Cold Caps Users Past and Present, to Save Hair
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Barremom - my hospital supplies ice for icing hands. feet and mouth....ask them.
Feet -They put the ice in baggies and tie it around my feet with medical tape. You can do the same.
Mouth - they give me a cup of crushed ice
Hands - they give me a tray of ice. I bought those thin plastic dispicable gloves like food preparers use....so fingers dont prune.
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got it!
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Thanks Jennliza- Great tips! My liquid Silca just came- how much should I be taking for great results with CC. Bottle says 1 Tablespoon (420mg) pr day.
I am starting treatment 8/28- trying to get in best shape possible
Best to all:)
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barremom - which brand did you get? I could only find capsules in the higher amount. Geralyn said 250mg 3x a day.
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I asked my doctors about cold caps and they say they've had patients use them before, but that the patients barely had hair at the end of their treatments and were convinced it looked better than it did. They told me that in their opinion the little hair they kept did not seem worth the discomfort, but it made the patients very happy.
I guess that is all that matters.
I looked into it, but I think that if I believed my hair was not going to fall out and it did anyway, it would be more devastating than accepting that it would.
My chemo starts on Tuesday anyway.
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Hi LLizz- Interesting point of view...I guess i believe It's better to have tried and lost then not try at all. You may find it helpful to read through this thread as they're are a many, many ladies who have been super successful using cold caps.
Good luck with your chemo:)
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Hi Daniella- Was going to PM you today and see how you were doing! I ordered Silca on Amazon-
"Body Essential Silica Gel" citrus flavor - surprisingly doesn't taste bad. Thanks for the dosage info- will have to take another "shot"!
HOw did you make out finding dry ice? Did you get your start date yet?
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LLiz- I understand where you are coming from about not wanting to go in to this process thinking you won't lose your hair and then having to deal with losing it, but I just looked at your other posts and saw that you will be on TCHP (not sure if that is the right order) and the caps really will work with that regimen. They are an additional hassle on chemo day and another expense, but it was totally worth it for me. My hair doesn't look as good as it used to, but most people still have no idea I even had cancer, much less, went through chemo, so it has been nice to maintain that privacy. The first picture was right before I was diagnosed and I just took the second picture right now sitting at my desk. The caps work and I think they work better than your doctors told you. My MO didn't mind me using them, but she wasn't convinced that they would work. If you change your mind, you can have the caps overnighted to you.
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Thanks barremom! Meanwhile the stress of waiting is causing me to lose more hair than everyone who has already started chemo. I hope I have enough left to save. I literally feel it falling and landing on my arms, wherever. Then I think of how bad it's going to get. I need to get a grip already. Met with surgeon yesterday and she made grade 3 with a micrometastes in one internal mammary node was no big deal. I came home and melted down. I think waiting is worse. I'm not a patient person, obviously.
Daye- gorgeous!!! Inspiring to all of us!!
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daniella- Sounds like a really rough day yesterday...so sorry for that. The waiting is so hard isn't it? I feel like I have a mini meltdown everyday. Have faith, you are totally prepared for capping and your taking all those incredible vitamins which are preparing you for capping success.
Stay strong.
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LLizz, if you're interested in proving him wrong, we'll help you through it : )
Looking good Daye!
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Daye, you look great! Thanks for posting the pics, I know it's so encouraging to the new and prospective cappers.
Hugs, Daniela, it will get better once you have your plan in place and then get started...you are a woman on a mission, stronger than you know and you will rock the cold caps while you kick cancer to the curb. Gear up for the fight, we'll be here for you every step along the way!
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hi ladies....I was apart of this forum a little over a year ago. I had 6 cycles of taxotere and cytoxan from 11/12-3/13. I want you all to have faith in the process. Every chemo session I went through I swore that was the session I was going to lose all my hair. That day never came. I probably lost about 1/4-1/3 of my hair but you could never tell. No one believed I went through chemo. I promised myself I would come back to this forum to encourage others to have faith in the product. Its a tremendous amount of work (and pain), but its so worth it. I am over a year out of chemo and my hair is filling in wonderfully (and curly?! wth?!) and I color it on a regular basis (thank god). you too will get here
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ndmk- Thanks so much for the encouragement! It's nice to know all the effort is worth it. Continued health to you!!!
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thanks again to both datye and barre for encouragement.
I had tx 2 yesterday and found the capping quite hard going this time - they forgot my premeds, so had to start w no painkillers on board, and that first cap is really brutal. A good 5m of 'omg get it off I am going to die'. Settled down once the head numbed (and they ordered the meds!), but it does make a very long and uncomfortable day.
On the brighter side, I think the caps are working for me. It's hard to tell how next month will go (yest was infusion #2, I understand I have major shedding ahead), but right now I have lost very little hair above what I would expect. It looks a little raggedy given no styling products or heat (I have not been blesses with super straight hair like daye!), but is mostly intact.
Hoping I can stay strong as a I wait for this shed. How quickly did it come after tx 2? I didn't start losing body hair till 3 weeks or so after tx 1 (still not fully bald anywhere else either if not tmi - but thinner). Is this a 2 week watch and wait it or is there some cumulative effect?
Thanks for all your support cappers!!! I am at the halfway point!!
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Barremom- I have silica capsules not liquid. Each pill is 500mg....I take 1 in morn and 1 at night.
Ndmk and Daye - thank you for the continued encouragement!! I am 10 days past my 2nd treatment. I would say I lose between 50-80 hairs/day on non wash days. On my wash last day...it was bad. It was one week since my last was and my 1st wash after my 2nd chemo. I think I lost @250-300 hairs. I've been trying to keep the hair I'm losing in a bag. I started 2weeks ago this Mon...and here it is...I think I attached pic. It looks like a lot, but so far I know no one would think I lost hair. I have 4 more treatments...praying it holds up. So again thanks for stopping in and giving us going through this hope and encouragement!!!
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I must share. Yesterday was my first tx and the caps really refocused my nervousness. We should have practiced with the caps at home. My husband was trying to jam one on my head in our curtained-off corner yelling at me to <stop moving around!> while I'm yelling <it's not by choice!> Five minutes of struggling pass and then his knee is in my side, I am sitting on the bagels he brought, and he is basically choking me with the velcro strap. I am still laughing so hard I'm crying and then he's yelling <shut up! just shut up! I almost got this! This is how they did it in the video!> Thank God my phone beeps and my best friend is in the lobby. I catch my breath, take off my cap and look apologetically at my infusion neighbors while he goes to get her. Round two starts and my friend stops him after he's had me in a headlock for 1 minute or so. By now I am laughing so hard I am just trying not to pee myself. Luckily my friend took over and we got it on painlessly in under a minute. Well, with less pain if not painless. My cheeks hurt for the rest of the day from laughing.
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Does anyone know if there is a program that former cappers volunteer their time to help current cappers at the hospital with capping? I just found out my husband will be having knee surgery during my treatment (can you believe?) and I'm not sure he'll be able to "handle" capping for some of my infusions.
Thoughts?
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I feel your pain JennLiza - I'm on my tenth baggie that looks like yours (started heavy on day 23, now on day 32). I estimate I'm losing between 400-500 hairs a day. I had my third bi-weekly AC treatment on Wednesday, so one more to go before I start the weekly Taxol. I'm bald above one ear and half bald over the other, and my part has gotten quite wide towards the back and there's a bit of a bald spot at the end of it. Other than that I still have full coverage, and my son said you can't even tell how much hair I've lost (love him - I know he's being honest too because I didn't even ask for his opinion). My hair doesn't look bad if I wear it down, but it is so bothersome because so much is dripping out all the time that I have to put it in a claw clip or barrette, especially in public. I only wear it down at night at home and pick the hairs off constantly.
I purchased the Joan Rivers fill in powder from QVC to fill in with wide areas of my part and bald spot and it works quite well to camouflage the scalp.
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harrysmpm, your story had me laughing, too! The whole capping process is quite humorous as it is, and if you can laugh during chemo that's got to help, right?
I recall one story on this board where the wife dozed off and her husband went to get a sandwich and when he came back her head had dropped over and the cap was half off. He took a picture and propped her back up but never told her until after treatment because he was so afraid he had messed the whole thing up. I think we've all had some kind of misstep during capping but if you get it 'right' overall, you'll be fine. kp, hang in there, you have one of the harshest regimens and if you keep most hair during the A/C treatments, I think the next wave won't be as bad. I lost hair above my ears on both sides but it grew back very quickly once I was done. Glad the Joan Rivers powder worked for you - I bought some but never had to use it if anyone is interested. I think it's a light brown but may be called blonde...
barremom, there are some capping helpers in various parts of the country - Penquin may be able to direct you. Also, let us know where you are located and there may be someone here on the board that can assist or better direct you. I hired a woman to come for my first treatment and to train us, she was a great help in getting us started, she's in Minnesota, though so I had to fly her out, etc. I know there was one lady on this thread who capped herself through 16 treatments - so it can be done, but I couldn't imagine not having help.
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harrysmom, I had to laugh reading your description - I'm glad you could laugh about it too! Memo to other new cappers - practice at home!
Barremom, I think prior cappers would help out, but the problem would be finding them. Where are you located? Have others used cold caps at your facility? Do you have a friend or two who could fill in?
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Hi All- Thanks for the replies-Im New Jersey. Treatment at Morristown Hospital in Morristown.
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barremom - I'm being treated at MSK in Basking Ridge. I reached out to Rapunzel Project and they got me in tough with a group of women that are volunteers. They said they may be able to help me if I didn't have a helper. I'll email the woman that contacted me with your information. Pm me your email to give her- Janet Jones. I don't believe any of these volunteers are experienced but they are willing. Ms. jones said she got involved bc her father used the caps in England and she wanted to help here.
I asked geralyn for someone local to kind of show me the ropes, provide a tutorial. She responded to my email but never answered that question. If I find someone, I'll let you know but I'm in Monmouth County.
Btw, my husband called a guy he knows that deals with dry ice. When he called the guy said "I already know why you're calling. Your wife is doing that iced head thing". The lowest price we could get him to was $1.25 a lb (he usually charges $2lb.) So there are women here in NJ using them all over. I'm kind of annoyed at the price gauging between the ice and I've even read about paid helpers charging $400 a day!
If I was closer and didn't have this monster 14 month old to run after, I would be your helper. Warrior Women had treatment there - she may have more info.
Harrysmom - I can't! So funny! Glad you could find some humor in it all.
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DaniellaD- sorry for the late reply! I wore my hair down literally everyday and night. I never tied it back I was kind of afraid too. I slept with a satin pillowcase at night. And with shampooing I used Avalon organics and I would use two bowls one with clean water one with shampooed water and pat it in my scalp (never scrubbed) let me know if you have any other questions or pm for more details! Good luck!
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thank you so much Hope49 it sure does feel great to be finished! Never thought this day would come
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Thanks so much Daniella! What a sweetie to even consider offering---will certainly PM you with my email. I'm sorry the price of dry ice is so much--at least you got a discount and honestly when treatments are over and you still have your hair it will be SO worth the xtra cost!
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Thanks Dlove! I figure that. My problem is my little one who likes to grab my hair. Wow - you must sleep very peaceful. I toss and turn so much that I'm scared. I'm going to try it out tonight - start practicing. Did you take any supplements? Did you follow the pcc protocol for combing? It says to comb before you wash to get out dead loose hair, then after as well. Seems like a lot. Your hair looks beautiful. Thanks for the tips!
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I've been quiet on this forum since I started chemo in early April. I was on TCHP and used Elasto-Gel cold caps. Like others, here's some encouragement for others in the cold cap world. Honestly, I didn't baby my hair at all throughout the process...washed it a couple times a week, normal washing and conditioning, used Bumble and Bumble gentle shampoo, would blow dry my hair with every washing and used a flat iron right after. I changed out my caps on chemo days every 20 minutes and didn't skimp on the dry ice. And it all worked wonderfully! I've lost about 1/3 of my hair but for those who didn't know about my breast cancer, they were none the wiser! It was great to get up in the morning and not face a bald head and to feel a little more "normal". Totally worth it. Positive energy to all of you who are cold capping...hang in there!
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