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Cold Caps Users Past and Present, to Save Hair

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Comments

  • magari
    magari Member Posts: 335
    edited February 2018

    Amelia01 - I believe toppers are not recommended until you are a few months PFC because the clips put strain on what hair you have left. I broke down and bought a wig for times when I want to look more pulled together than my currently frizzy, gray, thinning hair that I cannot style will allow.

    I define "shedding" as what is in the shower drain after I shampoo, plus whatever comes out when combing. I don't include the loose hairs that I find on my clothes throughout the day.

    Are you a ball cap kind of girl? Seems like those can be worn pretty much any time of year. I myself am wearing wool or cotton berets, depending on the weather.

  • SoniaL
    SoniaL Member Posts: 85
    edited February 2018

    Amelia01...I did Dignicap with weekly Taxol, and post-infusion time was an hour and a half. It was such a relief after a 3 hour post-infusion time with AC! But, if they will let you keep the cap on a little longer, I might advise that. I lost way more hair than I had hoped so I wonder if a longer cooling time would have helped? I had to start wearing a wig about halfway through the 12 Taxol treatments - I'm not a hat girl (and couldn't wear one to work) and my hair was SO thin. Like you, I thought I looked sickly and I looked so much healthier with the wig. Good luck!

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Hi all - new here...My first chemo is scheduled for Monday (Feb 26). I'm going to be trying the Paxman scalp cooling - they have it at the center where I'm doing my chemo. Kind of nervous, but ready to start - sooner I start, sooner I finish, right?? For anyone who's used Paxman, I was wondering about the headband they want you to use - in my case, there's no way I can have it at my hairline without it sliding down. I had read about people using moleskin on their forehead - is that a reasonable alternative??

    I'm getting 6 treatments of TCHP, 3 weeks apart - seems like the scalp cooling success rate is decent with that, we'll see. I'm in awe of you folks using penguin or other caps that you have to swap in and out. I think if my center didn't have Paxman, I'd probably just bite the bullet and shave it all off :)

    Thanks for listening.

    Cathy

  • Willow22
    Willow22 Member Posts: 104
    edited February 2018

    welcome CathyBook - sorry you have to deal with all this, but happy you found this group! I used penguin cold caps, so I'm not familiar with the Paxman system.... but it sounds like the headband is to protect your forehead from the cold? If so, I used panty liners. Goofy as it sounds, they are the perfect size/shape/thickness, the little adhesive strip kept it in place thru 7+ hours of cap changes, and it removed easily without bothering my skin. I used organic, unbleached ones - full panty liner on my forehead and 1/2 liner on each ear. Worked well and I think easier than using moleskin.

    Willow

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Thanks Willow22! Actually, I just found another post that also mentioned panty liners. It sounds like with the light adhesive, it will be just the ticket!


  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    Cathybook-I used pantyliners too and it worked great. I did look a bit silly with the liner on my forehead until the cap went on. Good luck with your first chemo next week. I’ll be doing round two with my pantiliners on Tuesday

  • Teachermom2
    Teachermom2 Member Posts: 56
    edited February 2018

    Hi Everyone...so I went with penguin on Halaven and today was treatment one. Yuck.

    Pamela23- yes..it was the rep from Michigan...don't get me going. Sad to have a person with her deminor representing the program.

    It'sStiilme I took advantage of the discount..I had asked bc someone had told me about it prior to me contacting them and she offered it. Make s a BIG difference!

    Pbello thanks!! I did reach out and someone on artic is ahead of me on the same regimen and is having good success so far. I will look into some of the others...thanks for the advice!

    Shay76 Artic was great. Very helpful and had testimony...not published, but they were able to share some experiences that helped!

    I pray we all conquer this battle with a great head of hair!!


  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2018

    Teachermom-- I was disappointed in the rep because it was the first live person who'd had BC that I could reach out to and thought she's know how scared and overwhelmed I was. I had so many questions and she was "all business". It was just a bit of a put off and then someone else cold capping at the same time mentioned her experience which was sub par an we realized it was the same lady. I'm glad you got through the first day! It's a LONG day but will be worth tin the end!

  • 2catsintheyard
    2catsintheyard Member Posts: 29
    edited February 2018

    Hello All,

    First of all-thank you to all of you frequent posters in this forum. I have been lurking and you've all been with me, encouraging me & advising me since November. I'm not much of a joiner or group support type person but really feel like I owe something back to this forum as much as it has helped me.

    I am just about to finish round 6 of 6 TCHP here in Phoenix, AZ next week and can't wait to be a week out past that. I have used Warrior cold caps started by Lisa F out of Dallas TX because she is a survivor and cold capper herself. Her company uses Elastogel caps. I went with Warrior because there are no Dignicaps and no Paxman system available at my facility, though they hope to have them installed within the next year.

    While the gel cap/dry ice/cap change system is harder and more work than the single cap systems, it is Definitely better than no system at all. Warrior Caps provides everything you need including the cooler, caps, a duffel bag of extras, capping videos & and a ton of emotional support, concern and answers to any and all questions. I can not recommend them highly enough.

    All that said, a few of my “highlights and lowlights" during cold capping & chemo were:

    -I did not experience nausea. I started 2 days before drinking 8-10 glasses of water per day, had a high protein breakfast (usually eggs) day of chemo, took 2 extra strength Tylenol about an hour ahead of infusion, choked down a small lunch during in the few moments without the wretched chin strap, had electric blanket.

    -Used wet hair (conditioner water) hair covered in shower cap method, absolutely hated the pantyliner ear covers and the double stick tape foam for forehead, so I made a new forehead barrier out or 2 layers of craft foam and don't tape it down which works great. For my ears, I got a neoprene sleep mask from Walgreens and cut through at the bridge of the nose, then had a shoe repair punch a hole in each eyepiece and those eyepieces became my ear cover with the elastic running behind my head at the nape of my neck. This worked fabulously-no frostbite on ears, no hair loss around ears,and I can hear relatively well.

    I experienced the big shed in the week or so after round 3, have general thinning all over, and an oval bald spot about 3 inches wide by 1 inch long. My ponytail is not something a chihuahua would get jealous over at this point, but by peppering with Toppix & rocking the combover with a barrette at the rear of my crown I am still pulling off the smoke and mirrors and a majority of people at work have no idea.

    I have religiously followed all instructions regarding shampooing, heat (with the exception of the occasional use of curling iron on ends only) timeframes, etc. and have to say I think I would not have lost as much hair as I have except like Magiri, have had sebaceous dermatitis on my scalp the past few weeks. I have used Lanza Healing Remedy shampoo and conditioner, until horrifying scalp peeling, chunks, oily residue. It is subsiding now with the use of Avalon Organics Tea Tree Oil Scalp Treatment shampoo. The Lanza really kept my hair in good shape overall though.

    Regarding hair care in general-it's hard to believe at first that your hair will dry out. I have some of the oiliest hair and the first week before & after chemo was truly awful, but it Does dry out and it gets easier and easier to go days without washing (during the bigger shed times it's a relief not to wash as that is the most depressing time in my opinion). Believe me and heed these words-treat your hair like it's made of cobwebs from the start. Use only the wide tooth comb, wash with body temp water, only comb once or twice per day-don't take a single hair for granted, you'll be glad you did.

    My greatest nemesis so far during this whole experience has been Candida yeast. I even hate the words by now. It first came to my attention in the never before suffered athletes foot AND a yeast infection 'down under' simultaneously after round 3. The nasty Candida strikes those whose immune systems are low, bringing a whole host of side effects other than the two mentioned above including: HAIR LOSS, sebaceous dermatitis, sticky fluids (i.e. tears, mucus & saliva), fatigue, diarrhea and muscle aches. I have both been on anti-fungals and an Anti-Candida diet, and have been taking pro-biotics and certain supplements. It is mostly under control but still lurking so I am still hangry for bread, pasta, potatoes, most cheeses and the occasional sweet treat. I have to satisfy my cravings by salivating over recipes on Pinterest

  • 2catsintheyard
    2catsintheyard Member Posts: 29
    edited February 2018

    (I think I was getting close to running over the word count as the keyboard started responding quirkily).

    In conclusion I just want to say that with all the money, time and effort on both our and our dedicated cappers parts that:

    1. It was Totally worth it for me to maintain as much normal in this most abnormal of situations and has allowed me to retain my privacy to not announce my health, making it and me the subject of daily conversations.

    2. As bad as it looks, a bad hair day is better than a no hair day according to Lisa at Warrior and I agree.

    3. If you have ANY of the symptoms I described in the post above, please seek testing and get treatment for Candida/yeast infection ASAP.

    Hope I've helped anyone as much as I have been helped here. Over and out,

    2cats

  • shortney36
    shortney36 Member Posts: 7
    edited February 2018

    I am doing dose dense AC/T the WORST regime for capping (20% success vs. 65% on others). I have long thick hair and have been through 2 rounds of AC with another tomorrow. I baby my hair and wash it once a week. I estimate I have lost 30-40%, but I am not sure it could be less. It is only noticeable to me and close friends that it is thinning. I have no spots yet, but I can tell my part is widening, but it is miniscule (it is red though).

    I heard after the second AC is the big shed and then it slows down. I have been shedding bad for the last ten days and it is getting worse every day and not better. Anyone who went through AC know if this is true for our regime and it will slow?

    I am doing dose dense Taxol (4 bi-weekly next and not 12 weekly like others). If I make it through AC portion will Taxol be more forgiving?


    Thank you



  • PatinMN
    PatinMN Member Posts: 784
    edited February 2018

    shortney, I believe dose-dense taxol is pretty hard on the hair too. Probably not as bad as AC, but between the "hangover" from AC and the dose dense taxol you may continue to shed pretty heavily. The weekly dose is much easier on the hair, and probably on the side effects too. (Caveat - I only had 12 weekly taxol; hopefully someone who had your regimen will chime in.)

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    shortney36 - I’m on the same treatment plan. I’m about to go get my second AC infusion, so I haven’t had my “big shed” yet. I talked to someone who had the same Ac+T and capped. She is almost two years post chemo. Her hair is thick and beautiful now. She said the first big shed is the worst. She said she lost about 60% of her hair overall. Yet she says she would do it again. That it was worth it. I hope you stop shedding soon.

    2cats - thanks so much for your post and all the advice! :)

  • Jlove1821
    Jlove1821 Member Posts: 53
    edited February 2018

    hi cathybook- I started paxman last week, I bought a smaller size headband and it worked well! The one they give us is way too wide and fall down to eyebrows!

  • Jlove1821
    Jlove1821 Member Posts: 53
    edited February 2018

    Hey ladies, I'm 1 week past my cold capping adventures with tcx4 using paxman. So far my hair is greasy( washed twice so far very gently with cool water, no lather). But my head feels uncomfortable, itchy and gross.. any advice to get through these 12 weeks not feeling so gross???

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    jlove1821-I hear ya. I had round one of chemo 2 1/2 weeks ago. Until then I washed my hair every day. It would feel gross if I skipped a day. I'm just now noticing that it is feeling cleaner longer as I now wash twice a week. I asked the forum your same question and I agree with everyone. Your hair will get used to being washed less. Try to hang in therr

  • Shay76
    Shay76 Member Posts: 31
    edited February 2018

    Jlove,

    I agree with Rockcity- your hair does get used to being washed less! I also get through with religious use of dry shampoo. You may need to splurge and get a quality brand (Bumble and Bumble) for this kind of endeavor. The drug store brands were just not cutting it for me. Not washing my thin, fine hair daily would not have been possible without dry shampoo!

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    jlove1821 - thanks for the headband info. Nice to hear from someone else doing paxman! By the way, did you do anything to cover your ears?? The cap doesn't actually cover them, so I wasn't sure if they got cold or not. My first treatment is monday, so trying to get myself organized.

  • magari
    magari Member Posts: 335
    edited February 2018

    Jlove - If you are using truly "cool" water to wash, it seems that you can increase the temp to "lukewarm," which may help a bit. https://www.paxmanusa.com/patients/haircare/

    If your scalp is oily (like mine) and you used to wash daily, be on the lookout for waxy buildup and itchy flaking. This *could* be seborrheic dermatitis of the scalp, a condition that I developed about 2.5-3 weeks into my treatment, just prior to Round 2 for me. I had a LOT of shedding during and immediately following my second infusion, so I went to my dermatologist and he confirmed my self-diagnosis and gave me topical medication to apply to my scalp. I am also now washing every other day, and my hair is holding on just fine. The condition is not completely gone, but it is under control and the excessive shedding has stopped. See some of my earlier posts in this thread for more detail.



  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2018

    Just a reminder for those who have finished, even if it wasn't recently, to post before/after pics on "Cold Cap Before and After photos" forum. Let's pay it forward Ladies!! We can encourage those on the fence that the time and $ is worth it!!

  • Jlove1821
    Jlove1821 Member Posts: 53
    edited February 2018

    magari- thank you , I'll be on the lookout out for more signs of that.im scared of the big shed. I'm glad to hear your shedding slowed down!

    Cathybook- I didn't, the actually cold cap d idnt touch my ears, the outside cover that insulates it covered.most of my ears and the headband goes under ears. I didn't get frostbite at all. Pm for any ?s if u want! I practiced at home a couple of times before I went putting on everything.

  • magari
    magari Member Posts: 335
    edited February 2018

    Good morning, all, and Happy Saturday! I've had a couple of days of pretty low energy and wooziness following Round 5 this past Wed, but have just taken a few extra Zofran and gone to bed early and am hoping I'm back on the upswing today.

    Noticed yesterday that I felt a bit of stubble on my legs - something I haven't had (or missed) since starting chemo. I still have one more round to go, but am wondering if this means that hair regrowth will be restarting elsewhere. I would love it if some sprouting were to happen on my head, especially the thin spot on top!

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Thanks Jlove - I've practiced putting the cap on, and will probably try again tomorrow before my chemo on Monday. I figured that my ears would be ok based on the Paxman setup, but glad to hear it confirmed.

    I have to take some before pictures tomorrow!! Not that my hair is so great, but I figure it's not going to be looking to good for the next six months or so :)

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    today I asked to take the Ativan even before starting with the cold cap. I also took 2 Motrin about 30 min prior. It helped out A LOT! No nausea or headache. I did get the usual brain freeze the first 10-15 min but nothing I couldn’t handle. Much better this time around! I highly recommend the Ativan if you feel nausea during the capping process!

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    pbello- good to know u did not get nauseous with the coldcapping this round. I have round 2 tomorrow and am afraid of the nausea of the cap from round one. I plan to take 2 Tylenol and an Ativan this time. Hope it works for me as well! Hope the rest of your week goes well.

    Magari- I am at day 21 and have noticed my scalp itching is getting more uncomfortable and I’m getting wax like dandruff. My scalp does not look red, but if I touch it, it flakes. I never had dandruff before chemo. I also washed every day prechemo. I thought it was just from reduced washing, but even on wash day, it still itches. Does this sound like what you are dealing with? I hate to break the rules of coldcapping, but it is very distracting. No big shed yet, but I’m expecting it any comb thru now. Not that I’m really prepared for it.

  • magari
    magari Member Posts: 335
    edited February 2018

    Rockcity - For me, the scalp dermatitis can be slightly red, mainly if I touch it. But the main symptoms in my case are waxy buildup and scaling/flakiness. The degree of itchiness is directly related to how much flaking there is, which waxes and wanes depending on how often I wash my hair. I had a recent increase over the last few days and have therefore washed daily for the past 3 days in a row.

    Good general info about the from the Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/seborrheic-dermatitis/symptoms-causes/syc-20352710

    It's an extremely frustrating condition. And guess what? Stress and a weakened immune system are potential causes!

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    Magari- there's certainly no shortage of a weakened immune system and stress around here! Ugh. I see that you developed it around the same time I am getting flaking. When did you see your dermatologist? It sounds like you have been getting some relief. I washed yesterday have chemo tomorrow, and am not supposed to wash again until Friday. 5 days. Yikes. I am having my husband pick up apple cider vinegar to use as a rinse on Friday Does it help? I also have been shampooing once per hair wash, instead of a second lather. Maybe a second lather might help?

  • magari
    magari Member Posts: 335
    edited February 2018

    Rockcity - I had *significant* shedding just prior to and during my second infusion, and my scalp had become quite sensitive and a bit sore. Which I noticed especially during part changes while cold capping. I called my dermatologist about 8-9 days after Round 2, when the itching had gotten really uncomfortable and I noticed how much flaking and buildup had developed.

    I used a 50/50 cider vinegar and water solution, applied for 5 minutes under a shower cap prior to shampooing the day of my derm appointment and one additional time. It didn't eliminate the problem entirely but it did help reduce both the buildup and the itchiness quite a bit.

    I continue to apply the clobetasol propionate solution I was prescribed to the affected areas of my scalp daily. I am also alternating brands of dandruff shampoo each week as my dermatologist told me to do. For me, a single shampooing on a more frequent basis seems to work better than lathering twice on wash days that are more spaced out. But I have double-lathered a couple of times when I've been able to tell that a single time hasn't been sufficient to remove the waxiness from my scalp.

    It is nerve-wracking to have to deal with additional hair "issues" in addition to cancer and cold capping. But once I got the dermatitis more or less under control I've had limited additional shedding. (This despite the fact that I'm massaging chemicals into my scalp and washing near-daily with non-natural shampoos.)

    For me the greater danger was letting the dermatitis get out of control again, which would likely result in inflammation that would make me physically uncomfortable and also cause further hair loss.

  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2018

    Rockcity--a few of us had the same flaking. I had a build up of some sort and when I picked at it, it was turned into big pieces of white flakes, I think there may be a build up of something when you don't wash it as frequently. Plus the chemo really dries out the scalp. Mine only happened at the beginning.

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    Pamela- did you do anything to combat this? It really itches and feels gross. I’m eyeing my daughters dandruff shampoo. I’m also considering not waiting until Friday to wash my hair (my chemo is tomorrow). I last washed on Sunday. I’m also using PCC. Thanks so muc

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