Cold Caps Users Past and Present, to Save Hair
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Hi farmerjo,
Welcome to the group! I chose Penguin caps because that company has been around the longest, and from reading past entries it seemed like (1) overall, more people had success using Penguin, and (2) I kept reading that the penguin cap design made them easier to use and shape to the head when frozen. On the down side, they are more expensive than Arctic. You have to rent them on a monthly basis. I think around $600 a month.
I'm sure others will be along soon to give more feedback. Good luck with your upcoming treatments ☺
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Hi farmerjo,
Welcome to the group! I chose Penguin caps because that company has been around the longest, and from reading past entries it seemed like (1) overall, more people had success using Penguin, and (2) I kept reading that the penguin cap design made them easier to use and shape to the head when frozen. On the down side, they are more expensive than Arctic. You have to rent them on a monthly basis. I think around $600 a month.
I'm sure others will be along soon to give more feedback. Good luck with your upcoming treatments ☺
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Hi ladies,
I'm past 2 of 4 Taxotere, Carboplatin tx. I'm in Australia and using the Paxman scalp cooling provided by the hospital here. I finished my 2nd tx on 20/6.
My hair shedding started right after my second treatment, but it's nothing like what I shed today. I washed my hair today and it's a major shed
and it just doesn't stop and there's hair everywhere! I think it will be traumatic if it goes on like this. I also see you ladies going through post chemo shedding and can imagine how it feels like This thread has been a mine of information for me so far. Thanks to all you wonderful ladies for posting your experiences and helping out others go through it.
Lots of hugs to you Phaila, I really hope it stops shedding for you..
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Zinny,
Did you just have surgery? Your stats mention surgery performed on May 31. If you did, that can cause an increase in shedding as well. Something to do with anesthesia and the trauma of surgery. It's a temporary setback. My shedding picked up after my port removal surgery, but it subsided pretty quickly.
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Hi, Membernow,
Welcome to the group! We have a couple of other folks from Down Under who cold capped☺
I'm not really familiar with the Paxman system, but I know there have been some clinical trials here in the U.S. There's a really informative thread posted on this site by a husband whose wife participated in a trial a few months ago. If you do a search on "Paxman" it should show up.
Good luck with your treatments! It seems like forever, but you'll be done before you know it! ☺
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Hi Cancerfreein, welcome to Breastcancer.org. We're sorry for your wife's diagnosis but glad you've found this awesome community!
Besides this, there is a thread where you may want to post also, the Topic: Tampa area BCO sisters II. And if it helps, we would like to add another thread that you may find interesting as a husband-caregiver. It's called The Husbands Corner (for family, friends, boyfriends, ect.)
Wishing your wife and you the best.
The Mods
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ABOUT PFC shedding- I'm really wondering if this shedding is from new growth pushing out old weak hair. Because I noticed my eyebrows growing in the same time this new heavy shedding has started. Before this week I had shedding but it wasn't anything abnormal...I was counting it like it was the 100 hairs a day we lose. This new shedding started when I had tingling all over my scalp. I am also noticing that this new shedding is coming from where my hair is the thickest on the top and back. I'm not having too much shedding from the very very thin sides. It's all a bummer either way...
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phalia, ask your PCC rep.they might know what is it.
I am started to shed on the bangs area again after yesterday's # 9 Taxol. Not as much on the back. WTF...I hope I will not be bold upfront...
I hope it will stop.
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I wasn't a fan of the pcc rep
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phalia, exactly why I didn't go with PCC.
pcc should really do something about their costumer service! They not the only company on the market anymore. ACC bought me by just beeing so nice and pleasant. After my first talk with PCC. I was really ready not to do cold caps.
Best of luck to you! Hope it will work out somehow...
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I'm reposting this for Farmerjo and others who may be making a cold cap decision-
I used Penguin with great success so I'm biased towards that brand. At the time I used cold caps (three years ago), most on this board were using Penguin with the occasional ElastoGel user. Now there seems to be a lot more ElastoGel users with varying degrees of success.
It's important to understand that there are only two brands of caps out there using the dry ice method. If you're not renting from Penguin, no matter which other company you use, you are getting ElastoGels. You can also order ElastoGels directly from Amazon and bypass the service provider. The main difference between the two is that Penguin caps have velcro straps attached to side flaps that you use to tighten the cap and conform it to the shape of your head. Gaps between the cap and your scalp are one of the main reasons bald spots happen, particularly on the crown. It's easier to get a good snug fit with PCC. ElastoGel is more of a one size fits all cap. If they fit your head well, you will do fine. If they don't, you may end up with gaps. It really depends on the shape of your head.
Good luck to those in the middle of it. For me, it was stressful but definitely worth it.
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Farmerjo, I used Penguin Cold Caps and I'm happy with my results. I did adhere to all the recommendations given by the PCC to baby my hair as closely as I could. I didn't have any bald spots, I had overall shedding but I don't think anyone could tell I lost any hair. You can check my and others' success stories in the following link:
Topic: Cold Caps: Success Stories with Photos here
There is also lots of information about both systems that Dancetrancer put together in the following thread:
Topic: Cold Caps FAQ's - newbies - how to save your hair from chemo
Before making my decision (way over a year ago), I read quite a lot of posts in this thread, I talked over the phone to a few ladies who used PCCs, as well to one who used ElastoGel caps. I also was under impression that Penguins had a higher rate of success. I agree with jc254 - PCCs can fit your head very well because of the adjustable parts. They unfold to be completely flat and when you put them on your had, you can make them very snug. You can look at a video on their website to give you a better idea.
My impression of their rep that I dealt with was that she wasn't overly friendly, but she was to the point and she got the caps to me on time, as well as the instructions. When a couple of containers for the caps cracked, she promptly sent me the replacements. Also, when I sent the caps back once I was done with my chemo, I got my deposit back promptly. I found that the results that the product showed to give to others were more important to me than the rep's demeanor. After all, I had to deal with her just a few times for a few minutes, but my hair remains with me all the time.
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Thank all of you for your responses!!!!!
Rec'd a call from MO today - she wants me to send her links about the cold caps TOMORROW...said they may have to get permission for me to bring dry ice on the premises??? Even though it will be in a cooler? Do all the cap companies require dry ice? I am so confused.
I read where the Rapunzel Project recommends Acrtic.
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farmerjo-if they won't give permission let them know you will go to a different infusion center. They all do the same thing and would be more than happy to take your money (20,000+ a pop!
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I have been doing my homework, researching the various cold cap companies, and it's disheartening to see that cold caps are not really effective if I'm doing the AC followed by Taxol? Is this correct?
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farmerjo,
I agree with phaila - YOU are in charge of decisions related to your treatment, including where you receive it. All cold caps require dry ice to freeze them to the correct temperatures, unless the facility has a special medical freezer on premises. The Rapunzel Project will donate freezers for this purpose, thus avoiding the need for dry ice, but you may not have the time or desire to go through all the necessary channels. Honestly, phalia is right. If the facility won't support your decision to cold cap, tell them you'll find one that will!
AC plus taxol is a harder regimen for capping success, but there have been people on this board who capped and kept their hair. Hopefully somebody will come along who has more experience with that treatment and can provide more input.
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BTW, I have thick waist-length hair.
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farmerjo,
Wow, you have such beautiful long hair, and what a great costume! The Victorian look suits you!
I just remembered the name of someone who succesfully did the AC regimen last year. She had long thick hair very similar to yours. Her name is Angiel - you can do a search on the member list and find her posts.
I know you've got a lot to decide - best wishes to you whatever route you take!
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Thanks, Wildflower! Wanted to add a recent pic...waist-length hair with a bit of icing compliments of grandbaby.
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Ladies, I was shocked yesterday when I had an appointment with Radiology Oncolgist that her fellow and nurses had no idea what are cold caps. At least RO knew what that is. But it is shocking! In Sloan, Ny not to know..shame!
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Wildflower2015- I will be using cold caps with AC. I've completed the Taxotere and still have my hair. The people I've seen who kept hair on AC used Penguin, so that's what I am using. Penguin told me they think the success rate is about 70-80%. I expect to have pretty thin hair by the end of it if any but we will see! I have my first treatment next week and am doing dose dense (every two weeks) so I can post updates as I go.
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Farmerjo -That's a lot of hair. If you decide to cap, you really need to consider going with Penguin. In addition to the caps, Penguin will provide extra gel bands for gals with really thick hair like yours. I don't know if the Arctic (elastogel) caps have anything comparable.
meg2016 - Hi there! Wow, taxotere and AC! That's a strong combination. Good luck with your next phase of treatment and please keep us posted!
viktoryak - Yes, that is pretty disturbing that they never heard of cold capping! I don't understand that at all!
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farmerjo - I used penguin with dose dense ACT treatment in 2014 and had success. I won't lie - my hair looked pretty horrendous but I never needed a wig or topper. I lost most at my nape and above my ears which is common with pcc. At the end of shedding my part was pretty wide and I had one spot on top that could be hidden with scarf used as a headband.
I was very happy to have gone through the work.
Good luck to you
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Meg2016: I am using penguin and have had only about 1% hair loss...if that through all my taxol treatments. I have had 10 now. I am starting A/C in three weeks. 4 treatments, 2 weeks apart. My rep told me that I have to do 5 hours capping post chemo. I almost passed out. Right now I am doing 3 with the taxol.
My infusion time will be around 3-4 hours. With 50 minutes prior, 3-4 hours capping for chemo then 5 hours after, that could be 10 hours under the cap!
Did you get the same instructions? I am wondering if 5 hours post is a bit much?
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Meg 2016 : I am also using PCC , and have completed 4 Taxotere Herceptin Projeta and one AC. I was happy with the THP in terms of keeping my hair, by the 3rd and 4th round the hair was growing back.
Just washed my hair after the first AC and I have some more shedding than normal even though the major sheds are supposed to be after day 17-21 in AC , but I guess there is the Tax impact. I am optimistic and hope I do ok. The PCC folks also told me not to expect regrowth during AC.
Farmerjo: Your hair is spectacular I would definitely try and even if you keep the 50-70% they promise with AC, at PCC it would still be worth it and some manage more.
Susan BP - 5 hours is what I was also told though I think some do 4.5 hrs but if you have had such good results why not go for the 5 .
Victorak - agree that's shocking for Sloan, they were apparently a late convert to cold capping and not supportive initially.
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Susan Bp the infusion time for AC is 1-1.5 hours unlike the Taxol
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susanBP, I am doing ACC with weekly Taxol. Instruction 1 hr before and 4 hr after. 1 hr infusion. Total 6hr. Take Taylonol maybe twice during 10 hr?
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Ladies, help! I am so upset.
As a recommendation by ACC rep. I was using Brain Joseph's gel for eyelashes and eyebrows. I was told it helped to keep them. I am running out of it and just tried to reorder it but their website disconnected and phone no longer in service. What happened?
Anyone knows what is going on? Any other suggestions how to if possible avoid losing eyebrows on Taxol? Any products? I heard many people claim that they loose it 2 month after treatment... NO .. please not after we think we over. Didn't we have enough. I am totally having a nervous breakdown now...
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My MO asked for links re: cold caps and have not heard back. I did find out no one has ever been cold capped there.
I did find another chemo center (hospital) in Baltimore that has Penguin Cold Caps on the premises!
Is it possible to have my MO at one facility and infusions at another?
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Positive...I am trying to figure out why they are telling me 3-4 hours for the A/C infusion. I have to figure that one out. I do know there are premeds, and hydration at some point. Maybe they can hydrate me after the actual infusion so I can count it towards my 5 hours of post chemo capping.
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