Cold Caps Users Past and Present, to Save Hair
Comments
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Schoolmom - I'm the first at my hospital to use the caps. My MO has been very supportive and I have my DH to help me with them. We've used them twice now. Only hair loss I've had is from a too cold spot I got on the first use.
Only you can decide if it's worth it or not.
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School mom, (darn autocorrect won't let me connect school and mom...)
In my opinion it's definitely worth it. I feel like I'm in control of at least one aspect of all this. The ability to look "normal" instead of looking like a cancer patient is important to me. Your proposed chemo regimen is one that works well with the cold caps. I am lucky to have the medical freezer at my facility, but most women on this board dealt with the dry ice just fine. If you can afford it I would do it!0 -
Schoolmom, It was worth every penny and every bit of hassle for me. I was also the first at my center. The doctors had never heard of them, but were excited by my success.
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It was definitely worth it to me. I am almost 5 months PFC now, and my hair looks great! (if I do say so myself, LOL) I don't have to explain myself to anyone, if I don't want to. I belong to a social group and basically dropped out of it during this past year of treatment. I didn't tell anyone why. When I returned to a club meeting today, one of the girls said they thought I had moved away b/c they hadn't seen me all year. I just said I was super busy. No other explanation required - they could not tell what I have been through this past year.
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It was definitely worth it for me also, and for the 40 or so other women who have successfully used them at NY Hospital's Breast Center. I met women there who looked as if they hadn't lost a hair after their chemo was done. It was amazing. According to my doctor, who is doing a non-clinical study of the cold cap users at her center, T/C users do better than those who have ACT which is a tougher chemo.
I had four rounds of T/C and am among those who thinned, but some of it was my fault as I ignored Penguin's recommendations and lightened my hair six days before starting chemo. I now know that was incredibly stupid as I have had a lot of breakage at the point where the new growth met the bleached hair. That new growth is a healthy three plus inches long now, 3 1/2 months after my last chemo, so the hair on my head hair kept growing throughout chemo. If I hadn't bleached my roots so close to chemo the hairs that have broken off probably would not have weakened and broken leaving me with lots of 3 inch long hairs mixed in with my long hair.
Glancing in the mirror this morning I suddenly realized that I looked like myself again. I no longer look drawn or sick from chemo, thankfully. I looked normal. Well, with a thinner volume of hair especially where it hangs below my head plus I have long uncolored roots, but, basically I looked like me. It was a great feeling. If I had been bald, as I would have been at this point if I had not used cold caps, I would have felt so depressed. Especially as I know it would probably take me three years to look the way I always have - and still do today, even with thinner hair.
As it is, I have never been depressed by or cried about having this darned disease and I credit my positive attitude to having kept my hair. I think it has made the whole situation easier for my family to handle as well.
I say, if you can swing cold caps financially, go for it! The expense was a consideration for me too, but I decided it would be worth it if they worked. I was still skeptical when I started and told myself that if they failed I would send them back before the second month got charged. I really had a hard time believing the caps would work; but, happily, I found out that they do. Just know that they are COLD, and you will have to put up with that cold for about eight hours. The first one is the hardest until your scalp gets numb which takes about three to five minutes, then it's much better. Tylenol helps with the first few minutes of discomfort. Just remind yourself that you are saving your hair, and you will be able to handle it. It's not as bad as waxing a large area, and far easier than childbirth, so you know you can do it.
Dress as warmly as you can - several layers on both top and bottom, plus a sweater and a fleece jacket - and use an electric blanket to wrap up in. Also, take two Tylenol about 20 - 30 minutes before you put on your first cap. It helps. My nurse told me about that as she has helped dozens of cold cap users.
Don't forget to ice your nails, both hands and feet, during the Taxotere drip to ward off neuropathy and also any damage to your nail beds, so you don't lose or disfigure any nails. You can stop icing when the drip is finished.
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Wow, you guys are the best. I put in a call to Methodist and will be in the onc. building tomorrow so going to go by to talk to them.I want to get the prescription for Latisse....he said yes but did not give it to me. I dont think I specified I was going to use it throughout Chemo. Need to talk to him about using a different facility and how that works...get the order etc. I also need to talk to nurses about time for administration etc because the PCC website asks that and I dont have a clue. My girlfriend said she is going with me and will help....I hope one person is enough. Going to try and find someone on here from Houston to maybe touch base with personally.....Oh, and I just found out that perhaps my Aetna coverage is for diagnosis and surgery for cancer but not treatment. That would mean chemo/rads/hormone therapy. Anyone know how much chemo is?????? I have cancer insurance through work and the benefit is up to $300 daily but that hardly seems enough to cover it.
Thanks As I begin all of this.
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I'm starting my first tx this week and have been practicing with my caps at home. For the ladies with longer hair, did you have trouble with your hair catching on the velcro? Did you use anything to go between your and the cap, like a thin scarf?
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How long did it take to get your caps? We have the same treatment but I do not know the time etc to put on the order form. Thanks
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School mom, I left you a PM.....I would be willing to help you and your friend if I am in town..I travel for my job.....I would complete the form and call Geralyn ASAP if you need them for the 5th. Also, if no freezer coolers, etc are needed... Best to you .....lisa
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TLYM - yes, my hair caught in the velcro. I did three things:
1) small ponytail at the bottom of my head to help somewhat with keeping the hair contained
2) neck warmer with hair placed under it (not so high as to keep the cap from getting the base of my head/lower hair follicles cold, though)
3) hubbie would undo just enough of the velcro to allow the cap to be pulled off like a helmet - he'd then hold it up in the air a few inches above my head while I gently pulled the stray hairs that got caught out of the cap.
Definitely challenging with the longer hair, but workable - just takes a few extra moments of care when removing the cap.
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schoolmom - email geralyn making the subject line something like "urgent, need caps by Nov 5th"
You will need to get a shipping account set up so that the charges can be billed that way. Don't worry about how long the chemo takes on that form - you just need to tell Geralyn the details. She told me not to worry about that part, so I left it blank. You'll want to coordinate all through her - if you need her info PM me.
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@Schoolmom-Chemo is @ $60,000.00-$80,000.00. Yep, that's right! Hard to believe isn't it. I'm sure your insurance will cover it. If not, there are programs sponsored by the pharmaceutical companies that will help with treatment. Your oncologist should have the applications if you need to apply. I had helped a woman with the caps, who by choice didn't have insurance. Her chemo only cost her $3,000.00 for each treatment. For a total of $18,000.00.
The Penguin caps do work! They are well worth the time, effort and cost. How happy do you think you'll be in 3 months when you're all done with chemo and you still have your hair? You can move forward, without the constant reminder of where you've been. I have helped dozens of women save their hair http://www.penguincoldcap.net/ I wouldn't continue to do so if the caps didn't work. Don't be discouraged by anyone who lacks the knowledge of their safety and effectiveness. There are so many articles written on the subject it angers me when cold cap use is so readily scoffed at and dismissed. Especially by those in the medical community who you would think would care about the wellbeing of their patients. I never understood why the Penguin Co. asks for administration time, drugs etc. on it's forms. It makes no difference in the use of the caps. You wear the caps 50 minutes prior to, during, and after chemo for 4 hours. No matter what drug you are getting or it's duration. I believe they ask this information to appear more scientific. It's not because of the amount of time they would be wearing the caps. There have been PCC users who were to receive treatments for 3 continous 8 hour days and were advised by the Penguin Co. that that amount of time was acceptable for using the caps. The only reason I can think of for requesting such information would be to screen for people who should not be using the caps i.e., those with haematogenic metastases http://annonc.oxfordjournals.org/content/16/3/352.full
TYLM-Let your hair hang down as flat and straight as possible. Then seperate into 3 sections- 2 sides and back. Use a loose pony tail for each section, secured at just below the shoulder. Do not use pony tail holder at nape of neck because the hair would be too thick and bunched up.
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Question for those of you who got a little too frosty on the first treatment: Is there a way to separate out the flakes from damaged scalp such that it doesn't bring hairs out with it? I'm now past second treatment and only shedding is from this damaged agrea. It comes out in tiny clumps - 5-10 hairs when I wash my hair. Would love to be able to get rid of the flakes without losing any more hair in the front by my bangs.
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My hair is fine and fairly thin to begin with, so the pony tail at the nape of the neck was no problem for me. Didn't think about how that would affect people with thicker hair - thanks for pointing that out makingway!
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OMG! I just got off the phone with Frank Fonda, who is the originator of the cold caps......I tried to negotiate the website and find someone named Gerilyn. I decided to call the 714 number and he answered! What a dear, sweet man. He gave me the name and number of the local rep here in Houston, told me all about Silica (I told him I already knew about that from the boards) He laughed. He also suggested since I have shoulder length thick hair to drink 1 pint of warm water (yuk) every hour during chemo. Not sure if he means that day or for the 3 months! He made me feel so much relief and positive. Thank you all for pushing me through this. I am going to call the rep and move on with this.
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schoolmom - Four treatments of Taxotere/Cytoxane chemo at NY Hospital runs about $30,000 without insurance. I have a printout of it. If your surgery is covered, I'm sure your chemo treatments and radiation is also. Call your insurance company and ask lots of questions. I don't believe Aetna wouldn't cover all of your treatments for breast cancer. Just think of the news story that would make!
Keep a notebook and record everything as you go through all of this, it's very helpful.
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Dancetrancer and Makingway-Thanks for the long hair tips. I'll give them a try tomorrow.
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Frank Fronda was my first contact with the Penguin Cold Caps.
He seems to be a very caring individual.
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Hi all,
Just wondering if there's anyone following this thread who has heard of cold cap use in Vancouver, BC. I don't know if it's even going to be possible for me to consider cold caps as money is tight and don't know if I can wrangle up friends/family to help with the caps on the day of, but thought I'd at least look into it.
Also, because many of you are well ahead of me in researching effects of chemo on hair loss I'm wondering if anyone has heard of permanent hair loss from Taxol? I am supposed to do 4 cycles of Taxol following 4 cycles of AC and when I asked about permanent hair loss from this cocktail, my MO suggested that it was only Taxotere that had this effect on some women.
Thanks in advance. I've tried searching through this thread to find answers to my questions, but it's so long that I'm afraid it'll take me days to get anywhere on this without your help.
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Frank told me on Sunday that taxotere has a 17% permanent alopecia......
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While being careful makes sense, the literature doesn't support that number.......most articles find a more modest 3-6%.
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Thank goodness!
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Taxotere can cause permanent hair loss...I have a friend dealing with that right now. It breaks my heart for her. Her doc would not support using cold caps and assured her that her hair would come back. She has gone to see a dermatologist that specializes in hair loss...her hair loss is permanent. There are many girls on these boards that have had the same thing happen. I am so glad I used PCC's!
Welcome Schoolmom! Keep the questions coming...or feel free to PM any of us. I have pix of my hair before, during and after chemo in my blog. I am still looking for others to share photos on my blog if anyone is interested, PM me.
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I also have pics of myself before, during, and after, on mdg's blog. I feel like the caps were a Godsend, helping me through such a tough time.
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I completed my order form and should have them shipped to Houston once my card clears in the morning. I put down that I wanted them by Friday...so I can practice etc. Tracking down where to get dry ice and coolers...I have my port put in Friday so hope that goes well. My girlfriend got on line and watched the video last night so she knew what she was in store for. We are going to practice on Sunday. I am nervous that we will do something wrong and mess it up. I have should length thick hair.....unfortunately I trimmed it about 2 inches last week before realizing long hair is better. It's pretty heavy so it should weigh down ......
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Best wishes schoolmom - you can do this!
BTW, try this link to look for dry ice distributors in your area:
http://www.continentalcarbonic.com/where-to-buy-dry-ice19680.html
Looks like they have one in Houston!
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Tell the dry ice folks what you are using it for...some gals got a better deal on it!
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Frank IS a very caring man. What a difference he made in the process for me too!
I had taxotere...no alopecia on my head. Eyebrows and eyelashes never got really think again though. LOTS of brown pencils in my future.
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@schoolmom-The % of permanent alopecia/hair loss as the result of taxotere is variable and also dependant on age. As age increases so does alopecia %. It is believed to be @3-6% as 301724 wrote. There is a website devoted to those who have suffered permanent hair loss http://aheadofourtime.org/
Taxol and Taxotere are both in the Taxane family. http://www2.uah.es/farmamol/Public/AnnReviews/PDF/Medicine/Taxanes.pdf
Package insert for Taxol reports 87% alopecia-hair loss but does not give permanent results.
TAXOL (paclitaxel) Injection is a clear, colorless to slightly yellow viscous solution. It is
supplied as a nonaqueous solution intended for dilution with a suitable parenteral fluid
prior to intravenous infusion. TAXOL is available in 30 mg (5 mL), 100 mg (16.7 mL),
and 300 mg (50 mL) multidose vials. Each mL of sterile nonpyrogenic solution contains
6 mg paclitaxel, 527 mg of purified Cremophor® EL* (polyoxyethylated castor oil) and
49.7% (v/v) dehydrated alcohol, USP.
TAXOTERE (docetaxel) http://www.taxotere.com/oncology/about_Taxotere/clinical_pharmacology.aspx0 -
makingway~
That website, aheadofourtime.org was one of the things that helped me decide to use PCC's.
I believe it was called Taxotears back then.
Finding that, and this forum on BC.org really helped me find my way through treatment.
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