Cold Caps Users Past and Present, to Save Hair
Comments
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littlepenguin60~
I did not do FEC but I would like to encourage you to continue hanging in there...
Hopefully someone who was on that will have some advice.
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Hello - I am one of the graduates who used the Penguin Cold Caps and did not lose any hair. I did chemo (Cytoxin and Taxotere) from July through the end of September, and while I had some shedding during those months, in retrospect I realize it was normal shedding. I am 53 years old, with red hair to the middle of my back. The chemo turned my roots white and my previously straight as a board hair became curly. The worst times for me were the days which were 15 days from my last chemo treatment (because I was convinced that if my hair was going to fall out, it would be by that day) and the months PFC, because my hair looked faded and I hated the white/grey roots, even though my husband kept reminding me that I had longer and longer roots because my hair was still growing. I dyed it with a non-ammonia color just before Christmas (Loving Care) and then went for the regular-strength dye job last weekend - with no bad effects. I will try to post pictures, but there's really no difference in my hair - hairline, sideburns, color - between last year at this time and now.
So, that's a long boring story to let you know that - yes, you *can* keep your hair. I did, despite the fact that every doctor and nurse told me that it wouldn't work. Now I just go to appointments and fluff my long hair <giggle>. It made me feel that there was something *I* could control in this process.
I wish all of you in or beginning chemo the very best,
Cindy
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CRV,
Great report. My daughter starts chemo Thurs, Jan 20 after several delays due ot the drains being in 3 wks, cellulitis, and then the need for a CT due to a shadow on the lung and of course our snow storm delay. She did change doctors also.
Anyone,
Has anyone tried doing the caps without the boxes? I thought about it because the dry ice slabs are wrapped in heavy brown paper and the caps fit into a 2 gallon freezer bag. I would put a towel between the wrapped ice and the caps. Could get away with one 60 gallon cooler this way.??
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Cindy, thanks for the update....really appreciate it and helps give a time frame to the road ahead for me and others. I'm 6 days PFC and starting the shed I seem to get for the next 5 days ....there is still anxiety, but feel I've successfully kept my hair through chemo! Completely understand what you and Drim have said...the few months post chemo will be hard b/c the roots, color, etc. I again go to the " half- full" idea of most people on the TC regimen I was on are only starting to grow hair 8 weeks PFC...and again feel thankful.
MOP~ I would talk to Frank Fronda or the rep you got the caps from....they have said the using ziplocs will damage the caps if kept in the dry ice without the keepers. Would hate to lose my deposit or pay for a cap....The only time I did this was when we were waiting for a cap change and it got too warm and one emergency one on top of the second cooler in case we couldn't get one the right temp for change.0 -
motherofpatient - the ziplock bag method was used by women about a year ago but it caused damage to the caps. When I got my caps in July 2010, Frank was emphatic that the caps must be in the keeper boxes when in dry ice! Caps can be in ziplock bags in your home freezer.
Colleen
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I just wonder if the ice is wrapped and there is a towel in between - how can it hurt the caps?
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It can hurt the caps b/c the dry ice is very strong so strong that two of my plastic keep boxes needed to be replaced bc they cracked the dry ice is strong potent stuff it also ate a way my cooler over the twele weeks so zip lock bags will not be strong enough and my guess is they are, the caps expensive to pay to replace!
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Motherofpatient: I am hopping up and down here to warn you: DO NOT PUT THE CAPS IN DRY ICE WITHOUT BEING IN THE KEEP BOX. Frank and the PCC staff could not be more clear or more adamant about this. Yes it takes more space, yes it takes more ice, but the caps are designed for the freezers where the temp is about a max constant of -32C. THEY ARE NOT DESIGNED FOR DRY ICE WHICH IS -70C. [When I met him in the Bay Area in June, he said because of this, the PCC website cannot have info on the dry ice method -- it's basically a liability issue.] In fact, the keep boxes (hard plastic) are often destroyed by the dry ice, and the boxes are protecting the caps (soft plastics). If you put the cap in a ziploc in dry ice, you will destroy the cap, and it will not function correctly for your daughter's chemo regimen, and it will cost you $$$ for replacing. Get the extra cooler or two, it is far cheaper than the cost of replacing a single cap and the results are well-tested, and approved by PCC.
For the block of dry ice: you need to break it into smaller bits, with a hammer or mallet. If you can purchase dry ice pellets it is better, no breaking up involved.
I can send you instructions if you PM me your email address, thanks.
Apologies if I seem concerned, but the hair care and PCC protocol has a very very narrow window in which to be successful. Correct handling of the caps is essential. I'm grateful that Frank discovered this tiny window in which us chemo patients can have kept our hair. We all want this to be successful for your daughter, and nobody more than you! But the protocol must be followed carefully and precisely.
I hope this helps!
Susan
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Thanks for the clarification. I am on my way to put the caps in their boxes. I keep them in bags while in the home freezer.
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Thanks for the well wishes--I am all hopped up on steroids and getting ready to leave for tx #3 TCH--this one scares me--- lost a lot of hair--hope in 21 one days post this tx--I fair better--se's have not been too much of a big deal----
Think of me and send well wishes--it is cappy cap time in one hour!!!!
Sharon
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Sharon, Good Luck...may the no or minimal SE fairy treat you well....and hang in there re: the caps! I am a week out from my last Tx and shedding... My worst shedding has been days 6-12 post Tx....I can tell it's much thinner, but no one else seems to... I'm still scared....we'll get through this!! With hair!!
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Hi I'm doing. My treatment right now and the caps are going well, much better with some pain meds! Hoping I keep more hair this time! Thanks to all of you for the encouragement to continue!
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Little Penguin - I am sending you freezing wishes for your cold cap day today. I am in Minnesota, so the wishes are sincere. I know that all will go well today. I am going to say some prayers and begin my "warm wishes" later today after you finish your treatment. You are a strong woman...let the cold do its magic and it will all work out!
Love to you today!
Annie
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Hello all!I've been following this thread with much interest since my journey began back in June 2010. It was so great to hear that something could be done to prevent hair loss if it came down to me having to do chemo.I just wanted to let you all know..I started 6 treatments of T/C back on September 24, 2010. I am now 14 days PFC with a full head of hair.....and I used the Elasto Gel Caps.I know the majority of you wonderful ladies used the Penguin Cold Caps, but since my insurance wouldn't cover it and I couldn't afford the extra $400+a month, I went forward with the purchase of the Elasto Gel Caps I figured if they worked....GREAT...if not, then no harm, no foul.I did shed, and had the most thinning at the nape of my neck and above my ears. I took pictures throughout which showed that I did not need a wig or scarves at all. (I have many to post, so am probably going to post them on PhotoBucket or something like that. I will let you all know if I do, if anyone is interested.) I probably lost about 10-15 % of my thickness of my hair, with the most shedding days 17-24 after treatment one. After each subsequent treatment, I still had shedding about 5-6 days after treatment and that would dwindle down to normal daily hair shedding after that.My infusions were on Friday, so I washed my hair the Monday before and wouldn't wash again until 5 days after infusion (yes, 10 days)...but then did every Wednesday after that...then the Monday before the next infusion, etc....I used the Pure Results shampoo and rinsed my hair daily with cold water. I slept with a bonnet on and only used a large tooth comb. My hair is shoulder length so I was able to use "non stick" ponytail holders and did a lot of pig tails or hats when it was getting close to hair washing day.Instructions for the Elasto caps were easy, but not very detailed, so I had to do plenty of research on my own and emailed a representative at the company that sells the Elasto Gel products, asking question after question to make sure that I could really do this and getting the necessary information to do it correctly......and honestly, I got tons of information about many things in the process by just reading this thread. So thank you!Of course, I learned a lot from "trial and error" too, but by the time we got to treatments 5 and 6, it was just something we knew how to do well.Only a few folks knew that I was using the caps at the infusion center and my oncologist still hasn't seen all the hair I kept. I have an appt with him tomorrow to get my ready for rads, so I plan on showing him then.I do know that there have been a few other women on this thread that have tried the Elasto gel caps with other chemo cocktails (AC and TCH) and although they did have success, it wasn't the success they wanted or expected. But, I suspect that is the same for the PCCs as well, as it has been discussed and I believed documented that cold caps in general, have better success on certain chemo cocktails and depending on the actual dosage given.I bought (and now own) 5 Elasto Gel caps that worked just fine for the 2 1/2 hours of each treatment. I plan on "paying it forward" to anyone that may want to use them in the future, once I'm done using them for the "out of the refrigerator" to stimulate hair growth process. I will NOT charge for the cost of them, but, anyone who would want to try them would just need to pay for shipping to them and promise to pay it forward to someone else when they are done with them.I know that I cannot call myself a "Penguinista"...so I've given myself the name of "Gel-ista"!But really, in the end, both companies (Penguin Cold Caps and Elasto Gel) are working everyday to improve the process of being able to give women a sense of control during this road we are all traveling together. It would be great for them to actually combine the knowledge they both have and maybe find the "perfect" process for everyone.I am grateful that they worked for me!Cheers to everyone who has finished treatment and good vibes to all those starting or are in the midst of it all....YOU WILL DO GREAT!peace and prayers,ToriDE COLORES!0
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Tori, First, congratulations!!! and second, THANK YOU for the report on the Elasto-Gel caps! I've wondered how they worked for folks and am so glad to hear of your success. Your oncologist is going to be very pleasantly surprised probably! I think the chemo cocktails do make a difference, and of course individual health/physiological responses to chemo.
I'm glad the clinical trials are underway, so that some of the variances can be documented and quantified, but mostly because the results can get into the medical establishment so that women (and men) know that there are options to treat this difficult SE of most chemos.
Way to go, girl!
Susan
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Greetings, cold cap users and veterans!
Here is a question for any of you who completed your cold cap/treatment period, or even know other non- cold cap users who are in the aftermath of treatment:
What has been your experience with hair regrowth after the thinning occurred? The legend goes that hair returns in different texture, possible curlier or straighter than prior to treatment.
What i would like to know is, aside from those qualitiative differences, has anyone observed that their hair re-grew to be quite a bit THICKER than it was prior to treatment? this observation/assessment might require abut 10 months after Tx completion, but in case you are one of those folks.. i wold love to hear about this either here on the board or via PM.
For the record: Coldcaps worked for me, but there was thinning. After that peaked, the regrowth has been lively and i am positive..as is my hairdresser..that my hair is signficantly thicker than it has ever been in my life (same texture as prior, just a lot more of it).
If this is true for others, it is really a fascinating question of basic biology that bears some investigation.
best to all, and hope to see some postings/communication about this.
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Torigirl - at what temp did you keep the elasogel caps and did you follow the times set by Frank? We had a problem getting the PCC to the right temp even though they were in a -23C freezer then on dry ice for 2.5 hours +++ before we started. Cap one - on the bottom - was only at -27C.
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Hi Everyone,
Great to hear Shashaz3 had little SE problems, me too! Very little SE's and am into day 15 from 1st chemo of TCH. I have had no shedding at all. Now, this may be fantastic news for me and for all, or it could be that the caps didn't work, because they weren't cold enough because of freezer problem on that 1st day and I will lose all hair by 21st day. I did use caps at home for 2 hours a day, changing every 1/2 hour, for day 2 thru day 6 and then every other day for 3-4X a week. If it works, it could be due to this fact.
Let me tell you what I think happened on that day when the freezer malfunctioned. I got little, to NO instructions for using the caps for the first time. Frank was very remiss and only told me to change every 30 minutes. No further info. I only knew that they should be -32 celcius from this forum. Also the nurse who is in charge of the cold caps was not in that day, it was a snow storm. (Could I have had any better luck??? )Anyway, I recently got an e-mail from Frank by mistake, that was in regard to an oncologist's office in Washington that was to receive a new freezer. Somehow my name was mistakenly on the list to receive this e-mail about: "How To Use The Freezer and the Cold Caps!! " In the instructions it said DO NOT RETURN USED CAPS TO THE FREEZER WHILE USING THEM, PUT THEM BACK AFTER ALL ARE USED, UNLESS YOU HAVE TO REPEAT SOME, BECAUSE THE WARM CAPS LOWER THE TEMPERATURE IN THE FREEZER!!! That solves the mystery of what happened to the freezer on my chemo day. We were returning the caps to the freezer every half hour and getting out a new one. As the day progressed the freezer temperature kept going down and each succeeding cap's temperature was lower. I reported this to the nurse in charge the following Monday (my chemo was on a Friday) and she informed me that the freezer was fine and the temperature perfect. We could not figure out what had happened that day, now we know!! The COMPLETE instructions should be written out and sent to every user.
I am very curious about Elasto Gel Caps, never heard of them, where did you find out about them?
Also, for everyone's information and interest---The is a company in Switzerland that has developed a new product called DIGNA CAPS. They are cold caps that are similar to an old fashion salon style hair dryer. It has a cap that gets cold air instead of hot air and you sit under it, much like the old hair dryer. It is being tested in England,Switzerland and elsewhere in Europe for FDA approval. Boy if that happens, "Halleluya!" what an improvement!!! A short while ago a gal from England said, here on this site, that she was doing the Digna Caps in England. I would love to hear from her about how it went, how it actually works(if it is simple, like my discription)etc. I am going to try and find her post and send her a private message and ask her to let us all know. It may not be here for us, but the future could look bright for those who follow us!!!
Keep Positive everyone, and good luck to all us new Penquiistas!
Nancy
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http://abclocal.go.com/kgo/video?id=7828757
Hello Keep Positive,
Above is posted a link to a local San Francisco ABC news clip about UCSF and cold caps. It has an interview with a Penguin Cap user as well as a DigniCap user. They are doing studies on both at that facility. If the link doesn't work Google ABC San Francisco news, type in cold caps and you can find the three minute broadcast.
So sorry about your troubles with the Penguin caps. My guess from the higher temperature of the DigniCaps and Elasto Gel products that the chances of your hair being fine are good. Keep thinking positive.
Penguin is a very small company and the Good Morning America and other publicity has pushed them to the brink. Hopefully others will find this site and get the information they need to be successful. It seems odd that your hospital with the freezer should have just one person that knows anything about the caps. They need to have a certain number of patients committed to get a free freezer and one person can't be there all of the time. Anyway, best of luck.
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Hi everyone, lots of posts! So exciting that another choice to save hair has worked. Thanks Tori for sharing! Would love to hear from someone that tried the Dignicaps... I've seen the videos but haven't heard of any of the outcomes.
9 days PFC and still struggling a bit with SEs... my nose started bleeding last night.. and I'm winded so easily...but still keeping up my walks most days and looking forward to the end of "my marathon" Day 72 , approaching mile 19.... still have my hair.. shedding continues... but washed it yesterday and can tell I'm getting a little confident... b/c I used the blow dryer on cool setting for a little bit.
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Here is my first chemo day and first & fifth caps. Had to do 17 all together. Made for a really long day but everything went well.
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Wow ladies...you have given me such hope! I am decided on chemo right now as my oncotype score was a bit in the gray area. I am 45 with very long dark brown hair and just hate the thought of losing it. If I do chemo I will most likely get TC X4. This thread is long and there is so much to read but if I read correctly, people had success with keeping hair on TC. Can you confirm? So I have a few basic questions about hair care during and after the process. So how often can you wash hair? It seems like only in cool water too, right? Can you color hair during the process? (clearly with dark brown hair the gray really shows! I will look like a skunk for sure so I need to know if I can avoid that look!). It seems like many with long hair wear a pony tail most of the time, I can live with that if I can keep my hair! Is there anywhere to view more photos of people's outcomes with this process? I am so hopeful. My biggest fear with chemo is having my 4 year old be freaked out if I had not hair...you have given me hope!
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Hi all - can anyone comment on the success of TCH (taxotere, carboplatin, herceptin) and Cold Caps, as well? I am 14 days out from my first round of TCH. All is fine, now. I keep wondering when the shedding will really begin.
I keep thinking about my hair - just had my first dream about hair last night. My head starts to tingle every once in a while when i am thinking about my hair. My scalp seems extraordinarily dry and flaky and itchy, too. It kind of reminds me when my family had head lice (which is almost worse than BC! ). When we (me!) had head lice, I had nightly dreams/terrors of having head lice crawling all over my head. Then, during the day, I had the same tingly, itchy, creepy crawler scalp feeling - THIS WAS MONTHS AFTER - the head lice. So, I am wondering if the weird scalp feeling, that I feel NOW is all psychosomatic. Anyone experience this and have any thoughts?
Sorry for the weird post, but so many people talk about the weird scalp sensations that possibly indicate the hair is about to fall out...when in fact, it may not be a true sensation.
The other thought i keep going back to is the study that my onco nurse told me about....a study in Great Britain in which men were given placebo, but were told they were taking a chemo that would cause hair loss. 30% lost all their hair with a placebo!!! So, i keep thinking that I am keeping this hair...just to be positive and outwit my sub conscious.
Thoughts?
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I too am doing TCH--just had my 3rd round 1/2 way WOOHOO! I still have hair--I have lost around the ears and the nape of the neck--but people would not know the diff----it is a great feeling being able to control ONE thing out of our lives---having the hair was big for me--hope it hangs in there !! day 19-22 are my big shed days---my little folicles only need to do this 3 more times after I succeed this tx round!!--I always wish for the best--for myself and my fellow hair savers!!! Penguinistas!!
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Good morning all.
mdg~ I just completed TCx4. I'm also 45.... I'm 10 days PFC. Have most of my hair..in a shedding period right now, but no one would know I had chemo...or can tell I've lost hair...what they may notice is I wear it in clips a lot and that I've missed 2 dye jobs...but on shampoo days I look almost like myself (LOL). I am so happy that I found this website and used the Penguin Cold Caps. I posted some pictures last Monday. Know it can take a lot of time but reading through this thread you'll get a feel for the experience. Think it's about perspective..I was fortunate (actually unfortunate) to have my sister go through same chemo about 15 months before me. She lost her hair...and just now getting back to the hair she enjoys...so these few months that I have less than perfect hair...I'm Ok with.
I have washed my hair on average twice a week in cold water. When I take a shower on non hair wash days I rinse in cold water. I have lighter hair so haven't covered my roots, but many have during chemo..sure they will respond.
Sharon~ Yippee! Half way done! Know for me this was mentally a huge milestone.
Annie~ Think the tingling, crawly feeling may be increased by our thoughts...I have been so obsessed with my hair can't help but notice EVERY single feeling on my head!
Day 73....:-)0 -
Love your counting--I do the same thing!!! Day 45
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Good day everyone,
Well, I washed my hair yesterday and I used Alterna Hemp spray leave in conditioner and blow dryer on cool setting. Wow! Big difference from Sea Chi conditioner, this one is much lighter, leaves hair nicer. I have short hair, maybe the Sea Chi is better for long, thick hair. Hair looked much better. No shedding to speak of, just a few hairs, maybe 5 or 6. I used to shed lots more before. I used a wide tooth detanger comb and at the end went gently over hair with my styling brush, just gently over the top of hair to kind of smooth it. I am at day 17 from 1st chemo treatment.
When do you start to loose other body hair? eyebrows? lashes?
I ordered the generic latisse for eyelashes and brows, but it hasn't arrived yet. Hope it gets here before 2nd treatment on next Thursday.
So far, so good, almost no SE's, just dry nose,with a little bleeding--use saline spray a few times a day and nurse told me to use vaseline in nose at bedtime--both working fine. Have a little funny taste in mouth, use Smart Mouth mouthwash and Oasis mouthwash a few times a day and that is working. The taste only seems to slightly effect taste of water and some fruits. I just ignore it and its okay! Its freezing here in New York and snowing every week, which makes it hard to go out for a walk. I've been trying to get out every day, but when it is impossible I run up and down the stairs a few times for exercise. Hope you are all doing well. We will all come out victorious with our hair intact!!! Keep Positive.
Nancy
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For all the new penguinistas~
I finished my TCH (finished TC in March, H at Thanksgiving)
Lost a bit of hair by the bottom of my ears but that is it. My hair is looking better and better each day. Using the Penguin Cold Caps made going through chemo so much easier. (Well, not the process of changing caps etc. but it made living my life so much easier.) I was able to go to my 4 kids school events and not have to care about a wig etc. It actually helped my self-esteem if that makes any sense.
I just wanted you to know that you can do it...
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Ang - thanks for your positive words. They mean so much. I have three kids and know what you mean. I am still just on day 14, so I have a long way to go....
Nancy - so great to hear where you are at. I am on #1 of #6 TCH.I am a Monday girl, you are just four days prior to me. No shedding for me yet. I did notice that i shaved my legs, all the way up. Night out. Anyway, the next morning I was struck at how wonderfully smooth my legs felt when i was in bed under the sheets. Then i remembered that I have had chemo....must be related. i even made my husband feel them and he thought they were "so nice" but then I explained. Weird!!! Could it have already started? Do the legs go first?
As far as the products, i am doing the same hair washing, for now. Two times per week. I am slathering on the Chi conditioner. Not sure I like it, but I am still using it. My scalp is really dry (see previous post).
Tons of SEs for me....but hanging in there.
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Regarding post-chemo hair regrowth, mine is thicker and lusher than ever, and I had Big Hair to start with. On some days it's almost a little zoomie, partly because there was overall shedding and the new hairs growing are about 3.5" super-tight curls. The new hairs make the longer hairs stick up higher. The rest of my pre-existing hair has become wavier than it was before also. Besides unnoticeable overall shedding, I lost hair at my nape and above my ears (especially the right ear for some reason) and there I have fast-growing ringlets. If I pull my hair in a pony tail, I get the look I was trying to achieve in 1970s for my prom with ringlets framing my face! :-)
My other body hair came roaring back also, beginning a couple of weeks PFC.
For those just finishing chemo, fwiw, I found that my PFC shedding continued much longer than I expected. It freaked me out for a while, I was afraid it was just going to slowly fall out. It didn't, of course, but please make sure your hair has really stopped shedding before you use warm water, styling products, etc. Everyone is different, and nobody knows their hair better than you. I finished chemo June 21 and didn't use warm water until around November. Your hair is STILL fighting even though your last chemo was weeks/months ago. My hair hardly sheds at all now, and pre-chemo I was a heavy shedder always.
Great to hear how well everyone is doing, and welcome to the new penguinistas! When I joined this list there were only 16 pages of posts, and not even a year later, we're up to 64. Amazing!
Susan
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