Cold Caps Users Past and Present, to Save Hair
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Can't help with any of that as my center had freezers and caps on site. I wanted to let you know I started chemo 4 years ago the first week in March. Time goes by fast....I still can't believe it has been 4 years. you got this!!!:)0 -
mdg, you've been such a help and inspiration to me and others. Thanks for sticking around.
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Wow mdg - 4 years! Yay! I can't wait to be able to say that. Thanks for the advice on the air-dry hair. I picked up a couple thin headbands and am gonna try and incorporate them into my new frizzy/curly-hair look.
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Hi BB,
I used dry ice, and did get the ice the day before for a few of my treatments. We were able to buy it from a local Lucky Supermarket late in the evening. It sat overnight and then some, and kept the caps plenty cold. I had left over ice for several days. Shared it with local teachers for fun science play in class. Bought 80 pounds, usually.
I am 10 weeks PFC, hair is doing a normal shed, thrilled to have hair!
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I like to be a support because everyone here lifted me up when I went through it and it meant SO MUCH to me. These ladies were my lifeline! It feels good to pay it forward. I live in the present as much as I can and try not to think about BC all the time however this experience changes people inside...you girls know what I mean, but most that have not lived it don't know what that means. I can't tell you how much inspiration I get from all of the amazing girls here that I have messaged with, talked on the phone with and met in person from my blog and this chat board. The sisterhood is incredible and the strength, encouragement and outreach among this group is like nothing I ever experienced. I have gotten phone calls and messages from gals in certain cities and I say "oh, I know a girl there that used caps"....when I call that person, they are always SO WILLING to reach out to someone else that is local and offer support. Many of the gals have met up and have created friendships. Others have sent electric blankets, thermometers and coolers. I feel so good knowing that we can come together to support one another. I really get a lot from that. It makes me feel good - I guess that is the GOOD side to BC!I never meant to go really "public" with my blog but I wanted to give women hope. I wanted them to see the caps really DO work. Istruggled with finding the information I needed when I started this process to feel confident that this was the right thing for me to do. I hope that by sticking around and sharing my story it eases someone's mind in making this decision.
If anyone is ever interested in sharing anything on my blog about their story, especially with photos, let me know. It only helps other women see that the caps work and I was not just someone who was lucky. I can edit photos to block your face if you like. No pressure, but if anyone is interested, PM me. Love you girls!
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just to let you know how stuff is going "back there" the cold caps are working for me. 25 yrs ago when I did chemo the first time it was coming out in wads by now.
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Gorgeous hair, Suladog!
Jc254 - thank you so much for answering my questions. I'm also trying to read through this thread to get info and pointers but there are over 400 pages and I'm running out of time.
Mdg - that's fortunate that your center had the freezer. Not many places in Illinois are equipped for cold caps from what I saw. Unfortunately, mine does not have the freezer, so I'll have to deal with the coolers and dry ice.
JeniferE - thank you, I guess I should be OK if I pick up the ice the afternoon before the day of infusion. You were able to buy dry ice at a supermarket? That's quite convenient.
Thank you, Ladies. I'm hoping to be a success story like you are.
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BB,
Thanks! They have freezers at my center too but we have to lug my cold caps over in two big freezers on Wed to prep for my Friday morning chemo, then we have to bring them home with us when I'm done as they have limited storage space. It's a 50 mile round trip because I live up in wine country north of San Francisco, so it's a bit of a schle
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suladog, beautiful hair!
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BB I actually did chemo when we lived in Michigan. I was fortunate that at the cancer center I went to there were three separate oncology practices that all had freezers in the same building. They all had caps too because they had participated in some of the clinical trials for caps. I know I was really blessed to have it so easy! I don't know of any places near me in IL that have freezers offhand.
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Hi, Suladog :-)
So, glad to read the caps are working for you too.
What a beautiful head of hair you have!
I love the color too.
Hope you have a good day.
Lynda
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Yes, I experienced a similar pattern. I had shedding on Day 18 and 21 after my first treatment. My second treatment is tomorrow.
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Hello everyone, I have a few questions I'm hoping you will all chime in on. I had my first TC chemo January 28. My second was today. I started shedding on day 18. I did wash my hair and shed a lot on the back of the part, not quite the crown of my head. It thinned enough to be noticeable. You can see a balding scalp, but not completely bald, just scalp is visible. I decided since I had nobr noticeable thinning any where else to continue today. I placed a piece of gauze over the thinning area. I'm just a bit nervous that this means they are not working or I did something wrong. Here are my questions:
1. Did anyone else thin this much?
2. Does the shedding slow down or does it continue through out all of the treatments?
3. Did any of you ever use dry shampoo?
4. I am honestly afraid to wash my hair, because it was fine until I washed it. I washed it with sulfate free and paraben free shampoo. I also washed it in cold water. I used a very wide comb to brush it. That is when I saw the strands really coming out. I mean like I had enough for a cat! Anyone else experience this?
5. I asked my onco today about starting Rogain, while he wasn't opposed, he said once I start it I am dependant on it, or the hair folicle is. Just wondering if any of you tried using that? I would think it would promote new growth and the caps would help that remain.
6. Last question, a lot of my shedding is breakage. My hair is breaking off like crazy. Is this a normal thing? I had hair down mid back and it just starting to look blech! I made an appointment to get a wig just in case, but right now I was thinking about trying some hair fibers I read about. Any good recommendations? If I can hide the thinning I think it would be okay. I'm going to attach pictures to get your opinions. Sorry the images are so large, but at least you get to put a face with the name now! Is the thinning on 3 too excessive to think the caps are working?
Thank you!
Day 15 after first round of TC
Day 18 shedding has begun
Washed that evening here is a top view:
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Hi, U4iachic.
I am sorry, but I can not answer all your questiions because I was on different chemo meds.
I can answer a few, though.
I did *not* use dry shampoo or Rogain. I followed the instructions I received from Penquin Cold Caps to a T.
I am wondering if you had the caps pulled tight enough around your crown. Also, are you checking the temp. of the caps making sure they are cold enough?
I used a long velco strap over the crown area and I didn't shed.
My shedding came after chemo was finished :-(
Oh, and regarding the hair fibers. I know someone here used Toppik and was very happy with the results.
Lastly, Warrier_Woman posted pictures of her hair loss. I would suggest searching for those. There is probably an easy way to do this, but I am sorry, I do not know it :-(
Good luck :-)
Lynda
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U4, what kind of caps are you using? Assuming the caps were cold enough, it looks like the caps didn't have close enough contact with your scalp in the thinning area. That's what typically happens around the ears and the nape of the neck where it's hard to get a good tight fit. Try using a strap to pull the cap tighter to your head if you didn't use one the last time.
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Hi, U4iachic,
I found the post from Warrior_Woman I mentioned in my lost post:
https://community.breastcancer.org/forum/6/topic/7...
It looks like she also lost quite a bit of hair on day 18.
Now, 10 months later Warrior_Woman has beautiful long, healthy hair.
Here is a picture she posted:
https://community.breastcancer.org/forum/69/topic/819973?page=6#post_4288407
Hope this helps put your mind at ease.
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Hi, BB.
I had the same confusion you had/have with the UPS and FedEx Accounts.
I finally got Geralyn on the phone to help me with it.
Unfortunately, because of this I kept putting off ordering my caps.
When I did finally order them, it cost a few hundred dollars in shipping expenses to get the caps to my house in time.
Please do not make the same mistake I did. It can be costly!!
Good luck with them :-)
Lynda
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I am posting this disgusting bag of hair to relieve the anxieties of current cappers. This is just one day of hair loss after the 1st chemo. I never needed a wig.
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Warrior Woman, I had genetic testing in 2004 but my oncologist wants me to have it done again because they can test for more mutations now.
Angiel, I'm using those old fashioned foam rollers. My hair is pretty long so they give my hair some body and some curl
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Hi U4iachic,
We're on similar schedules as I had my second round of TC yesterday and noticed the most shedding then. Even see a small balding spot near my ear. Had a lot of shedding on day 18 and 21 too. I didn't save the hair. I immediately threw it away. I prefer not to have the reminders, although I'm well aware of the amount I lost. I chose not to wash my hair because I'm nervous that much more hair will come out. I normally shed a lot on regular washes before doing chemo, so can't imagine what it would look like now. Not sure how long I can hold off, but that's the plan for now. I am following the PCC caps' instructions as well. Using the black straps, but haven't found use for the headbands. Hang in there! Has anyone found the headbands useful?
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Hi U4 - I had the exact same problem as you. A few days after my second treatment (TC) I had a major shed - lots and lots of hair came out. I have the same thinning/bald spot in the same spot as you. I am able to do a comb over (that's what i call it ugh) to cover it. I have also bought Toppik and that has helped a lot. After about a week my shedding had stopped. I just had my 3rd treatment yesterday and it seems to be starting again but not nearly as bad, thank God. Keeping fingers crossed. Have never used dry shampoo or Rogaine. I'm just thankful i still have hair. No one would ever know I'm going thru chemo or that my hair has thinned. Hopefully it stays that way. WarriorWoman has been awesome. Def check out her posts. Everyone has been very helpful under these stressful conditions on this site. I wouldn't have been able to get through it without them. Best of luck.♡ Kim
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Hello Ladies,
I probably shouldn't be panicking just yet, but I am the anxious type and at this point even Xanax doesn't seem to be helping, other than making me sleepy.
I placed my order for the Penguin Cold Caps on Wednesday, my payment went through, all is good. But now, two days in a row I am being told by the rep (Geralyn) that they had a lot of orders, and the caps are on back-order, and that I cannot schedule the pick up yet, because she doesn't have any to be shipped yet. Yesterday she told me to call today, that hopefully she'd have them ready. Today it turns out she doesn't have any yet. She told me to call on Monday, she should be getting some cold caps back soon and she's pretty sure she'll have some to ship to me on Monday or Tuesday, that I'm next one on the list.
I would be a bundle of nerves if I had to wait till the day before my chemo to receive them. I need to have my helpers practice how to put them on my head. And I would prefer not to have to pay hundreds of dollars to have them overnighted since I ordered them early enough.
Did anybody have similar issues? Did all of you get your caps on time? Please, help me calm down.
JoeyJamesMom (Lynda) - how did it work out for you?
Thank you all!
BB
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I'll be sending mine back on March 5th! Can't wait to get them back to PCC. I've had mine since JULY
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BB...do you know anyone at your center who is cold capping? Maybe you can practice with one of theirs, and worst case scenario, maybe you could use their set if they are at the hospital for chemo? At my cenetr, we have about 15 cold cappers and they are not all used the same day. It's worth a shot or even a shout out on these boards to see if anyone nearby you may have some, even for practice.
I use the headbands religiously, we've found that they help flatten the edges of the cap close to my scalp and hairline. Nape of neck, around ears (I have thin moleskin in my ears for frostbite prevention)--moleskin on ears sorry-- and temples . The headbands give me a really tight fitting cap, we use the black Velcro strap on top of the head band to secure it, then the yellow Velcro around everything to make it super tight.
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Hi Gatomal,
No, I'm the only one at my center using them. I think I'll be somewhat of a curiosity over there.
I know a couple of local ladies who had used them in the past and they will be giving me some supplies to be used for this whole adventure, so I don't have to go and buy everything. But the caps themselves - nope, nobody that I know has them.
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that's great that you can source some supplies. Chances are if you can get them, you'll do very well on taxol. I'll repost a pic here of me and my husband cold capping. We did four rounds of AC and have now finished ten taxols. Two more to go. Did AC and 4taxols while preg with twins. Now I have six week olds at home too.
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That's cute.
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BB - you could try contacting my cold cap rep here in Minnesota. I thnk she always has some on hand, although if she has a lot of cappers right now there may not be any spares. Her name is Susan Mulligan, she's awesome, and her email is susan@coldcaptherapy.com. You can find her phone number on her website, coldcaptherapy.com. Good luck!
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Hi, BB :-)
Thankfully, Geralyn had the caps and I received them in time for my first chemo appointment.
When is your first treatment?
I wonder if there are any other Penquin Cold Caps Reps. that have some available.
If so, maybe, they could send them out to you.
I know it is SO much easier said then done, but try to relax.
Geralyn knows how important these caps are, so I am sure she will do her very best to get them to you in time.
I wish you luck.
Lynda
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Hi BB, do you have the supplies already needed for the caps? If not, make sure you have moleskin & panty liners (thin, basic ones with no wings) to protect your face at the hairline. Also, rubbing alcohol and cotton balls, so your cappers can clean the caps. Your handlers will also most likely need gloves if dealing with dry ice. The caps & straps have velcro, so knit gloves tend to snag. Better off with cotton gardening-type gloves. Also, be sure to have a couple of towels to wipe off the moisture from the caps once they are removed from the ice. And then of course, the Infrared gun - Craftsmen by Sears has a good one for around $90. If you don't have an electric throw, you may want one of those too as they make the cold more bearable. Below is picture of me from my first cold-cap day wearing the moleskin & cut panty-liners around my forehead before the cap went on, so you can see how to assemble those. We traced my hairline first & then transferred that pattern to the moleskin & then trimmed the panty-liners accordingly. The result looked like a funny crown before the cap went on.
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