Cold Caps Users Past and Present, to Save Hair
Comments
-
Wildflower, you look great. And that first trim feels awesome. I took 1.5 inches off to no ill effect about two months PFC, and then another 2 a month later.
0 -
Thank you! I was initially very skeptical about the capping working for me, and didn't really relax until right before the 3rd TC.
I think getting rid of the dead ends will make it look a lot healthier. I can't see where dusting the ends with a very light trim would be an issue. The Penguin aftercare instructions said light trimming is fine, just nothing drastic.
0 -
Goldenpaws, so glad to hear this worked for you. I am starting TC at UPENN as well & will be using PCC. Geri was great in helping me with my questions and ordering. I'm nervous & a tad overwhelmed but reading all these stories of happy users is inspiring! Thank you!
0 -
Ajuul, I was also treated at Penn and used cold caps at the Valley Forge location. Feel free to PM me with questions.
You might not know that Geralyn from PCC was a cold cap user and one of the first posters on this thread when it started back in 2009.
0 -
MadisonMom I'm looking for something to measure my head. CCC have some streatch to them. I chose them over PCC because they seemed easier to wear and I spoke to another woman who had success with them. I'm doing ACT and that has a 50/50 success with cold caps. I've thinned a lot but no bald spots. You will need a helper to put them on regardless of which you pick. It's not easy with the IV. They need to be put on 50 min prior and changed every 25 min and worn for 4 hours after. I have a helper from CCC during my treatments, but can do them myself after. I rent straight from CCC so I'm supplied with all supplies needed and someone comes to your first session to show you how to use them. Where do you live
0 -
MadisonMom-You'd be better off donating the caps to someone that you know for sure will use them. Is there a support group at your hospital where you can ask? I say this because things tend to dissapear-even donated freezers!
I do know this: caps should be on dry ice for 3 hours prior to infusion, be at -20' C, be changed every 25 minutes, be worn for 50 minutes prior, all during, and 3 hours post infusion, that I need 45 pounds of dry ice for 6 caps (should I buy 8?).
Caps should be on ice a minimum of 4 1/2 hrs to ensure they are all at the right temperature. Some can only take 4 hours-it's hit or miss. You can freeze them overnight, which Penguin Co. tells you not to do. Let them sit outside the cooler to thaw for 1/2 hour or more before trying to unfold and manipulate them. The Penguin Co. tells people not to freeze them because people might unfold and manipulate the caps when frozen and brittle, causing them to break at the seams.
If using dry ice you need 8 caps regardless of brand.
Temperature range should be -32° to -28° Celsius. Different cap areas will have varying degrees. If using the Penguin caps the center has the most gel. Use that area for the best gauge in temperature. If using Elastogel caps, once they are no longer stiff they are at a good temperature.
First two caps to be worn for 20 minutes. All caps thereafter should be changed every 30 minutes-Elastogel's a bit sooner. Post chemo caps should be worn for 4 hours. When I started helping change caps in 2009 the recommendation was for 3 hours post chemo, not sure why it was changed to 4. The women that only wore the caps for 3 hours still kept their hair.
You should have 100 pounds of dry ice. Better to have too much than not enough! Divide the ice between two coolers. 4 caps for each cooler.
I'm unsure about wetting the hair and also if there is a thin shower cap-like liner to wear over wet hair. Any instructions would be greatly appreciated.
It is not necessary to wet hair or wear a cap liner. It is not necessary to change the part in hair for every cap change. The part in hair can be readjusted for each chemo treatment.
0 -
MadisonMom my head is about 22in I'm not sure if there is room once the cap is on since I also have bands on for a snug fit. Makingway's advice is correct. I do use a shower cap under the cap tho. CCC supplies everything for me it's part of the rental fee & picks up the cooler the next day.
0 -
Angiel I can't get over how good your hair looks. You can't even see any thinning areas and it looks so full. You look just beautiful as do all the other women posting pic.
0 -
T shire - my MO's nurses warned me caps would not work....they even had caps and a freezer in their office! My MO said a "50% chance of them working" too. I was so pissed....after chemo 3 I went in to that horrible nurse and said "hey Tammy - check out my hair!".....I could not help myself! I am sure by now you have seen my blog with photos throughout all of chemo....The caps work for so many people...the trick is it depends on which chemo you are getting and also following the protocol. If you have AC, that chemo is much harsher....some girls have had success with AC though. If you have TC or TCH there seems to be more success. You can do this! You will have hair for your wedding! If you have questions feel free to PM me. I am also happy to talk on the phone with you...I have talked to lots of gals from these boards over the past few years. Best of luck! Stay positive!
0 -
Hi Ladies,
I think it's time for me to finally check in with some photos. This Tuesday I will be 16 weeks PFC. I had 12 rounds of Taxol and now I'm still getting Herceptin. I've always had rather thin hair and I was worried about my results after cold capping. I did not shed much throughout the infusions. Most of my thinning started PFC. I'm still shedding and at this point I wonder if it is still the result of chemo, or maybe Tamoxifen? Anyway, I am very, very happy that I did the cold caps (for me it was Penguin), my hair may be thinner and my part is wider but I still have enough hair that people would not suspect I had chemo.
I apologize if it's way too many photos. It looks a little narcissistic, doesn't it?
I just know that it helped me a lot when I saw photos posted by previous cold-cappers and I thought that seeing my results developing over time might help others.This is about 10 days before first chemo, after wash and not styled. Sorry for the gloomy face, I was not in a great mood thinking of chemo:
This is the same day, still not styled, back of my head:
This is one week PFC, the day of wash. I do not see much difference from before chemo, even though I admit - I was collecting the hair that has fallen in a zip-lock baggie and it looked like I lost 5-10% of my hair by that time:
And the top of my head, one week PFC:
And the back, one week PFC:
And this is today, the wash day, almost 16 weeks PFC:
This is the top:
This is the back:
I did notice some funny looking and grey hair growing on the sides and above my ears. I didn't realize I lost so much there:
This is how much I lost today, after the wash. On non-wash days it's about half of this:
And for final showing, this is my hair today after some curling iron on the ends, with a smile!
(Pardon the mess behind me).
Now I will probably be banned from these boards!
0 -
mdg … "Hey Tammy - check out my hair!" Hha. Love.
BB, you look fantastic. I'm still shedding a little too, but seemingly we actually DO have 100,000 hairs on our heads. I love all the pics.
And I love seeing everyone get through this. Sometimes we need to be sneaky smart about it with our Toppik and creative parting and not so much with the hair behind the ears, but you can pull it off if you stick it out.
Looking forward to your wedding pics, tshire!
Love you all! Happy Labor Day weekend!
0 -
SoCal, I lost a lot of hair at my crown during cold capping, too. It's definitely discouraging. BUT, the Toppik works really well at hiding and filling in any bald spots. My hair continued to grow in length during chemo, about 3 inches, and new hair in the bald spots was even sprouting before finishing chemo. It's filling in really fast. Tomorrow, I'll be 12 weeks PFC. Below is a picture from when I first started losing hair, to my hair filling in now. It's still thin, but my hair was thin in the first place. But I do have crazy sprouts of hair ALL over. My eyebrows and lashes are still way behind on filling in.
0 -
Whitney, your hair grew back and filled in very nicely. Your lashes are so long!
0 -
Thank you! My lashes have always been long. But, they're still falling out, which is discouraging. I feel like there's only about 7 lashes on my left eye. Eyebrows are only maybe 70% back to normal. Hoping that they continue to fill in.
0 -
I lost all my lashes and almost all of my eyebrows. My eyelashes came back nicely, but I was using Latisse for a couple of months after they fell out. Eyebrows are at about 90% and I don't think they'll get any thicker.
0 -
Wpmoon your hair is filling in so well. Can't wait to get to the point where my hair starts growing back. You look amazing. Hopefully on taxol my hair will grow. Have my last AC on Tuesday then 4 rounds of taxol.
0 -
I have the Latisse, just haven't been using it regularly. Need to get back on that!
0 -
Whitney and BBwithBC 45,
Awesome pictures of you both! Hoping others will post pictures as well. I agree, it did encourage me enormously when others posted pics of their progress during and after cold capping. So glad I found this board :-)
0 -
mdg,
Your pictures were my guide for capping..right down to the panty liners!!! It's crazy equipment but boy do they work. I was turned on to the caps by my docs at UCSF, there was one oncology nurse who was very skeptical, but she told me that after seeing my hair..she was now recommending the caps to patients. So glad I did this!
0 -
I didn't mind donning the funny cold cap helmet, my Hello Kitty neck pillow, and the moleskin sideburns, but I drew the line at sticking pantyliners on my head, lol! Instead, I took one of those fluffy microfiber cozy socks, cut the toe out, and just slipped it over the strap that went under my chin for nice soft padding (you can buy them cheap at the dollar stores or Walmart). I also used Earpops on my ears since I didn't want to keep getting stray hairs stuck in the tape used to hold them on.
0 -
I had panty liners stuck to my ears - quite a fashion statement. :P
0 -
My sister, who helped with the capping, took a most unflattering picture of me after we got home and were in the midst of the 4 hour post-chemo capping. Thanks to the Ativan and just general exhaustion, I had fallen asleep with my head rolled to one side, still wearing the cold cap. I was probably drooling a little, too. Future blackmail fodder. Thanks a lot, sis!
0 -
Wildflower2, BBwithBC45, Suladog and wpmoon, thank you so much for your beautiful photos! It gives me hope that I, too, can get through this with most of my hair intact.
Makingway, thank you so much for the info you posted. I'm going to buy 8 ElastoGel caps and do it myself, with a "pit crew" of friends to change caps. A few more questions: Do the caps themselves have to be -32 to -28' C or is that the inside temp of the cooler? And after 1/2 hour out of the cooler ElasoGelcaps will be pliable and ready to use? I assume I put the caps in plastic bags in the cooler and place them between the blocks of dry ice? And I only need to use moleskin to protect my forehead from frostbite, with some type of fabric on my ears? It seems like you'd have to try to get your ears as flat to your head as possible so that the cap makes good contact around them. Can I just put moleskin on my ears? Is there any problem with frostbite just below the hairline on your neck?
Jbandkb1, thank you for measuring your head. Mine is only 1/4" larger so if ChemoColdCap ElastoGel caps worked for you they should work for me.
0 -
Whitney, you are lookng great! Your hair has filled in so well & look at those lashes!! I can't believe that is without the Latisse! You are just so cute!
BB, I know you say you are shedding a lot but seriously, I think your hair looks great - full, shiny & healthy. The amount you are losing is a fraction of the amount I was losing on a daily basis a while back. After I finished my taxol portion of chemo, I shed a lot for about 6 weeks and then it started to slow. I'm now at 10 weeks, and today after my shampoo, I only lost 5 hairs. That has been my daily norm for the last 2 weeks or so. I'm sure you are almost there & your shedding will slow. I started tamoxifen about 8 weeks ago and didn't notice an increase in shedding but that's not to say it couldn't be the cause either. Are you taking hair supplements? I am still taking all of the ones I took during chemo.
Good luck Jbandkb with your last AC. That last one can be a doozie. Please pm anytime if I can be of help.
0 -
SoCalGrl, did you try the Toppik powder? That's what I used to cover my thinning spots. It works great!
0 -
Thank you so much for your advice ladies!
Unfortunately my shedding has been severe and has not stopped. Everyday I lose handfuls. I probably have 1/8 of my hair left.
I'm at a crossroads whether or not to continue and I'm leaning towards stopping. I've only had 1 treatment and I can't imagine lasting 3 more. The Toppik covers excellent, but the top of my hair is so thin at this point I'm so self conscious. To continue it's going to cost nearly $600 and it seems like an expensive gamble. What do you think? Please be honest, is it worth it to continue or should I invest in a nice wig instead?
To give you an idea, this is right before I started:
From the back now:
After a wash. This one looks horrible.
0 -
SoCal, here's a telling photo of my hair 5 months PFC. That couple of inches next to my crown is obviously regrowth. It wasn't as heavily dispersed as yours, but with the Toppik in various spots that were nearly that thin, I was able to get through. There's no way of knowing if your shedding will slow down. Some women with very heavy shedding at the crown have used toppers, sort of mini wigs to get them through regrowth when they feel the rest of their hair is thick enough to stick it out. Whatever you do, it should be to give yourself peace of mind. We are not a capping group. We're just a group of women trying to get through this with some sense of calm. Capping is stressful under the best circumstances. I hope some women with heavier shedding will chime in. Whatever you choose, you'll get support here. If you feel you've really reached a tipping point, then do what's best for you. There is hair to work with for sure if you feel you can gut it out. We're with you either way.
pch0 -
HELP!!! i used PCC, but my father in law is starting a business to help women NOT lose their hair. He could not believe what it did for me and thinks it is the way of the future. They decided to use elasto gels. I just wanted to get ay feedback? How long you left them on and off?? ANy feedback would be awesome! XO
0 -
Just curious. Did anyone else start to experience hair regrowth while in the last cycle, or fresh out of chemo on the taxotere/cytoxan regimen? My hair thinned overall during treatment, and while there weren't any truly bald spots, there was noticeable thinning in some places on the crown where the caps must not have been in good enough contact. I seemed to shed the majority of hair somewhere between the first and second rounds of TC. I am now only 3 weeks PFC, and for the last week I've noticed the thinner spots are now covered with hundreds of tiny black specks which I assume are hair follicles. They get more obvious and seem to be spreading more every day. I can also feel tiny little stubble all over my head, mixed in with the longer hair. So it had to have started while I was still actively doing chemo. I thought that some ladies had regrowth on Taxol, but TC was too harsh. Not sure if I should post here, or on the life after cold caps thread, so I'll do both :-/
0 -
SoCalGrl-You still have a good amount of hair. The hair that has been lost will fill in fairly quickly, usually within 2-3 months. It is a difficult decision choosing whether to continue using the caps or throw in the towel. But, it is a personal one. If you do choose to continue using the caps you should place a couple of layers of gauze over the exposed area to protect the scalp.
I see that the Penguin cold cap co. had referred you to a helper to provide you with hands-on instruction and to change your caps. One would assume that the company would only provide referral to those which have a good deal of experience and skill. Unfortunately, this is not the case. Their training consists of watching a 10 minute video with outdated information. Much of it no longer recommended. That being said, there are helpers out there which are skilled and have great experience, they're just few and far between.
For All Cap Users considering hiring helper's:
- Length of service
- Number of those helped hands-on
- Recommendations from past user's including contact info.
- Before and After Photo's
0
