Cold Caps Users Past and Present, to Save Hair
Comments
-
P.S. I currently am using this product on my highlighted hair, and it is awesome, too. I didn't use it during cold caps b/c I did not know about it. Either product I have mentioned has done wonders on my hair.
0 -
I went to a look good feel better workshop tonight. I realized that everyone else there thought I hadn't started chemo yet. It was kind of awkward as all but one other attendees already had total hair loss. I decided there was nothing to be gained by discussing my cold caps and just let them keep assuming I hadn't had chemo. It put things in perspective about my thinning hair and a few "spots" for sure. It is funny how since my DX I get these little ''messages" just when I need them.
0 -
Texas - I had a lot of dryness and breakage and I am blonde also, although helped out by my hair dresser to a certain extent
I have to wonder if it was possibly caused by the freezing temps of the cap. I can say that my hair grew at a very good rate thoughout chemo and that, looking back, the replacement hairs came in relatively quickly and filled in fast.My avatar shows how my hair looked a month after I finished chemo - it was dry - and you can see that breakage has thinned it in the longer areas. I had to trim it several times to get it to look better, which shortened it to below shoulder length, but six months later it looked very healthy again.
0 -
I am a past PCC user when there were only 35 pages of posts... I read every one... Worried it was a scam or like those weight loss commercials... Plants all the way around.... I cut my hair right before chemo about 6 inches ...not totally believing ... I have just past my 3 yr PFC... January 13th... And have barely cut my hair... Just the other day I thought I should... I'm 48 ...cut it... But my sister and a friend said leave it ...it looks great.... So for now ... I am a 48 yr old with hair half way down my back :-).,,
I am one of those that shed for 6 months... I barely lost hair during chemo....and for awhile I really did think I would lose all my hair after chemo ended... But I didn't, it did thin ... And I was shocked at the curly pieces that grew around my ears and forehead... Didn't realize that is probably where I shed the most....
But especially for TC chemo... The caps do work.... It's so nice to see how many are using the caps.... I'm proud and happy for each and every...
I am also triple neg.... Wondering where Holly got her info... Chemo has a very hard time breaking the blood-brain barrier... Not sure there is any evidence that the caps prevent this....And not worried about scalp mets....I got mouth sores and chemo brain... So of course hoping her statements have no clinical evidence..... My MO is pretty strong trip neg research... For instance no HRT for me b/c she think it can convert.... But was ok with the caps... It's all based on theory...... And some luck...
What I can say is that I am very happy I used PCC... They let me get back to my life quicker, and to a state of normalcy after this crazy crazy experience where nothing is "normal" .... The instant menopause and those symptoms.... That's what's hard .... :-) LOL
my thoughts and best wishes are with all of you.... What a bunch of innovators we are!
0 -
Hello Everyone,
I have not posted in a very long time, but I want any skeptics or newbies to know that the cold caps worked like a charm with me. My experience was that I shed more hair after the final chemo rather than during chemo, but even then it was only about 30% volume that was lost. Now my hair is growing like crazy and thicker than before chemo even began. My hair grew through the chemo treatments and was gray where the new growth was so I colored my hair with something similar to a henna. After the fourth month past the final chemo (May 9th) I began using Preference by Loreal with wonderful results. I've colored my hair several times since then and I highly recommend cold caps to anyone who wants to feel normal when going through an abnormal situation.
I believe I was the first one to use them in my town and deffinately the first one to use them at my Oncologist office. All the nurses and drs. are amazed at the success I've had at saving my hair. The nurses saw first hand how much was involved in changing the caps at the precise time and are now believers because of the outcome. Granted, I did not have ACT, rather TCH, but I would have tried no matter what the treatment.
To all the new comers, believe what you see, it's real, and I'm so thankful that we live in a time when this is available to us all.
Rhonda
0 -
I think for me the cold caps are about avoiding unnecessary trauma. BC has been horrible. I worry constantly about my prognosis. I lost my breasts. I'm being poisoned with chemo. If I can avoid one more thing that causes me distress it is worth it. The other positive thing that is coming from this is that it has forced me to reach out to friends and family and ask for help. I asked five people to be part of my Mad Cappers team. I'm always independent and asking huge favors was difficult. But, each and every person responded with, Yes I'll be there and I am so glad you asked. Anytime. Anyplace. It really means a lot.
Louise Hay's Breast Cancer Affirmation: I embrace and trust life knowing that I am safe and loved. I choose to love and be loved.
0 -
I'm loving hearing from all the veteran cold cappers!
0 -
I am starting my practice runs today!! I start chemo on Monday. Can't wait to see all of this in my rear view mirror. Thanks for all of the tips.
0 -
Atlbc,
In my experience, it all seemed so daunting initially but time flew by and before I knew it, I was finished with chemo and on the road to recovery. Wishing you an easy time of things with very little side effects and saving your hair.
Amy
0 -
Hi all~
Another cold capper from 2009 here...
This Cold Cap forum was such a silver lining for me when I was searching for any possible way to keep my hair during TCH. I am very thankful for the ladies at the beginning of the thread that helped pave the way for the rest of us.
I also attended a "Look good, feel good" session and since everyone was asking me about my hair I told them about the caps. Many of them were upset that they were not given the chance to make a decision about something like the PCC's. I have tried my best to spread the information as I feel it made all the difference in the world to me as I was going through chemo. We actually had a good discussion at the seminar about cold caps and the fact that the make-up the ladies were presenting all had chemicals in them. The ladies leading the class did not seem to mind the change in the conversation but I wonder if they will ever switch to natural make-up or hand out cold cap information at these sessions.
Stay strong all you ladies that are cold capping now...please know that I am in your corner.
The best thing for me was when I was having doubts and there was someone here to help me through it.
0 -
I am hoping to start a fund as well up here for women who can't afford the caps. Rapunzel project graciously donated the freezer, and thankfully my chemo clinic approved the acceptance of it. All this has delayed my chemo considerably. Kind of getting Concerned
0 -
do you think thinner hair may have a better chance cuz the cold has less hair to go thru?
0 -
Myrgolds, where is "up here"? Are you in Canada? I believe women with thicker hair are instructed to use the caps at a colder temperature than those with thinner hair. I haven't seen any pattern where those with thinner hair have better success. Thicker hair may be a benefit when using cold caps because it's easier to disguise any hair loss from shedding. I have pretty thick hair and you really can't tell by looking that I shed approximately 20% of my hair.
0 -
I want to use the cold cap. I have very thick hair and with all the restrictions as far as no heat on hair I
am definitely in trouble. I did a test today, followed instructions on how to wash hair, comb hair, use cold on blow dryer and when all was through my hair looked like crap!!!! It was frizzy and looked dry. I need help a sap because I really want to use the cold caps I don't want to loose my hair but I also want to look decent for work. There's got to be something I can do to control my hair. I am Hispanic so I have thick hair and if I don't roll and dry my hair it's frizzy!!!! Help please!!!
0 -
My hair is frizzy too and I air dried it a lot instead of using the hair dryer. I found the hair dryer on cool made it more frizzy than air drying it. I also wore it pulled back in a loose pony tail most of the time while going through chemo. I did use a little styling gel on it when air drying it but kept it away from my roots. Just remember - a bad hair day is better than a no hair day!!!
0 -
mdg
Thanks I will try that and see how it looks. I agree the blow dryer makes it to dry and frizzy. Will try using a gel too. Did you use the cold caps and were you pleased with it? Would love more information on how you did everything.
,
0 -
Greetings from North Carolina -
I am new member of this forum but have been pouring through pages and pages of topics and convos about Cold Caps for several days now. I was diagnosed day before Thanksgiving with triple negative, BRCA2+, Stage 1, tumor (1.2 cm) in right breast. Lumpectomy at Christmas, lymph nodes were clear of cancer though tumor was grade 3. Very thankful and grateful since I see so many women (and men) dealing with much worse.
Given my diagnosis/profile dr.s (more than one) have recommended chemo. I was not even going to consider it given all the side affects-more specifically, losing my hair. I teach at a local university and want to keep some privacy. But you all have given me much hope! So I am moving forward with the least amount of chemicals they recommended - 4 rounds of TC. Cold Caps ordered yesterday and still waiting to hear from a rep, most of my supplies ordered (and some already on hand), dry ice location identified and have talked with. Husband agreed to be my helper.
My dr. is on board with it (as is hospital staff) at a newly built hospital - he told me they are very interested in how it works and my success with it - they are considering it for other patients. No private room for chemo but like I said - everyone seems very willing to accommodate me. The hospital is a teaching hospital (part of a large university) which I find is much more open to working with patients - a small hospital more local to me was not!
I wanted to reach out to you all to thank you for sharing all your experiences (good and not so good). I start chemo next week - fingers crossed I am one of the lucky ones to keep at least 1/2 of my hair - I agree, a bad hair day is better than a no hair day! I am now just trying to figure out the timing and logistics of packing caps in dry ice and changing caps, etc. All of the info. out there posted online by cold cap users has been VERY HELPFUL.
Now I do have one question - we need to purchase a chest freezer - the freezer on our fridge is going to be too small to store CC between treatments. I have seen posts that say you can store your caps in zip lock bags in home freezer - others say you must store in plastic containers they come in white side up. Obviously we need to know how big a freezer to get. Any suggestions? It's just me and my husband - so we don't need anything huge. Was thinking of a small size chest from sears or target. Plan on picking it up this weekend - so any suggestions from you all would be super helper.
Thanks for reading this post. Thanks for giving me hope!
0 -
Art smart, PCC would like them stored in boxes when using dry ice to protect them but if you don't have room in your home freezer you can put them flat in ziplocks then transfer to boxes when packing them in coolers for chemo. They should fit like this in a standard freezer. You shouldn't have to buy a freezer unless you just want one anyway.
It's great that your doctor and hospital is so supportive. You could also suggest they accept a free medical grade freezer from the rupunzel project. Then you don't need to worry about storing them at home.
http://www.rapunzelproject.org/
Good luck!
0 -
Thank you marsha1970! That is uber helpful. I think we may go ahead with the small chest freezer anyways. Our freezer is pretty full at the moment. Nice to have the extra room.
I just forwarded that info. on the biofreezer to the Dr too! I hope my success (fingers crossed) will inspire other women to give this a try.
Still haven't heard from Penguin Cold Caps Rep. - trying to be patient. Do you know how long it takes? Should I try calling them myself?
Appreciate the good luck wishes too! I'll take all and any help I can get! Sending best wishes your way!
LM
0 -
Artsmart - call them. I always give people 24 hours but after that follow-up with a phone call. This is too important to have fall through the cracks. Good luck -
Amy
0 -
Thanks AmyQ!- Just heard from Carl from Penguin CC via email- apparently there was an issue with my Credit Card on my order. Glad to know I'm in the queue so to speak. I think we have it all sorted out now! Hopefully I won't have to call - And you are right about this being important. I don't have many chances to get this right!
Can I just say that you ladies all ROCK!
0 -
artsmart - I ended up buying a small chest deep freezer, and we are finding it is great to have the extra storage space...esp. since we belong to Costco now.
Welcome and thankyou!
0 -
artsmart~
I did TC x6 and just lost a bit of hair by my ears as we did not have the caps as tight right there...also let my hair air dry.
They were so worth it to me.
Sending you good thoughts...
0 -
artsmart-Look on my website for detailed dry ice and cooler instructions. It's under the Do It Yourself page.
http://penguincoldcap.wix.com/help
Don't assume the Penguin Co. are on top of things, there are a lot of customer service complaints. Be sure to get confirmation of the shipment along with a tracking number.
0 -
fighter - very happy with the caps. My story and photos is on my blog. Link is below. So happy I used cold caps.....looked completely normal to everyone else during/after chemo. I went back to teaching aerobics a few weeks after chemo and my class never knew I had cancer. I still had my long ponytail and everything.
0 -
Thanks to all for the advice and well wishes. I wanted to report that I have heard from my rep. We talked last night by phone and then have another call to arrange shipping this a.m. Was also in contact with the company via email throughout the day to ensure my order went through - I really have no complaints beyond being nervous for the obvious reasons. Makingway - thank you too for the link to the dry ice info (awesome) and advice on gathering info on the shipment! Will do! Easy to forget that kinda stuff with life roaring by. I'm also consuming all the info I can out there - very close friend advised me to consider ALL options during this time and not just do what I am told to do. That's how I found Penguin Cold Caps.
I truly treasure all the advice, info., shared experiences you have all provided on this forum.
0 -
Thanks to all for the advice and well wishes. I wanted to report that I have heard from my rep. We talked last night by phone and then have another call to arrange shipping this a.m. Was also in contact with the company via email throughout the day to ensure my order went through - I really have no complaints beyond being nervous for the obvious reasons. Makingway - thank you too for the link to the dry ice info (awesome) and advice on gathering info on the shipment! Will do! Easy to forget that kinda stuff with life roaring by. I'm also consuming all the info I can out there - very close friend advised me to consider ALL options during this time and not just do what I am told to do. That's how I found Penguin Cold Caps.
I truly treasure all the advice, info., shared experiences you have all provided on this forum.
0 -
I have refocused in the last several days on gettng my water in, something I was doing a terrible job at for quite a while now I admit. My hair seems to be bouncing back already. It doesn't feel and look as dry and lifeless and there seems to already be some decrease in breakage and shedding.Everyone here has said how important drinking water is and then I go and be all stubborn about it...
So for those newbies out there, from what I can tell, it really does seem to make a difference.
0 -
for those using latisse...one of the things you have to be very careful about is eye infections. Some people put the liquid in the cap and then dip a brush in. That can spread bacteria. On chemo your immune system is depleted and infections can become more serious. I used cold caps throughout AC/T. It was not as effective as it is for those going through CT but I still escaped with some hair. LAtisse is now available on line in generic form as Careprost without a prescription. I used prescription Latisse after and ended up with a serious eye infection. A total hysterectomy and arimidex have done a number on my eyelashes and eyebrows. Tempted to try latisse again but sort of afraid to risk infection again!
0 -
lbrewer - Perhaps you can consult with your oncologist. Wouldn't your vulnerability to infection have to do with your white blood cell count? My immune system is so weak right now I cannot even use our home well water. However, it's expected to improve in a few days...I hope.
0
