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Cold Caps Users Past and Present, to Save Hair

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Comments

  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited April 2015

    PCH - BEAUTIFUL!!! congrats. Thanks for always being there for me. I'll cherish our friendship forever. WE DID IT (even though there were days when we wanted to quit) .... we saved our hair! Yay for cold capping. ♡ Kim

  • Alibeths
    Alibeths Member Posts: 167
    edited April 2015

    Loving these pics!

  • Alibeths
    Alibeths Member Posts: 167
    edited April 2015

    How did you guys wear your hair? Between treatments? Mine down is a MESS....Headbands? Also, when does "shedding" start? I am on CTHP every 3 weeks.

  • melb44
    melb44 Member Posts: 64
    edited April 2015

    Thanks so much makingway and PatinMN about the fitting issues. I had a helper there we has been doing them for 9 years. I hope she didn't mess up. makingway I sent you a PM for better instructions I can forward on to her.


    I am going to be so sad if this causes me to lose big chunks of hair. My scalp was pink on the front top but maybe it wasn't good in the back :(



  • goldenpawsKim
    goldenpawsKim Member Posts: 102
    edited April 2015

    Alibeths - most people just wear their hair down or a loose pony with a clip. Once you get past your first shed, you may not want to wear a headband. Most people thin above ears/temple area (due to bad coverage) so sometimes leaving your hair down will cover those areas best. Unfortunately, no one loves their hair during this time however we still have it so that's what matters! You kind of get used to the "new you" until we get past chemo & capping. Regarding shedding, as mentioned before, everyone sheds differently. I think the majority of us had a big shed on days 20-30. I'm 7 weeks out and still shedding a bit. Good luck :)

  • StefLove
    StefLove Member Posts: 201
    edited April 2015

    Hey ladies, so here's a question...

    Just talked to one of the oncologists and here's the very tentative schedule...

    AC for 4x, once every three weeks

    then

    Taxol and Carboplatin for either 4x (once every 3 weeks) OR T 12x once a week and then C 4x once every 3 weeks.

    I originally said I want TC both once every 3 weeks, just so I can only have 8 'sessions' and get this thing over with. Plus it's less days off of work, less days for my helpers (aka dad), etc, etc, etc,

    Is that a good idea though? How's it effect the hair by doing dose dense TC at the end vs 12 weeks of T and then C every 3 weeks?

  • Alibeths
    Alibeths Member Posts: 167
    edited April 2015

    Stef, I have done both..ACT (my 1st time) and now I am doing Carbo....If it was up to me, I would get it DONE!!!!!!!!
    GOOD LUCK!


  • PatinMN
    PatinMN Member Posts: 784
    edited April 2015

    Stef, weekly taxol would definitely be easier on the hair than the tri-weekly dose. Would they consider adding the carboplatin every 3rd week if you do weekly taxol, rather than doing the carbo after weekly taxol is finished? I don't know carboplatin's effect on hair (or its other side effects). Either way, you've got a tough regimen planned.

  • StefLove
    StefLove Member Posts: 201
    edited April 2015

    PatinMN,

    Yup, If I did weekly Taxol they would add in the carboplatin every 3rd week. sorry if that was confusing in my other post! And yea, I'm realizing this wont be a picnic by any means :)

  • Jaejk5
    Jaejk5 Member Posts: 15
    edited April 2015

    Hi everyone!!! I don't post often but I read every post made in this discussion. Today is my last round of TC and cold capping!!!! I'm so excited to be sending those...!!!!!!!! Caps back😄. Yes, I still have my hair, which is so wonderful and worth the hassle. It is much thinner and broken but no one notices. In fact, one of my daughters came over yesterday and told me how beautiful it looked. She thought I had a trim to a more layered style. Lol. It still is shedding, which I wish would stop, but overall, it is normal looking. I estimate 25% is gone and it was past my shoulders, which it still is. Just layered now. MO called me yesterday because they had a patient interested in cold capping and wondered which caps I used. The word is starting to get out there a little at a time. I found cold capping rougher than the chemo, but the chemo SE lasted much longer. I encourage everyone to keep at it. I'm always told that I do not look like a cancer patient. After this morning, I am not!!!! Best wishes to everyone. Cindy

  • MIMomma1
    MIMomma1 Member Posts: 49
    edited May 2015

    Congrats Cindy!! You did it and now you can get back to your life! And with your hair intact! Way to go!

  • Alibeths
    Alibeths Member Posts: 167
    edited May 2015

    congrats!!! Thx for the encouragement

  • Jaejk5
    Jaejk5 Member Posts: 15
    edited May 2015

    Thank you ladies!!!! I made it through with very few people knowing I HAD cancer! Great feeling. My avatar is my photo from yesterday after my final chemo and cold capping with most of my hair intact

  • Angiel
    Angiel Member Posts: 175
    edited May 2015

    Hi Ladies,

    To those of you on the AC-T combo, I just wanted to post a picture of where I'm at at the halfway point for reference and inspiration. 4 AC & 4 Taxol done. Hoping to be done 8 weeks from today. I'd say I'm down 10-15% of my hair. I hate the caps but they are working. Hang in there!! Happy Friday!!

    image

    image

  • pch
    pch Member Posts: 185
    edited May 2015

    Angiel, good for you! You look fantastic. (Biggest love/hate relationship of your life, eh?) Very happy they're working out for you with that tough regimen. Oh and (%^*)*% cancer.

    And congrats Cindy! You look awesome. It's a great trip to the UPS store, eh?

    Very happy for you both.


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited May 2015

    Angiel, your hair looks great!

    I have three more treatments and hopefully will be able to kiss those caps good-bye forever.

  • Alibeths
    Alibeths Member Posts: 167
    edited May 2015

    awesome pics. My hair is short and curly. Can I dry w cool???

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited May 2015

    Alibeths, I do use my hairdryer on cool setting.

  • Angiel
    Angiel Member Posts: 175
    edited May 2015

    BB, I'm curious how you blow dry....Do you use a comb or your hand to hold your hair at the same time? I haven't blow dried yet, but today I need my hair to dry faster than the air-dry method in order to get to an event this afternoon. I want to try it but I am scared.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited May 2015

    Angiel,

    I just flip my head upside down and blow dry on low setting, cool air. It takes a while and doesn't dry completely, but after this the air-drying goes much faster. I only use a round brush or a roller on my bangs, cool air again. If I have to go somewhere where I need to look decent, I use a curling iron on my ends, low setting and a short time.

    I don't look close to what I used to look like, but it will have to do for now.

    Good luck!

  • wpmoon
    wpmoon Member Posts: 53
    edited May 2015

    My scalp has been itchy where I've lost most of my hair. Does this mean that maybe new hair is growing? (I hope...)

    I have round 4/6 on Monday, and I'm nervous about more hair falling out since my hair has gotten so thin. Waiting for when I see new hair growth...

  • Leslienva
    Leslienva Member Posts: 343
    edited May 2015

    WPMoon, my scalp was itchy, too. I used the apple cider vinegar rinse to help with that.

  • Angiel
    Angiel Member Posts: 175
    edited May 2015

    Thank you BB! I used my hair dryer yesterday for the first time since January and followed your instructions. I also used an iron on a couple pieces by my face and it turned out OK. I did have a big shed, though. Yesterday's amount was at least a couple hundred strands. Depressing....

  • Tripper4ya
    Tripper4ya Member Posts: 30
    edited May 2015

    @Angiel your hair looks wonderful, We are on the same regimen and I wish that I could say I look at great as you but I cannot, I just wish I would start with some growth, but still none Taxol #6 this up coming week, my eye lashes which were so long and full are now gone gone gone, eye brows are pretty thin too... I actually hate my appearance right now. all of you ladies are so beautiful, and one can hardly tell what you are going thru.. maybe I am being to hard on myself, but i am now a mere shell of what I used to look like... Oh when do I need to let Penguin know I am sending the caps back?

  • Chloe2015
    Chloe2015 Member Posts: 11
    edited May 2015

    Hi everyone. Looks like it's been a while since anyone posted on this topic. I'm new to this website - newly diagnosed in early March. Have been gathering as much info as I can. Can anyone tell me about their recent experiences with the cold cap? trying to figure out whether it's worth trying or not. My surgeon said she's had a few patients who tried it with success. Thanks so much!

  • Chloe2015
    Chloe2015 Member Posts: 11
    edited May 2015

    I apologize - people have been posting to this topic! Has anyone used any other company besides Penguin? I'm supposed to start chemo next week - FEC or AC first, Taxol much later, so need to make a decisoin asap. Thanks so much!

  • Angiel
    Angiel Member Posts: 175
    edited May 2015

    Tripper, good to hear from you. Sorry to hear that you haven't gotten any regrowth coming in yet. So very frustrating! Just continue to stay the course...I know it's hard...you are almost done and at that point, any hair that you have will put you so much farther ahead in the regrowth game. I had lunch last week with a friend who did cold caps 2 years ago. She said the hair that she lost has finally caught up to the length of her hair that made it through - it took 2 years! Again, I know this is so much harder said than done, but try to remain focused on the end result of not having to grow back all of your hair. Once pieces come in, you'll be amazed how they will blend with your longer pieces. And like you said, you are probably your harshest critic when it comes to your looks. I'm sending you a big hug :-) We are almost done with this crap! We've come so far!

    Chloe2015, welcome! There have been some great successes with the caps. I'd suggest paging through this thread starting from maybe 6 -12 months ago and you will get a lot of info that you can use to help in making your decision. I'd say the majority of cap wearers on this thread wore the Penguin Cold Caps but I know there have been a couple who did the Elasto ones sold on Amazon. I'm on the AC plus Taxol regimen and it typically is pretty rough on the hair. However, I have been doing OK so far. I posted a picture yesterday and you can see for yourself how it's going. I think other chemos tend to have better results but everyone responds differently. If you are going to do the Penguin Caps, you will have to decide quickly as they need to be shipped and may need to come from England unless you have a local rep. Good luck to you whatever you decide.

  • makingway
    makingway Member Posts: 465
    edited May 2015

    Chloe2015-There are two brands of cold caps available to the public-Penguin and Elastogel. Each has it's positives and negatives. The Penguin caps are rented. The Elastogel caps are purchased and owned. Penguin caps don't cover the temple area sufficiently and the back area heats up faster than the rest of the cap, so you should also use the gel bands. The Elastogel caps provide better coverage but warm faster, so it is important to start with a very cold cap. You can also change the cap a bit sooner to maintain the cold scalp temperature. I prefer using dry ice with the Elastogel caps. Because the Elastogel caps are shaped like a bowl I like to put a small ziploc(not completely closed) bag of dry ice to fill the void when packing them in the cooler. This also makes it easier layering the caps inside the cooler. Penguin caps cost $580.00 per month, Penguin gel bands $53.00. For 3 mths. rental of caps and bands it will cost $1,899.00. For 4 mths. $2,532.00. The first charge also includes a $500.00 deposit, so the initial charge for the first month is $1,133.00. Elastogel caps cost @ $90.00 each and you should have a minimum set of 8 to work with. The total cost for Elastogels would be $720.00. The effectiveness of the Penguin caps with the ACT regimen is @50/50. I have no data for the effectiveness of the Elastogel caps with this regimen. They do work with Taxotere/Cytoxan, Taxol/Cytoxan and Taxol/Carboplatin. I created a website to help those using cold caps. Here is a link about the differences in manufacturers: http://penguincoldcap.wix.com/help#!cap-manufacturers/c109o


  • StefLove
    StefLove Member Posts: 201
    edited May 2015

    Hey ladies, I'm calling Geralyn tomorrow and then will be ordering the caps with treatment to start on the 14th. My MO is still not on board with the caps really and was giving me the run around and a few excuses which ranged from metastasis of the scalp (I get that one) all the way to needing to have 4+ people to change the caps (obvi not true) and to not being allowed to have dry ice around other patients. I could tell she was grasping for straws for some of these. So I'm also calling her office tomorrow and going to talk to someone. Either they let me do it there at this treatment center, at another one in the same hospital chain, or I'm making the 1-1.5 hour drive to Tampa to do it at Moffitt since the MO I saw there for my 2nd opinion was ALL FOR THE CAPS! Seriously, I really liked her but even she admitted that the drive isn't worth it if I can do treatment in Orlando. But it's looking like I won't be able to. Meh.

    For the ladies that were on Taxol/Carboplatin, how were the results with PCC? I'll be doing that AFTER my AC treatments. Fun stuff. Sounds like AC is the worst of the two but Carbo has some pretty crappy side effects too.

  • Chloe2015
    Chloe2015 Member Posts: 11
    edited May 2015

    thanks so much to those who replied. Couple other questions- what about chemo cold caps? Anyone tried that company? Also has anyone had success getting insurance to cover at least some of cost?

    Appreciate your help

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