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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Brightness456
    Brightness456 Member Posts: 174
    edited September 2017

    Willow, thank you for responding. What you've said makes sense, particularly knowing and trusting my local MO.

    I just finished reading over the "hair, hair,hair" thread and it's scary how long it takes hair to grow back and while those ladies are rocking their short hair, I much prefer at least a should length style. Although I don't know if cold capping will be successful for me, I think I definitely need to try.

  • meow0369
    meow0369 Member Posts: 126
    edited September 2017

    icandoallthings, so sorry your going through it again. How was the reoccurrence found this time around? What cap company did you use?

  • Radmonkey
    Radmonkey Member Posts: 38
    edited September 2017

    Hi Everyone.... I am officially done with chemo! I finished 4 AC and 4 taxotere aug 30. I used the penguin cold caps and lost about 50-60% of my hair. It looks noticeably thin. Thank you Elberama for tips and tricks. I will be using Toppik but I'm not very good at covering it up yet.

    Can anyone recommend hair growth shampoos? Or more tips and tricks for hair growth? How to style during the transition of growth?? I'm looking to buy Nioxin 2 vs Monat. and it looks like I should wait about 4 weeks PFC before I start using it. Viviscal states to wait 3 months PFC before starting their supplements. I'll continue biotin and Biosil. Is there another thread for hair, hair, hair after cold capping?

    You can PM me if you want to see my results or if you wanted to ask about PCC and the AC + T chemo. I am too shy to make it public especially the so-so results.

    Thanks for everyone's support during my chemo and cold capping.

  • Travel_Girl
    Travel_Girl Member Posts: 68
    edited September 2017

    Radmonkey - CONGRATS!!!!!!!!

  • Mandeola
    Mandeola Member Posts: 12
    edited September 2017

    Hi everyone…..I am new to this site and this is my first attempted post so I'm hoping I do it right! My mini story is that I was originally diagnosed with DCIS in May of 2014 and underwent a bilateral mastectomy with flap reconstruction at that time. Happily, there was no lymph node involvement so following the surgery I was sent off to live my cancer free life. Fast forward to spring of 2017 when I felt a lump……shockingly I was diagnosed with a chest wall recurrence of triple positive breast cancer. I represent an extraordinarily small percentage (approximately 1%) of people whom this happens to. I underwent a lumpectomy in May and started chemotherapy in June. I have been using the cold caps with good success but have I have a question about what happens next! When can I begin to brush, wash and blow dry my hair normally again? From what I have been able to find (which isn't much) it's anywhere from 1-3 months when my hair feels "normal" again. I am just scared to undo all my hard work and am looking for some tips from some of you who have been through this before. Thank you in advance!

  • Brightness456
    Brightness456 Member Posts: 174
    edited September 2017

    Mandeola, if you're using penguin, when you sent an inquiry to get your cold caps they sent you some PDF files. One was about hair care. I read through mine yesterday and if I recall correctly, you wait about 6 months to start treating hair normally again, although it did say each persons hair is unique.

    It all sounds rather complicated, but must be doable since so many have succeeded, right? I feel overwhelmed just from reading the paperwork..

  • Radmonkey
    Radmonkey Member Posts: 38
    edited September 2017

    Thank you Travel Girl!!!

    Mandeola, we have similar situations. I had multifocal dcis in 2011. I was told I got the "good" cancer. It was all over my right breast so the breast surgeon said mastectomy. I opted bilateral mastectomy with reconstruction. Feb 2017, I felt a lump and it was invasive ductal CA after bx. I underwent lumpectomy in April and it was larger than expected putting me at stage 2A. I just finished 4 AC and 4 Taxotere and getting 30 doses of radiation starting end of September. Although I have my hair, I can't wait for the thin areas to grow out. I'm sorry you have to deal with all this crap again.

    I'm asking the same questions about my hair. Growth, style, washing... I'm using toppik and hats but I will be going back to work after rads and I was hoping to have more hair growth....I might try minoxidil but when?

  • sherryowang
    sherryowang Member Posts: 29
    edited September 2017

    Brightness- I wore hats, wigs, spent time outside in blaring sun and heat, & I still finished with a nice, thick head of hair. I think that if these factors cause adverse effects, they are largely negligible. I would go ahead and wear the hats. If you find they cause more shedding, stop.

    Mandeola- I'm in your same position right now. I am 7 weeks PFC this Thursday (time FLIES when you're not on chemo). My shedding is starting to taper. It might actually be normal now, but I don't remember what "normal shedding" looks like. I can tell my hair is stronger, but I'm still washing it with tepid water. I have yet to graduate to a real shower, but I anticipate that I will take this step around the 10 week milestone. My hair is very long, so I use heat and blow dry, paying special attention to never hit the scalp. I say be very careful until you notice the shedding has started to dissipate. Good luck!

  • Brightness456
    Brightness456 Member Posts: 174
    edited September 2017

    Sherry, thank you for calming me. I think I'm making myself a wreck with all this worrying, but I want to be thorough and give myself the best chance for success.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited September 2017

    I am 20 days out from 1st of 4 TC. infusions and am using the Penguin Caps=-my daughter is my partner and it was a long 7 hours of changing caps every 25 minutes--but I have lost NO hair at all--next infusion tomorrow--the caps have a very good track record of success with this protocol, so is well worth the effort and cost--isnt that why we have credit cards?-lol

    I too was overwhelmed at first trying to learn all the logistics but kept at it and it started to make sense a little at a time. I was determined to do what I could to keep my hair-I was very nervous about getting the timing right- I handled that piece by writing out a schedule of when to change each cap for another and marking off a time check when changing as well as keeping a written log of cumulative time and daughter handled the caps changes with my assist and rotating the 4 caps in the cooler with the dry ice. I do not have a port- am a nurse , have great veins -only 4 treatment scheduled and did not want to risk getting a port infection-- so had my iv placed in my forearm so my hand and wrist could move freely to help with the caps.

    The first cap gave me a brief ice cream headache but it passed after about 5 minutes and rest were tolerable- The moleskin on my forehead hairline worked well and I covered my ears with my own hair. I credit my success so far with making sure the caps were as tight as possible to my scalp-did get a touch of freezer burn on top-- I also used my gloved hands to press down the caps even closer to my scalp-. I did not feel particularly cold all over but did dress in a couple layers. Do use the gel strips from your neck nape around to your forehead as well as the black/yellow straps under those to help press the cap close to your scalp

    we used an infrared thermometer- some caps came out too cold intially and the thermometer- read"low" meant was too low a temp to pick up so had to take next caps out sooner than 10 minutes prior to using so it would warm up a bit to right temp

    You have to work with your nurse as to when to start the capping- has to be 50 minutes prior to start of the chemo--you do not have to cap for the premeds--but depends on whether you have to wait the usual 30 minutes to one hour for the premeds to circulate prior to starting the chemo- -cold capping is being done more and more and infusion nurses are used to being flexible in helping to work out the timing of your meds

    I am much less nervous for tomorrow's infusion--I know it is working and that is a huge emotional boost --you CAN do this-after the first couple changes -you get into the routine of it pretty quickly. It is so worth it --go for it--!!

  • Travel_Girl
    Travel_Girl Member Posts: 68
    edited September 2017

    Brightness - this is for you - and for anyone else that wants to know ... as you are considering driving for dignicap ...

    I would think ... the positive with the manual cold caps is that you get to leave the center and swap caps out at home. Although you still wear them, you can keep them on longer and leave the center. The machines, not movable, are in the clinic and they time you. A trade off for all that extra work you have to do on your own.

    Just wanted to share with you what the Repunzelproject.org wrote to me in response to my question - "which cap is best?"

    You see - even though my place offers Dignicap - I wanted to know which is best - as I said I was willing to do anything to increase the chance of success.

    PS -- upon further research, it isn't the clinics as much - it is the protocol for Dignicap - my oncology center printed it out for me. As I asked to stay 3-4 hours.

    Here is how they responded verbatim:

    If having a chemo involving AC, we would use Penguin caps, as they appear to have the best track record with anthracyclines.

    With the taxanes, all of the caps have a good track record. The manual caps do start colder. This may matter, but there is just not enough science yet to know. The theory is the machines don't need to be as cold because they maintain a constant temperature level, where the caps warm up (and then are changed), so they have to start much colder each time.

    What we do "know", empirically, is that wearing the caps longer post infusion does "seem" to correlate with higher success. Post infusion manual cap wear time is usually recommended to be 3-4 hours. The clinics with the DigniCap sometimes allow as little as 90 minutes in the chair post infusion. So the question to ask may be how long can you stay on the machine? That's what we would want to know.
  • Mandeola
    Mandeola Member Posts: 12
    edited September 2017

    Thanks to everybody for your responses.....keep me coming!

    @brightness - I swear I have read that paperwork 100 times and still learn something new every time. The first time I read it I told my husband - we are not doing this it is too much work on top of everything else. He pushed me to do it and told me "we got this". He was right and I know you'll be glad you did it too. I am a nurse practitioner so I was also concerned about any negative impact of cooling. My MO just cited 2 new papers that came out this year with good clinical evidence to support cold caps. She is predicting the use will increase as these have just been published.

    @radmonkey - so nice to have someone else in the same boat. I'm so tired of hearing there really are not many patients like you. I'm so looking forward to getting back to my normal hair routine but seems like we are both going to have to wait for a while longer for that to happen. I am finishing my sixth round of taxotere/carboplatin/herceptin/perjeta next week and I can't wait!

    @sherry - thanks for responding! Some days the shedding is so incredible I can't believe there is still hair up there. But......I'm 5 rounds in with 1 to go and there are no bald spots which I consider a victory! I'll plan on keeping up this current routine of no real showers and ignoring my hair for a while. Definitely has been worth it though.

  • Brightness456
    Brightness456 Member Posts: 174
    edited September 2017

    Travel girl, I can't tell you how much I appreciate your input as well as everyone else's thoughts. I've decided on penguin because I really like my local MO so I want to stay close to home. I talked with a penguin rep today. She answered my questions, but I didn't officially place my order today. I'll call tomorrow.

    Kaylie, thanks for the detailed instructions. They were helpful

  • Vivianlu8
    Vivianlu8 Member Posts: 113
    edited September 2017

    Today i bought the halo extensions, although i still have hair, little in the sides, But short I am tired of the ponytail. With the taxotere the shedding is more. Tomorrow is my 5th chemo, one more to go. But as they said the shedding will continue after the last chemo. And we will have our hair normal 6 months after. So i guess like Pamela i will use it to go out snd try to feel like i used to be.

    For all the new in this site. I definitely recommend the cold caps. I used Penguin and i think it is worth it. I rent worn cold caps and they cost 300 per month and are the same. Ask Penguin they don't offer them.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited September 2017

    Hi Brightness- I still have my eyebrows and lashes though maybe slightly thinner- both are so pale anyway and I wear bangs that come over eyebrows so am not bothered by this=i do usually wear mascara so just touch the ends of whats there and looks fine--there are also individual falsh lashes you can fill in with though have not done this=

    On a good note- remember these hairs are fast growing and short--they will take very little time to come back as opposed to going bald==it will be ok

    Feel free to write with any questions about the cap use-I got great advice and support from a couple of local ladies who went thru capping successfully- I intend to play it forward for the next gals facing this-nothing like talking/ writing with one who has been there--

    I did get a plastic storage container and kept all the accessory supplies listed by Penguin to have along all together- was helpful= also got couple clipboards to clip my pre and post infusion cap change times straight

    I made a cardboard template of my forehead hairline and cut all moleskins ahead so wouldnt have to start over each time. Also found the chin strap uncomfortable as has to be tight-and using the maxipad to pad wasnt wide enough -so tried a thicker pot holder under the strap -much more comfy and tolerable

    Glad you are going with Penguin-- I dealt with Geralyn as a rep and she was very helpful--You can do this with no regrets-keeping as much hair as possible will do wonders for your emotional outlook--hug,Kaylie

  • Brightness456
    Brightness456 Member Posts: 174
    edited September 2017

    Hi Kaylie, I really appreciate your willingness to walk me through this process. It's confusing and unfamiliar!

    Today I'll place my order (I rarely order online so even that's confusing). I'm going to ask for 2-3 day delivery. I start chemo in one week so that should give me time to become familiar with everything, right?

    I can take the cooler to the dry ice store the day before and they'll fill it with 60 lbs of ice. Does the cooler have wheels and what should I do about lifting it into the car? My PT says I'm not supposed to lift anything heavy, but I may have no choice.

    What is moleskin and where do I buy it? The lady at penguin saidmpanty liners work well, but I can just imagine myself with my bright blue funny head heat and panty liners sticking out of it all over the place!Do I let the caps in my regular freezer until just before we leave for treatment or move them to the dry ice the evening before? I'll have to leave my house around 8:30am for pretreatment at 9, then chemo at 10.

    Penguin provides the thermometer, right? But I should buy our gloves to work with? I told them I have thick hair (for now) so they're sending a gold strap along with the two black ones. Is there anything else I'm forgetting?

    Thank you all for being so kind. I've always considered myself to be a strong woman. I'm usually helping everyone else, but this has brought me to my knees. It's not easy for me to ask for help, but I do it every single day on this forum.

    Oh, I'm going shopping for ph balanced shampoo, wide toothed comb and several other items that I can't remember right now. All advice welcome here!!!

  • Pambc010417
    Pambc010417 Member Posts: 89
    edited September 2017

    Brightness4 -

    I kept my caps in my own freezer starting 3 days prior to putting them on dry ice. They usually got as cold as -19 degrees Celsius in our freezer. That way it did not have as far to go to get to a -35 or -38 degree Celsius on the dry ice. My treatments were 21 days apart so I carefully laid the caps out on our pool table to dry out on sheets in between treatments. Place them cloth side, blue, down. Wipe off excess water or condensation. 3 days prior to my next treatment, I started the process over again. In my own freezer, switch to dry ice or bio freezer 1 day prior. Put caps on dry ice 4 hours prior to needing them. You can always massage them to warm them up, but you can't get them colder if they are not a -35 to -40 degrees when you pull them out of dry ice. How many caps do you have?

    Carefree thin panty liners in the pink box worked best for me to line forehead, back of neck, and to cover ears. In my case, the moleskin pulled my skin off. A local lady that helped me with the caps suggested the pantiliners because she had the same problem with moleskin. Plus moleskin can be expensive. The pantiliners can be cut to fit your hairline, and I would put them on before I left the house for treatment. It might look a little funny but it doesn't matter. Pre cut the pantyliners and put them in a zip lock bag, in case you need to replace any of them.

    I did not get a laser thermometer with my penguin caps so I ordered one from Amazon. Ask your PCC rep what type will you get. The laser works best and test the middle of the cap. The sides will be warmer naturally. You want the center to be a minimum of -32 degrees. I have thick hair so I liked them to be -35 when I put them on.

    I also put a lightweight hair net over my hair to keep it from getting caught in the Velcro from the straps on the caps and the bands. Keep you hair even thickness over your scalp, don't bunch it up. My hair is long, mid back, so I let it fall evenly under the cap. Otherwise, it will be too thick in some areas and the cold will not reach your scalp. I put a long strip of thin guaze over any part of exposed skin. I would attach the strip of guaze under the panty liner, and would move it around to cover any part of skin were exposed. I only had one part but you can put as many strips as you need.

    Make sure the cap is very tight all over your head and have someone massage it white on your head every 5 minutes to distribute the cold. I think, one thing that helped me be very successful with saving my hair is I wore the caps an hour longer than recommended by PCC. I wore them 5 hours after chemo stopped. I would change the caps just prior to start the drive home, and then I changed the rest of them at my home. A couple of times I had to stop and change them at a parking lot if the traffic was bad. I was very diligent to change them every 30 minutes.

    I'm not sure where you were getting dry ice but if you go to a supplier, sometimes they give you a very reduced price or even free. I went to a dry ice supplier and asked them if they had any broken pieces and they would give me those for free. I called them the day before I needed to dry eyes so they could save any pieces for me. These are pieces they would throw away anyway. It also helps to tell them why you need to dry ice. They always loaded the dry ice into my cooler and they put it in my car for me. I had to buy dry ice fourtimes so I started taking them cookies or donuts for helping me.

    I purchased dry ice gloves from Amazon. You do not want to touch the dry ice with any part of your bare skin because it will burn you. In addition, make sure you have at least a couple ofwindows in your car open at least an inch to let any fumes escape the car.

    I had great luck with Acure clarifying shampoo (lime green tube) and Pureology moisture shampoo and conditioner ( in light purple bottle). I made sure that the water just trickled on my hair from my shower and a room temperature or colder water. It does not have to be freezing cold but you do not want a hard force of water hitting your scalp. I'm not sure if your hair is long, medium, or short hair but I would put the Pureology moisture conditioner on the ends of my hair to keep them from getting tangled. I think this conditioner is amazing because it really relaxes the hair and keeps it untangled. I always made sure I did not put my head upside down because that seem to tangle the ends more. I also bought a silk pillowcase cover from Amazon for about $19 and that made a big difference about keeping my hair from getting tangled at night. I think I will use the silk pillowcase for the rest of my life !

    Good Luck!

  • Willow22
    Willow22 Member Posts: 104
    edited September 2017

    hi Brightness, I also used pantyliners (entire one for forehead and cut one in half, and used a half on each ear). Stayed in place well, came off easily and barely showed under the cap, so no one would know what it was. I will try to post a photo.

    Penguin says to store the caps in your freezer if it will be longer than a week between treatments, but to take them out 2 days before chemo and let warm to room temp. My treatments are every 3 weeks on Friday, so The weds before treatment is the day I shampoo my hair and take the caps out. There is no need to have them frozen before putting them on dry ice - dry ice is about minus 190 degrees, and putting a room temp cap in for the 50 minutes of cooling time actually makes it colder then my prescribed temp of minus 28 degrees, so I have to take it out 5 minutes before it is time to switch to check the temp and let it warm up for a few minutes. Remember that you are adding the caps into the cooler at intervals, so they each are at the right temp when it is time to use them... they don't all go into the cooler at the same time. The penguin rep will send you an email with your specific capping temperature and duration based on your meds and hair type, and can answer any questions you have about the timing including when to put each cap into the dry ice cooler and when to start and switch caps.

    I got the digital thermometer with my order, and while it takes a little longer to read than the scanning one (about 30 seconds), there is no issue with the time and for me, it would not be worth buying the faster one for my 4 treatments.

    The cooler they send has wheels. I get my dry ice at the grocery store, so use the cart to wheel it to my car. Each full slab weighs 10# and come in a plastic bag, so I can easily put them into the cooler one at a time. We use leather yard work gloves to handle the dry ice.

    Dry ice is frozen carbon dioxide, so it gives off that gas as it evaporates. Make sure that the cooler with dry ice is never closed tightly (otherwise gas pressure builds up inside) and that it is in a well ventilate deal space. Drive with fresh air circulating through the car (crack open windows and/or outside air coming through the vents and make sure it is parked with windows open in ventilated place overnight.

    It sounds like a lot, it you can do this!

    Willow

  • Willow22
    Willow22 Member Posts: 104
    edited September 2017

    image

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited September 2017

    Sherryowang- You look great! And congratulations on being done with chemo.

  • cali58
    cali58 Member Posts: 92
    edited September 2017

    sherryowang - You look great. Your part looks even better post chemo than pre-chemo. I also used Penguin Cold Caps, but my results were terrible. I paid $350 (plus Penguin cold cap rental) to a Penguin Cold Cap technician every time I cold capped hoping that my results would be better. I kept 20% of my hair, at the most, and I don't stop shedding even now, 14 weeks PFC. I must have less than 20% of my hair now

    Willow 22 - You're looking good and happy, even without makeup!!!

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited September 2017

    For those doing cold caps. I modified the foam band to include protection for the ears. Changing soggy panti-liners did not sound fun. I taped panti-liners to the original template, cut ear pieces from a different piece of foam, taped the head band and ear pieces together, then lay that on top of a piece of larger foam (same thickness, from walmart), then cut out a new foam band that had the ear pieces in one continuous piece. In the first picture, the green band is the three pieces of foam taped together, the red one is the final product. I did not take a picture of the panti-liners taped to the foam band, The other "bands" are "jogger bands" I used to help hold it on my head. The tape on the red one is the double-sided tape to help hold it in place. In the second picture, please note that the foam pad is too high/needs trimming on the forehead and partially covering the scalp in from - be sure not to do this, since it interferes with the cap.


    image

    Foam pad should be trimmed/placed lower so that it does not cover scalp

    image

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited September 2017

    The results from cold-capping sure vary, from highly successful to moderate-poor. I used Chemo Cold Caps. Is it just individual differences and response variation is like any other treatment? I lost more hair than I thought I would (probably lost 50- 60%), and was disappointed, but both the surgeon and oncologist were very impressed with how much I still had after 4 rounds of TC, and are advocating that the clinic offer DIGNICAP or other FDA approved. I was their first patient to try cold capping. My head is a little large, and the caps did not fit as well as they probably should, but they were in the minus 30-35C recommended when first put on. I took the temperature of the cap just before putting it on and immediately after removing it. The caps were progressively warmer when taken off with each treatment, but still quite cold. The oncologist and surgeon speculated that maybe my hair prior chemo was thick enough to provide some insulation at the start, so maybe my scalp was not getting as cold? It has come in fairly well, but is quite curly, so it is hard to compare it to the original.


    2009 ER+ left breast. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Cold Capping using ChemoColdCaps; Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately.

  • toughcookie_21
    toughcookie_21 Member Posts: 60
    edited September 2017
    I am starting chemo tomorrow. I went with chemo cold caps and my husband will be my capper. We are practicing one more time today and hoping for the best. He now has a vested interest in this working and will partly blame himself if it doesn't. He went to pick up the dry ice today and the dry ice company gave it to him for 40% off when they found out what we needed to for.
  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited September 2017

    I posted my before during and PFC pictures until 5.5 pfc

    here: https://community.breastcancer.org/forum/6/topics/...

    I guess if you have any questions you can ask them here. I"M STILL LOSING HAIR 5.5 months PFC.

  • cali58
    cali58 Member Posts: 92
    edited September 2017

    Hanging in - Thanks for your post. I remember seeing your pictures when I was on chemo and I was very encouraged by looking at, I thought, your success. I am almost 3.5 months PFC and I thought I would stop shedding at 3 months PFC. I still shed a lot every time I wash, just like you. I am washing every 3 days because I have dandruff. I am so disappointed with the Penguin Cold Caps results, after my PCC rep told me that I would have very good results with Taxotere/Cytoxan. I almost have no hair left, other than the new growth.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited September 2017

    hi brightness-few things--when your Penguin order comes you also get detailed instructions on how to work with the dry ice- and how/ when to pack the caps--during the weeks between infusion- keep the caps in the accompanying plastic bags in your regular freezer----you then have to take them out 2 days before infusion and let come to room temperature---do NOT put from your freezer directly into the dry ice--Dry ice comes in slab form and pelleted form which is easier to work with - I used 2.5 gal hefty freezer bags and filled with enough ice that the bag would lie flat in the cooler as the caps are packed flat and it you over fill bags you wont get as good contact--you have to vent the bags so the gas can vent over time. The caps used to come in plastic bins but no longer do so --

    the first time I got 50 pounds- way too much and yesterday got about 35 lbs and was plenty for working with the 4 caps and gel bands

    you start putting the caps on ice at least an hour before starting to use-you will get a diagram how to pack them -first goes in bottom of cooler and then every 20 minute you add another- you dont want caps too frozen! or will take too long to get to temp. you rotate from the bottom and return used cap to the top so so they are rotating from the bottom. I label the bags from 1-4 to keep track, and the gel bands stay on top of the uppermost layer of ice

    I used infrared thermometer and are supposed to check the main body of the cap as your guide-- I have to change every 25minutes and took next cap out 10 minutes prior to applying--dont take the cap on your head off till ready to apply the next=can be done in about a minute.

    You have to have a partner-My daughter was mine- she handled the cap changes with my assistance , and I handled the timing and kept running log of the time changes--I used a kitchen timer to keep time track. The most important keys to success is to have the caps tight to your scalp and stick to the timing as you do not want cap on your head to warm up too much. it takes 7/8 hours total -most of which continues once back home--it is a long and tiring process but hopefully worth it

    I am 22 days after first infusion--have lost no hair other than some mild shedding on days 20 and 21--this is expected as is the old hair dropping out--the caps are protecting the younger hair follicles -and penguin addresses this with a "do not Panic" reassurance--Even if you do start losing hair--keep up the capping for the duration of your treatments as will help you hair to grow back sooner

    Go on You Tube and there are several videos on applying the caps correctly- the best was----Penguin cold Caps -posted by Delilah Koch about 5 months ago -easy to understand and follow -have watched a dozen times.-

    You can get moleskin for forehead from a pharmacy- is same stuff used to protect corns on feet- can get in a roll that you cut to fit--I have long hair and draped it over my ears to protect ears tips and did fine,

    I did not get cold all over during treatment- wore a thin wool longsleeve undershirt under a loose sleeved sweater and a pair of lightweight leggings under my slacks-did fine-The ice cream headache when cap first goes on eases in 5-10--just go with it

    All I can think of for now--You can do this--just keep gong over the directions a lot --first practice with a warm cap, then one from your regular freezer-prior to actual treatment use---hugs to you--dont freak- you really can do this-after the first couple caps you get into a routine and becomes easier------good luck-we are here to help-- also you can call your rep anytime- even during your infusion =Kaylie

  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited September 2017

    Cali58,

    I encourage you to post pictures too. I think when I finished chemo, I thought my hair looked decent. My MO, who has never had a patient using cold caps, thought I would stop shedding after 12 weeks. People need to know what to expect, especially months PFC. Some (chemo patients) still say my hair looks good, but they have low expectations. I ordered some hats online and expect to wear fashionable hats this fall. I can still get away with looking pretty normal, because there are many women out there that normally have as thin of hair as I have now.

    I was on the worst dosage of chemo.... but I started with more hair than most.

  • Pambc010417
    Pambc010417 Member Posts: 89
    edited September 2017

    Hánging in - I think your hair looks good. We are our worst critic. Your drug protocol was very tough and some people do not even attempt to cold cap during AC. Your thick hair probably contributed to the success you had, and I think you will notice rapid re Growth! I'm 10 weeks post TC chemo. I did not start shedding until 2 weeks after my final treatment. I too have very thick hair so most people haven't notice that I'm losing several strands of hair, but no clumps or bald spots. I just notice my ponytail is much thinner. Stay positive and you will soon recover. I take biotin and biosil which makes my hair, nails, and eyebrows grow fast

  • Radmonkey
    Radmonkey Member Posts: 38
    edited September 2017

    Hanging in there, I would say you have great results. You do have thicker hair. I started with thin hair and I lost about 50-60% with the same chemo treatment as you. I was discouraged by my MO about cold capping but I'm glad I did it. I am still shedding about 1.5 weeks PFC and I'm hoping it slows down. Although I didn't have great success, I've come to terms with my hair loss. Cold capping gave me that time. I didn't shed very much with AC which is when I felt my worse but I looked like me and I didn't look like I was having chemo.

    Hanging in there... are you having new hair growth PFC?