Cold Caps Users Past and Present, to Save Hair
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The Mods -- Thank you for the warm welcome!
I'm on day 16 of treatment #1. I go in for treatment #2 on Friday and hoping the side effects are similar because now I know what to expect. I did have a complication with Neulasta not working causing my white blood counts to go down, but that got addressed pretty quickly. I still have hair and am hoping I can keep as much of it as possible using Dignicap. We will see! While I'm not a huge exerciser, I started to take almost daily walks before my treatments started (partly to stay sane during this pandemic). However, since Dignicap is saying not to go under direct sunlight, I'm kind of afraid of going outside even with a hat! Maybe I'll wait until sunset and start exercising again!
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Dono7392:
I was able to successfully get the full cost of renting my chemo caps reimbursed by my insurance company on the first attempt!!! I was shocked when the check arrived. I had completely forgotten about submitting the claim. First, I asked the rental company (Chemo Cold Caps) to provide me an invoice with all the codes needed for reimbursement, which also included the dates of my 6 rounds of chemo. Second, I typed up a cover letter explaining that due to the quick scheduling of my first oncology appointment, getting my port in the next day & beginning chemo 6 days later, I was unable to get this cap rental pre-authorized as my insurance company, Optima Health, states must be done. In this cover letter, I explained to them that by saving my hair, I didn’t look sick. If I didn’t look sick, it boosted my self esteem & I just felt better. Maybe it helped me to not feel as sick, I don’t know. I looked normal. Well. Healthy. And they reimbursed me. I’m still surprised!
Try submitting again & include a cover letter stating why these caps are necessary to use during chemo.
Angie
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Today was day 15 for me...I had a lot of shedding and chunks of hair fell as i pulled my hands through my hair...i also freaked out and actually pulled at it...i'm totally devastated and am sure will lose all my hair by second TC in a week...my hair is tingling and itchy and am convinced it's not working...I'm so tired of waiting for next phase...Arctic told me this was normal and that without cold cap i should have lost it all by now...has anyone else had this? is this normal? i know i will lose some hair but it just seems like so much and it came out so easily...no would would know to look at me yet but am convinced i will wake up with no hair tomorrow.
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yes, it's normal. I would run my hands through my hair and it would all just come out. Even now, 4 weeks post Chemo, I comb my hair and enough hair comes out to form a little nest.
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hi I used Penguin thru 4 rounds of TC and kept 80 % thru chemo- lost another 5 % thru 5 months ongoing shedding--the caps worked great for me-- a lot of exhausting work but with my daughter as partner and supporter- pushed thru it and so glad I did- made all the difference for me e motionally--highly recommend---Penguin caps costs about 500/month--they do have and will rent used caps- are fine and sanitized -just have been returned from previous capper--this costs 300/month-you have to ask-they dont offer up front- I didnt know this at the time unfortunately -would have saved me 800 dollars--but you know what-I would have paid whatever it took to go the capping route--I kept my privacy,identity and sanity---hang in there- I am 3 years out and hair long grown back and am doing fine--hugs
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I also did Tc -see my post below with Penguin -kept 80 % hair thru it--the most important part of capping is the tight close contact with your scalp-especially the top and crown--I used all the straps and also pushed down on the cap top to hold tight to my head--it worked- I also kept capping 1/2 cycles more than the recommended. .the TC protocol has a better success rate than a protocol with an adriamycin component.
I get how hard it is to see hair come out--but try to hang in there--no matter how much you lose- the cap is giving protection to your hair folllicles and will help start regrowth sooner--some gals find it comforting to get a "topper" in their hair color to use if crowns thins a lot--also the Toppix powder supposedly is very helpful in coloring your scalp part and making hair look thicker- I did not have to go this route--keep with it- you will be glad you did-Kaylie
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Well, my next chemo is Tuesday the 23rd....I'm on day 18, hair started falling out day 14/15....it's been consistently shedding, a lot...my part is getting wider and there was a lot of pain, I can feel that it has thinned out a lot, I don't know how much I've lost, if you didn't know me or didn't look at the top of my scalp you would likely think I was just having a bad hair day...it hasn't slowed down at all from what I can tell...it looks like I might still have enough hair to cold cap on Tuesday, but jury is still out on that...I'm shocked I still have any hair at all given how much has come out already...does it slow down with continued use of cold capping? Are there 'big shedding" stages followed by less shedding? I'm feeling so let down and am tired of hearing it's only hair...obviously I wouldn't be doing chemo at all if hair was the only thing I was concerned about but this is consuming me, and I feel guilty bc so far I have felt so good since my first infusion, it hasn't stopped me in any way.
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2020 cancer-covid- hang in there; the first shed is the worst. Subsequent sheds should be slightly less. Keep going, but try to focus on the positive things and avoid the mirror. Having cold-capped, your hair will grow back sooner. Best wishes to you on the next inf
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Sorry to hear you are experiencing so much shedding. In the beginning, my hair shed a lot too but after the first month it slowed down. There was always a little light shedding throughout but I knew the cap was working because I still had hair after the first few treatments It is so important that the cap fits snuggly all around and that it stays cold throughout treatment. Give it more time and best of luck!
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About day 18, I started shedding so much every day. I would run my hands through my hair and huge chunks would come out -- enough to make a hair topper every day. I could have left the hair there and not run my hair through it, but it would have eventually come out. So, the cold cap process didn't make sense to me. I used Dignicap, and unfortunately it did not work for me. A huge sigh.
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@startingChemo - what Chemo treatment did you have?
I'm officially 5 weeks out. I'm still shedding but, it's slowed down. Hopefully, I'll start seeing growth in the next 3-4 weeks
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startingchemo - Are the instructions the same as for the Penguin caps - 50 minutes prior to chemo, during chemo, and 3-4 hours after infusion? What drug regimen are you getting?
Personally, I don't think the Dignicap not the Paxman Cooler caps get cold enough. I spoke with the inventor and if I recall correctly the cap only goes as low as 5.0° Celsius, whereas Elastogel and Penguin caps are used at a much lower temperature i.e., -28.0° to -31.0°. And, they are portable, unlike the caps with the machines.
Even if a lot of hair falls out the caps still offer some protection to the hair follicles. I believe that the hair fills in faster because of this.
Best of luck on whatever you decide ~
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Hi everyone......hope everyone is doing well.
I’m 10 months post final chemo. I used DigniCap and my hair is growing back thick and healthy, although with more curl/wave than my old hair. The new growth isabout 4” long now. I’m also on Letrozole for 7 months. I’m wondering about any women in a similar situation...how much hair do you lose on a daily basis? I know that everyone sheds hair every day. I notice that some hair I lose is short so that means I’m losing new hair. Just wondering what is normal.
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Sorry for the delay in responding! I've been recovering from an infection.
I'm on T/C. I felt the Dignicap was saving my hair to a certain extent, but the chemo and the Dignicap regimen was making it very dry. I could have left my hair alone and it would have stayed for a few weeks, I suppose, but just by lightly brushing it or running my hands through it, so much came out. It wasn't worth being so delicate with my hair when I knew so much of the hair would eventually come out. I've lost 90% of my hair.
With Dignicap, I think it's about 30 min before, during chemo and 2 hours after chemo. Honestly, though, I'm sedated through the process, so I don't know the exact times.
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I've been shedding pretty bad for the last 2-3 weeks but, I think that was my fault. I haven't put anything in my hair (besides shampoo/conditioner) and I've only done washed my hair once/week. I think my hair was just dried out and lacking nutrients. I bought an oil treatment for my hair (all healthy/organic). I spritz it once/day and it's done wonders. My shedding has slowed down and my hair feels better (soft, not brittle).
I just noticed that I've started growing hair on my arms, legs and eyebrows. I'm hoping this means the hair will start growing soon. 🤞🏻
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I've been shedding pretty bad for the last 2-3 weeks but, I think that was my fault. I haven't put anything in my hair (besides shampoo/conditioner) and I've only done washed my hair once/week. I think my hair was just dried out and lacking nutrients. I bought an oil treatment for my hair (all healthy/organic). I spritz it once/day and it's done wonders. My shedding has slowed down and my hair feels better (soft, not brittle).
I just noticed that I've started growing hair on my arms, legs and eyebrows. I'm hoping this means the hair will start growing soon. 🤞🏻
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Hi all,
A huge thank you to everyone who has taken the time to share their experience on this message board. I am almost 3 weeks PFC and read just about every post on this entire thread as I was getting started. I found so much encouragement and useful information in these posts, so I just wanted to give hope to anyone currently cold capping, or thinking about cold capping, because I had a very successful outcome on T/C x 4. Here are my main tips and takeaways:
About me: 42 years old. Used Penguin Cold Caps. Have very fine/thin hair just past my shoulders. It's hard to say how much I lost overall, (it felt like a lot as it was happening but I don't have any bald spots and absolutely no one has noticed, even people who know me very well).
General info
- Like most others have said, you WILL shed more than usual and there will be times you don't believe it's going to work. But unless you see massive bald spots, it's working so please stick with it.
- Cold capping just leaves you with kind of a permanent bad hair day, so making peace with that at some point was a helpful breakthrough.
- For most of us, keeping our hair is about privacy and not vanity, so being able to keep my privacy was well worth not being able to style my hair as well as I'd have liked.
Cold Cap Tips - (I used Penguin so some of this might not be applicable to other products)
- Good contact with the entire scalp is really important, so make sure you have good communication with the person helping you. Only you can tell if you have good contact all over, so if there is an area that doesn't feel right, take the time to make the adjustment.
- I have really thin hair, so to prevent frostbite on my scalp, I used a very thin piece of gauze on the top of my head. I doubt this step is necessary for anyone with thick hair.
- On my 3rd infusion, I finally realized that a hair-net would help keep my hair from getting caught in the velcro or sticking to the cap, and would keep the gauze in place. I didn't tuck the ends of my hair into the net because I didn't want a thicker area of hair preventing good contact with my scalp. Instead, I pulled my hair back in a low pony tail with a small, gentle, claw clip to keep it out of the way.
- In my opinion, the two gel bands were ESSENTIAL. I didn't lose any hair around my ears or nape of my neck and I'm positive this is because I used the gel bands and elastic velcro straps to ensure really close contact in these areas.
- Taking an Ativan or Xanax before the infusion really helped take the edge off. I forgot to take one during cycle 2 and that was by far the most torturous round.
- Bring a heating pad or heating blanket.
- Tell your dry ice supplier what you are using it for and you will get a discount
Hair Care
- I only washed my hair once a week with the exception of two times in which I washed it twice (four days apart). I've seen it be debated whether more washing causes more hair loss or if that set amount of hair was destined to come out anyhow. I'm not positive about the answer to that, but for me, it did seem that a LOT more came out on days that I washed, so I felt it was worth it to keep washing to a minimum (unless there was a special occasion worth adding an extra wash).
- My hair definitely got more dry and brittle but I used a few different leave-in conditioners, which really seemed to help. The two I used were Hask Manoi Coconut Oil 5-in-1 Leave-In Spray and Shea Moisture Hemp Seed Oil Lush Length Lite Leave-In. I sprayed both of these on the ends to keep my hair looking smoother and less dry.
- My hair is naturally very greasy, and before cold capping I washed every day or every other day at most. About 5 or 6 weeks in, my scalp finally got used to less washing and stopped looking so stringy and dirty between washes.
- Before I ever started, I bought Toppik hair fibers so I knew if I started to thin too much, I had a safety net in place. I didn't need to use it until after cycle 3, and I found it to be a miracle product that I will probably continue to use since my hair is very thin, even at it's best. I would use it the day after I washed and barely needed to touch it up between washes (I think this also helped keep it from looking so stringy/greasy). I was worried it would cause more hair loss but I'm almost certain it did not.
- Based on recommendations I saw here, I used Accure clarifying shampoo and conditioner, but I doubt that brand is any better than any other that is paraben/sulfate free.
- After cycle one my scalp was VERY itchy. From that point on, I mixed apple cider vinegar, shampoo, and water into a little squeeze bottle. The apple cider vinegar helped a LOT in keeping my scalp happy. I didn't have itching or dandruff once I added this to my routine.
- I know the instructions say not to use barretts, rubber bands, or clips, but I pulled my hair back and up in a light weight and gentle claw clip every day at work and it did not cause me to lose more hair. I would shed way more when I would leave my hair down. The strands would stick to my shirt or sweater and pulling it up kept that from happening.
- I trimmed my hair twice during the process and it didn't cause any extra shedding.
- My hair washing routine:
- a) In the shower, I used a large plastic cup to gently pour tepid water over my head to thoroughly wet my hair.
- b) used the squeeze bottle filled with shampoo, apple cider vinegar, and water to get the mixture all over my scalp.
- c) VERY gently massaged the mixture into the scalp. VERY GENTLY
- d) rinsed with tepid water from the cup
- e) applied a small amount of conditioner to the ends of my hair
- f) rinsed with tepid water from cup
- g) turned the water hot and washed the rest of my body
- h) VERY gently dried my hair with the soft, fluffy side of the towel
- i) VERY gently combed through, starting at the ends, with a wide tooth comb
- j) let my hair air dry
- k) gently combed through again when dry (this is the step where I noticed the most shedding)
- Typically only combed my hair once a day in the mornings and then tried to otherwise leave it completely alone.
- Used a satin pillow case
If anyone has more specific questions that I forgot to cover here, please let me know. I'm happy to pass along anything I learned through this awful experience. Cold capping is pretty stressful, but I promise when it's done you will be very glad you stuck with it.
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So glad you have come thru the Penguin capping with hopeful results-I also used Penguin--you have probably read my many posts on this topic going back to summer of 2017 when I had 4 rounds of TC--the capping for seven hours each time was daunting- my daughter was my partner and kept me going thru the last couple changes each infusion- am so glad I capped- saved 80 percent of my hair and lost another 5 percent for the 5 months of ongoing shedding, keeping my privacy and my hair made all the difference for me emotionally.
couple additional tips- I pushed down on the crown of my head as well as used all the straps- for maximun contact--never had a bald spot at all though did get frostbite the first infusion as caps were too cold--important to keep the range as instructed-
also the caps cost 500/ month but had I known I could have asked for used caps-they are fine = just used before and have been cleaned and sanitized-they would have cost 300/ month- the business office does not offer this upfront- you have to ask--they are a business for profit after all--good luck with your regrowth-- Kaylie-Candace in Vermont
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Did anyone start cold caps after their first round? I originally decided against cold capping but have recently been feeling a change of heart. Is it too late to start before round 2? My infusions are 3 weeks apart. I'm assuming the damage is already done, but I thought I'd ask if anyone else started late.
Thanks!
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SMichaels11 - it is my understanding that cold-capping must be done for the first infusion to get the best results. I am not sure if there is any benefit if you start late. Considering the cost and the effort involved, I would probably not do it at this point.
Someone else may chime in with a different opinion. Wishing you the best with treatments and feeling great afterwards.
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i looked at Dignicap website and their FAQ
When would I use The DigniCap Scalp Cooling System?
The DigniCap Scalp Cooling System will be used during each cycle of chemotherapy administration. Scalp cooling should begin with the first infusion of any chemotherapy that causes hair loss.
Will I lose some hair during scalp cooling?
Yes. DigniCap offers patients the ability to reduce hair loss from chemotherapy. However, most patients will still lose some hair. DigniCap’s multi-center clinical trial resulted in 66.3% of patients keeping at least 50% of their hair. The hair shedding process usually beings 14-21 days from your first chemotherapy infusion.
Unfortunately, I think if you don't start with cycle 1 you won't be able to save much (if any) hair since shedding starts before the 2nd cycle (TCHP)
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Thank you both for the info. I figured it was a long shot. I should have done more research prior to my first treatment, but was more concerned with the not dying part than the hair loss part. Now that I have time to catch my breath, it looked like a great option. I wish more treatment centers had cooling systems there to offer (mine does not) and I didnt have the emotional facilities at that moment to plan. Thankfully the money isn't the issue, but knowing I'm out of time for it to work is a bummer considering my hair hasn't started falling out yet.
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I didn't even know it was an option until I mentioned it to my BS at diagnosis.
I wouldn't have ended up doing it if my place didn't have the Dignicap since that's easy and the Nurse puts the cap on. If I had to carry caps and dry ice and a helper (or pay extra for the white glove service) I wouldn't have done it.
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morrigan_25 - How much did you have to pay to use the Dignicap system. I'm curious if the charge is the same everywhere it's available.
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$300/treatment
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Hi everyone,
I’m a previous cold cap user and had great success with them back in 2010.
Now I’m asking for my mother who’s had a recurrence of breast cancer after 28 years. The current protocol would have her on 12 weekly rounds of Taxol and Carboplatin, for which cold caps should work very well. The problem is with the pandemic the hospital is not allowing any helper in the chemo ward without exceptions. My mother is still determined to do them by herself. I am hoping a nurse will be able to help with the cap changes at least. But would love to know if anyone has encountered the same situation and done them by themselves?
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Morrigan_25 - Thanks for the info! That's interesting because here in LA they were charging @ $300.00 for a cap for personal use and also @$450.00 each treatment. There was a helper there to set up the machine and help throughout treatment. The patient using the caps believed it was working after 3 treatments. That's great that the caps worked for you! Personally I don't think they get cold enough. The lowest the temperature goes is -5.0° C, whereas the Penguin and Elastogel caps are used at -30.0° C. There is an alarm on the Dignicap machine when it gets to a low temp of -10.0° C.
bridetobe - In LA they allow an exception for cold cap helpers. They do screen those going inside i.e., ask questions and check their temperatures. One time they didn't let my helper in because her temp was a little high. She had just ate and drank a cup of hot coffee plus she takes medicine that can elevate her temperature. They kept checking her temp every half an hour. At some point the nurse came to me and said they were ready to start the chemo. I told her I had to wait for my helper and she said, "The drugs have been ordered and are ready." I replied, "I'm not. I am not doing chemo without my cold caps and helper." My helper arrived within 5 minutes. Did you plan to help her change the caps? I think it's too hard to do alone.
Have you checked other facilities and explained your need? If you find another place that's willing to accommodate you you can give the original facilty an ultimatum that you will do your treatment elsewhere unless they can accommodate your Mother?
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Hi makingway,
Thank you for the info. We are in Montreal and checked several hospitals and they are all doing zero exceptions letting anyone in but the patients. It also doesn’t help that her oncologist isn’t keen on cold caps. I can’t believe in 2020 she’s running into so many hurdles.
We’re hoping with weekly chemo, infusion time will be shortened and she won’t have too many cap changes to do and a nurse can at least help her put it on and off. Then as soon as she’s out we’ll be able to take over and do the cold caps ourselves. On that subject has anyone done weekly taxol+carbo and can give an estimate of the total infusion time?
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bridetobe - I'm assuming that you're using coolers with dry ice. How many caps do you have to work with? Penguin use to provide 8 caps when using coolers, and 14 when using a bio-medical freezer. But now they are only providing 4 caps when using coolers/dry ice method! I don't think that's enough caps using their instruction method. They instruct that the caps are in dry ice for 50 minutes each but I think they need another 20-30 minutes to be cold enough. Mind that they don't become hard as a rock. The caps are rotated so that the one on bottom is used first. The caps need to feel like what ceramic clay would i.e., somewhat malleable but NOT soft like pudding.
I am also getting Taxol, minus the Carboplatin. The Taxol infusion is one hour. I think the Carbo is the same, possibly less. Call and ask how long the Carbo is so you know for sure. Also, the first infusion is a little longer (one and a half an hours)because they want to ensure that you don't have any reactions to it. While the Taxol is generally only an hour the process isn't straight forward i.e., I don't walk in and am ready for the infusion. I have to check in, get weighed, take blood pressure etc., then they draw blood. They have to wait for the results before they can order the drugs for the infusion. Then they have to mix the drugs in their pharmacy. Sometimes they lag but most of the time the drugs are ready in 20-30 minutes. CBC tests take @15 minutes. CMP results take 45 minutes,so I use to get that one done prior to chemo day because it can hold up the process. While waiting I start the cap process because the caps must be worn for 50 minutes PRIOR to the chemo infusion. I let the nurse know when she can start the chemo drugs. The pre-medication can be given anytime if it isn't one that causes hair loss. I only get Kytril now but my first treatment they also gave me dexamethasone.
The first couple of caps are difficult to handle but I take two 200mg of ibuprofen before going into the infusion center. It helps take the edge off.
I have more thoughts on this. Feel free to send me a private message.
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hi- I used Penguin 3 years ago thru 4 rounds TC and saved 75-80 percent of my hair-so worked out for me- I too at first was concerned how to manage with 4 caps I was sent--but studied the process and did dry runs with my daughter and we wrote out a detailed log of when to start caps pre infusion--each change we did while there,keeping track of the cap rotations in the cooler ,and continung on at home for the 7 hours total.it does work out with 4 caps-I did cool the first cap an additional 15 minutes before starting and used a point and shoot temp checker. the bags of dry ice are much easier to work with than slabs. it is overwhelming at first trying to learn the process but with a dedicated helper and being prepared -it became routine after the first couple changes--mega important to use the tightening straps- I also pushed down on the crown with a gloved hand thru much of the time-had no bald spots at all---Kaylie/Candace
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