Cold Caps Users Past and Present, to Save Hair
Comments
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WW - "I refuse to suffer any more than I need to. Anything that I can prevent I will." I agree. This is exactly why I iced my fingers, feet and toenails. I have seen the damage caused by chemo and did not want to go through it myself. A woman scheduled for radiation at the same time I was had the most awful thick, yellow, ridged nails from chemo, others lose some of their nails completely or their nails turn dark - both fingers and toes. Losing nails is very painful, and not something I wanted to risk, so I iced them and I try to encourage others to do so as well.
It sounds like you are well prepared. I stocked up on everything beforehand too, although I never added it all up. It makes a lot of sense to have things on hand in case you need them. Best of luck!
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Warrior Woman, sounds like you're all set, when do you start chemo? Don't let anyone at Penn give you a hard time about the caps - although you don't seem like the kind of person who would let anyone give you a hard time : ) My surgeon at Penn, Dr. Czernicki, was the one who suggested that I consider using cold caps as he had recently had a patient who successfully used them. I had already heard of cold caps but was skeptical. He put me in touch with his former patient and that's what convinced me to give them a try.
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Hortense - Not to mention neuropathy! The thought of long term discomfort and constant reminders of the sucky part of my life is even worse than disgusting finger nails.
JC - It looks like I'll stay local for the chemo and start Tuesday. Ugh. Tuesday. The local center is willing to accommodate me after I threatened to go to Penn. It saves me a lot of commuting. I have an appointment at Penn with oncologist Fox on Thurs. so unless he tells me something dramatically different I'm staying close. Penn was critical for surgery. I could not stay local for BMX and reconstruction. It was worth the trip. Dr. Czernicki was on my top list but I could schedule much sooner with Carla Fisher who I adore. They're all good there. Wu is my PS.
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WW - you've got this. Sounds like you are well prepared. The funny thing is you only get 4 or 6 chances to get it right (depending on the number of chemo sessions) so you want to do it right the first time. Ice everything you can and don't get too worried when the SE's set in. Drink as much as you possibly can and walk a little every day. Before you know it it will be over and you will be combing your beautiful hair. As for dry ice, I was able to find it at , of all places, my local Harris Teeter grocery store, for 99 cents a pound. A wholesaler charged $2.39 / pound. Definitely check your local grocery stores.
Also, don't forget to get a prescription for a wig from your MO. While I've only heard of one success story so far, you definitely need this to submit an insurance claim. I submitted mine and will post when I've had a response.
Finally, get ahead of the SE's as best you can and you will be fine. Will be thinking and praying for you!
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mfm - While I've only heard of one success story so far - Are you referring to only one cold cap success or insurance claim success? I'm sure you mean insurance. The wig I picked out is only $250. That's far less than what I spent at the health food store this week. LOL Thank you for the encouragement.
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WarriorWoman-Look into L-Glutamine powder to prevent neuropathy. You mix it with juice or tea.
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Makingway - It is the one thing on my list that I haven't been able to find. I will look online. Thanks!
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WW - I'm pretty sure I have a ton of L-glutamine powder left over - will have to look to be sure, but I could send it to you if you want it. I took that and also did the acetyl-L-carnitine regimine, and I think B6. It's been a while...so nice that chemo prep is getting crusty in my brain...life does go on! It will be over before you know it!
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DanceTrance - Thank you. You're a sweetie. My husband just ordered it for me online but I really appreciate the offer. I have the B6. What is the acetyl-L-carnitine regimine for?
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Neuropathy. Although...now that I think harder, I now recall the trial they did with it came out after I finished with it and said it didn't show an improvement and was the first study to show it might worsen it (all previous studies showed improvement). I had it in my head that I took 3 supplements during chemo and so shared that...forgetting the results that came out afterwards! I only had tingling for a few days here and there, and thankfully - no permanent neuropathy. It was my greatest fear.
I retract my suggestion - geesh - so sorry, forgive me for my chemo brain!!!!
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On the dry ice subject... my mom called around to a few places and we are actually getting my dry ice for free from the Penguin Brand Dry Ice distributor here in Atlanta. They have apparently done this for several women who were using the caps. Not sure if all of their locations will do this, but it is worth a shot to ask!
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Daye...Can you please let me know what happens? My mother will be getting chemo soon, and it would really help if we could get the dry ice free. I'm going to see if they have a distributor in Wisconsin.0 -
deelightful- I have already had three rounds so far! The dry ice company has been great. The distributor location is not very convenient, so they have a courier that delivers it to my parents' house and helps my dad put it in the coolers and we just pay for his gas money. We could have driven and picked up the ice for free. Maybe you could try emailing or calling their main number?
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That's excellent, Daye. Did you just ask if they would donate free dry ice for your mother? How did you go about doing this?
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That same dry ice company had said they would be willing to donate my ice. Unfortuantely, their warehouse is not close to me so logistically it just didn't make sense as I need to be able to pick the ice up before treatment so I have to get it from one of the retailers. They were super nice and even gave me their drivers' delivery schedules for all the retailers close to me, in case I show up to pick up the ice and my retailer is out.As more people start becoming aware of the cold caps, it will be interesting to see if there is an impact on the dry ice availability, but the coolers they put in stores hold 400 lbs and don't see alot of people using drying ice except at Halloween. And,... I hope to be done well before then!!!
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I am actually the one going through chemo, not my mother (she did have BC 8 years ago though). She didn't ask for it to be donated, but once she told them what we would be using it for, they offered.
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My MO was not that familiar with cold caps so when I asked for my letter of medical necessity I printed out the below and gave to her. She only wrote a couple of paragraphs- but I saw she referenced the below- and it did the trick.
Article I gave to my MO for my insurance company's letter of medical necessity
http://ijopp.org/jan_mar_2013/28-33.pdf
also the below info from the Penguin site
Request that your physician write a "prescription" for a "full cranial prosthesis" (not a wig) and a letter explaining hair loss and its effects. That it isn't just for cosmetic reasons but for emotional well-being as well.
Read more:http://penguin-cold-caps.proboards.com/index.cgi?board=prouctsupport&action=display&thread=70#ixzz2ppqwKzIMPenguin Cold therapy can stop serious damage to the hair roots caused by the essential chemotherapy (man made drugs) Cold therapy may prevent hair loss but its main purpose is in stopping damage, sometimes permanent to the body’s cells. This aspect should be discussed with your doctor ask your doctor for his/her support in your application for your medical claim .The damage to which I am referring is
1/Loss of pigmentation to the follicles
2/Change of colour to the follicles I have known hair to re-grow greenish in colour.
3/Straight hair to re-grow curly and even half curly and half straight
4/The length of the re-grown hair to be shorter than before (This needs verifying)
5/The length of the monthly growth is shorter than before ( means hair will not grow as long as it used to be.) This is particularly distressful to women who have had long hair all their life. Can a real hair wig be purchased with hair past the waist and hold there and at what cost?.
6/A more common occurrence is the hair when it re grows is very fine and not as thick as it was originally indicating that some permanent damage has occurred to the hair bulbs, no different really to a Tulip, or Daffodil bulb.
7/Permanent Hair loss This has happened with certain chemotherapy drugs and can also happen if the hair roots are damaged or in poor health with normal chemotherapeutic drugs. IF YOU ARE CONCERNED ABOUT YOUR HAIR IT IS ADVISED ALWAYS TO CONSULT A TRICOLOGIST BEFORE STARTING CHEMOTHERAPY for a hair heath report for it may be essential to use cold cap therapy to protect the hair bulbs to stop possible permanent damage and total alopecia.
Read more:http://penguin-cold-caps.proboards.com/index.cgi?board=prouctsupport&action=display&thread=70#ixzz2pprKrtdg0 -
I'm sorry, Daye. I misread.
tmb...I appreciate this so much.
Thank you all for the information you've provided. You all make this a lot easier for both my mother and myself.
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tmb173 and all others who have been referred to a 'Trichologist.
http://en.wikipedia.org/wiki/Trichology
From Wikipedia;The International Association of Trichologists (IAT), a non-profit Californian corporation.
Miyohara International company was once associated with the Penguin cold cap company and linked on the PCC website, although it no longer is. Here is the link to the older version of their webpage
http://www.msc-worldwide.com/indexusa.html
http://www.miyoharainternational.com/
I know of a few women who made appts. seeking advice at this office, which is located in CA. The woman in charge of this one woman operation charges $300.00 for an appt. Hair analysis was considerably more. I'm a bit skeptical if this is even a legitimate profession. When the Penguin Co. first gained a presence in the USA in 2009 I was instructed by Frank Fronda, the PCC inventor, to have hair analysis done at this office before, during and after chemotherapy treatment. I could not afford to have it done and the Penguin Co. was unwilling to cover the cost for this 'research'.
Be skeptical of recommendations provided by the Penguin Co. They are not medical professionals. They do not support the recommendations given. You will find more helpful and constructive advice here on BC.org.
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thank you makingway. I was not referred but I will keep this on file for those who have come to me with questions in the NJ area. The info I printed from the penguin website was only for the purpose of giving my MO background information for a letter she needed to write for my insurance.
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tmb173-That's great that you got back half of your cost on the cap rental, not so great that you had to go through so much trouble doing it! I wonder why the Penguin Co. doesn't have something like this posted on their website...
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My insurance, United Health Care of New York, turned my claim down, although another woman with it did get her's paid for. I may give it another try.
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I too had had better luck with the distributor for dry ice. When I called the retailer / grocery store, there was massive disorganization with no reassurance I'd have it timely. I spoke with the local Airgas Dry Ice location and they are glad to help. I'm sure they'll charge me for it. I didn't ask for a donation. I was very glad they're eager to be of help.
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Good luck to all the ladies venturing into cold caps land. If I had to do it all over again, I would even though I suffered through broken freezers at the last minute, a staff person who removed the caps from the freezer for no apparent reason and left them and scrambling to get dry ice delivered. It was a huge huge hassle practically every time I used them but I saved 1/3 to 1/2 of my hair. The chemo infusions were much easier than dealing with cold caps, at least for me. I think if the onc is behind it, life gets better but mine wasn't supportive. I think I have changed her mind however. Anyway, as I said, good luck. The results are worth it.
Amy
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loving all the pics ladies - you all look terrific!
tmb - glad you made it through radiation. it was a bit rough for me too.
curly - we had similar experiences i think. i lost a ton of hair - but i had a ton of hair. my brows and lashes didn't fall out until after chemo - but then grew in relatively quickly. like you i used naturtint color. i broke allllll the rules on that one and colored relatively qucikly PFC. it made a world of difference i thought. just made me feel better.
science, mdg, amyq, makingway, dancetrance, jc254 - glad to read you are doing well.
hortense, let us know how it goes if you decided to give the insurance another try.
warrior, deelightful, daye, onetex, sugar... hope you all have great results with the caps. haannnngggg in there!
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Kaydeessmiles - Had you stopped shedding at the time you colored your hair? I am picturing one bad hair summer....but one really great hair autumn!
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Has anyone used any blonde color or highlights less than 6 months PFC? I feel like pretty much all decent-looking blonde color has peroxide, which I know we aren't supposed to use. I am going on a cruise about 3 and half months after I finish and I would love to have my highlights done before then. I know I have a while, but just thought I would go ahead and ask! Thanks
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Daye - I did not - waited til 6 months. I was too nervous to try. I had dyed my hair brunette prior to surgery/chemo so that I wouldn't have to worry about highlights for a long time (my roots are really dark). When I did do highlights at 6 months, they used something called Synchro, which they said is a bit less hard on the hair than whatever they normally use to highlight my hair. It takes a lot longer to lift. I don't know much more about it than that, though. I hear ya on wanting the highlights for the cruise...that's a toughie! We blondes can get addicted to our highlights.
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I waited 3 months for a relaxer- it was how I celebrated finishing radiation- and everything has been fine. I am do for another in a couple of weeks which will be 6 months since chemo.
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My last chemo was July 2nd and I colored my hair, professionally in late August. No proxide however and my hair did great. It was just the boost I needed to feel better about losing about 1/2 to 2/3 of my hair.
Let me add, Penquin CC suggests not coloring your hair for 6 months, however there are a few non-peroxid options available and they're much less harmful to your hair. I am not recommending anyone go against the suggestions from PCC, however I had to do something about my awful looking hair so I rolled the dice and won!
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