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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Hi all,

    Still waiting to hear from BCBS. 

     They actually asked Frank to give them more information 3 times!!!  I really hope I am able to get some money back...

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    HI Ang - let us know what happens with the insurance. I am waiting to submit mine at the end.  Is that what most people do? 

    How is your hair?   Hope you are doing well! 

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

    I have another question ladies.  I was told that during chemo you should stay away from people (and especially hugging folks) but I see many of you ladies are going to the gym, ball games, etc.  So I'm thinking that it is ok to be around people as long as  you are smart about it??  I really hate the thought of becoming a hermit during chemo.  Guess if I go out to lunch and/or dinner, I just need to make sure I watch the crowds.

     Thanks again, Arlene

     PS - Port going in on Tuesday!  gulp!!!!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    HI Arlene - your white blood count will dictate how "hermity" you need to be.  With TCH my WBC has been great. No crowd issues, but then again I have a crowd of kids in my house each day!  I will say that my onco demanded the entire family get a flu shot before I started chemo.  I think I got it about two days prior. 

    Good luck on the port.  There is a lot of port info on many of the threads, if you do a search.  It is a really straightforward procedure...though some discomfort (for me).  Reco taking meds for the discomfort.  Seems like a commone theme from me...take the meds!

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

    My doc never gave me advice on staying away from people unless I know they are sick.  She did say to wash hands a lot and have my family do the same.  She also does require me to get a neulasta shot after each chemo to boost blood counts (boo!) but I also have a 4 year old that goes to preschool so maybe that's why.  I go to the gym daily.  I just wipe down the equipment with antibacterial wipes provided by my gym and as soon as I am done working out I wash my hands before I leave, head home and get a shower to minimize germs.  I also try to wipe down the door handles, tv remotes, faucet handles and such in my house every few days to minimize germs too.  I will just continue to do this and avoid anyone I know is sick and hope for the best. 

  • Julia1969
    Julia1969 Member Posts: 85
    edited March 2011

    Hi MDG,  I tended to stay out of crowds as much as possible during chemo.  The problem is that you don't have a white blood count done during the Nadir period of your chemo cycle to know if you have low WBC counts or not.  A Reader's Digest article once said that it is the surfaces on airplanes like armrests and tray tables that get people sick, not so much with air.  With that in mind I avoided touching things and if I could and used a lot of hand santitizers.  Use this as an excuse to have others go to the grocery for you.  I never missed not doing mundane errands I could avoid.  If you do go to the grocery, use wipes on the cart handle and then gel your hands after you complete your shopping.  (Avoid touching your eyes and face)  The safety talk at the medical lab I worked in said that the gels are better than washing, so keep gel in the purse, car........  One of my priorities was staying well so that I could get through chemo as quickly as possible.  Good luck

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

    Julia:  Thanks. I  do actually keep the gel everywhere because when I am am working (I am on short term disability) I am a surgical sales rep and spend all my time at the hospitals or in physician offices.  I gel up all the time. Because I hang out in such places I go through tons of gel.   I also love the wipes at the grocery store....won't grab a cart without them.  I agree 100%. 

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

    I forgot to mention that I had my first hair nightmare last night.....in my dream I had 3 new hair brushes and I was brushing my hair and looked down and all three brushes were completely full of hair!  Thank God I woke up!  What a nightmare.....I am waiting for the shed to start....I had my first chemo 3/2.  Other body hairs are going but the head has not so far.  Getting nervous...................I wash tomorrow so that should be interesting.  I will post an update over the weekend.

  • jpmercy
    jpmercy Member Posts: 94
    edited March 2011

    Msg- the dreams are normal!! I had one every week god I was so sick of dreaming g about boobs and hair! Lol but I will tell u ten weeks since final chemo and haven't had one hair dream! Hang in there your doing great!

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

    Hi everyone:

    Back from the onco and got all the details of my treatment.  TCH is what I'll be getting and 6 sessions versus 5 that the BS originally mentioned.

    They are very happy to work with me on the caps and have a special room for me and all our stuff.  Oncologist wasn't as negative this time and actually seemed to be quite knowlegeable about them and the nurses in the Infusion Center were good with them too (so far anyhow).  Oncologist stated that every patient (and that has only been 4 thus far) who used the caps kept all their hair and only lost a tiny bit around the base of the neck.  I mentioned to her that since our Center is such a research arm, they really should consider getting the freezers and offering the caps but I don't think that will happen any time soon but I won't give up on this!

    I had planned to take Milk Thistle but she squelched that one.  Anything even remotely related to antioxidants is a no-no since it fights with the chemo.  Wonder if that means no pomegrante juice, fruits and vegetables which are pretty much my staple diet.

    Thanks everyone for the information on contact with people during chemo.

    BTW, my doctor doesn't do Neulasta as a standard but only on an as-needed basis and says some slide right through it with never needing it but around TX#2 and #3 is when the WBC begins to drop.

     Have a great weekend ladies!

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

    Today is 18 days past my first TC treatment.  I washed this morning and waited for the hair to fall, but so far nothing (I am not complaining....very excited).  I lost about 20 hairs through washing, conditioning and combing through with a wide tooth comb (it's not good to have a white tub when you have dark brown hair...you actually see everyone as you are bent over the tub washing hair so it's easy to count!!!!).  I am washing twice a week in cool water.  I do use the hair dryer on cool to try and dry my long hair a bit quicker while trying to stay away from the roots.  When did everyone have their first round of shedding??

  • Lucky60
    Lucky60 Member Posts: 59
    edited March 2011

    Hi mdg: I noticed shedding more than normal around Day 17 after my first TC treatment. It lasted throughout the 4 chemos, but seemed to be worst for me around Days 17-24 after each treatment and then also just after I washed it. Everyone seems to be a little different, but if you're at Day 18 with no shedding, that's good. Just don't freak if you lose a little over the next week or so--it's normal if you do! Lucky60

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hello Everyone: Well, I am 11 days past my TCH#4. I am loosing more hair this time than ever before, but still not a lot. More clumps come out-small clumps, but clumps nonetheless. It freaks me out each time. The cooler at the hospital was not working right(even though they had a repairman in to fix it the day before my treatment)and my caps were never more than -23celcius to -27(on only one cap), but most were -24 or -25celcius the whole day. Again I wait out to day 21 to see if I loose it all or not. I wrote to Frank about it, but never heard from him. He rarely gets back to me.

    I'm having more pronounced side effects this time---bad taste is constant and pins and needles in my fingers and toes(I guess that is neuropothy). I asked my Onc. what to do and she said I could try Zinc tablets, but I forgot which symptom it is for--the bad taste or the neuropothy. I also asked her if I could try wheat grass-someone told me it really works for neuropothy--she said try it, it can't hurt. I will try to get both today or tomorrow and try them. Did anyone here try zinc? If so, for what? How much and How often? My Onc. also said not to take any vitamins or anti-occidents during chemo, because they interfere with it.

    To the people washing their hair more than once a week- - Frank specifically said ONCE a WEEK! You can use conditioner, but no chemicals---only organic, leave-in kind.

    I wish all these rules were written and given out to us all.

    By the way--the hair nightmares are common--don't worry as time goes by they fade away!!!  

    Keep Positive /Keep Laughing!!!

    Nancy

    P.S. I just spoke to a friend about cold caps and she knows an editor at SELF magazine and she said maybe she can get her to do an article about cold caps!! Let's hope so, that will be National!!

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

    I guess I will have to cut back on my washing - I thought it was twice a week.  I guess I have read so much stuff I can't even remember anymore!  It's hard to do only once a week because I workout 5 days a week and sweat even during chemo weeks.  Ick!  I do the 7 day no wash on chemo weeks and I can't imagine doing that every week.  It's downright gross.  Maybe I can wash every 5 days or something..??  I am using all organic, chemical free products.  There are actually a lot of choices out there if you read labels - even at your regular stores like Target, Walmart, CVS. 

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

    Ladies:  I guess I thought the hair dries out during chemo so does it get greasy/yucky from the chemo?  I too work out a lot and that will make it worse but I'll deal with it (what choice do we have?).  I'm also doing a clinical trial of exercise during chemo so that will be more exercise and more yuck hair. 

    You ladies amaze me!

    Thank you, Arlene

  • Julia1969
    Julia1969 Member Posts: 85
    edited March 2011

    Back in some old posts I seem to remember there was some mention of dry shampoos and baking soda to help between washes.  Can't remember the details.  Remember there is a new normal.  Never thought I could go over seven months without color, blow drying my hair.....  As a friend who lost her hair to chemo once said, "I used to worry about bad hair days, now I'm just happy to have hair."  You have hair- Yippppeeeeeee!!!!!!!!!!!!!!!!!!!

  • Steph42
    Steph42 Member Posts: 18
    edited March 2011

    KrisKat and other oily hair penguinistas

    I'm going for my 4th treatment of taxotere and carboplatin on March 22. During my first treatment my hair was so oily I couldn't stand it. I worried that the oil would weigh my hair down so much it would fall out. It didn't. I did break down and wash it after a few days with my regular shampoo, Suave Daily clarifying for oily hair. I used less than normal and watered it down. It worked just fine. During the first treatment I hardly lost any hair at all. Second cycle a little more. Third cycle is when it really hit, and it was scary at first. But my husband reminded me that it wasn't any more than I would normally have lost in a week and I still have a lot left. A week after my third treatment I went to a big evening work event and no one noticed. Coworkers who didn't know I was going through chemo had no idea. Everything really starts to dry out so by the third treatment oil is not a problem. I'm now ok with washing once a week and it's not bad. I put it up in a loose pony tail the last few days of the week and you can't tell it's dirty.

  • Steph42
    Steph42 Member Posts: 18
    edited March 2011

    Hair at 59 days

    Here is my hair 59 days after first chemo. Going for 4th treatment in 3 days. 

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

    Steph:  You look GREAT!  Thanks so much for sharing!  We 'newbies' just need to stick to the regimen and we should be fine.

    Assume you are getting Herceptin too?  Your chemo is the same as what I'll have!

     You are an inspiration!

    Thanks, Arlene

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    keeppositive: You are doing great! Yes, each cycle brings a bit more hair loss, but in large part this is cumulative: that you are only washing your hair once/week rather than daily. The hair care ground rules are available through PCC and in particular in the ***VIDEO**** Take those instructions literally! Wash only once/week and in cold/tepid water with gentle/minimal agitation, with half (at most) the amount of shampoo. But use chemical-free shampoo, if you use conditioner to detangle, don't get it on the roots and rinse thoroughly. Use only a wide-tooth comb, not a hairbrush. (Caveat: this info is for PCCers; I cannot speak for Elasto-gel or Advance cap hair care treatment.)

    Though you only wash once/week, it's fine to rinse daily in cold water -- I did. If your hair is oily and feels icky/flakey after the first chemo, don't worry: the hair adjusts and actually begins to look normal, then eventually looks a little drier than usual by the end. 

    Just remember, it is a very narrow "window" of events which help us hang on to our hair, so please follow the hair care protocol just as you follow the cap regime during chemo! Temps are important, length of time of caps is important, diet and exercise are important (your liver function is a big part of this remember!) and your hair care regimen is important. And worth it!

    Hang in there!

    Steph: You look great!! It doesn't even look like you have the traditional "above the ear" hair thinning! Keep on keepin' on!

    Susan 

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hi Everyone,

    Just for general info: Many years ago a hair stylist told me that the more you wash your hair, the more you stimulte the production of oils. So I statred to wash less and less often and my oily hair became less and less oily. Once or twice a week is my normal wash cycle, and my hair  was not oily at the start of chemo and isn;t now. My hard part is the lack of style-no haircut since 2 mos. before chemo(one month overdue for cut and color at start of chemo) and now 3 mos after start I am 4 mos in need of a cut and color. My hair looks like a flat unruly grey rooted mess, but as I've said before...in the past I would not have left the house with hair that looked evenly remotely like this, but now I proudly go out with MY HAIR and show it to all!!!  See what a little prospective can do!!

    Again, has anyone used Zinc tablets for the bad taste? If so, how much and how often?

    KEEP POSITIVE and KEEP LAUGHING!!!

    Nancy 

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

    Keep Positive:  I'm curious about the zinc too.  It is in my BComplex (which oncologist says is good to take and especially the B6 which helps with potential neuropathy. 

    Hope I haven't messed anything up but I had to trim my bangs since they were below my nose and my chemo begins 3/28/11.

    Sounds like you are doing so well with all of this and that is so wonderful.

    Happy Sunday everyone!

    Arlene

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

    It is a dreary, windy, rainy, yucky day here so I'm busy sending emails to Research Directors at various Cancer Centers in our area regarding the cool caps.  Hoping to get more folks on board with the research and ultimate FDA approval.  I didn't get anywhere with my oncologist (and she admitted they work) so figured I'd try another route and will address it with others in the area too.

    Hoping it might spark an interest with someone!

    Arlene 

  • mtri111
    mtri111 Member Posts: 67
    edited March 2011

     For the bad,metallic taste, this is great:  SMARTMOUTH mouthwash.  Get it at CVS- type pharmacy. It is 2 solutions that get mixed and then you swish.. it does a good job obliterating the rotten taste. I discovered this stuff via a friend who is a heavy smoker.

     For the neuropathy .. wish they'd tell  people that taxotere,  instead of taxol, seriously  avoids this nasty effect.  I had to object, note that as a musician, NO neuropathy was the only thing tolerable.. and the switch to taxotere was made immediately. It is as efficacious as taxol.

     Try L-glutamine for that, though.. get in vitamin store or on line.

  • mtri111
    mtri111 Member Posts: 67
    edited March 2011

    GIrls:

     When the coldcaps conversation is broached with health care people, I am still encountering the pushback about  scalp mets.  We have discussed this a bunch at this forum, and i have a few references but it would be GREAT to have ONE definitive list  and the refutations of that myth..to have at the ready.

     Any of you who have this kind of material, perhaps post it here (or PM  me) and i will gladly put something together.

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

    MTRI:  Here's a good article - you may have to register to read it.  It was sent to me from the Advanced Cold Caps folks and is pretty good.

    http://www.medscape.com/viewarticle/737144

    They actually discuss the ElastoGels in this article (I'm buying mine outright and as I've said will be donating mine when done.

    I sent this link as well as others to our centers here. Hope it helps!

    Arlene 

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Hey all~

    MY FRIEND NEEDS HELP...

    She just tried the Penguin Cold Caps for a trial run at home and there is a spot on the back of her head which usually thumps when she gets a migraine.  The Cap felt really cold all over which she could deal with, but the spot at the migraine was like "a sharp knife was being stuck inside of it."  She could not stand that and took it off.  Do you think it has something to do with a blood vessel that constricts during migraines and is being affected by the Cap?

    She is going to try again tomorrow but she is upset...

  • littlepenguin60
    littlepenguin60 Member Posts: 16
    edited March 2011

    Hello, just thought I should weigh in for one more time. I abandoned the penguin cold caps after using them three times. I am scheduled for a total of six treatments -- #5 coming up this week. I sure don't want to be a 'wet blanket' for anyone but I truly found the caps more excrutiating each time I used them -- I too have had a history of migraines (don't know if that made it worse or not). Also, I am on FEC and I was losing hair like crazy plus the hair that remained wasn't 'passable'; I still had to wear a wig out in public. I found a couple of cute wigs and am just going with it. I'm not happy about it -- really gave it my all to keep my hair but it wasn't to be for me. It was costly -- in many ways -- but I'm glad I gave them a try. I had great support -- did the dry ice -- the whole thing was an all day circus, BUT if I could have kept my hair, I would have probably endured the brutality of it. I think it's fabulous the way so many of you are keeping your hair through the whole chemo experience! Best wishes to all -- mainly we want to get through our treatments and rid ourselves of any trace of cancer!!!

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Oh littlepenguin60~

    I am so sorry you had to stop using them.  Maybe it does have something to do with the migraines?  Hugs to you...

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

    Hey LittlePenguin:  I too am so sorry that they didn't work for you.  I haven't started chemo yet and I am going into this with the knowledge that it may not work for me...fortunately the ElastoGels seem to be much easier (and hope they are as successful) to use.

    You are so right that the MOST important thing is ridding the body of the cancer.

     Best wishes to you LP!

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