Cold Caps Users Past and Present, to Save Hair
Comments
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Excellent post Hortense!
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Thank you both.
makingway - I just went back to look for your article on cold caps and hair loss and found it on page 249 www.medscape.com/viewarticle/7... I signed up for Medscape and read it. It was fascinating. Thank you for posting it. I am posting its introduction here and put its final sentence in italics. The rest can be found on the website.
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Abstract and Introduction
Abstract
Background: This article provides an overview of the incidence and severity, presentation and impact of chemotherapy-induced alopecia (CIA), one of the most common and distressing side effects of cancer therapy. Furthermore, prevention of CIA by scalp cooling is described, as well as suggestions for improvement of scalp cooling application and clinical research approaches.
Methods: This article focuses on the availability of options to treat CIA and on scalp cooling in particular. It presents an overview of 58 scalp cooling publications and three personal communications, describing its working mechanism, determinants of success rates, side effects and controversies.
Results: CIA occurs in many chemotherapy regimens and is nearly always reversible. Up to now, scalp cooling is by far the best method to reduce CIA. Concerns about the protection of malignant cells in the scalp skin by scalp cooling have been proven to be exaggerated. The majority of patients tolerate scalp cooling very well. Scalp cooling is cost-effective when compared with purchasing wigs and other head covers. A promising method for objective research on CIA is now used in studies to further improve the method of scalp cooling – that is, cooling times and temperatures.
Conclusion: Scalp cooling is effective but not for all chemotherapy patients. Further psychological, clinical and biophysical research is needed to identify the determinants of success. Scalp cooling should be available in every hospital, and every suitable patient should be given the opportunity, after being well informed by their doctor or nurse, to choose for scalp cooling.www.medscape.com/viewarticle/7...
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Hi everyone,
Cold Caps ordered this morning and we are to receive them next Tuesday. I start chemo the following Thursday. We are now looking to purchase a second ice chest. I found them online at Target and Walmart.0 -
Go Rhonda go! We are here to walk you through it. It will be OK! Hugs!
There are a few other gals that started last week so you have a few others going through this with you.
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Glad to hear that, Rhonda! I just started with them last week...looking forward to sharing our success stories!
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We got the other Ice chest at Walmart for $24, which I thought was a good price as well as all the pharmaceutical needs. I bought Nourish shampoo at Trader Joes and bought chemo snacks while I was there too! I believe my DH has taken care of everything else so we are ready to get the party started!
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Rhonda,
Good luck with everything tomorrow...stay warm and hydrated and I'll be thinking of you!! After the first 10 mins of cold, it's a piece of cake
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mdg, hortense - very well put. Another study they should do is the rates of depression, activity levels, and so forth over those who use the cold caps and those who don't.
Rhonda, I'm glad you're doing it. Good luck tomorrow! Wishing you minimal SEs and resilient hair follicles.
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I'm thinking of doing cold pacs. How many women from Illinois used cold pacs and what did your mo say. I mentioned it to my Bs and he said no. My hospital never heard of them. I want to know how cold does it actually feel??? I don't like the cold. What can it be compared too? If I put an ice pack on my head is it that cold? Will I get a headache.
Is there any one here that didn't think it was worth it? How many women did lose most of there hair with the cold pacs???
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Good for you Rhonda2 !!! Follow the protocol and you will do well. There will be times of doubt when you are shedding and you haven't been able to wash or style your hair the way you are accustomed to normally so that your hair looks awful, please try your best not to worry or fret on those bad hair days. We all have had them.
Just concentrate on taking good care of yourself during your treatments and before you know it you will be done with chemo and can get back to your life. Radiation, if you need it, is easy and not nearly as tiring or debilitating as chemo.
I am almost six months past my last chemo and while my hair is thinner in volume, it looks fine after washing and blow drying. I look like myself when I spot my reflection somewhere, which is so heartening. My sick feeling chemo days are a fast fading memory.
I am constantly amazed that I still have my hair, and so grateful to Penguin Cold Caps for making it possible for me to keep it. I send my best wishes that they work well for you too!
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chgogemini - Cold cap therapy, also called scalp cooling, does work and has been widely used in Europe for the last ten years. Unfortunately many doctors and nurses over here have not heard about it, though as more American clinical studies get completed and published they will.
I have seen ladies from Illinois on this forum who have used them, maybe one will chime in.
Personally, I felt strongly enough about wanting to keep my hair, once I discovered that it was both possible and safe, that I decided to switch doctors and hospitals to be able to use cold caps. There are others on here who have also switched to use them. Clearly, the nation's oncologists need to catch up with the times, hair saving-wise.
For information about cold cap therapy go to these two sites:
www.rapunzelproject.org
www.www.msc-worldwide.com/
Quite a few women have had to educate their doctors and hospitals about cold caps in order to be the first ones to use them at their centers. Some have even asked the Rapunzel Project to donate freezers to their hospitals for storing cold caps. My own hospital in NY had one donated to it. It has had over forty women use cold caps since then.
Cold caps are VERY cold, colder than you can imagine. Colder than an ice-pac held to your head. The first five minutes or so are not fun at all, but as soon as the scalp chills down close to freezing they become bearably cold. They may not be for everybody. I took two Tylenol ahead of time which helped. Some people do get headaches from them. I did not.
Those of us who have used them found that they do work. We felt the tradeoff of the cold for a few hours before, during and after our chemo treatments was worth it to save our hair. We did not want to go bald as we would have done. Some of us experienced a thinning of overall volume of hair due to shedding of the oldest and weakest hair strands, but none to my knowledge experienced failure.
Read through both websites and some of the posts on this thread to learn more, as well as the Cold Caps Usage Tips thread which you can find by using the Search button.
Lastly, most of us here used Penguin Cold Caps as they seem to be the most consistantly successful brand. They have to be rented as they are not for sale and they are not covered by insurance yet, though in some other countries they are. Their cost runs about $560 a month. For four rounds of chemo spaced three weeks a part I paid about $1500 for the rental of the cold caps plus brow bands which are used to cover any part the caps don't quite cover. FedEx two day shipping costs ran about $60 each way from a US center in the midwest.
You will need to have a helper or two to change the caps every twenty minutes to maintain the correct temperature, plus some supplies which include an electric blanket to wrap up in, but using cold caps to save your hair is doable.
Best wishes.
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HELLO LADIES .... MY MO WAS CONCERNED ABOUT THE RISK OF BRAIN METS WITH COLD CAPS. I HAVE FOUND SOME REALLY GOOD RESEARCH ARTICLES THAT SHOW THAT COLD CAPS DO NOT INCREASE INCIDENCE OF BRAIN METS.. OF COURSE THE INFORMATION IS A BIT TECHNICAL. HOWEVER I WILL TAKE THE INFO TO HER TOMMORRO. IF SHE REMAINS CONCERNED THEN I WILL ACCEPT WHAT SHE SAYS. I HAD A VERY CLOSE FRIEND WHO RECENTLY DIED FROM BRAIN METS. MY QUESTION TODAY IS IF ELASTO-GEL CAPS ARE USED CAN'T I CHANGE THEM MYSELF? I WILL HAVE A PORT. I HAVE ORDERED JUST ONE TO EXPERIMENT WITH.
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I am so sorry for your loss of your friend.
The concern most doctors express is for scalp mets which clinical trials have shown not to be a problem. Cold Caps cool the scalp, not the brain which is shielded from their cold by the thickness of skull.
I would like to suggest that you ask your doctor to call NY Hospital's Beast Center and speak to its Director as it has had over 40 women use cold caps there so far, and has been running a non-clinical trial tracking the results. I am certain your doctor's questions about the risk of brain mets and anything else can be quickly and easily answered that way. I sent you its contact information by private forum message.
You will be not able to handle the caps by yourself. You definitely will need a helper - volunteer or hired. You will be hooked up to an IV and be asked to sit quietly during your infusions. You will be getting quite a few meds that may make you woozy - I was.
You will not be allowed to scurry around doing everything needed to get each change of caps ready before, during and after your treatments. Each cap needs to be kneaded with two hands to soften it enough to go on your head, its temp will need to be checked and possibly adjusted by being put on dry ice a bit, etc. It is not a simple process. It takes a good deal of organization and hard work to be done right or it will fail.
Cold Cap Therapy has a strict and time tested protocol that has to be followed to be successful.Most successful users on here have used Penguin Cold Caps as they seem to have a better rate of success than Elastogels or any other type so far. I am sure others with more experience will respond about them when they see your post.
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From my personal experience, the first round was very challenging. I did not take Tylenol and had the ice headaches for the first couple of minutes with each cap change. I got light headed and felt nauseous during the first treatment. My body was fighting both the caps and chemo treatment. I did not think I could continue with the cold caps - it was unbearable. After reading this blog, I asked onc about Tylenol for headaches. He said it was fine and I took two before each treatment. My body seemed to adjust and each treatment thereafter was better. It really is a long day and you have to be committed to the protocol - there are no shortcuts!
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Tylenol does nothing for me but I took alleve and that helped a LOT with the cold. Someone named Arlene used the elastogels successfully, but she followed the PCC protocol. PCC is the safer bet but I believe they are more expensive. I haven't seen anyone on this thread who tried and failed, but maybe your question will encourage others to chime in. I think they work if you follow the protocol. i have lost a LOT of hair. But I still have a lot left, well within normal range of coverage.
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Hey Everyone,
Well, I'm 1 week and 2 days past my first TC treatment. I'm following all of the PCC rules and regs. My hair wich usually runs normal to dry is still SO oily it's making me crazy. I swear 5 minutes after I wash it it looks gross again. I know it's supposed to become more dry due to the cocktail, but.... until then..... I jsut wait. LOL! It will be interesting to see if I'm in the percentage of people who these work well for. 5ish more days.... until it all starts to shed. Hopefully jsut some shedding and not balding. LOL! Only time will tell.
Hope y'all are doing well tonight!!! Big hugs from me, Deb
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I think you will be in that percentage, Deb! And don't worry, that oily hair will most certainly dry out, but I can't remember how long it takes.
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Lauren,
I can't wait!! It's horribly gross and feels discusting. Ha ha ha! It feels so bad that every now and then I have a fleeting thought that wearing a wig might be better. LOL! Don't worry.... those thoughts only last for a second or two.
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deb i felt the same way....my hair was so oily the first couple of weeks I thought there was no way my hair would ever be "dry", even with the effects of chemo. Fast forward to now, I'm in between my 3rd and 4th sessions, I can tell you that after 7 days I can actually contemplate shampooing it. Also, when your hair starts to shed (mine was right around day 16-17) don't panic! It will happen but you will still have a ton of hair left. Keep the faith
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Girls the oily hair goes away and stays away! I am 1 1/2 years post chemo and I still only have to wash my hair twice a week.....can you believe that??? I remember it being oily for about a month or so and then it slowly started to get dryer. It will dry out.....until then remember "a bad hair day is better than a no hair day!"
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HAVE BEEN DOING LOTS OF RESEARCH AND FINDING RESULTS WITH COLD CAP NOT SO GOOD WITH AC CHEMO. ANYONE USED COLD CAPS WITH AC?
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This clinical trial had 10 users with the AC regimen. 2 had excellent success, 4 moderate, 2 good and 2 poor. An important point to bear in mind is the temperature the caps were used at;between -5° and -15° Celsius. Those temperatures are much higher than the temperatures used now which are between -28° and -32° Celsius. I think they would have had better success using these temperatures. I met a woman who was on this regimen and after 4 treatments of AC and 2 of Taxol still had her hair! http://www.abstracts2view.com/sabcs09/viewp.php?nu=p5040
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Hi gals ~
I am two weeks past final chemo treatment. How soon can I cover this gray? It's over an inch and I am struggling to cover with a stick much longer - its looking awful!0 -
3 months if going darker using a vegetable based dye. 6 months if lightening.
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Forrest - I had my chemo tx at HUP in Philadelphia. While I chose not to use cold caps, I did talk to the nurses about them. They reported that they had a few women use the caps. They had no issue with patients using the cold caps. My MO was not opposed to me using them as well. If your center is not willing to work with you, you might want to call HUP.
On the other hand, if you decide not to use the cold caps keep in mind that plenty of women do just fine without hair for a few months. My chemo was AC followed by Taxol. My hair began to fall out after my second tx. My husband shaved my head at my request. In fact, its been one year ago this weekend that we shaved my head. It was okay. I had a cute wig that was inexpensive and quite comfortable for going to work. I got so many complements with that silly wig. No one knew that I was bald unless I told them. Around the house I wore a little cap, a scarf or went without. Eventually my hair grew back and I put my wig away by July. The hair that returned was grey (I'm 57), but very soft and healthy.
I decided against using the cold caps because it seemed like too much trouble and expense. I didn't want to add any stress to an already stressful event. For me, my chemo days were spent quietly at the chemo center. I took the train by myself for my MO checkup and blood work. My husband joined me later, often with a light lunch or refreshments during the treatment itself. I didn't want any strangers there to help and I didn't want my husband to take that much time off from work. I also didn't want to worry about following the right procedures and I didn't want the discomfort.
So, if cold caps are your choice, you might want to check out either HUP, Fox Chase, or Jefferson. I'm sure one of these centers would be happy to accommodate your wishes. I would recommend HUP since I received excellent care there.
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Just want to say THANK YOU to everyone for posting your experiences and for your continuing to follow this discussion post tx...I was getting anxious today even though I'm only a week past tx1 that maybe it won't work, so I turned to the board for inspiration. All better now
. I look forwards to the day when I can help someone else with my success story!0 -
Does insurance cover cold caps? if not, approximately how much do they cost? Where can you get them? Does the facility need to have special freezers to allow this? Sorry, I am very new to Breast cancer and chemo.
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Sometimes insurance will give 'partial' reimbursement, but don't count on it. The caps are @ $500.00 a month to rent. Most use them for 3 months. If you need them longer the cost goes down to $75.00 a month. They also ask for a $600.00 deposit which you get back when you return the caps. You don't have to have a biomedical freezer but it's a lot easier if you do. If no freezer is available you have to use dry ice each time-@100 lbs of it.
You can order them here: http://www.msc-worldwide.com/indexusa.html
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new2bs - Welcome! We were all new to BC and its treatments not that long ago. I was diagnosed less than a year ago and there was so much I suddenly needed to know - fast.
Take a few minutes to read through some of the posts above and you will find the answers to your questions in some detail. I have a lengthy post that will help you understand more about using cold caps and where to look for information about them.
Cold Caps do work. Unfortunately they are not covered by insurance and they are costly. Your facility does not need to have a dedicated freezer for cold caps, however the Rapunzel Project might be able to donate one to your's if you decide to use cold caps and you request one. My hospital has a freezer from them.
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hope - they will work!
Stay positive!!!!New2bc-sorry you have to deal with all of this..it is overwhelming for sure. Unfortunatly the caps are costly and insurance does not cover them, but for me they were worth it. I have pix on my blog of my hair before, during and after.
Loafer - I used clairol's Beautiful Collection color (got it at Sally's) about a month PFC. It was not perfect, but it really helped with my out of control roots! Everyone follows the rules a little different...I had to get in touch with my roots at that point. They were crazy and I couldn't stand it anymore!!!
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