regimen as me and are having success.... yes?
also, has anyone had any experience with a PICC line? I am blessed to only require 4 treatments with about an hour of actual chemo infusionso the Dr. said that i didn't require a port. However, the chemo nurse said that it would be likely that I would need a PICC line as they can use each vein only once. Any advice/experience?
...feeling like a wuss today
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JCS28 - I completely understand. I had my last round today and all I keep thinking about is the side effects that I will have to endure. It's gotten real hard towards the end. But at least I can say good bye to cold capping!!! And The hair stayed, even though it's fine and I have a few baldish spots....people have no clue. And I have a head start to a full of hair. Good luck tomorrow!
Phalia - Your poor head! I hope it heals quickly for your next round.
Sarahrae - my Paxman representative has informed me they have the best results with Taxotere. I'm on taxotere, I did have more shedding than expected but in the end no one would have guessed. It's not guaranteed so they want to prepare you if it doesn't work. I have no experience with a PICC line, I have a port. In the beginning a wanted a PICC because once your done treatment it comes right out. But there's more maintenance to them. They have to flush it weekly, and you have to bag it when you shower. But since you're only having 4.....it's your decision. I'd probably do PICC. Hang in there Sarahrae, I was a wuss yesterday....
7of9 - no kidding, each hair that fell from my head would drive me up the wall.
Good luck everyone, hang in there!!
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Phaila, the temps of the Paxman system are way warmer than the Penguin recommended temp. I think the reason Penguin doesn't want you to wet your head is the risk of frostbite. With really thick hair, I believe Penguin may recommend colder temps than for thinner hair. Best to check with your Penguin contact before making any changes. on color, I don't recall anyone on this board using color during treatment. I had very gray roots, especially bad towards the end of my 12 weeks of chemo and after, and eventually started using some stuff in a tube with a wand applicator (can't remember the name of it) that I could put on my roots. There's another type of the same stuff that you apply with something that's more like a magic marker. But it sounds like that stuff wouldn't help with your hair issues
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Sarahrae,
I sucessfully kept my hair on TC, and so have a lot of other women here. I had 4 rounds of taxatere/cytoxan at 1.5 hours of infusions each time. I cold capped using the Penguin caps. I did experience a good bit of shedding during treatment and for about 10 weeks following treatment. I still estimate that I kept maybe 70% of my hair! Enough so that I never had to use a wig or even the Toppix product to conceal bald spots. And it gave me a great jump start on regrowing what I did lose from shedding.
Cold capping was the best thing I did for myself. It really helped keep my morale up during the worst, most crappy time of my life...and it made the whole cancer ordeal so much more bearable. Knowing I was not going to lose my hair on top of everything else was so worth the extra effort.
Make a decision based on what YOU want, not on some doctor's limited observation of the process. There are dozens of people on this thread who succeeded on the TC regimen!
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