Cold Caps Users Past and Present, to Save Hair
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Is anyone wearing a bandana or scarf and if so what material works best.
Thank you!
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Hi Everybody! Just wanted to report that I FINALLY highlighted my hair yesterday (last chemo 7/3...about 12 weeks ago) and got another cut and I FEEL FABULOUS! Laughing that it took some hair dye to feel like myself again!! I am feeling so thankful for the cold caps and this board. Less than a month ago my hairdresser said my hair was so fragile and now she sees a big difference! Thank you for listening and to all of you still going thru this....there is light at the end of the tunnel and you WILL get there!!0
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ccb2 - so you highlighted at just 4 months PFC? I was worried about doing it at 6 months, since blond highlights are so tough on hair...your post gives me confidence that my hair will handle it - thanks so much and congrats!!! I'm so used to being a blonde, tough going brunette when you've been a highlighted blonde all of your life!
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Thanks Dancetrancer! I should've added that Ive stopped shedding recently (it did stop all of a sudden!) and I was feeling pretty brave! I agree with you about highlights.....my roots were terrible! Ive been washing about every other day and blow drying on warm too. Im trying to embrace my new, much thinner hair. A bob cut to the chin also helps with my renewed gratitude for keeping my hair!
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ccb2, I too have switched to washing every other day and blow drying on the lowest warm setting. It appears my shedding has slowed considerably. I had my hair cut once two weeks ago, but only a tiny amount b/c the email from Geralyn said only to cut in small amounts. I want to get more taken off b/c the ends are pretty dry and ragged (plus, the weight of my hair is making my thin hair appear even flatter).
How long did you all wait to cut say an inch or two off of your hair PFC? I am now just over 4 months PFC.
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reneerodin - I tried on several type scarves then opted for a very light cotton, kerchief type, about the size of a bandana, which I wore when my hair was grossly oily and I was not supposed to wash it often. My silk scarves seemed too big and too heavy for summer and slipped down, but the cotton one stayed in place and didn't weigh much. It used to be my daughter's when she was little and I found it in a drawer when I went rumaging for scarf possibilities.
Try whatever you have to see what works and what looks best on you. Now that it's fall, a bigger scarf might work nicely, but mine looked silly on me in June and July.
Dancetrancer - I have trimmed my hair myself three times so far since ending chemo on July 10th, taking about half an inch off the bottom each time. I didn't want to risk a hairdresser combing or pulling on it, so just snipped the ends myself. It made it look a lot better each time I did it. I just looked at how much my hair has been growing and figured taking such a small amount would not hurt anything - the new growth is at least three inches long now judging by the roots.
I am still having a lot of breakage at the point between my colored hair and my new growth due to my stupidly lightening my hair just before chemo, but still have full coverage even if the ends have gotten thinner. I am also still shedding 12 weeks PFC. My husband thinks it's letting up, I don't, unfortunately. I would like to color my hair, but I learned my lesson the hard way so I am waiting the full six months.
My new hair growth is the wierdest mixture of colors - blonde, grey and very dark. I have never had dark hair before. It's all straight, not a chemo curl in sight, thankfully, as I have always had naturally straight hair and didn't want a mixture of textures.
Watching what happens hair-wise post chemo and cold caps is interesting.
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Thanks Hortense! I think I'll get it cut again in 2 weeks. I'd try cutting my own but don't trust myself to get it straight, and the last time I had DH do it years ago, well...that didn't work so good, LOL.
I too plan on waiting the full 6 months before highlighting, if I do. I get some people telling me they like my hair darker. I'm still not sure about it.
Bummer you are still shedding. I think I am some, too, but it is hard to tell since I wash every other day now - that may be making me think I am shedding less.
I lost some hair in the classic spots behind the ears and what is growing in is wavy, but not so much that it messes with the rest of my very straight hair.
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does anyone know of a center in md/del /dc that uses the cold caps. I really would like to look into them.
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My wife had TC x 4 this year and was dreading losing her hair, it is fine and not thick to start with. She gave me the information on Penguin Cold Caps, and I researched these and others, including Southwest Elastogel. We ultimately went with purchasing Southwest Elastogel caps, primarily due to the elaborate and unusual procedures for renting the Penguin caps. I administered the caps at each session, using a digital point and shoot thermometer to determine when to swap out caps. I settled on about 7 lbs of dry ice for each session as the correct amount for 5 caps giving me adequate margin. I switched the caps pretty frequently (as short as 15 minutes), as I did NOT want this process to fail, or yield questionable results.
She were the only patient that the UNC Chapel Hill staff had know of to use cold caps in recent history. On the first session, the chemo nurse tried to set our expectations low, she said someone had tried this about 10 years ago there, with bad results. On the second session, 3 weeks later, the same chemo nurse seemed surprised that Karen still had so much hair.
In the end, my wife experienced some thinning of hair, and she said when she washed her hair, she felt like a lot of it was coming out, especially after the 3rd chemo session. I know that she coud detect some thinning, but it was not apparent to me or anyoine else that she had any significant reduction in hair. I rate our experience a solid success.Lightly used (4 times) Southwest Technologies elasto-gel caps can be found on eBay. I would be happy to discuss in detail my method for administering these (adapted from Penguin, Southwest Tech and other users). I tend to over research things that are important, and possibly over engineer the solution. You only get one chance, so better to be slightly overboard.
Good luck to all,
amayers
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Hi Amayers: I used the SW EGs and glad someone else is presenting positive results. I probably wasn't as thorough as you because I lost a lot of hair but NEVER went bald, never needed a wig or a scarf. I'm sending mine to a friend to use and hope she has great success. I'll probably send her husband your way if that is ok. My friend is in VA.
I'll pm you!
I too purchased 5 which was plenty since the dry ice cools them back down so quickly!
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beachmd~
My oncologist let me use them but they did not keep them at the center.
I had to drag them back and forth in a cooler.
She is in Virginia.
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beachmd - I do not believe any center has them for patients to use, much as I wish that was the case. Patients who use cold caps either rent them from Penguin as I did (Penguin does not sell their caps), rents another brand from someone else, or buys another brand such as Elastogels. In each case they have top be gotten to the center by the patient.
Some centers have freezers donated by the Rapunzel Project to store them for the duration of the chemotherapy. My center had one. It could be that you can have Rapunzel donate one to your center, if your center agrees, for you and future cold caps users to use. Go to: www.rapunzelproject.org
amayers, above posted about successfully using Southwest Elastogels. You might contact him.
Whatever brand you end up using, follow the cap's protocol exactly or you will not get the result you hope for. I colored my hair six days before chemo which was totally against protocol and which weakened it at the hairline so that I have has a lot of breakage between my colored hair and the new growth and lots of shedding, all of which was entirely my fault. My helper and I also put the caps on 6º too cold the first time thinking it would be extra protection for my hair - bad idea. I ended up with two frost bite spots which went entirely bald. I do have full coverage, but my hair looks thin in volume, especially at the longer ends, and is damaged. It's growing, but it could have looked so much better had I followed the protocol directions closely.
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My onc's office had them there to use and had a freezer but I still had to pay to use them. I think they only have them because they participated in some of the clinical trials on PCC's. There are two other onc offices in the same building that also had them and had freezers. I was SO lucky!
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You sure were mdg!
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Anyone new to using Cold Caps/early in their treatment? I notice from reading this thread from the start that there was a great community of folks supporting each other through their treatment. Would love to find others in the same situation as I.
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I have an appt. on 10/25 with the onc to get my oncotype dx results. I am pretty sure chemo is in the picture for me though. Thanks so much for the info on the cold caps. It's alot of money if there is no guarantee of success. Does it depend on the drug choice as to the success ???
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Thanks for the welcomes, CousinItt, ckk and Laura 5! I appreciate the encouragement.
301724, I'm early in my treatment, having started on 9/20. See my first post on 10/7/12. I'm getting weekly Taxol, though, and I see you are getting Cytoxan and Taxotere. Still no shedding for me, after 25 days.
I have read that some people on weekly Taxol don't end up losing all of their hair (I'm not willing to take that chance!) so maybe that has something to do with the lack of shedding so far. With 12 weekly treatments I have more opportunities for something to go wrong. And I did color my hair only 5 days before my first treatment. I know I should not have done that, but I generally color my hair every 4 weeks (my natural dark brown, but at age 60 I have roots that are completely gray). My colorist bought what she described as a "mild organic" color for me, and I hope I don't live to regret it! schoolmom, yes, I think drug choice does have a lot to do with cold cap success or not. From what I've read, Adriamycin is tougher than some other drugs/drug combinations but there have been women on this board who have successfully kept most of their hair even using Adriamycin.
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Welcome to all the new cold cap users! We are here for you....ask any questions you like or vent. We have all been there. Hugs and good luck!!!
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Yes welcome to all. I finished treatment on may 17th. Had shedding that just recently slowed down, but I still have hair. It is thin but getting better. Ask away I did and was always grateful for all the responses.
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Thank you! Us newbies are likely to have lots of questions!
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Hi Ladies! I just wanted to share some hair pics with you. These are taken 11 weeks after my last chemo. TC x 4 The last treatment was 7/27/12.Shedding finally slowed down about 2 weeks ago. I used a temporary rinse 2 days ago. (Clairol Beautiful Collection-Advanced Gray Solutions) It is not vegan or organic, but it contains no peroxide ammonia or parabens. It covered nicely but I'm not sure how long it will last...supposedly 7-14 shampoos. I would love to help spread the word about Penguin Cold Caps. For me (and my family too I think!) ,saving my hair changed the whole chemo experience from traumatic to inconvenient. I really believe that I experienced milder side effects because I saw myself in the mirror every morning instead of a sick person. If I can be of help to the new girls, please let me know.
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The Penguin Cold Cap website has a list of chemo regimens that the caps are effective for. They work better for some regimens than others. Good luck 10/25. Let me know if I can help.
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Wonderful Laz - so happy for you - your hair looks great! Lots of volume!
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LAZ you look great! If you would be interested in sharing your photos on my blog PM me. I have so many people read my blog looking for information on cold caps. If anyone else would be willing to share their photos/story on my blog, let me know. I know it does help spread the word. I can even black out/cover your face if you do not want face shots on there. Every little bit we do helps spread the word.
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schoolmom, TC is easier on the hair than AC, but several women here have had good luck with AC. True, there is no guarantee, but if you follow the protocol, you should do fine. I would say the average loss (from posts on this site) would be about 20-30%, which may sound like a lot, but most said no one could tell that their hair was thinner except them. Some, like myself, barely lost any hair at all. What keeping your hair does for your psych is immeasurable.
301724, Not sure how many new ones are on here, but those of us who have been through it are happy to answer any questions that come up and help you in any way we can
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Laz, You look great!0
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Laz, you have an incredible head of hair! I kept looking for the "after" pictures! Congratulations.
To the newbies, welcome: you have found an amazing community here and we will help you through. I'm happy to send my writeup of my experience to anybody who sends/PMs me their email (it's too long to fit in a private message on this site).
Best
Susan
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I am new to all the acronyms....what is TC and AC?
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Welcome schoolmom!
They stand for different chemotherapies.
TC is taxotere (chemical name: docetaxel), carboplatin (brand name: Paraplatin),
Edit: Dancetrancer is correct in the following post, TC is also Taxotere/cytoxan It is what I was given.
AC - doxorubicin (brand name: Adriamycin) and cyclophosphamide (brand name: Cytoxan), a common chemotherapy combination. There are more common chemotherapy combinations listed on the main Breastcancer.org site.
I suggest that you go to the "All Topics" tab on the upper left of this page, click on it, then click on the top thread "New to Breast Cancer", then after the new page comes up drop down to "Discussion Board Abbreviation Key". It will help you with most of your questions.
I wish I had found it right away.
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TC is also often taxotere/cytoxan.
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