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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Drim
    Drim Member Posts: 134
    edited April 2010

    I cannot thank all of you enough. I spent hours upon hours reading this thread and now I too will be doing the Penguin Cold Caps. My oncologist was actually excited that I was going to do this as she was hoping to do a study of the PCCs in the near future. I guess I'll be her guinea pig.

    I hope I will be as successful as so many of you wonderful ladies have been!

  • KorynH
    KorynH Member Posts: 84
    edited April 2010

    Ang-

    you look amazing! HEALTHY too! I am so glad for you that this worked. Had I known about it beforehand, I definitely would have done it! Even if it cost a million dollars! Losing my hair was the hardest part,  as I have shared with you. Thank God you are done with TC and can start feeling better soon. I look forward to Sunday'sluncheon with you and our Northern Va. gals!

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    Thanks Koryn!

    I think what led me to the Cold Caps was that I was determined to find something that would help me keep my hair.  I had no idea that there actually WAS something out there.  I hope my oncologist will spread the word about them. 

    I am looking forward to meeting the Northern Va. bunch...

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    I'll be thinking of you Drim -

    Let us know how it's going...

  • Drim
    Drim Member Posts: 134
    edited April 2010

    Ang - Thanks so much! You look amazing, your hair is perfect and your daughter is adorable. God bless and I will certainly keep you all posted on how it's going!

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    Thanks so much Drim!

    I know what site to go on when I am feeling down.  You all fill me up with your compliments!  Thanks.

    For all the Cold Cap ladies that are done using them - when did you switch back to your old shampoo, conditioner etc?

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited April 2010

    Ang7:  I am wondering the same thing. Also, when can we start curling or blow drying our hair again?  I figure I am going to wait at least another month since I will be having my surgery next week and then I will be off work for 3-4 weeks so no sense on doing any styling of the hair since I will only be around the house.

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    Kelli1970:

    Guess I will wait on my hair also as I am having hernia surgery on my DIEP flap area May 10th.

    Will be thinking good thoughts for your surgery... 

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    Kelli1970 -

    Just got an email from Frank that told me to wait 6 months to switch back to my regular shampoo!  He said it would take that long for my hair to get back to normal.  Sigh.

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited April 2010

    Ang7 -

    I have been using Pure Results (by Regis) shampoo and conditioner and really like it.  I got it at BoRics and it only cost about $25 for both along with a hairspray (which I only use if I am going out).  I have had it since January and only about 1/4 of the bottle is gone since I only use it twice a week. 

    Thanks for letting me know about the waiting period for switching back to normal shampoo.  I am looking forward to being about to put a curling iron to my hair again (not everyday mind you - but every once in awhile!!)

    I will be sending you good thoughts on your surgery too... Take Care

  • shadow2356
    shadow2356 Member Posts: 93
    edited April 2010

    Wow!! I used my regular shampoo last time. I won't again. I didn't lose any hair though. I will try the pure results. The baby shampoo is too drying.

  • NewportLori
    NewportLori Member Posts: 35
    edited April 2010

    Hi all!  Sorry to be absent for so long.  I used the caps from July - Nov 2009 for 6 cycles of TC and then passed them on to joansf.  I am so impressed at how much additional knowledge has been shared and gained by the more recent women using this forum.  As Frank told me, those of us who use the caps without professional assistance and normal refrigeration are pioneers.  It was not easy trying to use the caps by cooling them in picnic coolers with dry ice.

    An update:

    My hair that survived chemo is still very dry and brittle.  I don't know if it's from using the very drying baby shampoo or from the chemo.  Shampoos that don't dry the existing hair should be studied.

    The hair that I lost at the nape of my neck is growing back extremely curly, but healthy (i.e. not dry and brittle).

    The new hair is a dark gray color that I never had before - my previous gray hairs were mostly white. My surviving hair also seemed to get darker.  I tried using Loreal's "Excellence to Go" #8 last weekend and ended up with medium brown hair, unlike my previous blonde with white gray strands.  This was the first time I tried coloring my hair since early July 2009.

    Like Geralyn, I used Latisse to help my eyelashes and eyebrows grow in quicker.  It seemed to work, but I also stopped using it after they grew back and have experienced a subsequent thinning of my eyebrows and loss of eyelashes as she has.  It seems I need to obtain another prescription. 

    Regards,

    Lori

  • sebm9
    sebm9 Member Posts: 488
    edited April 2010

    Hi Lori,

    I received the caps from Joansf; it's kind of nice to know their "history" -- kind of like good luck or karma coming my way! Joan also generously passed on the coolers, gloves, thermometers, even a spare pantiliner for my forehead! Thanks Joan!!! I told her we should sign the coolers as we pass them along to the next user. I had my first of four TC treatments 10 days ago -- had NO side effects other than headache for 3 days, tastes and very strong odors, but not even bone pain from the neulasta. I've been swimming, hiking, eating a bland diet, am dying for a cup of coffee but am focussed 100% on helping my body heal. I am active regularly, so staying active during chemo has not been a mental or physical challenge, and the energy boost is instant. Had followup bloodwork yesterday and my numbers were outstanding. Next week is a "normal" week, and I feel strong going in to Round #2 on May 10, at which point I'll be halfway done. My last treatment is scheduled for the first day of summer, so by summertime I'll be done with this phase of treatment.

    I too didn't have great coverage at the nape of neck and behind the ears. The caps were laborious but, honestly, the first treatment went quickly because we were so busy. My oncologist is bemused by the whole thing, my social worker is *thrilled* because another woman (at another hospital) in her support group has just successfully completed use; I am the guinea pig at my hospital. On my first treatment day, one by one the care team came to visit. The pharmacist found it all funny, but then he went back to his office, googled it, and came back offering freezer space (they didn't have enough, unfortunately). My acupuncturist thinks this is fantastic and is probably as supportive as my social worker; she  lead the way for integrative medicine to be part of the treatment plan at my center and is used to the reaction from the mainstream medical community. I'm not used to being the center of attention, and kind of hate it actually, but I feel a little bit pioneering. I can tell that the care teams are trained very well to be supportive of every individual's need -- whether it's a special diet or spiritual support or cold caps -- but I confess that those who are in the sporting-to-snickering range, always give me pause. Reading everyone's experiences here is the absolute best help I could have in not letting their doubts or negativity seep in. Yesterday, my oncologist again told me that next week all of my hair would fall our and I had better get my wig in order....

    And, maybe some or all of it will fall out. But my motto is: My Hair Will Grow Back, My Cancer Won't. 

    Btw, in the pre-chemo bloodwork my Vitamin D level was measured and it is in the tank: a 7! I've been on 50,000IU weekly for 8 weeks but will always take a high supplement. 

    Best,

    Susan 

    Diagnosis 2/3/2010, IDC 2.3 cm, Stage IIa, Grade 2, 0/3 nodes, ER+/PR+, HER2-, Oncotype 20 

  • NewBride
    NewBride Member Posts: 126
    edited April 2010

    Hello ladies.  I am 6 days past TX#2 and I still have a full head of hair.  I have experienced some thinning at my temples and at the nape of my neck but my hair is long and covers all of that.  All in all I would have to say that I am pretty stoked over the Penguin Cold Caps.

    Regarding shampoo: I use Aveda Shampure shampoo and conditioner. Aveda is readily available at salons. I dilute the shampoo by 50% with water and smooth it through the hair rather than massaging it in.  After rinsing I apply conditioner being sure to avoid my roots.  Then final rinse with water.  My hair is staying healthy looking and doesnt tangle easily. I'm washing my hair twice a week.  Like all of you, I wish I could wash my hair more often but at least it's there to wash at all.

  • NewportLori
    NewportLori Member Posts: 35
    edited April 2010

    Susan, I'm glad to hear you now have the caps I used.  If you're only going to have 4 TC cycles you should still have a full head of hair based upon my experience.  No one could notice any hair loss at that point when I used the caps.  The cummulative dose after 6 cycles thinned my hair a bit too much and I resorted to a wig.  My hair was not thick to begin with, was very straight and chin length. I'm also slightly hyperthyroid, which also causes hair thinning.  The sad thing was that since I was getting neoadjuvant chemo with an MRI after each 2 cycles, we learned that the last 2 cycles had no effect on my tumor size, so the extra thining was a waste. 

    I have more than enough hair to go without a wig, but want to get a cute style and color since it's much shorter than I've ever worn as an adult.  I like the look of my wig better than my own hair these days, but at least I know I have hair underneath. 

    One mistake I made was cutting my hair after the big loss at the nape of my neck.  It had grown to shoulder length before chemo and I had it cut to chin length after the first cycle.  Had I left it longer, I could have used extensions - I just never thought about that. 

    The use of panty liners on the forehead is ingenious!!!  I used the kind of cotton rolls that they use at beauty parlors during color or perms. 

    A good thing is that I decided against getting further chemo.  I'm going to start rad tx next week after which I will get monthly Zometa IV and take Femara for 5+ years.  I also decided not to have an ALND despite that 3/4 SLN were positive.  Having all of these decsions made, has lifted a great deal of stress and I am feeling much more like myself.

    Best wishes to all!

    Lori 

  • Ang7
    Ang7 Member Posts: 568
    edited April 2010

    NewportLori -

    It's so good to hear you are feeling more like yourself.  You are one of the reasons that I tried the Cold Caps in the first place.  Thanks!

  • sebm9
    sebm9 Member Posts: 488
    edited April 2010

    Lori,

    Thanks for the encouragement! The pantiliner is quite a sight -- I've a photo of me with the cap on my head, pantiliner visible (I have a widow's peak so the curved liner was a pretty good fit to my hairliner, we customized a bit), eating a pita sandwich...my husband is SWORN to keep that photo private! I have thick, curly, shoulder-length hair -- and had *just* got a hair style I quite liked, after being hair-phobic for years (too many awful childhood haircuts to be adventurous!). I do have a wig appt. on Monday just in case, with my visiting mom along. This will give us a chance to exorcise all of those awful haircut experiences together :-) So much housecleaning gets done with cancer!

    I did not cut my hair at all (other than tidy up the ends, because I knew I wouldn't be cutting for a while after chemo), so if I lose at nape or behind ears, my other hair will hopefully cover it, or I could use headbands to camouflage it 'til regrowth. 

    Not washing my hair is very hard because I have oily hair --I've have had more skin breakouts since starting chemo and PCC between unwashed hair and chemo-acne -- but worth it for this. I swim every day, luckily in a pool that uses ozone rather than chlorine, so I use the swimmer's trick of wetting my hair first (in cold water) then gently putting the swim cap on and tucking the ends under the cap with no pulling. After the swim, careful removal of the cap and a nice gentle cold-water rinse of hair and gentle detangling with a wide-tooth pick-type comb if needed, working from the bottom up. Once a week a gentle shampooing as everyone is describing here, and conditioner on hair ends but not on scalp. 

    Best,

    Susan 

  • NewportLori
    NewportLori Member Posts: 35
    edited April 2010

    Ang7:

    Thanks.  In retrospect, I now know there were things I could have done to make the caps even more effective (such as not cutting my hair after the first cycle).  However, I know I was one of the early pioneers so not everything went perfectly.  It's wonderful to see all of the advances made by the women who have advanced the knowledge of using Penguin Cold Caps through their own experience.

    I'm so pleased that you had a good experience with them.  You've been a true inspiration here.

    Regards,

    Lori

  • gmp300
    gmp300 Member Posts: 196
    edited April 2010

    Just dropping in to see how everyone is doing!  Sounds great! I love hearing these success stories.  Even you Lori! You are a success too because even though you lost hair and thinned to a point of wearing a wig-your hair is growing back quickly and healthy!  So there is still a benifit of using the caps even if your not as successful in saving all of your hair.  this is a learning experience for all and we ARE Pioneers!  Think of all the women we all are helping!  This is so great!!  Anj-pm me with your address and I can send you some brochures!  Your picture looks great!!  And happy too!!!

    Geralyn (gmp300)

  • bridetobe
    bridetobe Member Posts: 40
    edited April 2010

    Hi all,

     Just wanted to update. Its now been 8 days since chemo # 2 and I still have most of my hair.  I lost quite a bit over my ears, but that's probably because the caps didn't fit so well around the ears and didn't get nearly as cold as other areas. Otherwise, the rest of my head is still fully covered and is covering up the bare spots over the ears. I take this as proof that the caps are working since all other protected areas are still covered with hair. I still am having some shedding but strands only, no clumps. Hoping my hair lasts through the rest of treatments, but so far so good.

    Also, on the awareness front, I've just been in contact with a researcher here in Canada who is going to start clinical trials on scalp cooling in the fall. So small steps...

  • Drim
    Drim Member Posts: 134
    edited May 2010

    bridetobe: That's great news! Congratulations! I will get my caps soon and start treatment #1 on 5/11. You (and all the others) are giving me such great hope. I know this is going to work. I hope you will contiue to keep us updated. Hope you're feeling well too!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010

    Hi All, I start TCx4 on May 7th and plan to use the PCCs.  My hair is thin and straight, really, really straight. My hairstylist suggested a light body perm before treatment so my hair wouldn't look so bad when I go a few days without washing it.  I'm not sure that's such a good a idea since I'm so close to starting. Any thoughts on that?

    gmp300- I left you a message yesterday so we can coordinate the caps.  Thanks for all the info when we taked the other day!  Beth

  • Drim
    Drim Member Posts: 134
    edited May 2010

    Hi Golfer Girl - I start TC x 4 on May 11th. You should join the May 2010 Chemo thread as well.

    I would be scared to do anything to my hair right before treatment as much as I would love to have done the Brazilian hair straighting since my hair is wavy/curly/frizzy. I'm not looking forward to walking around with my hair 'natural' but we'll get through this together!

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited May 2010

    GolferGirl:  I wouldn't get a light body perm or any coloring done before.  I was told by Frank Fonda not to color my hair or even get it cut for 6 weeks prior to using the PCC's.  I do know that some people have had their hair colored a couple weeks prior to chemo because they didn't know at the time, and the caps seemed to work but I was going by what Frank said and not doing anything to my hair to increase my chances of not losing it.

     I hope that helps.  Take Care and Good Luck!!!!

  • GolferGirl
    GolferGirl Member Posts: 57
    edited May 2010

    Thanks for the advice.  I decided to skip the perm.  Unfortunately, I dyed my hair back to its natural color last week (before I knew not to) so I wouldn't be striped (blonde ends, dark roots) as my hair grows out during the process.  I plan to be very gentle to it from here on out and hope for the best!

  • Drim
    Drim Member Posts: 134
    edited May 2010

    Hi everyone! I am freaking out and need some help. I'll be starting chemo next Tuesday - 5/11 and I have some questions about the whole dry ice situation. If I get the best type of coolers, how long will the dry ice stay cold enough to cool the caps? I was hoping we could put the caps on ice the night before but I'm not sure that will work. Also, do you think its better to get the ice in sliced blocks or pellets or something else?

    I got the 2 gallon ziploc freezer bags and planned on using those in the cooler.

    Any advice would be greatly appreciated.

    Thanks!

  • gmp300
    gmp300 Member Posts: 196
    edited May 2010

    Golfer girl--Great advice from everyone!  Please don't perm your hair before chemo!  and your not suppose to color it 2 weeks before chemo.  I colored mine 2 weeks exactly before my chemo (not knowing) and I kept my hair so you should be safe!  Also don't cut it during chemo.  One more thing.  don't wash it 2 days before or 2 days after your chemo.  the reason is so no chemical reaction aoccurs with the chemo drugs.  Good Luck!

    Geralyn (gmp300)

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited May 2010

    Drim:  My husband discovered the dry ice pellets during my last 2 treatments and he really liked them over the blocks.  The blocks he had to chop up but the pellets he didn't.  As far as the dry ice lasting overnight I am not sure.  My treatments were at 10:00 am each time and we would stop around 8:00 am and get the dry ice.  By the time they got the premeds going and I would put on my first cap it was around 11:00.  My last 4 treatments last 4 hours and I would have to wear the caps for 5 hours after so I had them on for about 9 hours total.  By the time I put my last cap on the dry ice was almost all gone except for approx. 1/4 of it.

     Also make sure your helper has gloves!!

    Good Luck!!

  • bridetobe
    bridetobe Member Posts: 40
    edited May 2010

    Getting the dry ice the day before is fine as long as you get extra to cover for loss. I have to be at the hospital at 8:00 AM on treatment days so we don't have a choice but to get the ice the day before. I typically order four 25 pound bags (total of 100 lbs). We usually only need 3 of these bags so we have an extra bag to cover any loss and by the end of the day we still have quite a lot of dry ice left over.

    Hope this helps!

  • geewhiz
    geewhiz Member Posts: 671
    edited May 2010

    Well, I will be the rebel stepping out of the closet here. 

    I KNEW not to use other shampoos, highlight my hair etc...but I did. Before treatment, during treatment and after treatment. And after 6 TCH's that ended months ago...I have a full head of blonde hair. It's a little dry...but I kept leave in conditioner on it. I did nothing to my hair for 48 hours prior to each treatment and 48 hours after each. Frank said it creates the "cocktail" that causes problems.

    I got just a few strand highlighted...just to see. The stylist did not touch the scalp. After a month with no issues...I got bolder. Then carried on caring for my hair as normal.

    It's a little thinner as caps definitely need redesigning around the ears. But ladies, I highlighted, used regular shampoo and curling ironed throughout the six months. Frank will probably not be happy about me posting this :)...but like we said...we are pioneers. It all worked for me!! 

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