Cold Caps Users Past and Present, to Save Hair
Comments
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Gatomal - thank you so much for your feedback. I'm so happy for you that it's working! Such a victory in an otherwise trying situation. My sincerest best wishes for the rest of your treatment, and your delivery.
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Hi ladies,
I just got out of 2 weeks in the hospital due to intense back pain and fever. Never had back pain before...turns out I have a strep abscess in my back. On penicillin for 6 weeks and some morphine. How does this happen? They said that is million dollar question. I am concerned as during the MRI they saw some spine changes that they want to look into after the 6 weeks. Praying for good results. Lucky to get out of hospital for the holidays with my kids...
Ang7
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Starting cold caps/chemo (TC) on 1/8. Any recommendations for shampoo & conditioner. I'm sure it was discussed, but hard to read 417 pages worth of info
Overloaded right now with information, directions, etc. Ahhhhh ...... Happy Holidays! 0 -
Golden paws, a lot of us use DermOrganix shampoo and conditioner. I also use Kenra leave in spray on conditioner to get out tangles. It works great and smells really good. I found all these products at Ulta. You also may want to rinse with a little apple cider vinegar mixed with a few cups of water.
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goldenpaws - I used Giovanni tea tree oil shampoo. They also make a 50/50 shampoo that is clarifying and ph balanced, sulfate and paraben free..I didn't find the clarifying shampoo until recently. It's very good and I wished Ihad it early on when my hair was a grease pit from only washing once a week. For conditioner, I have very long hair so used a heavy conditioner on the length - Macadamia Nut Deep Treatment. Leave in condtioner - it's a 10 worked well. Also Alterna caviar prep spray. It's says it's for prepping hair before styling but also detangling. It's really light and won't leave you greasy at all.
For detangling, Jennliza pointed me in the right direction with cricket detangling wide tooth combs I used one that looked like a small rake. Ho rtense swears by the wet brush - which I use, too. I really like the tangle teezer - you can get it at Sally's. It's very gentle. However, if you get any matted hair, wait until completely dry and rub some corn starch in the tangle - another trick by Hortense that works well. I always use Josie Maran Argon Serum for my end - this is the only argon oil treatment I will use. It's her hair treatment, not the regular serum. It's amazing and worth the $32 from Sephora or QVC (I think QVC)
I just had my first haircut and had not a single split end, my hair isn't dry at all even though my skin got really dry. I did lose some hair, very little and not noticeable because I have so much hair. However, now I notice some little 1 inch hairs standing up like a little halo. I'm happy with the results. So I think the products worked well. Good Luck! You'll do fine.
To my ladies covering grey after treatment-
I just tried to cover some grey with Clairol Beautiful brown. It never works for me so I don't know why I'm disappointed it didn't work now. Anyway, it made my grey look highlighted. I even used extra drops of grey magic in the formula however, it all washed out after the first wash. Has anyone tried CoSaMo? It's ammonia/peroxide/ppd free. They sell it on Amazon. I didn't want to try herbatint - I'm afraid to do permanent color from a box and probably not a good idea since I'm only 6 weeks out of treatment. I have stopped shedding, though.
One of the nurses from Sloan called me because I had an upper respiratory infection that landed me in the ER on Christmas Eve. I'm fine now. He then went on to talk about how I'm the exception to the rule with chemo because of how I look afterwards. I told him there are lots of women who kept their hair, put on their their make-up and heels, and look amazing after! Look on this board! Maybe Sloan will ease up on future cappers.
Site is slow! Sorry for typos
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Hey Daniella - thanks soo much for the info. I'll look into all of this. Don't REALLY care how much it costs as long as it works.
so nervous about this whole process. So THANKFUL for all of you to help keep me going. Ordering my caps tomorrow. Now just have to figure out where the heck to get my dry ice :-/ hope you are feeling better, Daniella. My daughter has been sick since Christmas Eve along w a bunch of our friends. Merry Christmas, right!!? Thnx again for all the advice. ... nice knowing I'm not alone thru this crazy ride. -Kim 0 -
Ang7 - so sorry to hear this! I have no idea how this happens. My brother got strep or something in his leg, but he had a rod in it from a few years back - completely healed...yet it got infected. So strange!
FYI prolonged antibiotics wipe out your natural gut flora. Talk with your doc about taking Florastor. It is a yeast organism and isn't killed by the antibiotics. It helps reduce your chances of getting c-diff while on antibiotics (I had c-diff...you don't want it...).
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HELP! I'm trying to place my order for the Penguin caps and they're asking me how many headbands I want to order? How many is recommended?? TIA
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Goldenpaws I had two straps. Not sure if that is the same as headbands. Be sure to tell your dry ice supplier why you are ordering the ice. Many girls here got a discount or it was donated so play the BC card! Also let us know where you are located...someone here may be able to tell you about a good dry I e supplier. I had a freezer so I can't suggest any. Caps worked for me with TC x4. Photos in my blog. You can do this! We will cheer you on!
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I got 4 headbands and they refreeze quickly enough for me to reuse them.
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Thank you MGD and Jenn - ordered 4 headbands. Now I just have to figure out what to do with them!
have a good day. PS Thanks, mdg for other information. I'm in Bucks County, Pennsylvania. Did any of you call local grocery stores for dry ice? Not even sure where to call. Thanks again. I know I can do this .... with all your help and guidance!! Kim xo0 -
I have a video of my DH putting my first cap on so if that helps you learn how to do the caps, pm me your email and I can email it to you. I only used straps- no headbands though. Can anyone help with dry ice info??
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I'm getting my dry ice from Harris Teeter. My husband called around and because he told the manager of the store that it was for cold capping during cancer treatments, we got a big discount. We always contact them the week before and they make sure they have enough on hand for us. I think we get around 100 pounds and we end up packing two big coolers on chemo day.
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I found local grocery stores were more expensive, but I would call around and explain your purpose and see if anyone is willing to give you a discount. I used a dry ice company and they have one in Philadelphia, but it is in Delaware County, probably too far to be practical for you: http://www.continentalcarbonic.com/dry-ice-philade...
I would just google dry ice bucks county - brought up a bunch of possibilities when I did that. Then call around.
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Wow, you guys are amazing!!! Thanks. I will look into all these suggestions. Soooo happy I found this group
got my caps ordered today, bought some supplies and coolers, new shampoo, conditioner and comb. I think I may be getting closer to being ready for this hell ride! thank you, thank you! Happy new year Kim
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Wow, you guys are amazing!!! Thanks. I will look into all these suggestions. Soooo happy I found this group
got my caps ordered today, bought some supplies, new shampoo, conditioner and comb. I think I may be getting closer to being ready for this hell ride! thank you, thank you! happy new year Kim
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hi ladies,
Happy new year for all of you. I will start chemo soon and I want to rent penguin cold caps I need advice please
How to store them between sessions the sales lady said in regular freezer is it true ??
Did you try another brands may be cheaper that penguin cold caps ??
How you hold the heavy coolers on the chemo day can my husband hold them alone or he needs help ??
Thanks ,
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Good morning girls. Making calls today for dry ice. Thanks Dancetrancer for links. Very helpful. ... quick question. Do we need to pick up the ice the morning of treatments or can we get it the night before and store in freezer?? TIA
YOU GIRLS ROCK ♡0 -
You are most welcome! I picked mine up the night before around 4 p.m. Stored it in the coolers. I bought 100# to make sure I would have enough for the next day b/c the first time I got 80#, by the end of the treatment day my caps weren't getting quite cold enough...BUT...others did not have this problem. My treatment always started late around 10 or 11 a.m. (busy clinic), so that may have been the issue. You may be just fine with 80# if you are starting at 8 or 9 a.m.
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My husband is able to stack the two coolers with bungee cords and wheel them into the oncology office. He puts one in the trunk of the car and one in the back seat and they are pretty heavy!
We pick up the dry ice the day before and just store it in the coolers. My appointment is at 10 am.
The cold caps just stay in our freezer until the morning of treatment. Be sure to clean out your freezer because they take up a lot of room! My husband gets up early and packs them in the dry ice.
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ok, thanks Leslie, Makingway & Dancetrancer - very helpful. Received the directions today from PCC. Holy cow, is it confusing. Hoping after we do it once, it will all make sense. It's so overwhelming... I hope I'm making the right choice w cold capping. Ahhh :-/ my husband keeps saying IT'S ONLY 4 TREATMENTS... WE CAN DO THIS! Easier said than done. Totally stressing. Thnx again
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goldenpaws......almost everyone here that did TCx4 kept their hair....I personally don't know of anyone with TC that didn't....it is worth it and your DH is right! My DH was my capper and he did great....thanked him every day for helping me keep my hair! You can do this:)0 -
I've had three TC treatments and still have my hair. Last one is on Monday. You can do this, Goldenpaws!
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Roby7, there is a brand of cold caps that you can buy, called Elastogel, which is cheaper than renting the Penguin cold caps. Hopefully someone who used them will stop in and relate their experiences. Also I know Makingway has helped plenty of women who used Elastogel caps and she says they work just fine. Maybe send a message to Makingway and ask for her opinion. Good luck
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I have not been on here often and perhaps that is a good thing. There are days I simply don't want to think about cancer. I am 7 weeks post bilateral LD and doing well. I don't have as much energy as I had before. I assume it is due to having 6 surgeries and chemo in one year. I am 9 months post chemo and I have a funky hairdo with hair at two different lengths. Most of it fits into a ponytail and once it all does I'll have it evened out. I know the agony of fearing hair loss and wish everyone a manageable experience. It's worth it.
I am wishing everyone a HEALTHY, comfortable and happy New Year. Thank you for helping me through 2014.
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Hi. I had dose dense AC for 4 weeks & 3 weeks of dose dense Taxol. I was able to use the cold caps all the way through the AC but lost more than 75% off my hair. I decided to call it quits when I saw a lot of scalp and wide bare patches. I do not regret using the caps at all. Each cap change was cold like other posters have said but you honestly get use to it. I didn't shave my headuntil the end. I had my last chemo on Nov. 14th. I was bald for 2 months. My hair started growing back in mid December. Good luck ladies do whatever gives you peace. :-)
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SA8PG- Sorry for your experience. AC is known to be harder to successfully cold cap. I haven't seen many posts from you, can you please share what brand caps you used and what protocol steps you followed? Although capping didn't work for you, any information you can share with the group would be appreciated so others can learn. I can certainly relate to your experiience as cold capping didn't work as well as I had hoped (used a clinical trial capping unit called Paxman) but I kept documenting on this board so others may have the information done the road.
Thanks-and all the best to you on your journey
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No problem. I was using Penguin Cold Caps. I had 14 cold caps that were stored in the Rapunzel freezer. I also had the head band for the back of my head for extra coverage.
For my chemo regime I was on dose dense AC every 2 weeks & then dose dense Taxol for 3 weeks. I didn't take the last Taxol because of the Neuropathy.
My journey with cancer began end of July in 2014 while I was pregnant. First chemo was Aug. 22nd
Blessings
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SA8PG, unlike some other chemo regimens, cold cap success with AC chemo is so random. Seems only about 50% of women on that regimen make it through chemo with their hair intact. Some do very well and others are extremely disappointed with the results. Thank you for sharing your experience. It's important for those considering cold caps to know that results vary greatly depending on the chemo regimen. I hope you were aware of that when you started.0
