Cold Caps Users Past and Present, to Save Hair
Comments
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The PCC machine doesn't work nearly as well as the cold caps in my opinion. I'm interested to hear the success rate with the dignicap machine. Does anyone know?
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I'm guessing by your screen name that you help women with cold caps. How? There is so much information to process in deciding which caps are best. What is your opinion based on? I can't find any information about a PCC machine, only Dignicap machine.
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More of us on this forum have used Pengiun Cold Caps. They cost more but a majority of us have had success with them. There are a few gals that have posted on this thread that have used the other caps, but not many.
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Catalina, There is one person (tc9876) on this thread that used the PCC machine. She lost 50% of her hair. The machine is very new and only in a few centers I think. Hopefully they will soon make it as effective as the dry ice/freezer caps. You will need at least one helper to change the caps and strap them securely to your head. If you can afford Penguin, you should go with them (using dry ice or freezer, not the machine). They are by far the best caps. That is not just my opinion, that is the general consensus from this thread.
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I read a while back that there is a clinical trial on the west coast (San Diego?) using the Dignicap machine. Anyone know anything about it, and how it might be going?
Someone at my center, who started her chemo just as my chemo ended, was going to use the Penguin machine. I heard later that she was having a hard time with it, that the cap was very tight and uncomfortable. It could be that she had a big head like I do and it was designed for smaller ones and wasn't adjustable. I never saw what it looked like. I don't know if she continued using it or stopped.
I hope that Penguin will continue to improve their machines as a machine for cooling that uses just one cap would be ideal.
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Hi all, the Dignicap was being trialed at UCSF I believe; the machine does not get as cold as PCCs and is not used as long, and success does not match that of PCCs. The PCC protocol is, hands down, the very very thin window that we have of saving hair while going through chemo. The temps and times make a difference, and of course there are other variables beyond the control of the caps (quality and condition of hair; liver function; overall health otherwise; type of chemo cocktail and regimen). PCCs and the PCC protocol are hands-down the very best option for saving most of your hair during chemo.
Susan
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Just got favorited! This young woman writes beautifully in her NY Times column.
SCH @sch1919 @suleikajaouad Shivering in my Penguin Cold Cap during chemo. Damn you breast cancer, I will not lose my hair! #RealHousewivesOfChemotherapy 12:39 AM - 23 Sep 12 
Favorited by 
Suleika Jaouad @suleikajaouad NY Times 'Well' columnist, cancer thriver & healthy living advocate See what else @suleikajaouad is favoriting. View their profile 0 -
I tried to copy and paste something from suleikajaouad's twitter account onto here, but failed. It posted all encripted so I deleted it. Sorry.
She favorited my humerous post to her about using Penguin Cold Caps. She's a courageous young woman fighting a rare form of leukemia who has been writing about her experience in a fascinating column in the NY Times entitled "Life Interupted". She writes beautifully and is well worth reading. Go to the New York Times website and put "Life Interupted" into the search box and you will find it.
I first heard about her in an interview on NPR and she is soon to go on one of the morning shows.
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Wow, wouldn't it be great if she mentioned hearing about cold cap therapy in her interview?
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Hi everyone. It's been a while since I've been on here. I'm 6 weeks,2 days PFC. As of early last week I suddenly started HEAVILY shedding. Has anyone experienced this? When will it stop? At this rate i could be bald in a couple months!!! HELP!
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Hi everyone. It's been a while since I've been on here. I'm 6 weeks,2 days PFC. As of early last week I suddenly started HEAVILY shedding. Has anyone experienced this? When will it stop? At this rate i could be bald in a couple months!!! HELP!
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Hi everyone. It's been a while since I've been on here. I'm 6 weeks,2 days PFC. As of early last week I suddenly started HEAVILY shedding. Has anyone experienced this? When will it stop? At this rate i could be bald in a couple months!!! HELP!
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Hbb,
I am 18.5 pfc the shedding has just begun to slow down. I started washing my hair every two days to keep the scalp cleaner. Hang in there it gets better but takes a good amount of time. At least for me it did. Others have said their shedding stopped long before mine, I hope you are as lucky.0 -
Hbb,
I am 18.5 pfc the shedding has just begun to slow down. I started washing my hair every two days to keep the scalp cleaner. Hang in there it gets better but takes a good amount of time. At least for me it did. Others have said their shedding stopped long before mine, I hope you are as lucky.0 -
Hi Catalina:
I've seen a good deal of success with the ppc using dry ice or the freezer/dry ice. The penguin machine isn't great with 50% or more hair loss. I agree with the others, at this point using dry ice or freezer is the best chance of hair retention.
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Hi Catalina:
I've seen a good deal of success with the ppc using dry ice or the freezer/dry ice. The penguin machine isn't great with 50% or more hair loss. I agree with the others, at this point using dry ice or freezer is the best chance of hair retention.
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Anybody do PCC at MD Anderson in Houston? I'm helping a girl who is starting chemo today and now her doctor is telling her the cold caps do not work and she cannot use them.
If anyone knows a doctor at MD Anderson who allows them, please let me know so I can tell this sweet girl and she can be helped. Thanks.0 -
Howard - that is terrible. How can he tell her she CAN'T use them? Ridiculous. So patients apparently can't ice fingers, toes or have ice in their mouth either? I wish I could help...but I can't offer anything other than complete frustration for these doctors and medical staff. Let us know what happens. Saying a prayer it works out for her.....
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So sorry to hear that Howard. Is she cancelling her chemo today in order to find a doc who will allow PCC's?
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Howard - I cancelled my chemo to find a doctor who would allow me to use Cold Caps and ended up switching hospitals too. It was a good decision.
hbb - I started shedding heavily right after my final chemo also. I am 11 weeks PFC now and am still shedding, but not as much. I still have complete coverage which makes me happy, but a lot of my hair seems to have broken off with the result that the ends where it hangs to my shoulders is getting thin and sparse. I am attributing it to the fact that I lighten my hair and it feels dry and brittle as I have not been able to condition it as I ordinarily would. I also made the bad mistake of lightening the roots six days before starting chemo foolishly thinking I could get away with doing so, and may have weakened the folicles.
I do have new little hairs growing which are about half an inch long and I can clearly see that my unbleached roots are about 2 and 1/2 inches long so my hair kept growing throughout chemo. I can see that some have lost their blonde ends which is why I know I have had breakage.
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Howard, I switched MOs when my first one would not allow the caps - based only on the statement that "they don't work." After my success, my current MO now tells all of her BC patients about the caps. I hope that your friend was able to find another, more enlightened MO.
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Howard, Did you see this doctor? You have your hair, can you talk to him? I don't see how he can stop her anyway. She should tell him she will take her thousands of dollars worth of treatment elsewhere.
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Howard, my surgeon used to be at MD Anderson; this person's doctor should contact Eileen Consorti, MD, at Alta Bates in Berkeley. She can absolutely vouch for my PCC experience (and now other women's as well). I used to be a regular topic at tumor board, apparently.
More to the point, she should cancel chemo and find a new doctor, and new medical center. Even at an esteemed center like MD Anderson, people can get stuck in their ways and fail to be open to new innovations. Somebody who is not willing to treat their patient as a whole person, with dignity intact, and support all other aspects of their wellness, is not somebody who should get the business. Unfortunately, us cancer patients remain a lucrative lot. Therefore, we should make our needs and demands known by walking to other caregivers.
Susan
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I'm new on this subject.... I regret I found this topic too late - my wife is starting chemo day after tomorrow... we won't have time to order caps. We don't won't to postpone chemo since her stage is worrying.. (between III and IV). And we'll need 5 of the caps, correct? Money is a big issue for us as well.. Does it make sense to start using cold caps from 2-nd treatment? She'll be getting 4 x AC biweekly. Is there a way to use one cap only and re-fill it with pieces of dry ice instead of that gel pack - will that work?
On the other hand, we're trying to convince ourselves that loss of hair due to inability to use cold caps is not worst thing in the world... Most people don't use them and make it. How soon har is expected to grow back? (Maybe that was an inappropriate question for people who use cold caps?).
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SccS, If you did decide to order Penguin cold caps, you could actually get them delivered fairly quickly by calling Geralyn and using one day shipping. You would not have much luck refilling any type of cap with ice. As far as using the caps from the second treatment on, she would lose her hair, but it would start growing back right away, not what you have in mind I'm sure.
I wish I had the resources to help every women who wants to save her hair and can't afford it. I cannot tell you how much keeping my hair helped me mentally get through all of this.
Good luck.
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We live in Brooklyn, NY. All of NYC are would be covered. Anyone here can lend us their cold caps? Also, we don't know yet how treatment staff would react to it... Another thing is - what are chances of catching a cold or something from cooling head for hours - is that something to be aware of?
Her cancer is HER2 negative. They suspect one metastasis area close to trachea area, the rest are assumptions due to 8 out of 16 lymph nodes having "macrometastasis". She received Taxol before surgery and that caused about 40% of her hair to come out. Now she's facing AC to start tomorrow.... I don't know how come we didn't find about cold caps earlier..... If we'd buy any, that would be Elastogels as least expensive.... How many do we need as MINIMUM? 3? Anyone in NYC ??
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SccS -I used Cold Caps in NYC this summer at NY Hospital's Breast Center, but I rented them from Penguin which ships quickly. I went there because Sloan Kettering wouldn't allow me to use them - not because of any medical reasons. It just didn't want the extra trouble of having helpers changing caps, etc.
Penguin Caps are expensive. I paid about $650 a month to rent 14 of them. They are less if two people share them. Penguin only rents so no one has them for sale. I'd lend them in a hearbeat if I had been able to buy them. Elastgel users seem to post that they use 4 - 6 and refreeze them with dry ice between using each one.
Honestly, I am sorry to say this as I do understand how your wife feels because we all desperately want to keep our hair; however, I think it's too late to start with them if chemo is starting tomorrow. Begining after the first session will not prevent further loss as the chemicals will have already hit the follicles and done their damage. I was told by Sloan Kettering that I would be completely bald two weeks after my first round of Taxotere/Cytoxane. It works that fast.
If your wife has already lost 40% to Taxol, she would probably lose a percentage more with cold caps. It's impossible to tell how much as it varies with each woman. I've lost easily 35%, although I still have full coverage. It's broken off as well as fallen out, so the longer ends have gotten sparce. I lightened/bleached my hair, so it was somewhat damaged to start with.
Hard as it seems, at this point it might be better for her to cut her hair short and wait for it to come back in.
I wish her well. None of this is easy. She's fortunate to have you to support her. You are clearly a good guy. Best wishes to you too.
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SccS -I used Cold Caps in NYC this summer at NY Hospital's Breast Center, but I rented them from Penguin which ships quickly. I went there because Sloan Kettering wouldn't allow me to use them - not because of any medical reasons. It just didn't want the extra trouble of having helpers changing caps, etc.
Penguin Caps are expensive. I paid about $650 a month to rent them. They are less if two people share them. Penguin only rents so no one has them for sale. I'd lend them in a hearbeat if I had been able to buy them. I had 14. Elastogel users seem to post that they use 4 to 6 which they refreeze using dry ice..
Honestly, I am sorry to say this as I do understand how your wife feels because we all desperately want to keep our hair; however, I think it's too late to start with them if chemo is starting tomorrow. Begining after the first session will not prevent further loss as the chemicals will have already hit the follicles and done their damage. I was told by Sloan Kettering that I would be completely bald two weeks after my first round of Taxotere/Cytoxane. It works that fast.
If your wife has already lost 40% to Taxol, she would probably lose a percentage more with cold caps. It's impossible to tell how much as it varies with each woman. I've lost easily 35%, although I still have full coverage. It's broken off as well as fallen out, so the longer ends have gotten sparce. I lightened/bleached my hair, so it was somewhat damaged to start with.
Hard as it seems, at this point it might be better for her to cut her hair short and wait for it to come back in.
I wish her well. None of this is easy. She's fortunate to have you to support her. You are clearly a good guy. Best wishes to you too.
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Well the only way we could do it is to postpond chemo for 1 week. This is doable but it's kind of stressfull too, to reshedule all that...
At this point any decision is better that no decision because we're stuck not being sure what to do. So you may be right about not pushing this issue in our case... Correction: she actually lost about 25-30 % of her her, not 40%. It became thinner over course of 3 months on Taxol weekly, still looks fine and she's not wearing a wig yet... She's been off chemo for 2 months while having mastectomy. Now her hair almost stopped falling out. And tomorrow she's shceduled to start even more agressive AC chemo. We're doing everything we can to try to minimize all the bad things, therefore we feel soooooo upset that we found out about cold caps so late.... It feels like a failure... Some people say that its' not as effective for AC. Is that true? We still can't decide on whether to try to arrange it.... I called treatment staff, they said they don't think it's right to use the caps but they won't stop us if we want so. Her oncologist is not available today to ask if she wouldn't be mind.
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