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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Ang7
    Ang7 Member Posts: 568
    edited April 2011

    Determined3~

    My oncologist was able to research the Penguin Cold Caps and scalp mets etc.  Although she did not believe they would work, she did agree that I could try them.  A year later, I kept all of my hair except a bit by my ears and that grew back very quickly...

  • sebm9
    sebm9 Member Posts: 488
    edited April 2011

    determined3: The European oncological research (where cold caps have been used for many years) definitively shows that there is no increased risk of scalp mets due to cap use. I can send the links to anyone who needs this; the docs should be able to do a simple PubMed search on their own, but you can save them the trip.

    I had -- and have -- absolutely no fear of someday getting scalp mets due to cap use. I have a far greater risk of developing leukemia as a SE of chemo, and I'm not afraid of that either (.001% risk).

    Susan 

  • determined3
    determined3 Member Posts: 41
    edited April 2011

    hi,

    i just want to thank everyone who has responded to my post(s) in an effort to help me to make the best possible decision for me.  as you all know, this is a very, very scary time for ppl who and the support on these forums are life saving and very much needed. many of you have pm'ed me or allow me to do so you to you. 

    we are all busy, but i sincerely thank you for taking the time to talk (write) with me about my fears and questions. 

    feel free to continue sharing your experiences  and again,i thank you.

  • sebm9
    sebm9 Member Posts: 488
    edited April 2011

    hi determined3: Rest assured, there is no such thing as a wrong decision in all this. There is only the decision that is best for you, and that includes many factors. You are doing a good job of seeking information and being as educated as possible, and that is paramount in all things! Even if you decide not to use caps -- for whatever reason: convenience, uncertainty, expense -- in the end whatever decision you make will have been a *choice*, and that is key.

    Using caps won't help you beat cancer per se. It also won't cause cancer, nor does it pose any new risks as you go through treatment. For some of us, it has been a positive, outward symbol of our conquering cancer -- but for many women, losing their hair becomes that outward symbol too. It's all about your mental mindset, staying strong, staying positive, and knowing you are doing everything you can and need to battle your diagnosis and live strong. As I tell every woman newly diagnosed with cancer, this is a journey about living, not about not-dying. 

    Don't hesitate to bring us your questions!

    Susan 

  • Susiestn
    Susiestn Member Posts: 1
    edited April 2011

    I had my first t/c round 11 days ago and used the cold caps. I am waiting with baited breath for day 14 to see if they worked. So far no shedding! No dying or blow drying is making me crazy but I say a bad hair day is better than a no hair day. I feel like it will help my self esteem and my twin 9 year old girls to keep my hair.

  • Ang7
    Ang7 Member Posts: 568
    edited April 2011

    Good thoughts heading your way Susiestn...

    I finished Cold Caps a year ago and it was sooo helpful with my self-esteem and my kids, including twin girls!! 

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited April 2011

    Hi Susiestn,  I too am slightly anxious about what will happen,  it is 16 days since my first infusion with TCH.  No signs of hair loss, but I do have an itchy scalp and am not sure what that means.  Is it due to not washing hair much, a change in shampoo to sulfide free or a dry scalp or does it mean the hair is getting ready to fall out?? Oh well, I am trying to tell myself that whatever will be, will be.  I hope I will not end up bald but am prepared to go get a wig if I have to.   I am now sleeping on satin pillowcases which feels different.  My grey roots are really starting to show but I am thankful I have roots to show.  Does anyone know if you can use Henna or any other product to color the hair during chemo treatment?   

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

    Hey gals...I am a little ahead of you.  I am ready for my 3rd treatment of taxotere and cytoxan on this Wednesday.  I did not notice any shedding on my head until around day 21.  It started slowly then and has been shedding since but has lessened a bit.  I have lost other body hair though - that started around day 13 after my first chemo.  Right now I still have a full head of hair.  I feel it is thinner but I don't think anyone else would notice.  I am a little worried that the shedding will continue at this pace and that would make for some very thin hair.  I figure at some point after chemo I will have to cut it shorter if it gets real thin (I have long hair down to the middle of my back that was not thick to begin with) so it won't look so bad.  I will wait and see and I will have to ask because I know they say not to cut your hair during cold caps but I don't know how long after I would have to wait to do it. 

    I too have a young child (age 4) and he does not even know I am having chemo.  I have been lucky to not have any obvious SE's at all.  I just felt no need to explain chemo to him since I look the same and quite honestly act the same (I am up with him up at 6:30am every morning and do everything I did before chemo...workout daily, cook dinner, pick him up at school, etc...)  I have done well so far.  What I can tell you is the cold caps has given me a sense of "normalcy" during this very abnormal time in my life.  I go out and do normal things and am not seen as a cancer patient or sick person.  The only time I am a cancer patient in my mind is on infusion days or when I go to the doc's office for my weekly blood draw.  When I go there I am one of the few with hair so I often wonder if other's wonder whether I have cancer or not.  I can tell you doing the cold caps has made this easier for me.  It was the right choice for me.   Like other's said this is a personal choice and each person has to decide what is best for them.  For me I had to decide whether I wanted chemo or not (I was in a gray zone) and the cold caps made this so much easier for me to decide. 

  • sashasz3
    sashasz3 Member Posts: 97
    edited April 2011

    Hang in there ladies--day 18 PFC  ---it is worth all the work with the caps to say you have hair in the end--no matter how it looks---creative moments make it look much better --I just go back from my 2nd radiation--they thought they had the wrong chart the nurse asked "have you started your chemo?"  the answer all done--she asked about the hair--she has never heard of PCC--she has now!!

    Question to those who have finished with their caps--how long was it before you heard from the company on your refund of deposit??

    Have a great day!

    Sharon

  • leeann56
    leeann56 Member Posts: 51
    edited April 2011

    Hi everyone,

    Just wanted to say that the people at Advanced Caps ( they supply the dry ice, caps and thermometer, they also come to your first treatment to help you) have been nothing but supportive and accommodating, they are a new company and are still working out the bugs, for those of us where dry ice is a big issue to find, this company makes it very convenient. All this is new for eveybody and it is through trial and error that we are all learning.

  • samdobbs
    samdobbs Member Posts: 32
    edited April 2011
    Hi sashasz3 -- I'm writing for my wife Liddy who will finish her 6th TCH June 2. Can you please tell me how long after your last chemo you were marked for rads and when you started rads? Thanks!
  • keeppositive
    keeppositive Member Posts: 181
    edited April 2011

    Good Day to Everyone:

    To determined3: As others have said, the idea that you know you have a choice is the key here. You found out that there is a choice, that there is a way to save your hair from chemo if you want to. That choice is entirely yours, and there is no right or wrong answer. Again, as others have said, there is no evidence of scalp metastisis with cold caps. It has been tested in Europe on 1200 womrn (where they use Cold Caps regularly and it is covered by their Insurance) and they found none.

    I can tell you my experience with cold caps has been a most positive affirmation. When I look in the mirror, I don't see a bald woman with Cancer, I see a normal looking woman conquering cancer with a choice that makes me feel I am in control of at least something during the process of being cured  of  Cancer. The picture of cancer does not have to be a bald woman or child.  

    To susiestn and serenitywisdom: Don't fret, you will keep your hair(even if you have nightmares that you loose it-we all have had those silly nightmares-and that's all they are--silly!) The tugging/itching/tingling and other feelings in your scalp are just your hair follicles fighting to hang on!! The shedding is normal and increases with time and more treatments, but it is only noticeable to you!! The "normal" feeling and the "healthy" looking you are the important things here. The best to you both-hang in there, soon it will be over!

    Keep Positive and Keep Laughing!!

    Nancy

  • kriskat
    kriskat Member Posts: 116
    edited April 2011

    I am day #28 post TCH #1 (and 7 days post #2). I have had ALOT of shedding this last week to the point whereby am very discouraged. No bald spots yet, but it's been slot of hair. Also, very dry which I think contributes to the shedding. I have really thick, fine hair but it seems like I have lost alot. Any advice?

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

    Hi everyone:

    Well, Day 14 and shedding is beginning but no clumps.  I'm not even going to mention it to my hubby and see if he notices which is very doubtful.  Oddly enough, I haven't lost any of the leg, arm or 'down' under hair.  But with it 'shedding' at Day 14 and most seem to not notice until Day 21, guess I'm a bit nervous but it will be what it will be.

    Did any of you have bladder problems - horrible burning upon urination?  Seems it is just one thing after another for me.

    Well, off to the doctor for weekly bloodwork.

    Arlene

  • kriskat
    kriskat Member Posts: 116
    edited April 2011

    Arlene- past #2 TCH and still have most other hair- had to shave my legs again last night and the hair "down there" is still there. Arm hair too!!! I haven't lost clumps but definitely lots of shedding. Anyone with advice on when the shedding should slow???

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

    It seems like everyone loses the hair different.  The first thing I noticed in the week or two following my first chemo was my hair on legs/under arms started growing slow.  I was shaving like every 5 days.  It finally stopped growing so no more shaving.  The hair down south started to go on day 13 after my first chemo.  I am ready for chemo #3 and still have arm hair.  I have not had to pluck brows since starting chemo (maybe once since I started chemo on 3/2).  Brows have a few spots thinning so I started latisse on brows/lashes about 2 weeks ago in case.  Hair on head...still there and did not start shedding until day 21 after first chemo (day of my second chemo).  I am on taxotere and cytoxan.  It seems many others on TC started shedding earlier.  I guess all I can say is each of us is different.  I keep looking for similarities so I can know what to expect, but each of us will shed differently. 

  • leeann56
    leeann56 Member Posts: 51
    edited April 2011

    Arlene,

    I to started shedding on day 14, I lost a lot of hair on top complete with a bald patch due to frost bite.I have been steadly shedding, now that it is day19, It is coming out even more underneath, which I expected due to the caps not covering the nape. I have spent a lot of time so far fretting, but when all is said and done, whatever I am left with I will be grateful, even if it means wearing a wig until it fills in.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited April 2011

    I shed on day 14 of the first TCH and subsequent TCH treatments.  The one thing I did notice was that my head did become tingly and itchy. It did seem to be the pre-cursor to shedding.  But I had more shedding than normal due to a large head and the caps not fitting at the nape. That is where I had the tingling - all through the nape of the neck.  

    Everyone is different. I still have hair on my arms.  I have an itty bitty down south.  My legs are smooth - which is kind of nice!   No shaving needed!  My shedding seems to slow down as I get nearer to my next treatment, about day 21.  Then I notice that I have some renegade eyebrows growing in...

  • sashasz3
    sashasz3 Member Posts: 97
    edited April 2011

    Hi samdobbs--I finished chemo on the 24th of March--I was marked April 1st---started rads--April 8th my second one today--34 in all--hope that helps!

    Sharon

  • motherofpatient
    motherofpatient Member Posts: 124
    edited April 2011

    Advance Cold Caps cost my daughter a full chemo tx with out proper protection to the hair roots. Leann - I hope they aren't as warm as your first caps with Advance were and I hope that first chemo with warn caps doesn't ruin your outcome.

    As for a new business - check out Camp Coast Outpost, MS Attorney Genral's Office and Sec-ty of state's office.Know with whom you are dealing, then decide what to promote

  • samdobbs
    samdobbs Member Posts: 32
    edited April 2011
    Thanks sashasz3 I presume you're also continuing Herceptin during rads? Also you mention 34, our RO said 5 days a week for 6 weeks which is 30 -- is it common for rads protocols to vary?
  • yizbieta
    yizbieta Member Posts: 77
    edited April 2011

    Hi All- has anyone had sores on their scalp? I am itching terribly in a number of spots where there are some bumps...and I wondered if it is from the length of time in between washing- one week is a long time and my hair gets very dirty and greasy.In fact, today, I couldn't stand it and washed my hair two days short of the week. Just couldn't take it anymore. Figured it was better to be clean, than depressed with dirty hair.

     Sores may also be from the treatments....Anyone??

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

    Yizbieta:  I had little knots/sores on my scalp too and now that I have washed my hair, they are gone!

    Looks like all of us having different shedding patterns.  How many of you ElastoGel users are using them in between and how often?

    All my bloodwork came back perfect today!!!  HOORAY!

  • samdobbs
    samdobbs Member Posts: 32
    edited April 2011
    Hi ArleneA  my wife is using the Elastogels, she does them 2 hrs a day almost every day in between 3-weekly TCH. She had no shedding after #1, but some shedding approx day 10 after #2 and similarly after #3. Congrats on your bloodwork numbers!
  • nmoss1000
    nmoss1000 Member Posts: 324
    edited April 2011

    Hi all day 20 post TX # and shedding has started. Getting a little concerned, no clumps but lots of strands. How long does shedding last?

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

    Thanks Sam!  Guess I need to up my in-between use.  I've only been doing them twice a week.

    Hi NMoss:  How'd it go today?  Two down, 4 to go!  :)  I think shedding, from what I'm hearing, is inevitable but the hope is we keep enough to not need the wigs/scarves.  It is a lot of work but hopefully the results are worth it.

    Arlene

  • samdobbs
    samdobbs Member Posts: 32
    edited April 2011
    Hi nmoss my wife is using Elastogels and had sheedding around day 10 after tx # 2 and #3. Lasted about 2-3 days and then stopped. She too just had strands come off, no clumping. Hang in there I think you'll be just fine, good luck.
  • Steph42
    Steph42 Member Posts: 18
    edited April 2011

    Hi Everyone,

    Thanks for the comments, I'm feeling better about things now. That first hair wash after TCH #4 was SCARRY!!  But each hair wash after that has gotten better. I even went into the office today and no one can even tell. I'm hardly shedding at all. I have to go to the Dr. every week for the Herceptin and the Dr.'s and nurses are amazed and ask all kinds of questions. My surgeon even said "I don't feel like I'm talking to a cancer patient".

    I haven't been using the caps in between treatments but I will be for #5 & 6. I have been washing my hair in cold water. As cold as I can stand. I do what someone else mentioned, I put it in a shower cap and wash me in warm water. Then when ready to do hair, turn to cold and take off the cap. I have not used the dryer at all. My biggest problem has been that I had very oily hair before chemo so my hair got pretty gross between washing during the first couple of treatments. It's gotten less oily as I go but sometimes washing just doesn't get it so my hair sometimes looks worse than it really is.

    Also, I've been getting my caps to -32C. With the Elastogel caps that temp is easy to get to on the top but not so much on the sides. The sides don't get as cold or stay cold very long. I've been changing them every 20 mins. I originally started with the Penguin caps and I think they stayed cold longer (changed every 30 mins) but they had the same coverage problem and were harder to use

    Hang in there everyone, we are all strong and amazing women and no matter how much hair we do or do not have we will get through this. 

      

  • motherofpatient
    motherofpatient Member Posts: 124
    edited April 2011

    Those of you with sores - are you using the wet inner caps? I don't think it is a good idea since the caps are so cold and the water freezes. The wet inner cap is what Digncaps use and they only go to 5C - way warmer than PCC or EG.I know Advance pushes this, but Frank, who is a researcher and a real scientist, says put nothing between your scale and the cap.

  • kriskat
    kriskat Member Posts: 116
    edited April 2011

    Can anyone recommend a product that will help with hair that has be one really dry/frizzy? My hair went from oily on week one to really dry week 4...... It's so dry that I think it's contributing to my shedding

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