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Cold Caps Users Past and Present, to Save Hair

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Comments

  • sarahrae
    sarahrae Member Posts: 52
    edited November 2016

    Runner~

    Can I ask why you are doing tamox instead of zoladex and AI's? Is it because you don't want to mess directly with your ovaries? Just curious as I am doing the shots and about to start arimidex(super nervous...) SO GLAD to hear that the tamox SEs are not too crazy.

    I am also 6 months pfc and have the most ridiculous 2 inch patch of hair growing in the exact opposite angle of the rest of my hair. Right on the crown of my head.... ha!!

    #insolidarity

  • gmmiph
    gmmiph Member Posts: 662
    edited November 2016

    I swear I'm fabulous

    image

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    I am starting chemo tomorrow and am wondering if any of you wore your cold cap home for the 4 post chemo hours. If so, how did you work the timing of it?

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited November 2016

    hi Pamela. I did not wear mine home. But next infusion I will. All you have to do is set your timer on phone. And if u live over 30min away then exit the freeway or stop somewhere like 5minutes or so before to get the cap ready. Just have it on top of the cooler ready when u open it. Did you buy the infrared thermometer

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    Thanks Hopfull2, I only live 10 min away from the hospital but my husband is stressing a bit about the timing of getting all our stuff to the parking garage and home. I'm thinking an extra 5 minutes of wearing 1 cap can;t really hurt, right?

    I didn't buy the thermometer, did you? It came with the probe one and I was looking into an infrared one but there were so many choices and I didn't have time to research a good brand. Maybe I'll get one for the 2nd tx. Anyone have a reliable brand to recommend?

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited November 2016

    Pamela I know exactly what u mean. I think for my next infusion my husbands gonna stress. Since he has to be the one changing then out. And we live 30 min away so we definitely gonna have to pull over. I got my infrared on amazon for $17.00. It's the etekcity brand -58f - -716f. It's the same one my cold cap therapist had. Good luck tomm . You will do fine. Remember to just relax

  • meow0369
    meow0369 Member Posts: 126
    edited November 2016

    Pamela, set your phone timer. I live less than 10 minutes from my treatment center too and went home with cap on while I had to be sure that I had time to get home unload and switch a cap. Or wait until you do have the time with a fresh cap. Also Home Depot or Lowes sell the infra red gun. Remember the idea is not to let your scalp warm up. Just try to relax and drink a lot of water for a few days to flush chemo out. Hugs to you!

    Also wanted to let you ladies know that I've been using this shampoo and conditioner and my hair is very soft and manageable. It's by Matrix Biolage sulfate fee, paraban free, free of harsh salts. I got it at a JCPenny salon by chance. It has Keratin in it which hair contains too. It goes on sale too for the set. image

  • Jane75
    Jane75 Member Posts: 19
    edited November 2016

    I agree with Jiffring; only 25% of hair left and most of it fell out post chemo. I am now 17 weeks PFC and am holding off a pixie cut and wait for the short hairs to grow faster. Aveda highlights 3 weeks ago made me feel a bit better! image

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited November 2016

    Deemendoza, i laughed so hard about Diana Ross. Thanks!! Yes i think shampoo does make a difference. I ran out of Acure hydrating shampoo and went back to my normal Aveda shampoo for one wash and it seemed i shedded more than usual.

    Pamela, i use two bamboo pillowcases on top of each other, so they slip around and are silky without being actual silk ($$$) or polyester satin (which feels icky to me).

  • 3mily
    3mily Member Posts: 5
    edited November 2016
    Thanks so much for all the tips ladies!

    I'd say I have 95% of my hair after four AC. Pretty cool, right? We did the five hours after the chemo each time, pretty intense.

    Meow0369, it might be because I was further along in terms of stage? And I was only 32 when diagnosed...

    Tunegrrl, thanks so much for the recommendation. I'm going to get it and wrap it around my legs while I'm in the chair.

    Thanks again, I'm feeling motivated!!
  • Jiffrig
    Jiffrig Member Posts: 158
    edited November 2016

    Wow, 3mily, that's amazing! That might be it, I was lazy and only did 3 hours, if that, after. Congratulaions

  • Luvmyys
    Luvmyys Member Posts: 67
    edited November 2016

    Thank you Jane25 and Juffrig for sharing your challenges with A/C and PCC. Jane25 - you look great.

    For you on that side of chemo, when or have you felt like you've returned to the face (not hair😉) in the mirror before chemo? I realize it has a lasting effect but the sick look, black circles under eyes, dry skin and paleness. I see people who have gone through this and they look like their old selves.

    3mily - that's awesome. Can you share how you handle your hair as far as washing, combing, shampooing?. Did you do any styling?

    I have a rep doing my caps and I keep them on for 5 hours after my treatment. This week every time I run my fingers through my normally thick hair I get 7-8 strands. After 3rd A/C last week I have lost maybe 1/4 of my hair.

    The other thing for me is the caps really smell. Has anyone noticed that? The only time I got sick after my last treatment was when I smelled some lingering cap smell on my hair day 2 after treatment. Now if I think about capping I want to get sick.. Don't know what I'll do about it but wonder if anyone noticed.Maybe it's the dry ice.

    Also my Dr. said she will switch my Taxol to 4 times every 2 weeks versus the 12 x weekly... anyone do this? It's 18 hours in the caps versus 36 hours and a lot less for the rep to come.

    Thank you ladies.. it's not all about the hair, I know, but it's a distraction from all this.. 😉


  • Jiffrig
    Jiffrig Member Posts: 158
    edited November 2016

    I did the dose dense taxol, no problems, much easier. The SEs are a bit more profound, but glad to get over with sooner

  • PatinMN
    PatinMN Member Posts: 784
    edited November 2016

    luvmyys, I believe that the dose dense taxol would be harder on your hair. I did the 12 weekly taxols, and hardly lost any hair at all (no AC first, just taxol). I don't know for sure, but it just seems logical that the higher dose would be more likely to cause hair loss. I do understand the attraction of 4 sessions instead of 12. Regarding the cap smell - I never had an issue. Are you wiping your caps down with alcohol after each chemo session? My instructions were to clean each cap with alcohol after use. (This was Penguin caps.)

  • Luvmyys
    Luvmyys Member Posts: 67
    edited November 2016

    Jiffrig - I know you went into Taxol with only 25% of hair (sorry) but did it get worse? You said you were in a wig afternoon 1st Taxol. When did it start to grow?

    PatinMN - I have a Penguin rep help me with the caps and he brings them to center. I mentioned the smell and he said he wipes them down with alcohol. It's a mixture of dirty hair and freezer burn smell.

    My Dr thought the dose dense would be harder on my hair too. Just have to see how my hair makes it out of AC.

    Also, I have not lost my body hair, it's thinned but still very much there. My nails are growing and even my Dr. says my hair has grown a lot.. my darker roots have now kind of blended in with my dry, frizzy, highlighted portions of hair.. Ugh!

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited November 2016

    Luvmyys, I too had a cold cap therapist for my first infusion last week and I did notice the smell. The caps smelled like a dirty wet towel. I think because they use those caps everyday on people. But I just received my own set of caps because my sisterwill now be doing the caps and it's a brand new set with no smell.

  • meow0369
    meow0369 Member Posts: 126
    edited November 2016

    For me the smell of the dry ice with the caps was just as bad as the treatment. It made it very difficult being nauseous having to have them on my head for 6+ hours. I had to have someone else clean the caps, etc sothey can be sent back.

  • Pamela23
    Pamela23 Member Posts: 394
    edited November 2016

    3mily--I bought a Sunbeam plush twin sized electric blanket too. Was wonderful, especially once I go t home and wore the caps for another 4 hours. Once I get tired, my body temperature seems to drop. I had my first chemo yesterday and the cold caps makes it it such a LONG day! I'm interested too on your hair care treatment since you've seemed to have got a handle on how to keep so much so far.


    Hopfull-- I agree, the Penguin system they send you is right from the manufacturer, no smells!

  • 3mily
    3mily Member Posts: 5
    edited November 2016

    Hey everyone,

    So in terms of haircare, I have short hair that I now wash only 1-2x per week with my kids' baby shampoo. No conditioner, blowdrying, hair products, brushing, bobby pins. I use a silk pillowcase (that I should probably wash again, by hand) and dry shampoo when my hair looks greasy (I got the fancy one http://www.ulta.com/perfect-hair-day-phd-dry-shampoo?productId=xlsImpprod13031193)

    But last Friday I was so cold/unprepared that I only wore the cap for 3 hours after the first of my weekly Tax+Carbo sessions. Now I feel a weird little cold spot at the back of my head. :( I don't really see a bald spot and I haven't noticed much extra shedding, so it might just be the tingling SE from the taxol.

    Tomorrow I'm going to really try to stick it out and wear for fours hours after, since I've come this far. Wish me luck! You all are great.

  • Luvmyys
    Luvmyys Member Posts: 67
    edited November 2016

    Thanks everyone for the information. I woke up this morning at 5:00am and opened up this forum (couldn't sleep) . Just the talk of the Cold Cap smell I immediately got up and had to get sick. I told my husband I might to be sedated for the next session.

    Good luck 3mily hope you stay warm for your session.

    Jiffrig due to the results from ACdid you stop capping when you started Taxol?

    Also at my treatment center they don't allow you to stay with PCC even though they have a freezer. We drive to my home with my rep. We've had to switch out once on the side of the fwy. Fun times!


  • willa216
    willa216 Member Posts: 162
    edited November 2016

    Luvmyys: 

    I know what you mean about the PCC smell.  Sorry it's been so difficult for you. Initially I  thought it was the infusion room because all my clothes would smell, which I noticed when I got home each time.  I couldn't stand to be near anything that was in that room or the sight of the caps themselves.   I see you're in CA.  Not sure if you're  open to it but I got a sublingual cannabis spray (prescription from M0) to help with nausea after chemo.  It didn't work for that but when I used it during infusion I stopped getting sick and I stopped being bothered by the smell.  Or anything else for that matter. Ha. I took an ativan prior to infusion, too,  but until I added the spray I was very unhappy.   

    3mily -  You are doing so well! Good thoughts for  your next infusions. 

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited November 2016

    Sublingual cannabis spray sounds fantastic. What are the % TCH and CBD, if you know? I was rX'd 0.5mg nabilone capsules (pure TCH) to take an hour before bed, and they lifted my nausea without affecting my consciousness. Also high CBD weed and a vaporizer, but i haven't used it as often as i thought i might. When i was queasy, i didn't want to take the chance of being queasy and baked. I'm legit with the government, which is an amusing upside to this cancer bulls**t.

  • Runner70
    Runner70 Member Posts: 177
    edited November 2016

    hi Sarahrae- I'm doing tamoxifen because I'm premenopausal. Or at least I was before chemo. I don't know if I am still or not! I think that's pretty standard for premenopausal women to take tamoxifen and postmenopause to take AI's but if you're taking zoladex then you must still have some ovary function so I'm not really sure why the difference in treatment. If you find out from your dr let me know. I'm curious! Sorry I wasn't much help.

  • Jiffrig
    Jiffrig Member Posts: 158
    edited November 2016

    No, I kept cold capping through Taxol. The smell thing is weird, my PCC did not smell. Is it just the ones that come from reps rather than mailing directly?

  • Luvmyys
    Luvmyys Member Posts: 67
    edited November 2016

    willa216 - I am the same way. Even the clothes I have worn during treatment I don't ever want to wear again. They probably don't, but I imagine they smell too. Friends made me chemo bags with all the "stuff".. Nope, don't even use them. Don't want to see them. I bought special water bottles to bring to treatment, after the treatment don't want to use them again. Last one just brought a huge Smart Water bottle, then can tossed it. Feel bad I am usually pretty upbeat but I want nothing to remember the experience. I would totally be up for the spray. My MO is a little stingy on the meds though. Ativan makes me sick, so wanted to switch to Xanax, nope. Asked for sleeping pills, nope. I have two small kids I don't have the luxury of not sleeping at night. Was told to take Ativan to sleep. Great, then mommy is tired and sick. So I take nothing.

    Jiffrig- I have always used a PCC rep for caps so it's their supply of caps that smell, bad...

    My mouth is watering up just typing this.. sorry TMI ..but it's bad.


  • kd2016
    kd2016 Member Posts: 105
    edited November 2016

    To those ladies who are on the second round of losing eyelashes and brows:

    I'm 5 months PFC (comes this Tues), and last night all of a sudden I lost half of my bottom lashes on my right eye. My question is does this mean I'll lose both lashes and brows or is it possible to keep the brows? I've been using Lattise on both lashes and brows up to this day. This is so sad and frustrating. I overall look descent but not even close to how I looked a year ago this time. When will this all end and we become physically our old self? I know mentally and emotionally we're forever changed, but looking lousy on top of it is hard to deal with. I just don't recognize myself anymore, it feels like an out of body experience, and I'm tired of listening to my close friends telling me it's just hair, or looks not important and you're cured

  • willa216
    willa216 Member Posts: 162
    edited November 2016

    Tunegrrl:  On the cannabis spray - It's an 18:1 ratio CBD to THC. I'm crazy sensitive.  There are others that have more THC. 

    Luvmyys:  Sorry your MO doesn't seem very flexible w/drugs... that must be so frustrating for you.  Good thoughts for some sleep your way.  BTW, I also had to throw out all my clothes I wore to infusion. 

    Jane:   Your highlights look pretty!

    KD:  Gosh, sorry to hear about your eyelashes.  That IS sad! I hope somebody here has some answers for you.  As you know, I'm not far enough PFC (just 2 weeks) to help you but I'm curious to see what others say.   My face looks very  different to me - literally about ten+ years older.  I don't think I have any residual steroid issues but I have sagging jowls(!) and many more wrinkles. Moisturizer doesn't seem to help.  It's as though my whole face fell.   Not amused. Anyway, I feel for you.  I haven't really been sharing many negative things with my friends but when I do I get the same comments that you do - these things don't matter.  Thankfully I do have one friend who says that of course they matter. She tells me that if she's having a really good hair day she won't run anywhere even  if she's late because if it's hot her hair will fall flat.  Or that last week in a critical (multi million dollar) client meeting she couldn't focus on her client's comments because her bangs were misbehaving and all she could think about was killing her stylist.   Naturally, I adore her.  She's actually a deep, intelligent and loving person.  Point is, I think most people think about looks even if they don't admit it. Or else they haven't been tested yet. Anyway, I'm depressed about all the changes - physical, mental, emotional, spiritual.  And the worry.  Hopefully things continue to get better with time.   Hope your brows hang on.

    Continuing good luck to all the cappers!

  • kd2016
    kd2016 Member Posts: 105
    edited November 2016

    Willa- my face looked old and droopy too, so I checked with my onco and he allowed me to get Botox and fillers 2 months post chemo. This was my first time and my face looks much better. I lost 10 pounds after chemo so that was not helping either, and I had to do something.

    My eyesight changed (weaker now) also although my onco said the impact is temporary but not true. I used to wear glasses to read and write and now have to wear them almost all the time. The list goes on and on. I'm very sad about all of it as you can relate.

    Anyway, have a lovely weekend and take good care. Hugs.


  • Luvmyys
    Luvmyys Member Posts: 67
    edited November 2016

    Hi Ladies - hope everyone is going into this weekend feeling good. Yes, I am with you ladies I am only 1/2 way done and feel like I look 10 years older. I have to say my sister-in-law is 6 years out and she looks as good or better than before her treatment and she doesn't do anything cosmetic. Maybe a change in her activity level and eating habits has helped. Also her lease on life has changed, travels a lot and does thing she would have never done before. So there is hope. Today my son had a play at school for Thanksgiving so I needed to look a little more put together. So after my hair wash I held clumps of my shoulder length hair to the side away from my scalp and blew it mostly dry on warm. If I held it straight out it not pulling it didn't blow on my scalp at all.. then put some dry natural oil on it and pulled it back in a loose, at the base of neck, bun. When there's a will, there's a way. Right? By the time I left, ran errands and let it down it was in soft beach waves, I could handle it and felt good. Didn't worry people were saying "geez what the hell happened to her". Now my hair will probably fall out at stealth speed now, but I kinda looked normal for one day. 😀

    KD2016 - sorry about your lashes. I hope it's contained to that sight.

    Willa - yep I think I will buy the remaining outfits to wear knowing I will throw them out. Wonder why some share and journal everything and some want no reminders. Maybe just coping.


  • sarahrae
    sarahrae Member Posts: 52
    edited November 2016

    Runner~

    the docs over here think that AI's have better outcomes(up to 2% less chance of recurrance), so they start us all on them. Typically only put women on Tamox if the women are not managing the AI's well. So, I am about 8-10 years off menopause and get zoladex shots each month and take arimidex daily since my monthly moons stopped. they say I'll be on them for about 10 years. :(

    I was just curious why the difference

    hope you are doing well!

    i keep trimming my hair shorter and shorter :)

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