Cold Caps Users Past and Present, to Save Hair
Comments
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BioSil is actually not expensive at $19 for a bottle that lasts about three months. Liquid silica has been through double blind clinical trials that proved it was more readily taken up and used by bodies to strengthen and thicken hair than the dry capsule form of silica Frank recommends, besides those are huge, like horse pills. Putting five drops in juice is easy peasy.
I think he is not aware that the liquid form exists. When I called my Cold Cap rep about it and also wrote an email to headquarters, no one had heard about it and had no idea how much should be taken in place of the capsules. So, I went by what the trial recommended and I have healthy, thick and shiny hair that gets compliments almost daily - very different from my avatar which was taken right after chemo ended. I attribute its condition to my using BioSil which I still do everyday because I am on Arimidex which is known to thin hair.
I posted one of the liquid silica trial results a long way back on this thread and have no idea where it can be found, or I would repost it.
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Where can I get the liquid?
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So I just found out today, I qualify for 100% financial aid for the caps if I get the discounted/used ones. Or 50% if I get new ones. I'd love more responses from you guys regarding the used/new caps.0 -
I also didn't know PCC offered financial aid or the choice to rent "slightly damaged" caps at a lower rate. It must be a relatively new program and you probably won't find too many on here who have experience with this. What do they say is wrong with the discounted caps? It must just be cosmetic- I can't imagine they would rent you caps that wouldn't work effectively.
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Wow, lots of new cappers joining us this week - glad to have you all on the board, we'll be here to help you through your journey! If anyone is interested in my list of chemo and hair tips, just send me a PM. I had 4 rounds of Cytoxin/Taxotere with very minimal side effects…not sure exactly what worked, but I tried every little remedy i could find
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Leslienva - I get my BioSil liquid on amazon from whomever prices it best. I know it is carried by some health food stores, but my local one does not carry it any more, something to do with their supplier.
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I am naming this protocol after my sister who helped me on my third treatment. Not to scare any newcomer's but man, the cold caps hurt. After this, I totally slept/was woozy/DONT REMEMBER the day. ENOUGH SAID.
Here are the disclaimers - check with your doctor, we're not medical professionals, do at your own risk.
Charlotte's protocol:
1 hour before ANY cap = 1 600 Ibuprofen
At premed's = 1 mg Ativan (ev. 4 hours)
At premed - 1 hyrdocone (ev. 6 hours)
By the time the third cap, I felt no pain. Done and done.
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I was able to find it at Whole Foods. It was on sale!
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Please help me to find out about the cold cap, i have been recently diagnosed with stage 1 , triple negative BC, and will be going through chemo. I want to find out where I can buy or rent the cold caps, how much it costs?I live in Los Angeles. Thanks.
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Blue flowers,
I am renting caps from penguincoldcaps.com. Many of us are doing this. The website is a great place to start. You can send questions to a penguin rep. They get back right away. Sorry you have to join us, best wishes as you explore saving your hair. My fourth treatment of six is today, I still have a good head of hair! Keep asking...we all love to help.
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blue flowers....I also used Penguin Cold Caps. My blog shares photos and my story with using them. If you decide to use them let me know and provide me your email in a private message. I will send you a video of my husband putting my cap on. It may help.
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blueflowers, I'm in LA, using penguins cold cap. Private message me if you have any questions I may be able to help.
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Blueflowers-If you need help with ordering the caps let me know. There are 2 brands available-Penguin and Elastogel. Most on this forum have used Penguin but several have used the Elastogel caps with success. There is a huge difference in cost. Penguin caps can only be rented-they recycle the caps until they are worn out. The Elastogel caps can be bought new or used, and passed on to another user when done with chemo. If your chemo treatments cover a three month period the Penguin rental would cost at minimum between $1,899.00(3 mth. w/4 headbands)-$2,744.00(4 mth. w/8 headbands) plus an additional security deposit of $500.00 to be returned when they have received back the caps w/o damage. Elastogel caps cost @$90.00 each and YOU own them. A set of 8 caps(minimum suggested) would cost a total of $720.00. I had helped dozens of women with the Penguin caps and was reluctant to use the Elastogel caps because the owner of the Penguin caps told me the Elastogel caps didn't work...I'm happy to report that he was wrong-they do work! I just finished helping a women who used them and still had hair after 4 treatments. Feel free to contact me if you need help
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makingway - that is GREAT news! I would love to see cold caps become more affordable for the average person! Do those Elastogels look like they could be re-used? If so, people could re-sell them and recoup some of their money, plus pass the cost-savings on to the next person.
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Yes, the Elastogel caps can be re-used. They can be re-sold, gifted to a friend or donated! I'm hoping that because of this more women will be able to use them. No one should have to go bald because they can't afford to use the caps! It took some time to get use to the different style of the cap. The Elastogel doesn't lay flat but it does fit better.
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Thanks to all of you who have responded to my post. It means a lot to hear back from you all. I have been recently diagnosed and still trying to process it all. I am/was very socially active in volunteering and other public works, and I turned 40 this year. So I am very overwhelmed with the thought of loosing all my hair. I am grateful that my bc is treatable and has a good survival rate, but still emotionally I am drained just to think about going through chemo and everything. I know I might sound like venting, but I feel like I can talk to you all here. I am really excited about the elastogel caps and will surely look into it and also will msg makingway. But cost is a concern for me, does the insurance covers it or no?Thanks.
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They might reimburse you afterward. The doctor must write a prescription for a prosthesis. Somewhere on this thread a woman posted what she wrote to her insurance company. It took her a long time but she eventually was reimbursed 'some' of her costs.
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Blue flowers - I turn 40 in December. We all get it. It's super overhwhelming and hard to process so much information on top of dealing with the grief of having this awful disease. Vent. We've all been there, are there or were there. We get it. Losing my hair seemed to be the tipping point for me. I could deal with all of this, take care of my 16 month old, my husband, my life but I need to do it feeling like me- looking like some semblence of me. Also, I needed to maintain my privacy and dignity in order for me to beat this disease. That's me.
Cold capping has not been the easiest process. It adds a lot of extra work especially since my treatment calls for 12 weekly infusions. However, keeping my hair has made a world of difference to how I feel all around. Good luck and please, vent, ask questions, say whatever you need to say...we are here for you.
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Blue flowers- check out poster Jennjdance. She just qualified for financial aid from Penguin. Don't be afraid to ask Penguin for help:) Wishing you much success!
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Yes, I was just about to post.....I got 100% covered from Penguin Cold Caps b/c I got the "gently used" ones which may have had an ink spot or small tear in them. If you buy them brand new, you can get up to 50%. Contact Patsy Graham of The Cold Caps Assistance Projects at patsy@ccaps.org.0 -
Great contact info Jennjdance! I'm sure that will help lots of cappers to come. Best of luck to you as well:)
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So it sounds like the financial assistance is coming from the Cold Cap Assistance Project (a nonprofit organization)- not directly from Penguin Cold Caps. Is that correct?
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Yes, correct. But Penguin Cold Caps referred me to them.
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Blueflowers, sorry that you are here and stressing. The caps are expensive, but they do work. I have my last of 12 weekly taxols Thursday and I have almost all of my hair. I didn't want my family and friends to be reminded of my cancer every time they saw me or for me to be reminded when I saw myself in the mirror. I'm still just me- albeit with cancer.
Hang in there! There are so many awesome women on this board that will help.
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Penguin does NOT sell caps-they only rent them. The Cold Cap Assistance Project is a nonprofit organization with limited resources. They help with assisting those who can't afford the full cost of rental by supplementing a part of the cost. They use to only provide assistance to those who live in the state of Texas. Let us know if this has changed.
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I live in NJ!
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so many new names on here in such a short time!
So I am officially 10 weeks PFC now. I've been washing my hair in luke warm water 2-3 times a week for a few weeks now, and using nioxin shampoo. I also colored it with naturtint almost 2 weeks ago (absolutely against the penguin protocols, but I couldn't stand it any longer, nothing was covering the 2+ inches of gray roots and I no longer wanted to leave my house for any reason, so I just did it), and I'm happy to say I still have hair
It didn't cause any additional shedding, and the shedding did finally come to an abrupt stop about 4 days before I colored. The only thing I find odd now is that I cannot see any new growth on my head. I see my eyebrows and lashes clearly filling in, arm and leg hair are also growing, but nothing on my head. Anyone else experience this?
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Yikes! Didn't realize my last infusion was on Halloween the biggest dry ice sellng day. I hope my usual supplier will come through. Biting my nails to find out.
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Starting my first chemo treatment in a few hours and needless to say, getting nervous! Did several practice runs with the PCC and they are on dry ice as I type this. Wanted to run our plan by anyone who sees this in the next hour or so to be sure we have it all correct. Wearing the first and second cap for 20 mins each while my premeds are being administrated. We will put on the third cap and the nurses will wait another 10 mins to start the chemo. Will do 1 hour of Taxotere then 30 mins of Cytoxan. We will keep changing the caps every 30 mins throughout the treatments. My schedule was also to keep the caps going for an additional 4 1/2 hours after. I also plan to ice my fingers and toes 15 mins before, during and 15 mins after Taxotere. If anyone has any other advice or suggestions please let me know! This site has been so informative and appreciate all of your sharing your stories;)
Thank you,
Mariann & my PCC "Pit Crew"
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Jalsgal - that's it. Make sure to take the caps out about twenty minutes before the first one goes on to check temperature. This way you know how long you have to take out the caps from the ice to prepare for changes. Sometimes they are so cold they need almost twenty minutes of kneading to get to the right temperature. Sometimes only ten minutes. You got this! Good luck!
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