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Cold Caps Users Past and Present, to Save Hair

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Comments

  • mdg
    mdg Member Posts: 1,468
    edited December 2011

    I took ativan before chemo. I HATE being cold and was worried I would not be able to tolerate the caps. I did fine...I did put an electric balnket on though. I still have may hair.

  • arlenea
    arlenea Member Posts: 1,150
    edited December 2011

    The Ativan before treatment does the trick for sure.

    Since I was using ElastoGels and had mine at home, I used them between treatments.

    Rads should not cause any hair loss.  I was told it only causes hair loss at the site of the rads.  So for us bc girls, no hair there but it will do a number on the underarm hair as does the chemo but I was happy to have no hair there and still don't under that arm.

    Best wishes to all the new girls!

  • ali68
    ali68 Member Posts: 644
    edited December 2011

    Thanks so much, what is Ativan..

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Susan,

    Thanks for the info on icing. I've decided to forgo it - and try accupuncture - my cancer center has it available. I'm so thankful for your guidance and help through this process. I've been through 3 T/C/H so far - and I've still got hair. I've had some shedding - but as far as I can tell (at least if people are being honest:) it looks "normal". It's dry as hell - but it's there. My last chemo is scheduled for 1/11. Wish me luck!

    Happy Holidays and Love and Peace to all you brave ladies!

    Lucky

  • arlenea
    arlenea Member Posts: 1,150
    edited December 2011

    Ali:  Ativan is for nerves and it calms you down and you really don't notice the cold.  I only had it as part of my premeds prior to chemo.  Worked great but sure didn't make me sleep like others.

  • sebm9
    sebm9 Member Posts: 488
    edited December 2011

    Lucky: You are doing *great*! I think you will really appreciate accupuncture. When you go, don't just list your physical ailments and SEs, make sure to describe your mood, emotions, energy, sleeplessness, etc... it is quite effective. I'd never tried it until going through chemo and I am sold.

    Thanks ladies for all of the support recently. I met with my MD this morning; great news: my bloodwork showed that I am officially post-menopausal (just since my last bloodwork 6 months ago, which was completely pre-menopausal!). I can immediatley go off tamoxifen and start Arimidex. I am jumping up and down, I'm so happy.

    My doctor surmised that the reason I had a sudden surge of new SEs in the last couple of months -- after more than a year on tamoxifen with some SEs but nothing truly debilitating until now -- was that my body had switched to post-menopausal and my system no longer knew what to do with the tamoxifen.  

    So, a reminder: be sure to continue reporting your aches and pains and any changes to your doctor. I was busy toughing it out, but missing a major change/clue and. I did myself a disservice by not speaking up sooner, but now I'll be getting the medicine that's best for my current status.

    I'm extra-glad I took up weight training back when I was going through chemo; I've helped build up my bone density and can continue doing that while on Arimidex.

    Cheers,

    Susan, a very very happy woman today

    p.s. Today I looked in the mirror and my hair looked nearly "old normal" pre-chemo pre-caps. In fact, while walking to the car, a panhandler shouted at me from down the street for money. I ignored him and kept walking. Then he yelled "Hey, you, you with the beautiful hair!" That made me smile!

  • sebm9
    sebm9 Member Posts: 488
    edited December 2011

    Hi Alison,

    The Penguin Cold Cap is much colder than putting your hand in the freezer. For many women, the experience during the first five minutes is like a "brain freeze" when you drink a slurpee too fast (albeit more intense). After that you've frozen the nerve endings in your scalp so you have a general sensation of cold. Some women take an ativan or relaxant beforehand; you will also have quite a bit of stuff in your pre-meds each infusion (check with your nurses) so you will be feeling far less than you usually would. An electric blanket is a great help. I dressed in layers (in summer in California) plus had a fleece jacket plus a blanket and I still had the shivers by the end. It goes fast, though: you are so busy the time flies. And it was so worth it, to me.

    You do not lose any hair from rads. (I had zero side effects from radiation and very very few from chemo.) If you send me your email, I'll email you my writeup of my chemo experience. Many women have found it to be very helpful esp. with caps.

    ckk: I combed out the ends, holding the ends. Then I held the roots with my palm while I combed the middle of my long hair, careful not to pull. It's fine to rinse between washes, btw, and I also used conditioner on the shaft (not the scalp) once hair started to show dryness, 3rd and 4th chemos. 

    Best,

    Susan 

  • arlenea
    arlenea Member Posts: 1,150
    edited December 2011

    Goodness, goodness.  I went for my annual mammogram/ultrasound today and all is WELL.  It didn't even hurt.  I was worried when they skipped the ultrasound but I commented to the tech that it must be a good thing and she agreed and said get dressed as the Radiologist wants to talk to you...that made me a bit nervous but not overly because I figured if anything was wrong, I'd be getting the ultrasound.  He wanted to go over things and show me my tumor from last year (which was diagnosed in Nevada where I was living then).  He said every 6 months for the mammo and that this is the new baseline and they track my scar tissue to make sure it keeps disappearing. 

    Now the tech asked me if I lost my hair....come on, look at me - I have hair!  I explained that I had finished chemo in June and radiation in August and she said wow, you just finished all of this and have hair.  I explained that I chopped my hair off short to get rid of the scraggley, thin and broken off hair and USED cold caps.  Amazing that NO ONE knows about the caps ... how that that be.  Anyhow she was so surprised to see I had hair.  I was talking to some girls in the "girls" waiting room who think they might have cancer and explaining about the caps and they seemed disinterested.  Guess at this point, I might have been the same!!!!  How do we get folks to get interested and realize there is an option to losing the hair!!!! 

    Most important., I'm clear now!

  • ckk
    ckk Member Posts: 79
    edited December 2011

    Arlene, that's great news about your mammogram! Congratulations.

    I am in the midst of TC x 4, had my first infusion on 12/22 with the PCCs. So far so good, but I don't think that I'd see anything by now anyway, 8 days post infusion. I do see my hair growing - does that mean anything?

    I was talking to the breast care coordinator at the hospital, and she was also not aware of the PCCs, and she even recommends this site to newly diagnosed patients! I gave her the PCC url, and she's going to visit me during the next infusion to see the caps. She's very interested to see if they work so that she can talk about them to other patients. 

    I think that if/when a cold cap system becomes FDA approved, then many more people will hear about it. I think that lack of insurance coverage is a major barrier to widespread use.

  • Ang7
    Ang7 Member Posts: 568
    edited December 2011

    So, BCBS called today and they "think I may be getting some money back for the PCC usage." 

    Well, it has only been 2 years...

    I will keep you updated.

  • sebm9
    sebm9 Member Posts: 488
    edited December 2011

    Yay Ang7! If there was specific wording or coding you used, please let me know. (Also, did you get a specific kind of invoice (format) from Frank for this?)

    Susan 

  • Ang7
    Ang7 Member Posts: 568
    edited December 2011

    Yes Susan,

    I sent in the scrip from the onc. for a "prosthesis for the head."  wig?

    Frank sent me 2 invoices that had my PCC's linked with a starting date and then the remaining dates were a couple of weeks apart.  He had broken down the dollar amount so that it matched the total at the end.  So it went in dollar amounts all the way through the months.  Hope this makes sense...

  • ali68
    ali68 Member Posts: 644
    edited December 2011

    Hi everyone , going to use cold cap in 2weeks. I have had a good trim do I need to go shorter? Onco said if hair is thin then it works better.

  • Laura5
    Laura5 Member Posts: 419
    edited December 2011

    ali68, When I was ready to start, Frank told me NOT to cut my hair. I had just had mine trimmed as well.

  • sebm9
    sebm9 Member Posts: 488
    edited January 2012

    Ali68, other than a trim of the ends DON'T cut it shorter. Length doesn't matter, and the protocol Frank develops is for the hair you have now -- what matters is how thick/thin your hair is, not how long it is. A severe cut will "shock" it and it will suffer when it's time for chemo and caps. You will be fine, trust me! Do you know yet what your chemo cocktail and regimen will be? 

    Ang7 - thanks, yes makes sense. I may PM you in future for more details as I pursue my own claim with BCBS. Thanks for leading the way!

    Susan 

  • Tiki
    Tiki Member Posts: 95
    edited January 2012

    I am 6 1/2 months and I am losing my eye brows and lashes :(. Does anyone had the same experience?



    Tiki

  • Tiki
    Tiki Member Posts: 95
    edited January 2012

    I already lost my brows and lashes on my 6 or 7 week PFC. I growth back in 2 weeks, but now again?? Oh please, is this going to be over?



    Tiki

  • soccergirl
    soccergirl Member Posts: 190
    edited January 2012

    Tiki:  That happens a lot.  Don't panic, some women lose their lashes three times.  

  • sebm9
    sebm9 Member Posts: 488
    edited January 2012

    Tiki: That happens to lots of folks; my brows slowly thinned through chemo but came out about 4-6 weeks PFC, when I was least expecting it. What a surprise! They grew back extremely quickly, within 10 days-2 weeks. Mine have been fine ever since but for some people they come and go a time or two before settling back in for good. My lashes thinned a little around that time but I didn't notice it until new lashes started growing.

    I used a little brow pencil, the difference was hardly noticeable for such a short time (it was the only time in all of chemo when I looked a little "funny" and people could tell something was up. If anybody inquired, I told them I'd just been through chemo and had used PCCs to save my hair and they were so floored by that, that they forgot about the eyebrows!)

    Happy new year to everybody! I hope it is a healthy and happy new year for everyone here.

    Susan 

  • mdg
    mdg Member Posts: 1,468
    edited January 2012

    Tiki...my lashes thinned horribly last month...they are growing back now. I did not notice much with the brows. I guess I should have kept using the latisse...they gre back faster and thicker when I used that PFC than now.

  • hereigoagain
    hereigoagain Member Posts: 1
    edited January 2012

    I am talking to oncologist about advance cold caps tomorrow. I lost my hair during my last chemo in 2002. I was just diagnosed with ovarian cancer and really would like to keep my hair this time. I am very positive after reading your posts. Keeping my hair is important to me right now.

  • TheLadyGrey
    TheLadyGrey Member Posts: 68
    edited January 2012

    Hereigo, I am one week past my third TCH and very pleased so far. Like most I lost patches above my ears, but the rest is so far just shedding. I try not to obsess. I have very fine hair.



    I kind of can't believe I'm going to get away with keeping my hair. It upsets me that this option is not widely available and accepted.



    I know the cost is out of reach for many, but it seems logical to me that if insurance will pay for replacement hair it should pay to not replace hair. I'm going to be filing with BCBS after my last treatment this month - may be dusting offmy law degree. Maybe there is some vague and ambiguous language Frank can use to fit with the defined coverage.

  • makingway
    makingway Member Posts: 465
    edited January 2012

    @hereigoagain-If you can afford it go with the Penguin cold caps-NOT the Advance cold caps. I don't believe they are effective. I read this topic frequently and those who use the Penguin cpas have the greatest success with saving their hair. Those who use the Advance, or Elastogel caps, lose much of their hair.

  • arlenea
    arlenea Member Posts: 1,150
    edited January 2012

    Hereigo:  I used the ElastoGels and kept my hair.  I understand (not positive) that the Advanced are used caps which is not good.  My EGs were brand spanking new and I believe I did as well as the PCC gals and much easier to use and much less money.  Worked for me but no guarantees.  I never needed a scarf or a wig. 

    Good luck in whatever decision you make on the caps.  Remember we are all here for you too!  Best wishes!

    Arlene

  • Smj
    Smj Member Posts: 1
    edited January 2012

    Susan,

    I was wondering if you could also send me a copy of your write up.... I feel it could be very helpful for me also. Thanks so much

    Sophie

  • Tiki
    Tiki Member Posts: 95
    edited January 2012

    Thank you ladies, I feel better now, knowing that losing the brows and lashes for a second time is normal. The good thing is that they grow fast.



    Tiki

  • makingway
    makingway Member Posts: 465
    edited January 2012

    @Arlene-You said you lost 70% of your hair using the Elastogel caps... The Elastogel caps do NOT work as well as the Penguin cold caps. The women who use the Penguin caps generally only lose none to 20% of their hair.

  • sebm9
    sebm9 Member Posts: 488
    edited January 2012

    Smj: Send me your email (or PM me with it) and I'll send my writeup. It's too long a writeup to fit in a PM.

    Best,

    Susan 

  • Laura5
    Laura5 Member Posts: 419
    edited January 2012

    TheLadyGrey, I too "can't believe I'm going to get away with keeping my hair". I feel incredibly fortunate to have learned of cold cap therapy. My doctors did not mention this option. If you do find a way to get BCBS to pay, please post.

    hereigoagain, I don't know anything about the other cold caps, but I used Penguin and have kept all of my hair.

  • arlenea
    arlenea Member Posts: 1,150
    edited January 2012

    Makingway:  I'm not going to argue with you because it isn't appropriate.  I did lose a lot of hair but never needed a scarf or wig and have all my own hair....there are girls here who used the PCCs who lost the majority of their hair.  I just say whatever works for you works and I would use the EGs again if need be.  Nice that there are options.

    Best of luck ladies!

    Arlene

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