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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Vivianlu8
    Vivianlu8 Member Posts: 113
    edited June 2017

    Mquara i did some research because i wanted to use Paxman that is a machine like Dignicap and when i asked them ,the temperature of the machine is -4 in comparison with PCC - 30 or less and i would have to use it only 2 hours after chemo.

    Penguin told me to cold cap for 9 hours at that temperature. So i guess it has to make some difference i hope so. Last week was my first chemo FEC D a tough one so i didn't want to risk. No shedding yet. We will see 10 days more.i am pretty scared because i am working and nobody at my job knows and i don't want anybody to knows so i have to keep the hair or maybe get some extensions if i get some bald spots but not a wig. I am more stressed of my hair than the side effects of the chemo. I keep you updated.







  • cali58
    cali58 Member Posts: 92
    edited June 2017

    kshorten - you look fabulous! You are my hero! Thank you for sharing the pictures. I love your hair without the topper. You give me hope.

    GoKale - I will wait to see Dermatologist, Dr Goh, to buy the Hairmax. The problem is That she is very busy and gave me an appointment until August 25. I will be calling every day for cancellations, I might to see her sooner. She specializes in alopecia. I noticed that my hair was thinning even before chemo. I am pretty sure that I will get it soon or later, but don't want to spend $395 if she doesn't recommend it. I will keep you informed

  • kshorten
    kshorten Member Posts: 58
    edited June 2017

    Thanks Cali58, it's been a long road but I'm seeing the light at the end of the tunnel


  • rdsm
    rdsm Member Posts: 37
    edited June 2017

    I am so disappointed in the PCC. I'm on 4 rounds of TC. I'm half way done. I'm on the tail end of my pity party but tomorrow is my son's 5th grade graduation and the following day is the 5th grade pool party. I can no longer go without a head covering in public. I've chosen to do scarves. I will be making "my debut" tomorrow evening and am nervous about it.

    Also, do you think I should send the cold caps back to Penquin and save myself the remainder of the rental fee? Or continue to use the cold caps for the last two treatments hoping the follicles will be saved? Has anyone had any experience in this situation?

  • Fastgirl
    Fastgirl Member Posts: 65
    edited June 2017

    Vivianlu8--I hope it works really well for you. I too worked during chemo and didn't want anyone to know (only had to tell 3 people)--I'm sure everyone wondered what was up because I am wearing my hair so differently, but no one ever asked. Not even clients. It allowed me to be as "normal" as I could, and I was able to keep my privacy.

  • Fastgirl
    Fastgirl Member Posts: 65
    edited June 2017

    rdsm--So sorry to hear that you are not having the results you hoped for. Do I recall that you said you did chemo years ago? Have you retained more hair now at the same point in your treatment than you did then? If so, I would encourage you to continue, to save as much hair as you can. That said, I didn't have the same chemo as you. For the pool party, you could also consider wearing a light straw hat, or a lightweight ball cap. I wear a white Nike vented ball cap for outdoor events and I think it keeps my head cooler than if I didn't wear a hat. I wish you the very best

  • Soxfan75
    Soxfan75 Member Posts: 70
    edited June 2017

    rdsm - My MO said even if I lost 80% of my hair that I should continue cold capping. She said the hair will grow in faster. I hope your next two treatments are a little easier on your hair!

  • Mquara
    Mquara Member Posts: 56
    edited June 2017

    ok just got organic castor oil for my brows and lashes. Mine. Are with mascara wands and little brushes. What do I do? Brush it on and just leave it on. Neuron the rub it in and leave it? Wipe it off at some point?

  • MJPow
    MJPow Member Posts: 74
    edited June 2017

    finished with chemo 10 out of 16!! 4 AC's and six taxol. 6 more to go!

    Kshorten- you look great! So excited for my hair to grow in the bald spots!

    Mquara- I use the oil on my brows at night I didn't use the brushes just my finger. I have almost all my brows but they went back to blond and so you can't see them unless I use brow color lol I have not put any on my lashes at this point and I still have them all but have seen others with great results

    Rdsm- sorry you are disappointed! I know they say even if you lose a lot of hair it will grow back faster if you cap. How much have you lost? I would imagine you have gone through the worst shedding by now and should get less! It's hard when you go through the big shed


  • ykh
    ykh Member Posts: 43
    edited June 2017

    I have a question for the ladies who did AC+T. When did you notice the shedding slowed down? I am done with AC, starting weekly Taxol next week. I am still shedding a lot! Also, when did the regrowth start? I heard it could start during the treatment. Thanks.

  • ykh
    ykh Member Posts: 43
    edited June 2017

    MJPow - so happy for you! Your are done with 2/3 of your treatment! How do you feel on Taxol comparing to AC? Any nausea/fatigue? How do you manage icing hands/feet? Thanks.

  • rdsm
    rdsm Member Posts: 37
    edited June 2017

    Ladies, thank you so much for your words of encouragement. I am done with my pity party and have decided to Embrace the Changes that are happening. I've purchased several new hats and scarves and I'm moving forward. I think the first few steps are the hardest. I've been out and about and have seen a few friends and I'm "rocking my new look". This is my second time on this cancer journey and it has it's challenges no matter what. I think we need to experience the emotions in order to find peace within ourselves. We all need inner peace

    image

    in order to heal.

  • sherryowang
    sherryowang Member Posts: 29
    edited June 2017

    rdsm- I'm happy you are embracing the changes! I think the anticipation is always the worst - losing hair sucks. But once it happens and it's over, all we can do is move forward. Those who love us will love us regardless, and there are still so many moments of joy to be had.

    I was wondering if you ladies experienced hair growth during chemo with the hair that was protected by the caps. I'm losing a bit of hair but I feel like the hair I have left has grown a considerable amount... Is this just my imagination or have others experienced this as well

  • Radmonkey
    Radmonkey Member Posts: 38
    edited June 2017

    I have chemo every other Wednesday so I've been showering on Saturday (3 days after chemo), Wednesday (non chemo day), and Monday (before chemo).

    Yesterday (Wednesday) was shower day... Day 22 post 2 AC treatments and I had the BIG SHED. You guys were not kidding about that. Clumps, like 10-15 strands at a time. It happened all day. Today (Thursday), it finally slowed down.... I'm afraid to wet or comb my hair now. I don't want to do the Monday shower before chemo. Should I skip that shower? and just do the shower 3 days after my chemo on Saturday? Man, I thought I was doing so well.

    Will there be another BIG SHED?

    Thank you. Radmonkey.

  • Pamela23
    Pamela23 Member Posts: 394
    edited June 2017

    Regarding eyelash/ brow loss--I still had mine 2 weeks PFC, 1/2 at 1 month PFC and they were gone by 8 weeks PFC. That's when I started using the organic castor oil, They could be seen by the naked eye within 4 weeks after starting the oil and continued to grow but I started using Latisse to help. My right eye is still longer than my left eye (the side of the BC).

    This is interesting, Viviscal is #2 on the list. I think I need to get some:

    https://smarter-reviews.com/lp/sr-hair-vitamins?tr...

    Vivianlu--you WILL loose them. I used Latisse and biotin (Hair, Skin & Nails formula) for 2 years prior and during chemo, still lost 1/2 my brows and all my lashes. Castor Oil is for regrowth. When was your 1st chemo? Have you had your big shed yet?

    kshorten--LOVE the topper!! Mine was all from the bottom, I'm wondering if they have anything for that? If I didn't have my top, it's be a mullet.

    Radmonkey--You will shed again. It's not the wash itself that's damaging your hair, the hair follicle has been damaged by the chemo so the wash just loosens the hair faster. It's going to fall out of the follicle whether you wash or just comb. I know that's not what you want to hear but I want you to be mentally prepared. The good news is, the 1st wash is the worst. The second will produce a little less but you don;t get a shed like that after each treatment.

    Mquara--I'm 5 months PFC. I started using Castor oil as soon as I lost all my lashes. I just put some on my finger tips and rub it back & forth once or twice on the brow to saturate it and then closed my eyes and tapped it on them.

    GoKale--I was told to wear my compression sleeve during exercise and plane rides. Funny you say you don't wear yours for exercising. I did notice my arm got worse during radiation. My left boob is still retaining fluid too and it's been 2 months since I finished. I felt the build up after the 1st week of radiation.

  • Pambc010417
    Pambc010417 Member Posts: 89
    edited June 2017

    sherryowang - I am having a lot of hair growth too, but my hair has always grown fast. I started taxotere and cytoxan ( what were your treatments?) on April 26 and I have 3 done, and 1 more to go on June 29. I have noticed very little shedding but I'm sure there is more to come. I last colored my roots on April 11, and my hair has grown 1 1/2 inches since then. I really thought it would stop growing so I would not have gray roots showing but not! I think it is the steroids they are giving us which causes growth. I am losing my eyebrows and eyelashes.

    I am using penguin caps and I'm very pleased with the results. I make sure the caps are very snug on my head. I like their jel headband too which helps with keeping the hairline.

  • MJPow
    MJPow Member Posts: 74
    edited June 2017

    ykh- taxol is so much easier on me it's just the once a week that wears a bit. Icing of the hands and feet are cake compared to my head!! I have no neuropathy symptoms so far and all my nails are in place and totally fine so far.

    Radmonkey- I know that first shed is scary and mine continued to shed pretty good for a few weeks hang in there!! It does slow down. AC is really hard on hair.

    My shedding continued on taxol but I'm sure it's from the AC still being inside my body. It has slowed down tons thank god!! I am wearing hats more to go out and about loose fitting baseball and take it off in the car or at home.

    I appreciate all of you so much for your strength and wisdom


    MJ

  • klt5817
    klt5817 Member Posts: 32
    edited June 2017

    Hello ladies,

    My MO gave me brochure of Chemo Cold cap and Penguin cold cap to look at.  Here is the info that I got from the FAQ of the chemocoldcaps.com

    "Are Cold Caps right for me?

    Cold Caps are effective for many patients, but success rates do vary. Determinants such as age, dosage and type of treatment, and even hair characteristics are all factors that must be taken into consideration when determining whether scalp cooling will be a successful choice for you. According to researchers Wim Breed, Corina van den Hurk et al, in a study of over 1400 Dutch patients taken from the Dutch Scalp Cooling Registry, factors such as treatment length, older age, female gender and non-West-European type of hair significantly increased” the chances of heavy hair shedding. It is advised to discuss all options with your doctor prior to treatment."

    So, I did not choose to do cold cap because I'm Asian.  I bought a wig.  Just start my 1st of 4 TC chemo yesterday.

    I'm curious.  If you are non-West-European type of hair ladies, would you care to share your cold cap experience.


  • Radmonkey
    Radmonkey Member Posts: 38
    edited June 2017

    Thank you, MJ and Pam.

    Poll: When was the definitive moment you thought the cold caps were working/successful?

    I am day 24 after my first AC treatment. I think it's too early to say if it's working.

    Thank you for your comments.

  • PowerpuffinSF2017
    PowerpuffinSF2017 Member Posts: 9
    edited June 2017

    klt5817, I am also Asian and I am using cold caps. I have had 4 cycles of THP and 2 cycles of AC. I have (used to have) long think hair. I lost about 40 to 50% of my hair though I don't need to wear a wig (yet). You can tell my hair is thinning, and I can see parts of my scalp.

  • sherryowang
    sherryowang Member Posts: 29
    edited June 2017

    klt- I'm Asian. I've done 13 rounds of weekly taxol/carboplatin. I have 5 more left. I have shed a bit of hair, by now about 10%. Feel free to look at my pictures. I can tell, and my part has widened a bit but no one else can tell. People are dumbfounded when they find out I have cancer. I am a bit concerned that by the end of my 18 rounds, my scalp will be more visible, but it should grow back fairly quickly. The hair that is left on my head has probably grown 2 inches in the 4 months that I've had chemo.

    I heard that brunettes typically get better results than blondes. I would 100% recommend cold caps From what I've heard Asian hair fares pretty well, and I met a woman at my infusion center who was Asian and on taxol who literally lost no hair. She didn't even shed. Cold caps are an individual experience, and everyone gets different results because of the myriad of factors involved.

    image

    ^ for reference. My tailbone length hair is still pretty thick at the ends.


  • Vivianlu8
    Vivianlu8 Member Posts: 113
    edited June 2017

    Hello Pam my first chemo was 10 days ago. FEC D. They said is a tough one. I had to cold cap for 9 hours with PCC. The next one is in 2 weeks. Now my hair is like normal. I wash it 2 times a week and i use shampoo and conditioner and a cream for the frizzy hair of Palmers is sulphate free and no parabens. I bought it in Walmart. I guess as you said the big shed is coming. Very scary but i am going to cold cap again for 9 hours. I hope it works as i wish. I am not taking the Silica and any other supplements. I will wait until i finish 5 more. And you girls said the castor oil is once you loose them. ?



  • klt5817
    klt5817 Member Posts: 32
    edited June 2017

    Hello Sherryowang:  You look great!  I'm glad cold cap works well for you.  May be there should be a "Cold Cap Register User" in USA like the Netherland so we can benefit from each other experience.  I bet there're more Asian and non-West-European type of hair cancer patients in USA than Netherland.  Would you please ask your Cold Cap Rep about it.

  • Elberama
    Elberama Member Posts: 20
    edited June 2017

    Radmonkey - I had my weekly hair washing on Day 24 of DD AC and shed a frightening amount of hair. I washed it again on Day 31, and less hair came out onto my hands but it was still a large hairball. My Asian hair is quite coarse and frizzy if I don't blow dry it. It still looks like I have a lot of hair. My ponytail (when I grab my hair gently to see what's left) is now about 1/2 inch around, but it used to be nearly an inch. I have one more AC cycle left, then 12 weekly Taxol. I think my head might handle another large hairball being shed before I'll look like someone suffering from thinning hair. I'm hoping I won't shed on Taxol much, as others have reported. I am hoping after a couple of Taxol cycles, I can rest easy that I won't lose hair at the pace of AC.

  • MJPow
    MJPow Member Posts: 74
    edited June 2017

    imageOk so here is my hair after 4 AC and 6 taxol with 6 more taxol to go.

    It's quite thin but I'm barely losing any on taxol I do have the toppix on my part. With blond you can really see the scalp in bald spots so I bought the light brown. I washed today and when I went and looked in the mirror I had some blond/white hair filling in a bit. It wasn't everywhere but the top of my head seemed to have some growth.

    I have a countdown 40 more days till my last chemo which seems totally doable!

    I try not to think about my puffy face my watery eyes the hairs I find on EVERYTHING.

    Thanks to all of you for being so inspiring this is far from an easy road but together we are stronger ❤️

    MJ


  • Radmonkey
    Radmonkey Member Posts: 38
    edited June 2017

    thank you elberama. Hopefully I can get through the AC treatments. 2 more to go! I started with thin Asian hair. I guess, what was I expecting? I thought I would be the few that had really great results

    Mj- looks good! You totally got this!


  • MJPow
    MJPow Member Posts: 74
    edited June 2017

    hapb- thank u! yes those are my brows I started with thick ones there are some that have fallen out I bought castor oil natural riches is the name and put it on at night at bed not every night just the ones I remember. I put gimme brow by benefit on to kinda fill in the spots. My brows are super light so you can't see them unless I do! I am waiting to see if theyfall out after chemo seems a lot of people's do.

    Radmonkey thank u. Some days are harder than others looking forward to the finish line

  • kcmc
    kcmc Member Posts: 66
    edited June 2017

    Hi: I am still trying to figure all this out. I met with my Oncologist who seemed nice enough. He suggested that I use perjeta Abraxane and herceptin. 6 rounds of Perjeta and Abraxane and 17 rounds of Perception. I am ER PR positive and HER2 Positive no nodes involved. I was also told by my Oncologist this is an easier round of chemo but some insurance companies don't cover it I called the MO's office 5 times last week and got no phone call back. They keep asking me for medical code numbers but nobody seems to want to be bothered by it. Needles to say I am getting desperate. I would like to save my hair but is it doable on this kind of regimen. He was for cold capping but when i asked the nurse if any one had ever done it there she said no. I don't expect anyones help but my husband. Should I be looking into another infusion center? I am running out of time.

  • kcmc
    kcmc Member Posts: 66
    edited June 2017

    I meant 17 rounds of Hercpetin. Damn auto correct

  • Mnsnowflake
    Mnsnowflake Member Posts: 6
    edited June 2017

    I'm 6 days PFC. I did 6 rounds of TCH and I still have hair! My hair is thin to begin with and I would say I've lost 15-20% with no bald spots. I used 3 vs 4 PCC so I could save money and buy less dry ice. We bought 3 10lb bags of pellets and put them in zip locks so they were easier to move in the cooler. We used the thermometer to poke a bunch of holes in the bags so they don't try to expand and lose contact with the caps. My husband made sure to fit the caps snugly and push down on the crown before applying the extra Velcro straps. We did have trouble with temps on caps being too cold so we adjusted as needed. I capped for about 9 hours. I was gentle with my hair washing once a week using Kenras clarifying shampoo and daily provision spray on conditioner. Per some advice I found here I used Oilology coconut oil for the ends and fly aways. It is a pain in the ass but totally worth it. It's one thing to feel sick but to have to look sick too - that is just another blow I wished to avoid on this roller coaster ride. If you are on the fence I say go for it. Good luck to you all

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