Cold Caps Users Past and Present, to Save Hair
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My profile picture was taken the weekend before I started chemo last May. The family picture was taken at Thanksgiving 3 months after my final chemo. I lost a lot of hair, but still have plenty to work with. You can't even tell I went through 6 rounds of TCHP.
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Hi Lucille- Sorry you find yourself here-but glad you found the cold capping forum. This is a wonderfully supportive group of ladies who can help you through every step cold capping if you choose to pursue. Your bio does not state what chemo regime you'll be taking , most cold cappers are very successful, but the gals having Adriamycin have a tougher time. Most cappers here use Penguin Cold Caps (that are rented) and follow Penguins hair care protocol (cutting, coloring, washing etc) throughout. Lots of information can be found at www. Penguincoldcaps.com. If finances are an issue they do offer an assistance program if you qualify.
The Chemocold cap company that GinGin is referring to above is a service that can provide caps (not sure what brand) lessons, coolers, arrange for dry ice delivery etc. As with any white glove service you pay extra for that. Most cold cappers are able to handle and coordinate all the moving parts successfully on their own.
Another capping company is ElastoGel, caps that you purchase (example: Amazon) and own at the end. This is less expensive then Penguin. I'm not sure of the success rate.
Also, check out The Rapunzel Project.org. great information as well as a list of hospitals that offer freezers (instead of dragging coolers of ice) to cappers.
Lastly, There are clinical trials underway for DigniCap and Paxman Cold caps. A self contained unit that has freezing water circulating through a cap. I used Paxman and would not reccomend.
Hope this info gives you a good starting point.
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Random question for anyone experiencing more hair loss AFTER chemo is done. Are you taking Tamoxifen? I just realized hair thinning is a side effect and I wonder if that is what is happening to me. That and it's turned me into a rage monster:-)
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hi Harrysmom - I am taking tamoxifen, yes. So again no idea what is 'normal' (on so. many. fronts....)
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Hi RainDew.
I've been glued to the internet today searching and I just emailed my onco on going on Aromasin vs. Tamoxifen. I know there are tradeoffs, but I am starting to think my hair loss is Tamoxifen-based even though it's not a common side effect. I'm going nuts thinking of all the cold-capping work being undone.
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I took tamoxifen for five years for my first bout of breast cancer, but I didn't have any hair loss.
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no u look great.... I'm getting my 2nd chemo treatment this week tch after that I have 4 to go I cant wait til it's over but you look grea
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My hair after two rounds of taxotere/cytoxan. Round 3 tomorrow0 -
Hi all! Any suggestions to help with dry scalp/flaking while using PCC?? I have a slight case of dandruff. Someone suggested tea tree oil but since I'm not washing my hair that often I'm afraid it will be greasy looking.
Thanks for any info....
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I am currently on IV Gemzar which causes little to no hair loss. My markers have gone up and if after this next round they don't go down my onc wants me to do Taxol or Abraxane. I had ACT in 2009 and suffered severe side effects along with the hair loss. I don't want to go through that again so I at least would like to try to keep my hair. My oncologist isn't for cold caps at all. I live in Delaware and I can't find a center anywhere that uses them. I know I sound vain or whatever to someone that's never gone through this before but I'm not losing all my hair again. I mean what if the Taxol doesn't work either. I'm stage 4 and I really don't want to go out like that. I make a side living as a DJ and singer and I would basically be cutting my whole life off if I lost my hair bc I wouldn't be performing bald. Thanks for any advice.
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DEBeachgirl, I hope you don't need to switch from Gemzar, but if you do start taxol or abraxane, I can tell you that the cold caps work very well with that Chemo. I assume you would be doing weekly taxol, right? Most of us used Penguin cold caps, and some used Elastogels caps. If you look back within the last couple pages of this thread there is good information. Penguin cap rental is expensive, especially if you have to buy dry ice each week. I was lucky to have a medical freezer at my facility so didn't have to buy dry ice. With Elastogels you purchase the caps, and the cost is less than Penguin. Have you looked at the Rapunzel Project website? Good information there, and they're the organization that donates the medical freezers to facilities willing to take them. Good luck and let us know what happens.
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DEBeachgirl, you're going to have to find an oncologist who will let you do cold caps if you can't convince your current onc to let you use them. I'd call every private oncologist's office in your area until you do! They're definitely worth it!
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DEBeachgirl, yep, you are going to have to advocate for yourself and switch oncologists if you have to. Just calling around to find out if a facility does cold caps may not work, as you may be the first one in your area to try them. You will have to find an oncologist who is open-minded about this and willing to let you try them. They are out there! I would make appointments for second opinions with whomever you research and find to be good oncologists in your region. Good luck! You have a right to choose to try to save your hair!
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leslienva - your hair looks great!!!
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Agreed! Leslienva your hair does look great!
DEbeachgirl - so sorry you have to go through all this again. Definitely try cold caps. They are not easy as they are COLD, but they do work. Barremom64 has an excellent informational post half way up this page, if you haven't yet read it.
Hair is important to us, you are not being silly to want to keep yours. You may be a Stage IV patient, but you are also a consumer with the power of insurance (I hope) and taking your insurance elsewhere is quite an impetus for a reluctant place to change its policy. Memorial Sloan Kettering in NYC changed its policy after enough of us walked away to use cold caps elsewhere. Oncology brings in huge money. Centers do not want to lose that income.
I live two hours away from the place I switched to in order to use cold caps to save my hair, so I would encourage you to consider traveling a bit, if you can, in order to find a place to cap. I went to NY Hospital's Weill Cornell Breast Center for chemo because it is very supportive and has had well upward of 50 women use them.
Could you have your doctor call Dr. Anne Moore there to speak to her about modern Cold caps? She's my doctor, but more importantly, she is also its Medical Director and an extremely well respected oncologist in NYC. Other hospitals, including Sloan Kettering, have called her for information about them.
http://weillcornell.org/annemoore
212-821-0550
There are several women on here who used Cold Caps in the Philly area, but I don't remember any Delaware girls. Failing changing your doctor's mind, can you get to a center in Philly?
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Welcome DEbeachgirl, no need to apologize to this crowd for your "vanity". We all get it and went through a lot of hassle and expense to save our hair. It was worth it. I was treated by the Hospital of the University of Pennsylvania and got my chemo infusions at the facility in Valley Forge. I was the first person to use cold caps there and my oncologist now routinely suggest cold caps to her patients. Depending on where you are in Delaware this might be an option for you. Just an FYI, you're pretty much on your own with cold caps no matter where you receive treatment. Even the centers that welcome cold caps (or just tolerate them) don't provide any assistance.
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Leslie, you're doing great. Three down- one more to go?
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JC254, yes, just one more to go
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Jalsgal,
I rinsed each shampoo with diluted cider vinegar. This really helped with flaking and itching.
Best wishes, Jenifer with hair!
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Thank you for all of the advice!!! I am actually going to the University of Penn for a second opinion anyway. I like my oncologist but at this stage I'm not going to sit around and not be proactive in my treatment. I haven't read all of the posts but I've read some information on the different caps. I am definitely going to read through this thread. Thanks for all the time you ladies have taken to put together this information and advice. I was diagnosed at 34 and losing a breast and my hair just sucked!!!! My husband is on board to do the cold caps if we need to. He agrees that it would help my esteem and quality of life for sure. I was such a mess on ACT I think he would try anything!
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Thank you, JeniferE....I'll try that! I noticed east bay, ca? Me too, San Ramon, u?
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DEbeachgirl - I receive all of my treatment at Penn (Perlman Center). While I decided against using cold caps, I did ask the chemo nurses if anyone ever uses them (this was 3 yrs ago). They have had patients use them and didn't seem at all put off about them. The chemo suite has all private rooms which should accommodate your helpers and equipment easily. I found the rooms to be very comfortable and the nurses top notch. While it can be a nuisance to navigate the area with all of the construction, once you are there, the facilities are very pleasant. As JC254 mentioned, Penn has a campus in Valley Forge, right off of rt 202. That center is new and very easy to get to. There is plenty of parking and you are right down the road from the King of Prussia Mall. You could get some holiday shopping done!
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Hey JC254 - Still waiting for my oncotype test results to come back but I don't think it will make my decision change. I think just to be safe, I'm going ahead with the 4 treatments of TC at Valley Forge. I'm stil doing a lot of reading here on this site regarding the cold caps. Seems like a lot of work but really would like to save my hair. I am scheduled for my 1st treatment (can't even believe I"m saying this) on 1/7/15. I really would like to speak to you ... I'll try to call you in the next week or so. What times are better for you? Thanks again for your note. I'm thinking of dying my hair back to original color (darker). Should I do it now? or can I wait for another week or so? Should I use an organic color or something similar? I just usually use whatever they have at my salon? Sooooo scared for this entire process .... ugh.
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Jalsgal,
I am in San Leandro. Getting treatment in Berkeley, Alta Bates.
Waiting for a call to set up surgery date, hoping for early January.
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Goldenpaws, I'm not sure about coloring now. If I remember correctly, PCC advises against it but I think there have been some who did with no harm. Hopefully they'll share their experience.
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Hi goldenpaws.
Don't mess with your hair AT ALL. Don't color it, don't cut it. You should start using a pareban and sulfite free shampoo (Whole Foods brand is great and way cheaper than any other I found).
You can TALK to your hair and thank it for hanging in there but that's IT if you are going to use the cold caps.
I thought I would look like a skunk once my naturally blond hair started growing out to its other naturally mousy brown and grey color but it didn't happen because my hair basically stopped growing during chemo. I waited the full six months after my last treatment before returning it to its natural blond color and it really wasn't that horrible looking. Not great, but not the "oh my God how can that woman possibly leave her house looking that way" I envisioned.
I lost about 25% to 30% of my hair but maintained full coverage. I thought I looked fine (that's a BIG deal) but looking back at the photos I looked sick....really sick......but not because of my hair!
You won't ever regret using the cold caps. I'm careful of my hair to this day -- use the Whole Foods products and avoid sprays and gels and the like as well as heat. I love running my hands through it. Keeping my hair was a real win through a time of great loss.
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I colored a few weeks before my first TC treatment with no issue. I know they told me not to, but I had to cover the roots one last time!0 -
How long did you wait to color after your last chemo? I'm using Colormark nowto cover my grays. Luckily I don't have a lot.
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I colored within a week of my first chemo. My salon colorist bought an organic color special for me for that last color. It looked great and I had no issues at all - hardly lost any hair during or after treatment. However, I had weekly taxol and herceptin, which is less harsh than other chemos. I also had a trim about 10 days before starting chemo. I colored about 7 weeks after finishing chemo - used Clairol Beautiful twice (it didn't cover very well - no peroxide and no ammonia) and then went back to the usual salon color product. But I wasn't shedding at all at that point.
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I am trying to remember when I used real color...not colormark. I think it was about 5-6 months PFC. I was still shedding at 4 mo's PFC so I waited. I got a good hair cut (several inches cut off) about 7 mo's PFC. I did have two one inch trims before that though.0
