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Cold Caps Users Past and Present, to Save Hair

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Comments

  • LinAnnM12
    LinAnnM12 Member Posts: 3
    edited January 2013

    Thank you! Reading this & knowing you know what I'm going thru helps because we can all relate & truly bond these crazy regimens. I think you look good in your pics, so that makes me feel better. I think it's the Andriamycin that's causing more of the shedding. I'll try to post pics tomorrow :) thanks for the responses. I was inconsolable last night, but reading your posts made my day & truly lifted my spirits :)



    Linda :) headed for round 2 on Friday

  • schoolmom
    schoolmom Member Posts: 327
    edited January 2013

    Just an FYI for some of the early ladies.  I shed most heavily between rounds 2 and 3.  So when we did the caps on rounds 3 and 4 I had my helper ladies velcro the cap loosely before putting it on my head to avoid my hair getting tangled in the velcro.  They tightened and adjusted once it was on my head.  The first 2 rounds when I would bend over to take the caps off there was always hair tangled since my hair is so long.  I was so paranoid after shedding sooooooo much after #2 that I thought it might help.  Every cap slid off easily and I made it through 3 and 4 with no velcro hangups .  Just an idea. 

  • mdg
    mdg Member Posts: 1,468
    edited January 2013

    Linda....we get it!  I remember thinking I should take a xanax before I washed my hair!   Crazy right?  Good luck and stay positive!!!

  • Skibunny
    Skibunny Member Posts: 54
    edited January 2013

    Thanks Loafer and Dancetrancer! That means alot! I've worked really hard on it, but it's difficult getting people to read it!!

    Loafer - I can't remember which one I used. I went onto their website and did the little questionairre thingy to work out which type was best for me....and then bought that one on Amazon...!

    Ali68 - I've heard of the FAST shampoo. Sounds amazing! My hair's is all grown back now and I don't want it to grow any faster as I'm spending a fortune on dye on my grey roots...!! So I wont be trying it, but would be really interested in seeing if you thought it made a difference...

    The cold cap rocks! 

    x

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Hey y'all, 

    I finished my 1st treatment last night. Well we were done with the chemo around 5:00 but the cold caps stayed on till 9:00. All went well, I think. They weren't nearly as bad as I thought they were going to be. I stayed under my electric blanket and felt fine. My husband was uber psychotic about cap placement, timing, icing, moving my hair part (but after a few caps it was jsut a matted mess anyway) and the extra cold brow bands, or whatever they are called. My hair is fairly long but it is fine. I have (currently anyway) a ton of it but it is fine. So, we will see. I did use the bands to cover the back of my hair line since the caps didn't cover that part. Fingers crossed!! The only real problem we had was that I am really only 1 of 2 patients using the cold caps and the other lady is a newbie as well, so the nurses aren't really used to the protacol or how important following the directions are. Anyway, my husband told them several times that he had to change the cap/bands 10 minutes into the actual meds (or whatever the time is) and the nurse insisted it was 10 minutes. Nope. It was 20. I could see my husband getting a little irritated, but luckily no one else could notice. Just me. You know, 20 years of marriage and you definitely can tell these things. Besides that... it really went pretty smooth.

    Today i'm feeling ok. Just tired and have a horrible case of chemo brain. Argh. Just had my shot and was so glad to get back home to my pj's and my couch. LOL!   

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Michelle, 

    Back in August I was given my 18 year year clean cancer free bill of health from my oncologist. (An onc that I'm not seeing any more because he so totally dropped the cancer ball. Argh) Then flash forward to October and my wonderful OB that I'm been seeing for 16 years, found a little lump that he thought was a cystic area. (But he made a face when he felt it, so I knew. ) I had my mamogram a week later on Monday, and the next day (Tuesday) I got a call saying they wanted more scans. (A call that no one wants to get, but as a cancer survivor already it just made me cry and cry.) Wednesday I went in for more mamogram scans and a breast CT. Thursday was the biopsies. That's the story luv. One that I wished I didn't have to tell, but it is what it is at this point. Big hugs and smiles!!

  • 3131
    3131 Member Posts: 4
    edited January 2013

    Hi LinAnn, Im in the same boat as you.  Same diagnosis, triple negative 5 cm, and same regimen x6.  Started with the cold caps on Dec.6 and will be going for round 3 on Tuesday.  I have to say I have had minimal shedding but have defintley noticed more after the second than the first.  Glad to know someone out there is as nervous as me with this regimen.  It is a blessing to have all of these wonderful women post on here to give us such encouragement, it makes it so much easier to go through!1 Just realized your in Dallas, I'm in New Orleans, nobody around here has ever heard of this.  They think Im crazy for thinking that this is going to work, Im out to prove them wrong :))))) 

  • Rhonda2
    Rhonda2 Member Posts: 99
    edited January 2013

    Amrdbit,

    I'll be the first chemo patient to use Cold Caps where I will be getting my treatments. Onc's nurse called me today to make sure I pick up the prescriptions, so I took that opportunity to tell her our plans on the Cold Caps.....ha, she has never even heard of them!! Surgical nurse in my town said if I'm successful that I would be requested to be a reference for others to come. I don't live in a small town so I'm surprised that nobody else has tried them here, or at least where I'm getting treatment. If I can help someone else, that will be a big plus for me! I'm glad to hear your first session went well. If it helps, one of the ladies said to put the cap together before putting it on your head and then tighten it up once its on. I don't have mine yet so I can't give first hand knowledge.

    Keep us informed on your progress. Best to you.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Rhonda, 

    I'm right outside of Dallas, so I couldn't believe I was 1 of 2 people using them. My PS said he's had 5 patients use them and had great results. Fingers crossed for us both! (And every one else of course!!)

    I did notice that the moleskin that I had stuck to my forehead got SO stuck, that I almost couldn't get it off. I think it took the top layer of skin with it. That was honestly one of the worst parts of my day. Next time I'm using a panty liner in stead. It was kind of funny though. To keep my ears warm, I hung a sock over each one. I looked like a puppy, but my ears stayed warm and that's all that counts. :)

  • Rhonda2
    Rhonda2 Member Posts: 99
    edited January 2013

    I received a few tips for Cold Cap users -



    Number each box using duct tape to keep tack of the cap boxes

    Wear a Hair Cap under the cap to prevent hair from being caught in the Velcro

    Moleskin to prevent frost bite on the forehead and back of ears

    Wash Cloth, or soft item to place between your chin & the cap strap



    I hope it helps!!!

  • Rhonda2
    Rhonda2 Member Posts: 99
    edited January 2013

    Oops,



    Forget the moleskin!! I posted before I read your post.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Rhonda, 

    LOL!!! Maybe I'm the only goofy one out there that had this issue. It made total sense until it didn't want to come off. Any other tips from anyone? I'm totally open and have 20 days to come up with a better plan for next time. :)!

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    I do have a solution...we cut the moleskin from the pattern and then peel backing just like1/4 inch. That is plenty to still stick it to your head. You can then keep using that same one if you want, trimming another small bit of backing each time. My consultant had us do that and it was great...moleskin much better than pantiliner in that spot.



    P.s. today was round one...we may have looked like a freak show, but all went well and I am now happy to be done...started at 1 finished at8:30...had to stop twice on the way home for cap changes due to distance and traffic, but we made it!

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    Sorry I should have said 'peel and trim' a small bit

  • ndmk
    ndmk Member Posts: 27
    edited January 2013

    Armrdbit....this sounds weird but what I do is stick the moleskin on my neck or arm to pick up some of the oils prior to sticking it to my forehead.  That way the adhesive isn't as strong and doesn't take a layer of skin at the end of the day :)

  • schoolmom
    schoolmom Member Posts: 327
    edited January 2013

    FYI, be careful about wearing any caps / protection between the cold cap and your scalp.  You want the cold to get to your scalp to protect the hair follicles.  If you are worried about the velcro thing, train your helpers to loosely velcro the cap before putting on your head and tighten when on.  It worked great for me for rounds 3 and 4.  I worry when you talk about something between your scalp and the caps.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited January 2013

    I had pain from removing the moleskin, too...OUCH!!!!!!  The tip from hope49 is a good one - wish I had known it when I was doing the caps!  

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Hi ladies, 

    Well, I'm 2 days post treatment. Chemo was wednesday and my shot was yesterday. I'm waiting for the other shoe to drop so to speak, b/c right now I feel fine minus a bit of chemo brain and no appetite. Have to try to get little bits of food down when I have to take my vitamins, but really don't want to eat anything. My stomach feels fine (so far) but still just don't want to eat. The problem is that I'm going into this with no weight to lose. My onc has warned me and my husband that I need to eat eat and then eat. Yeah, easier said then done. Working on it. I'm at 5'3 and about 108lbs.... so I'm working on it. I also haven't slept in 2 nights post treatment even though I'm exhausted. Maybe tonight will be the night? Fingers crossed! Last time around (18 years ago) I slept like a darn rock. Waiting for that rock to show up again. LOL!

    Hope, Thats' a great idea about the moleskin!! I wish I had thought about that myself, but I'll definitely be doing that next time around in 28 more days. You rock! Thanks!!

    Ndmk, It was definitely strange, and weird and painful. Good lordy. LOL! You tips are great ideas too! I'm SO glad that y'all are here. (Wish it was for a differnt reason, but the tid bits, info and love that I pick up here are invaluable. LOVe you guys!!)

    Dancetrancer.... I know, really? Sorry you had to go through the moleskin pain too. I was beginning to think I was retarded b/c I thought I was the only one who had that problem. Next time we'll both know better. Smile!!

    Lot's of Friday love to y'all and to anyone who has treatment today. Big Texas hugs and happiness coming your way!!

  • Laura5
    Laura5 Member Posts: 419
    edited January 2013

    I put part of a pantyliner under the moleskin, leaving enough space around the liner for the moleskin's adhesive to stick. I also used pantyliners at my temples and over my ears.

    As far as hair getting caught in the velcro, we fastened the front velcro before placing on my head, then adjusted after, and I held my hair down while cap was placed on my head. 

  • Hortense
    Hortense Member Posts: 718
    edited January 2013

    I did not have trouble with velcro catching my long hair. I think that was because my experienced helper loosely fastened the velco straps before putting the cap on, then had me hold the caps down firmly as she tightened all of them properly. She added the gelbands just below the caps to cover areas not covered by the caps themselves.

    We also reused the same moleskin for each session. She added a second layer of moleskin after I got some frostbite on my forehead the first time. My forehead became very swollen and the skin along the top 1/2 " looked like a dark tan which peeled off eventually.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Ok, I'm now three days post first CT treatment and feeling pretty good. I'm not however digging the feel of my hair. Lol! (I've been bald before already, so trust me, I'm NOT complaining. I still have hair..... :)!

    I washed my hair ever so gently yesterday with very cool water and maybe it's that I didn't get all the approved shampoo out of my hair b/c I was trying to be so gentle. But my hair feels oily, and normally..... unless I've been doing several hours of hot yoga.... My hair doesn't typically get oily. What's up? Its only been a day since i washed. Maybe it's lack of hair dryer? Maybe it's lack of products? Yeah, my hair is longish and this feels SO strange to me. Any ideas?



    Xoxoxo Deb

  • Laura5
    Laura5 Member Posts: 419
    edited January 2013

    Amrdbit, I think it is a combination of organic shampoo, cool water, and barely messaging your head. Everyone has the same problem in the beginning. Very soon the chemo will dry out your hair and it will feel/look better.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Thanks Laura! I made the move to the all natural deodorant after trying 6 of them that I didn't like, but this hair thing is craziness. 45 years old and for the first time.... Oily hair. Lol! Oh the joys!

  • Laura5
    Laura5 Member Posts: 419
    edited January 2013

    Amrdbit, Oh I know what you mean. I had never had oily hair either.

    Natural deodorants... I have a whole cabinet full of them. Finally found one that somewhat works.

  • Amrdbit
    Amrdbit Member Posts: 41
    edited January 2013

    Laura, I finally settled on this one that looks like a crystal and you run it under water for a second. It seems to work ok. Not sure about Dallas in the summer though..... I might be on the hunt again. Lol!!!

  • ndmk
    ndmk Member Posts: 27
    edited January 2013

    Hi ladies...are there any women who have successfully used the PCC with 6 cycles of TC?  With all of the shedding I've been experiencing, I'm certain I would have a comforatable amount of hair if I only had 4 cycles but because I have 6, I'm doubting that I will have any hair left.  I'm about 2 weeks into my 3rd session and the shedding has been non-stop since my 2nd session.  I'm pretty sure I'm losing at least 100 hairs per day. Quite possibly double that on bad days.  I'm doing silica 2-3x per day, iron supplements, protein shakes (vegetarian)....still shedding like crazy!!!

  • michellej1980
    michellej1980 Member Posts: 51
    edited January 2013

    ndmk - I have the same concern. I had my 4th TC on Friday and would be quite optimistic about keeping enough hair if I'd now finished treatment but am worried that the extra 2 treatments may be too much for my poor follicles. I'm very thin on top where the cap doesn't fit well.

  • Laura5
    Laura5 Member Posts: 419
    edited January 2013

    I had 6 TCH (my C was carboplaten). I ended with a lot of hair. I noticed ndmk mentioned vegetarian shake, not sure what that is, but Frank told me carnivores seemed to fare better. Maybe there are other vitamens you can take? Michelle, do you have bands or something to make your cap fit better on top? A lady I helped folded a towel lengthwise a few times and put it over the top of her head where her cap didn't fit properly, and brought the sides of the towel under her chin and held the ends while pulling down. 

  • hope49
    hope49 Member Posts: 239
    edited January 2013

    Hello Ladies!

    Well today I braved my first hair washing and all I can say is I'm glad they only recommend once per week!  I use a bowl and measuring cup to pour cool water over my head in the shower (BRRRR!!!) and then mixed some of the Miracle PH shampoo with water and kind of patted it on...rinsed and then same with the conditioner, just applying to the ends and shafts and one more rinse.  Blotted with a mens cotton t-shirt and sprayed a little California Baby detangler and then combed with a wide-tooth so slowly.  I think fewer hairs came out than my normal washing, so not alarming, but every last one counts so much now!  Just letting air dry and hoping for the best.  

    I've noticed a few suggestions about the gel bands for the back of the head and I'm wondering if I should order them, or if it's too late.  I showed my consultant how low my hairline is in the back and we were not able to entirely cover it, and of course the front is more important to me.  Any thoughts???

    I am taking the silica as Frank prescribed me, 225 mg 3X a day and also Biotin, working on protein and LOTS of water...any other suggestions???

    Thanks as always for the support and sharing!

  • Loafer
    Loafer Member Posts: 56
    edited January 2013

    Hi Hope ~



    I would recommend the gel bands. I also have a low hairline and did not have this area covered. I lost my length between treatments 2 and 3. Good luck!



    I couldn't decide between Joan rivers or Toppik hair builder to cover bald patches and thinning hair, so I just ordered both. I will let you know how it goes. Have a lot of grey coming in, just not evenly.



    Went out last night with a hat and it took 10 years off. Can't wait to get some hair regrowth and be able to color this grey.



    Good luck to you ladies starting out!!

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