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Cold Caps Users Past and Present, to Save Hair

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  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    Hello Everyone,

         I just wanted to pop in a say that Iam so-o-o excited that most of you's are finished with your chemo and saved your hair!  This is so wonderful an it truly takes the sting out of chemo.  And for those who have thinned alot-rest assured-your hair will grow back faster from using the caps rather than not using them.  And for all the newbies-Good Luck and Iam thrilled more woman are trying the caps.  When I started my chemo there were just a couple of us using the caps and that was last May so in the past year this Thread has really grown!!!  Now everyone can help each other and spread the word-they work!! 

         My problem right now-7 months after chemo--my lashes keep thinning.  I used Latisse and they grew back and then I stopped using it ( the expense)-then my lashes thinned but I didn't want to have to use it forever (knowing-your lashes go back to original state when you stop) So I let them grow back naturally.  Now this is the 3rd time that my lashes thinned!  They look great than one day I'll go to put on my mascara and I notice that my longer lashes are gone and I have thin and short lashes again.  Has anyone ran into this problem?  Iam wondering how long this will go on?

       Hope everyone has a nice Easter! 

    Geralyn

  • bridetobe
    bridetobe Member Posts: 40
    edited April 2010
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    Hi everyone,

    After 18 cap changes, 2 helpers and nearly 100lbs of dry ice, I just survived my 1st chemo session of T/C, The reason it too so long is that the nurses couldn't find my file and chemo prescription, so we started the caps too early (90 minutes before the chemo) and the T/C drip took 3 hours to prevent any allergic reaction. . 

    We felt that 2 helpers was just enough particularly because we had a long car ride in traffic and I needed the extra pair of hands.

    For all those starting chemo, my wonderful fiance, devised a neat little excel spreadsheet that calculates for you the schedule and timing of each cap change, all you need is the type in your start time and the program does the rest. If you're interested PM me for it.

    I wonder if any of you took your scalp temperature immediately after removing the caps. My scalp varied from 19 Celsius to 26 Celsius (around my ears). I just wonder whether my scalp was cold enough to keep the follicles frozen.

    One last question, my onc told me that I may need 4 to 6 cycles of T/C. I'm fairly confident given what I've been reading on here, that my hair will survive 4 cycles, but I don't know many who've kept it past 6 cycles.  

     As for how I'm feeling well today is day 1 and I'm feeling perfectly fine with no side effects to note... I guess time will tell how I feel

     Happy Easter!

  • joansf
    joansf Member Posts: 55
    edited April 2010
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    Dear Bride--I just finished 12 cycles of Taxol yesterday!!  Taxol takes all of your hair eventually--maybe not as swiftly as T/C, but I watched a gal who started the same day, same protocol as me,  slowly lose her hair, start wearing scarfs, and eventually buzzing her hair.

     It was a daunting prospect, but now it's over, and it worked.  I'd say, don't worry!  

     Happy Easter. 

  • NewBride
    NewBride Member Posts: 126
    edited April 2010
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    I did my first round of T/C on April 1st.  As expected, the first infusion went long so by the time I was 4 hours post TX we had placed 16 caps.  We did recycle 2.  Mine are in 2 1/2 gallon zip lok bags that we numbered with a sharpie so we know which order to go in.  By the time we got thru 14, 1 and 2 were frozen solid (-54c) again.

    The caps went on my head at -33c as per Frank.  I noticed that the caps are just pliable at that temp.  I did take one Vicodin but it wasn't as terrible as I thought it would be.  In fact I'm wondering if we did it all right.  I think I could have had better coverage around the nape of my neck and my ears.  We did use two elastic straps to pull the caps in tight but I just couldnt wear that chin strap any tighter and still be able to swallow.  Now I guess we just wait and see.  Keep you fingers crossed.  My DH was amazed at the frost on the caps and how I could take it. Again, it just wasn't that bad.

    By the way, the entire staff at my cancer center was accommodating and supportive of the cold caps.  I think they are skeptical but I also think they are rooting for me.

    On another note, re Neulasta bone pain; I took one Claritin 24 one hour before the shot yesterday.  NO bone pain today.  I will take the Claritin today and tomorrow until the bone pain time is past.

    Any tips that you have about fitting the caps better would be much appreciated.  We followed the video but I still think we can do better next time

  • joansf
    joansf Member Posts: 55
    edited April 2010
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    Congratulations, New Bride!!  I thought the same as you--that the space around my ears and the nape of my neck didn't get great coverage.  I don't know how you wear your hair, but mine is shoulder-length, and I decided the most important spot to keep cold was my hairline at my forehead, so I focused on that.

    I had different helpers, but my daughter always did the best job of getting caps on tightly, and she and I spent a lot of time practicing with the video.  My other helpers had watched it briefly (if at all) and then learned in 'the field'.  It all worked out though...

    Best and Happy Easter!  Joan 

  • NewBride
    NewBride Member Posts: 126
    edited April 2010
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    Happy Easter to you as well.  It's great that you are here as I was just trying to PM you with names for nipple sparing.   I had my nipple sparing direct to implant MX In Fresno with Dr. Deborah Gumina, BS and Dr. Stephen Zuniga, PS.  I saw on the nip thread that you are looking into nipple sparing.  These Drs. are great.  Just in case you need 2nd opinions

  • joansf
    joansf Member Posts: 55
    edited April 2010
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    thank you so much!  I really agonized over the doctors, but I'm good now, and I'm scheduled for April 23.  It's so good to hear when someone has a good experience as you have.  One of my best friends used the same PS and was very happy. I hope I come out the other side feeling the same way.  But this has been a big learning experience and challenge for me, to go with my instincts, make decisions for myself and then be confident with them.  I would have preferred not to learn it this way, but here it is.

  • shadow2356
    shadow2356 Member Posts: 93
    edited April 2010
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    Good luck to everyone just starting the caps. I was super nervous that it wouldn't work too. But, after 6 cycles of taxotere, carboplatin and herceptin I still have a full head of hair. I did lose some strands but it is nothing anyone would ever notice. When I lost all my body hair and not the hair on my head I knew the caps were working. If the chemo damaged the body follicles it should have done it to my head, but it didn't. I lost most of the body hair after the second treatment and more in each subsequent treatment. I didn't lose all of my eyebrows, but they are super thin.

    The cold caps can be hard to do but they are worth it. I am finished with chemo now but I would still be bald for a long time if I didn't use them.

    Good luck to everyone!!!

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Hi all,

    I forwarded my Caps to a lady in Mississippi and I am waiting to hear from Frank Fronda about papers to send to insurance and my deposit.  Not having much luck with my emails to him.  Any ideas?

    Thanks.

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    Ang7--Hi !  I read your last post and if you pm me your info I could get a hold a Frank. Or you could try again but he probably has alot of catching up to do!!   I know he was away last week and again this weekend.

    Thanks,

    Geralyn

  • cs718
    cs718 Member Posts: 34
    edited April 2010
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    Greetings to All;

    Just a quick post on hair coloring post treatment: I used Garnier l0-15 minute semi-permanent coloring without ammonia l8 days after my last treatment, with great success (on sale, $5.99).  It covered the gray and my hair is soft and healthy looking.   I had my husband trim my wispy ends one week after treatment too and am using my regular hair dryer - carefully - and not washing my hair as often as I did pre-treatment, waiting about 3-4 days now, just to give it a rest.  The caps rule!!  Good luck to all.

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    cs718- Thats great your managing your hair but shouldn't you wait at least the 21 days after your last treatment since every treatment is it's own and you don't know if it is working until 21 days after?  I was told to wait 4 months after to color.  I think it is risky and taking a chance to try it sooner.  When your hair is hanging on by a thread-why take a chance after everything we went thru?  Good Luck,  Geralyn

  • toughmom38
    toughmom38 Member Posts: 21
    edited April 2010
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    I have a question... My first treatment with TCH was last Fri 4/9 and my husband and I had decided not to use the cold caps because they were too expensive. However, since then we have obtained some caps and I plan to use them starting with treatment #2.  Am I too late to keep from losing all my hair or can I maybe keep the loss to a minimum by starting now? And if I do lose all my hair will the caps at least let the growing process start back sooner?

    Thanks,

    JenniferSmile

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    Hello Jennifer,

          Wish you could of used the caps for your first treatment.  The damage was already done but Iam not sure how much.  It will be interesting to see how much hair you loose with one treatment.  Maybe not all--Iam always hopeful!  I would  say that from what I've learned from Mr. Fronda is that the caps will be beneficial to use them.  You will be protecting your hair follicles from further damge and also if you use them at home for an hour or so straight from the freezer (not dry ice) change every 20 minutes it will stimulate the hair to grow faster.  You can also take Silica Compound (at health store).  It is great for your hair and nails.  Check with your doctor first of course.

         I was wondering where you came across some cold caps.  Are they the Penguin Cold Caps or a different kind?  Beware of imposters!!  There are other kinds out there.  I know the Penguin Cold Caps are only rented not sold.  Could you PM me and let me know?  Good Luck with all of your tx's!

    Geralyn

  • cs718
    cs718 Member Posts: 34
    edited April 2010
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    Hi Geralyn;

    I can't argue with your logic but I recall that someone else used a semi permanent coloring a couple of weeks after her last treatment with no problem; I figured if I avoided an ammonia dye it would be pretty safe - my thinning was pretty much over a week after the last treatment. In any event, my hair is fine although everyone of course makes their own decisions.  Overall, I am nothing less than truly thrilled at having been able to get through this without having to endure the awful shock of seeing myself with no hair.  Everyone who saw me throughout told me they could not believe I was going through chemo, and although I may have felt pretty low for some days the week after each treatment, it felt really good to be able to give myself the gift of looking okay to the outside world.  I think we all feel that way.  Carry on!!

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    Claudie,

         Good luck to you!!!  Yes we all feel that way-it is truly amazing when you really think about it but a shame that more women don't know that they have a way to try to save their hair if they choose!

         It's interesting about the color-Iam assuming there is no peroxide in it either?  Iam such a chicken!! LOL!  I haven't colored my hair yet!!  After the nightmares I had of me bald I guess I didn't want to do anything but it is great that you did and everything is alright.  It is all a learning experience to everyone and all information is helpful!!  I Have to color my hair now. To many greys ! LOL!  they were blending into my highlights before but now that I have dark roots 4 inches long they are very noticable and summer is coming -so it is time!!!

         Keep in touch and good luck to you!!

    Geralyn (gmp300)

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Hi all-

    3 weeks out from last chemo.  Can I please wash my hair with warm water?  I am soooo tired of the cold water.  Is anyone else now doing this?

    Thanks.

  • Jill1965
    Jill1965 Member Posts: 7
    edited April 2010
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    # 4 TCH down and 2 more to go!  I washed my hair this morning and noticed a little more hair loss (not clumps, but strands).  Having not washed it in a week, it could be about normal. Do any of you feel like your neck is swollen after treatment?  I'm wondering if it's the drugs or the chin strap.  I'm feeling pretty awful this weekend.  I'm sure I overdid it on Friday when I couldn't resist digging in my flowerbeds while I was on the steroids. 

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010
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    Ang7-- Yes you can use warm water 21 days out.  Enjoy!!!

    Geralyn

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Thanks -

    I am going to go wash my hair.Smile

  • shadow2356
    shadow2356 Member Posts: 93
    edited April 2010
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    I am 4 weeks out from TCH. I saw that I can use warm water now. Yippie!!! Can I awsh it more than twice a week now? I do still lose strands when I brush. It doesn't seem like too much but of course it scares me.

    I drove around yesterday with all my car windows open. My hair blew around until it was quite unruly. It sure is nice to have hair!!!

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Hi all,

    Could you please tell me how to post a photo?  I had posted a photo of me in the Cold Cap and now I cannot post photos anymore.  Any ideas?

    Thanks.

  • NoSunshine
    NoSunshine Member Posts: 66
    edited April 2010
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    Hi Ang7:

    I upload the photos into photobucket and then copy the URL and paste it into the Insert/edit button on the tool bar at the top of the screen where you type your message.  It usually puts 2 photos into the post so I will usually highlight the second photo and delete it.  You can resize your photo in photobucket prior to placing it into this link.  Hope that helps!

    Carol

  • bridetobe
    bridetobe Member Posts: 40
    edited April 2010
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    Hi everyone,

    So today is day 20  since my first TC tx. Side effects have been mild and I'm feeling generally good. Now, as for the hair, shedding began at day 18 (only loose strands), but tonight I found a large knot in my hair and when tried to untangle it, it came out along with a quite a bit of hair. Is there anything I should do to avoid tangling? I've been sleeping with a large soft headband on a satin pillowtop. Any other suggestions? 

    I've also been noticing that my hair is looking rather oily and "stringy" in that it is separating into large strands. I'm sure sparse hair washing and not using a hairbrush aren't helping. Anyone else been in a similar situation?  

    Thanks

  • arbella
    arbella Member Posts: 20
    edited April 2010
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    claudia and others who submitted claim to insurance...do any of you have blue cross anthem? they are telling us they dont cover cranial prosthesis so hoping to find someone for whom they did cover it. many thanks, arbella

  • mtri111
    mtri111 Member Posts: 67
    edited April 2010
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     Blue Cross DOES cover cranial prostheses, up to $350 and with a deductible. Not much to offset cost of coldcaps!

     A prescription from Dr is needed, and of course the receipt.

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Here it is all - My hair 4 weeks after chemo.  Sort of thin but I am sooo glad to have it.  Pictured with my daughter...

    Thank you NoSunshine for helping me to post this.

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited April 2010
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    Ang7:  Your hair looks great!!  You don't even look like you had chemo!!

     I have a bald spot where my bangs would be so I am wearing headbands and have some thinning but other than that I don't look like a cancer patient.  I was on the harsh treatment of ACT so those things were to be expected.  All in all I was extremely glad I used the PCC's because now I have hair to work with and I even have peach fuzz on top of my head!!  I figure in a couple months I will be able to remove the headbands and my hair will look "normal" again!!

    Good luck to everyone just starting their journey.....  Take Care, Kelli

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010
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    Thanks Kelli1970-

    I was on TCH for six times.  I am trying to get in touch with Frank Fronda as my oncologist would like some pamphlets for her office...

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited April 2010
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    My oncologist (and some of the nurses) said that they haven't worked in the past but I could try them.  Every 2 weeks when I would show up to my checkups she (my onco) would say "Kelli you are making a believer out of me" and then at the end of my treatments she said "you MADE a believer out of me."  I was so glad I did.  Now my doctor and nurses are letting more people know about them so women (and men too) now have the option to try to save their hair....