Cold Caps Users Past and Present, to Save Hair
Comments
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I also wanted to check in with you all - this Thursday will be my last chemo visit! No party planned but I'm feeling very thankful to be finishing and ready to send my caps back. Good news is I still have my hair in spite of heavy shedding! It's thin - and I can feel the wind on my head - but overall I've got good coverage and extremely grateful for what's there and it looks pretty good. Cold Caps WORK!
Sweetmom - I also have bald patches just above my ears (I believe this is pretty common) - from the temple down to the nape of my neck (I also think it was because of the caps not sitting right on my head.) But hair on top covers it fairly well. Also a small bald spot on the back of my head about the size of a quarter (probably from frostbite) - that I can cover with some creative combing. I've had these spots since round 1 of chemo and didn't encounter any issues with overly cold spots from the caps. I just kept my hair down over those areas like I did before and covered my ears with liners as usual.
Will post pics once I'm done - to celebrate! Hugs to all!
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Thank you artsmart and dancetrancer!! :-)
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Artsmart - Is it time for the Hairy Voodoo Doll contest???
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Artsmart- Thursday I'll be thinking about you as I will have my 3rd chemo that day, too. Yay! For you. Remember to take a picture with a last chemo poster. I have my girls doing one for me for each chemo. Thank you for your advice on the cold caps. I'll do the same you did.
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Warrior woman- I didn't get the gel straps, I had read on their website about eyebrow strap ( something like that) and since I was not concerned about the eyebrows, I didn't ask about them. They never offered them, either. If I had known I would have ordered. At least I can compare how the rest of my head would be if I hadn't used the cold caps. When I go out I wear a silk scarf as a headband so the wind doesn't lift my hair and reveal the hidden spot. How is your shedding doing? I look forward to your updates, they've always been very helpful.
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I did eventually figure out all of the logistics for using the caps. It was a bit tough with the delivery coming the afternoon before my first treatment, on the day I had my port surgery.
Day 14 post chemo and I'm not shedding other than a few. I would say this is light for my normal shedding even. My hair doesn't feel "dead" as I've seen it described elsewhere. I'm on TCHP for six rounds. One round down and five to go. Next Wednesday (4/9/14) is my next infusion date.
My advice to anyone considering using the caps is if you are going to do it don't hesitate to place your order. There are still a day or so of logistics plus delivery time and you want a few days to get familiar with the caps and to save on shipping fees. Setting up a UPS account just takes a few minutes online and is active right away.
I bought my coolers at Big 5 Sporting Goods here in Seattle near to Fremont where Allied Ice is located which is where we sourced the dry ice from. We are going to try dry ice pellets next time as the ice blocks dimensions didn't fit inside the cooler as directed and we had to smash it up and repackage it into smaller ziplock bags to get it all to fit.0 -
Well, it has been a couple years since I completed chemo. with the PCC's and I am so glad I used them.
Just wanted to encourage all that are going through this now.
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My hair seems more dry than it was before, but it does not get dirty where I have to shampoo everyday like I used to.
Hang in there ladies...
Hugs to you.
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Morning all,I am writing to you from a little city called East London in South Africa.
I was diagnosed with Breast Cancer in my right breast on 29 January 2014. On 13 February I underwent a mastectomy of the right breast and had immediate partial reconstruction done. My surgery was a success and a very pleasant experience considering the circumstances.
The biopsy done showed that 2 of the 15 lymph nodes removed were involved.
I am due to start chemo (Taxotere ~ Docetaxel ~ and Cyclophosphamide ~ Endoxan) soon. Sounds like it will be the usual 6 cycles of TC.
I went through chemo (CHOP) at the age of 16 in 1997 and lost all my hair. I am dreading loosing it all again.
The oncology unit in East London will be arranging cold caps for me. Unfortunately I am not sure which brand of cold caps they will be, I think they may be the Elasto-Gel ones.
I am hoping with all my heart that these cold caps help in preventing hair loss and saving most of my hair.
Has anyone used additional products with the cold caps in order to prevent hair loss or to stimulate new hair? In South Africa we have access to Nioxin and Rogain. There is also a natural product made by Annique available.
Are there any vitamins that I should include in my diet? I've read that folic acid, vitamin B, iron and zinc are important.
I've tried to read through all the comments on this thread to gather as many tips as possible on using the cold caps. If anyone has any advice please share it.
People keep saying loosing your hair is the least of your worries, but for me, and I don't want to sound vain, its my main worry. I've been through it before, dealt with the pitty on people's faces, I just don't want to do it again. I'm a proud woman, wife and mommy who chooses not to make her business known to everyone. I really, really want to keep my hair.
Any advice would be greatly appreciated...
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Hello kilinki,
Sounds like you are well inform and on your way. Nioxin helps with shedding, I used it after I wet my hair and put on the plastic cap and then the elasto gel cap. If you google African elasto gel cap study you will see the success rate for the caps. I'm sure you will be successful and I also took biotin and b complex vitamins. I have a picture a couple of pages back, I also miss a day using the caps and I still have hair.
Good luck and God bless you!
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Ang7 - you look beautiful and healthy! And huge congrats - looks like you are coming up on 5 years PFC soon!
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Warriorwoman - HA! Yes, I think it is about that time!
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kilinki - I an a few others take Biotin and liquid Silica for hair and nails. They can be ordered on Amazon.
Artsmart - Sounds like a plan! We should give some time for others to get on board with their Hairy Voodoo Dolls. What do you think is a good time frame?
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Eligibility: Any person who lost hair due to breast cancer treatment.
Rules: The doll must be made using your own hair that was lost during chemotherapy or another BC treatment. That's pretty much it for the rules. Anything else goes.
Prize: Bragging rights!
Purpose: The intent of this exercise is to use humor and creativity therapeutically and to have fun.
A Word to the Wise: Voodoo is often associated with evil but is most often used to promote positive energy. Remember, the doll you make is made from you. Be nice to your voodoo doll. Take her shopping. Feed her chocolate and if you're going to poke her with pins make certain to do it right.
Stick
pins in the heart that have to do with emotions, pins in the stomach to do with
gut feelings, and pins in the head to deal with thoughts.Yellow: Success
White: Healing
Red: Power
Purple: Spirituality
Green: Money
Blue: Love
Black:
Repelling/attracting negative energy(source: http://planetvoodoo.blogspot.com/)
Good luck!
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kilinki, I think it's wonderful that your oncology clinic is arranging the cold caps for you. Do you have to bring your own helpers to change the caps or do the nurses do it? The Penguin Cold Cap recommendation is to take Biotin and Silica while using the cold caps, although my oncologist wouldn't allow those supplements. I think Penguin would say "no" to using Rogaine or any other product that you apply to your hair and leave in.
I'm so sorry you have to do chemo again! With your chemo regimen you should have success with the caps - good luck!
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Hi everyone, anyone have much success with cold cap therapy and dose dense regimen of AC (every 2 weeks x 4) followed by T (2 weeks x 4)? Seems pretty intense and unsure of how successful PCC would be? MO doesn't feel the therapy will work but indicated she was fine with me giving it a try.
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Hi Kazzy, a girl here that goes by Shipsgirl did PCC with ACT. She had quite a lot of loss but was still pleased in the end that she did it. I haven't seen her post for a while, but you could do a search and see her old posts on here. She had some pics too. Maybe if you PM her she is still checking too.
Good Luck!
Akevia and Ang, wonderful photos!!
WW love the contest!!! I didn't save any hair though
Kilinki, I did ElastoGels and TC x 4 and came out fine. You will too!
SchoolMom, holding a good thought for you always.
Dance! Hope you are well. Did you go to NY for your surgery yet?
Pat, Art, Agnes, SweetMom and everyone else! Hope all is well and Spring is finding you happy and healthier by the day!
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Kazzy, I believe the caps are less successful with the AC regimen but if you look back in this thread, I think there are some women who have done ok. Best of luck to you!
I am finished- taxol #12 today! I have been so fixated on making it to this day that now I actually just feel numb...and tired
If there is someone just starting out who is going to use the dry ice method, I would be happy to donate my low temp therm. It was brand new off Amazon & works great. Just keep in mind I live on the West Coast of Canada so you probably would have to allow a week or so for it to arrive.
I'll post a pic soon -figure I lost around 15- 20% of my hair total. Definitely worth all the hard labor! Happy to answer any questions- big hugs & continued success to all! Laura
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Congrats Laura!! It feels so good to finish. Now give yourself a break and some down time. You sure earned it Girl!!!
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thnx, 4sewwhat!
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Hi 4sew! No, I did not go for my next surgery in NYC. Unfortunately, I had to cancel it because my radiated side is so scarred down that it wasn't expanding well. Most can do multiple fat grafting procedures to loosen it up, but since I probably only have enough fat left for one more grafting surgery I don't have that option. So, I decided to delay surgery and try a round of physical therapy focusing on myofascial release to the breast mound. I don't have high hopes, but I had to try something else before going forward with surgery to try to maximize my chances of success. Thank you for asking!
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Dance
I am headed out, but I will PM you with some info I have gotten. I went for a consult with another doc here and he has actually suggested Hyperbaric treatments for me. My rad damage is not bad but they say it helps a lot. It is a big time commitment though. I PMd WhippetMom about it and she liked the idea and said go for it!
The doc I saw has a patient that had lumpectomy and rads around 9 years ago and now a recurrence, so MX. He used HB to regenerate the rads damage and has been able to turn it around enough to go back with TE to implant recon. I have been posting on the Radiation and Recon forum with updates everytime I see someone. So are the other girls!
I also have a consult with Dr. Namnoum here in Atlanta. He has a lady here that I talked to, she lives 15 miles from me! She was a patient of Dr. K and left for some of the same reasons you did. She switched to Namnoum and he was able to do an implant for her also. Don't know if any of that would interest you but it might not hurt to check them out since they are closer than New York! I would be happy to play hostess if you come to town!!!
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Hi everyone, What are your thoughts of creating a second thread so we can share cap PFC advise and stories. Now that i am in a different place, I started over at the begining of the thread to see what all was spattered out there but this thread is huge. On one hand, it is good to have as many people on this thread sharing their success as possible after they are done; on the other hand, reading through 350+ pages looking for info doesn't sound like a productive use of time.Whatcha guys think?
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I agree they are the best and will let my clinic know where they can be bought.
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I agree they are the best and will let my clinic know where they can be bought.
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4sew - I will look for your PM and thanks so much for the info! I have done some research on the hyperbaric stuff and have it in my back pocket as something I may consider. I, too, have heard good things about it! Unfortunately I have a history of inner ear problems, so I may not be a candidate. What a sweetie you are to offer to be hostess if I come in to town - we definitely need to get together for lunch!
Sorry for the thread derail all!
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Hi all,
Had my last chemo treatment today. Do any of you know off-hand whether PCC pro-rates the cost if I send them back before the 30 days I've paid for is up?
Also, the shedding's picked up slightly—it's making me a bit nervous. But, I've been having all sorts of odd problems, from a severe case of hives (that included the back of my head) to the flu to needing a blood transfusion, so who knows how that's interfered with my hair. Bottom line: I still have hair. I've been wearing headbands daily, but could probably get away with not wearing them if I used some clips. There are definitely some thin areas and bald spots that (so far) are covered by other hair. I'll try to post some photos tomorrow or Saturday so you can see what I mean.
I'm at Moores Cancer Center at UCSD and I think I'm the only one currently using cold caps. There have been a few ladies in the past but, generally, no one really knows about them. That's too bad. I'm hoping to change that.
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mazie- PCC does pro rate. They are a little slow on the refund took about a month for me.0
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Thank-you so much for the reponses that I received!
They have motivated me to believe that my hair will be saved.
I've just spoken to the chemo nurse who will be assisting me and she suggested I use horse shampoo during chemo as it is as mild as baby shampoo but promotes growth.
Has anyone else been given this advice?
I will definitely be getting Biotin and am looking into the Silica that was suggested.
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Hello ladies. I finished my cold caps in Jan 2013. I shed during treatment but as I go back and look at the pics, shedding was worse for 6 weeks after chemo. Now over a year later, my hair has thickened back up and is about 5-6 inches long where it was a buzz a year ago. I gradually trim the chemo hair to get it all evened out. I have about 3 inches to catch up to the good hair. Everyone is different, I am just thrilled that I found this thread and all the support over the journey. Hugs to all.
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Mazie! Congratulations. There is something refreshing about coming out of the tunnel.
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