Cold Caps Users Past and Present, to Save Hair
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
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My chemo is going to go on for so long that I can't see adding this to my infusion time... I spend enough time in that chair!
but for me the hair loss is a minor side effect compared to some of the others. I know other women are more devastated by hair loss and would jump at the chance to save it.This isn't something that ever came up as part of my treatment options, either... I'm interested in how many people have done it and how it's worked. I know my SIL would sure opt for this if she had known about it! Good luck to all, and Candy, good to hear it's working well for you.
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NatureGirl-Thanks for your thoughts. I leave immediately after my treatment and change the caps on the way home. They are somewhat cumbersome though. I will be getting Taxotere after my FEC treatment and the way my ball rolls I'd be in the 6% that suffer permanent hair loss from taxotere and I am hoping the cold caps will keep this poison away from my follicles,....lol. I hope your treatments are going as best they can and that your side effects are minimal.
Best wishes, Candy
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see what I know -- I thought you had to sit and wait for the cold cap treatment, didn't know you could leave!
And wow, I didn't realize some chemos caused permanent hair loss. That would definitely change my motivation for using the cold caps. Again, I have lots to learn. Good luck with your hair and with your treatment!! 0 -
Hi Candy, Just wondered how your still doing with your cold caps. Iam on day 20 post chemo and I still have my hair but it is shedding quite a bit. When I run my fingers thru it gently and slowly pull the ends I get quite a few strands of hair but no clumps. I still have all my hair and you would never notice. Frank said you know it's working if you still have your hair on day21. It still is freaky waiting to see what will happen! I guess I just need some support since I've only talked to you and Nikole. She is doing really well with the cold caps. She is done with her 5th tx one more to go. She has talked to alot of other women before she started and they all said it works!
I just feel some spots on my head that feel kind of tender and my scalp is peeling on the top of my head. That is where it was the coldest. I wondered if you felt anything on your scalp? And I can't remeber when you said the shedding stopped or slowed down? My 2nd tx is Thursday and I hope I still need my cold caps!!
I pray all is well with you. I know you start taxatere (I think) soon. Just for some reassurance the doctor here in Michigan who did the trials said that the cold caps worked very well with Taxatere and Cytoxin. She also mentioned that with some of the harder dugs that she wants to try keeping the caps on longer than 3 hours afterwards. It might take longer to process other drugs. I might keep them on longer my 2nd time just for the reassurance, if I can take it! Good Luck to you and let me know how your doing.--Geri
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Geralyn--Yes the shedding has slowed down, but I am still losing more strands than normal. My husband and friends tell me that if you didnt know what my hair looked like before you wouldn't notice, but I do. I have been putting my lost hair in a bag and you would think by looking at it that I have lost all my hair...lol. I will send you the pic I took yesterday, day 42. I did give myself a bit of frostbite on my part, and yes my scalp flaked and even somewhat scabbed on my part. Please don't be discouraged by the thinning, I'm sure you will not require a wig. I have been wearing a ventilated rafia cowboy hat just cuz my hair looks like I haven't tended to it in months. If you want to talk, please don't hestitate to call.
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Dear Gg08--I am happy to hear that you are doing great and your journey through this treatment hell is over. I have not lost any eyebrows or eyelashs. My eyebrows that were plucked have not grown back tho. I am using a 'cold band' that wraps around my eyebrows. The bands are MUCH more painful than the caps; however, it is only for the first minute or two that you place them on. I too have lost hair on the other parts of my body, but that's not a bad thing. I will keep my hair situation updated on this post and even if I come out with very thin hair I will be happy.
So how was the ice on your hands and feet? I have thought about using ice during my taxotere but the thought of another freezing place on my body during treatment makes me ill. How long did you use the ice? The caps go on an hour before treatment and for 3 hours after treatment.
Candy
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Gg08--Hello there! About the eyelashes and eyebrows! I haven't tried it but I spoke to a gal who is using Latrisse (Iam not sure if that is how you spell it). She said you need a prescription for it. You put it on your eyelid like mascara. She even puts it on her eyebrows. She is going thru chemo right now and is done with her 5th tx and she said her eyelashes are growing in thick! She even puts it on here eyebrows. My ps doesn't know much about it yet, it is quite new and he likes to wait a while to see how it does. He is going to read up on it and let me know if he will write me a prescription. My onc is not sure either if he wants me to use it during chemo but he never heard of it either. Once I get it I will show it to him. I read on these threads about other women using it too. Check it out. Take Care
Candy-it's nice to hear your still doing good. Hang in there. When do you start Taxatere? I did really well on it if that helps. I know your other tx wasn't so pleasant. I just keep chugging water (lots) for at least the first 5 days after tx. The only Se I had was chemo brain. I got tired easier but was never in bed. I was one of the fortunate ones. I believe it is the water that helped. Hopefully your last tx go better for you! I will pray for that. I will probably call you soon. It's nice talking to you. You can call me too.
I get my 2nd tx tomorrow at 9:00am and I still have my hair! Today is day 21. I think Iam out of the woods and these cold caps are working! I believe God has his hand on this and they are! I would think I would be loosing more hair by now. Take Care and Keep in touch-Geri
About the nails-Frank told me that our nails have 6 layers and that by the time the drugs effect all the layers I will be done with chemo so not to worry about it. Iam getting 4x. You only need 3tx (right?) You should be fine but I can't say for sure. That was coming from Frank.
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Bonnie, I first heard about cold caps by my onc who tried them 10 years ago. They didn't work back then but they where different ones back then. Then I read about ice mits and footies for finger nails and toe nails, or eat posicles or chew on ice for the metal taste in your mouth. I though there is something with the ice!
Before my chemo I read Can-D's thread asking if anyone else is using the Penguin Cold Caps? I was interested so I went on their web site. It is Penguin Cold Caps for hair loss. It sounded to good to be true. I PM'd Can-D and spoke to her and it is working for her. I emailed the company and the inventor called me from London! He is very nice and helpful! He helped me get my caps before my chemo. You rent them for 29.00 a cap and I needed 14 of them. You wear them during your infusion and 3 hours after every treatment. You keep them in the freezer and then put them on dry ice in a cooler and go for your chemo.
Can-d helped me because she told me you need 2 people to help with it, And we were all busy. I drank a quart 1/2 of water per hour so I was busy drinking and peeing and my dh and friend was busy getting the caps ready (right temp) and strapping them on my head!. Chemo went by quick because we were all cracking up, I forgot what I was there for. Well Iam 21 days post chemo and still have all my hair. The inventor said if I had hair in 21 days it was working. I lost some strands but no clumps. My 2nd tx is tomorrow and I told the nurses I would be back either in a wig or with my cooler! Iam bringing the cooler, Yeah!!! I also spoke to another gal who used and she spoke to alot of other woman. I lot of us have done this on our own. There are some hospitals and clinics doing trials on them. I called ACF and asked who is doing a trial and she gave me a local hospital here in Michigan. I called and spoke to the doctor who did the trial and she is excited about it and is doing more trials. She studied this for 3 years. She is trying to get it FDA approved so they can have a national trial. Then more women can find out about this. I spoke to her before I ordered them for myself. I didn't want to blurt anything out till I knew personally that it works but it seems to be. Alot of the women who started tx with me have lost their hair already. The doctor said the results are good with Taxatere and Cytoxin I should keep 90% of my hair. Some drugs are not as good results. You keep your hair but it thins out more but they are studying that right now. It is very promising and I hope more women would find out about this. It makes chemo not as bad if you an look yourself and feel good while you go thru it. I know I prayed about this a long time and asked God to show me a way to keep my hair and I believe He did! And I believe Iam to share it with others!If you have any more questions feel free to ask. Iam sorry to hear that you are waiting for a reaccurance. I beleive in prayer and trusting Our Lord. He is in control. I pray you never have to go thru any of these tx again. Some reaccurrances are 30 years later. My onc just told me about a woman in her 80's who had a reaccurrance 30 years later!! I fugured if that was me I would be in my 80's. I'll take 30 years!!! (actually I want 0 years!) We all do. I prayer for a cure for everybody. this is such a crazy disease. Everyone is so different and nobody can tell you anything!! Except all of us smart women!!!
Gott run, Take Care--Geri
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Can-D--What is a good time to call you. I don't know the time difference. Iam in Michigan and right now it is 2:00 am. Oh sh-t I should try to get some sleep. My chemo is at 9:00am. You are in Missouri- right? Let me know. I will be home tomorrow by 2:00p.m. and I plan on being home the rest of the night. You can call me too. I'd love to talk to you again.--Geri0
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Bonnie, Iam sorry, I didn't mean that you were waiting for a reacuurance. I said it wrong. The docs are. You on the other hand sound very upbeat and positive. And an inspiration to all. and to take an interest in the cold caps either for yourself or others is great! Knowing you know Our Lord is the best medicine. He is The Healer and Comforter. Iam in His peace and you sound like you are too! Isn't it great not to have to worry about everything and just give it to Him, I love Him.
I also wanted to mention that if anyone finds a clinic or doctor who is trying the cold caps they can rent them from them. It is alot cheaper. Frank said $120.00. Don't quote me because it could be different everywhere. Hopefully more docs will try it. Take Care and God Bless You-Geri
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Hi, all... I'm going to interject something I learned about nail loss yesterday... not to jump in to other conversations but this might help someone... I don't know if this will apply to Taxotere but since it's in the same family as Taxol it might...
I just finished my 4th A/C and start on Taxol in 3 weeks. I mentioned that I noticed about a week ago my nails has stopped growing, and would they fall out? The NP I saw said not likely, but to start immediately on 100mg of B6, twice a day, to help prevent that. So it might be worth mentioning to your dr.to see if it would help with you.
She's an NP that doesn't recommend options like that unless there's empirical proof that it'll help and the science major in me appreciates that and appreciates her input. Not that I don't consider other options, I can lean both ways, but I appreciate strong science.
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Naturegrrl--Thanks for the info. I asked my onc if I could take B-6 ( I read it on this site). He said ok. either B6 or B-12. I don't know the difference between them and I bought B12. Is that ok for the nails or is B6 better? I just started to read all the threads on Natural Girls. it is very interesting. Maybe I should switch to B6 if that's what everyone is taking. Anyways thanks for sharing and have a great day--Geri0
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I don't know what the difference between B6 and 12 would be -- they're different vitamins, obviously, but if your oncologist said either one, then that's probably fine, I'm sure.
I'm just going with the B6 because my NP recommended it. She was empahtic about the dose, too. Anything to lessen chemo side effects of any kind! So much is going on that I can't control -- will take any measures I can to keep some of this stuff as normal as possible!
I've been careful about what I do take because I know some of the OTC things will interfere with chemo (I'm on no large doses of antioxidents, for example) (and no more tofu! I'm one of the crazy people who enjoys tofu... but I guess I'm off that for life?!). Depends on the chemo, I guess, but I don't want to do anything that will cause problems, so I clear everything -- even my herbal teas -- through the NP or oncologist (and truthfully, my NP is more knowledgable about some of the details, not that I don't trust my oncologist -- I've seen what he does for mom and I have a great respect for him). Anyway, that's my approach.
If it makes you feel better to switch, I would... it's not that expensive compared to everything else!
Just make sure to get the 100 mg tablets!Best of luck!
Carol
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NatureGrrl-It is getting so confusing on what to eat or take anymore. And alot depends on what kind of bc you have. Things we thought were good were bad and things I thought were bad are good! Like tofu? I never ate it but it always sounded healthy for you, whats up with that? I'd like to make and add some positve changes to my diet but it is hard to tell anymore what is right for each individual! Right now while on chemo I was told to only take a multi vitamin only. No PLUS anything added while on chemo. My onc did say B-6 or 12 was ok too. But Iam going to double check on the B-12 and make sure I heard him right. Aso no Green tea while on chemo. The inventor of the cold caps told me that and also no caffeine or sugar. That knocks out my pepsi and coffee! Also no deodarant with aluminium it it. ( which is in most of them). I have been trying to drink decaf tea but now I wonder about the herbal teas!!! It is almost impossible to try to do anything right anymore. Iam going to try my best and have things in moderation. If I want coffee, I will drink 1 cup instead of 1 pot! That's all I can do until I get more educated on all of this stuff! I guess I have some learning to do! Until I finish with chemo I will try to stay away from what is bad but my onc really has no diet restriction while on chemo except for the vitamins etc. They actually want you to eat anything to keep your weight up. they don't want you to loose weight. I was hoping I had chemo that makes you loose weight not gain!!!!
Thanks again for the information it is really interesting to learn all of this. I've always ate what I want. I eat pretty healthy but I have my downfalls Like good Italian bread and butter,Saunders hot fudge cream puffs with butter pecan ice cream w/extra fudge! Lucky for me I don't eat them all the time. I cook alot with olive oil and hardly ever fry foods. Lots of fruits and vegetables etc. I've always ate good foods but if I could add or take away something to keep this BC at bay Iam more than willing to try! Thanks again and have a great day!!!--Geri
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Hi All!
NatureGirl-Thanks, I too will talk w/ my onc about the vitamins.
Geri-I hope your second treatment has not been worse than your first. You are half way done with your chemo!!!
Bless all and I will keep you all in my thoughts.
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Hello Can-D!! How are you doing? I've been thinking about you and wondering if you've started the taxotere yet? I hope you have so you can be closer to being done!! I just had my 2nd tx last Thursday. It pretty much went the same as #1. I did have a reaction during infusion Lower back pain) because they start me to fast so they slow it down and give me saline with it. Yeah! More fluids with it, that's fine with me. In fact I asked if I can get saline with it all the time. (it dilutes it) and the nurse said if you want it. so I might ask for it for #3 just to get more fluids in me. It's getting harder to keep up with the drinking!! That's why I think the SE of tx #2 was a little worse than #1. Not to bad but I was more tired and I did get that funky taste in my mouth for the first time, but I didn't eat ice , popsicles and drink as much water either so who knows for sure if that is why. But day 4 and 5 were my tired days and today is day 6 and I feel great. So it hasn't been to bad. Just to reassure for your change to taxotere. But then again everybody is diffferent!
How is your hair? I still have mine. I only wash it once a week but my hair is dry so it doesn't really look bad. I just let it hang. Sometimes I use a scrunchy to tie it back loosly. Iam loosing strands but no clumps!! Actually it slowed down but will probably start shedding again in another week. I just hope that by the time I'm done you still can't tell. It really is amazing to still have our hair at this point. It seems that everyone else has lost their's by now. Even though we have to take extra care right now with it it will be worth it in the end when we don't have to try to grow it out!! Or deal with wigs etc. I hope yours is still hanging on and let me know how you are doing. I could use the support. Last week I woke up every morning and looked at my pillow and said "Thank you God for letting me keep my hair!" I still do!
I hope things are going good for you. Keep in touch and I'll be praying for you too. Take Care--Geri
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Geri- I drank my 8 liters the day I had my #3 tx, but haven't been able to drink much water or liquids since then. Just the thought of drinking water makes me ill feeling. I start Taxotere on #4 and because taxotere is mostly eliminated through faeces and only minimally through urine, I'm not too concerned about all those fliuds as long as I drink enough for my liver to make bile and my bowels are functioning...tmi I know, sorry.
My hair is still hanging in there, but thin. I notice it as does people close to me, but most that didn't know me before can't tell. I do have one bald spot about the size of a nickle right in top of my head in my bang area. I brush hair over it and its not noticable. I think I gave myself frostbite there the first time cuz I had a scab there initially.
I'm so glad to hear that you are feeling great today and having success with the cold caps. Take care.
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Can-D--Looks like we are criss crossing on these threads!! I just posted you on May Chemo! Next time Iam going to just call you!! What is our time difference?
Iam glad to know that taxotere is eliminated thru feces!! Iam so glad!! Sounds crazy but I had a hard time drinking all that water for 5 days. I know it helped with the SE but this round it was harder to drink. Now I will make sure to take a laxitive every day!! I noticed that the BM smells different after chemo. It's awful (TMI) Now I know why!
I lost hair on my hair line around my ear and side burn because my temples were to cold and I stuffed a tissue under the cap on my temple, Oops I pushed it to far!! My scalp also peeled on top and is sensitive, Iam sure from frost burn. That was the coldest part for me.
Iam glad your doing ok and still have your hair. Even if it is thin it will be so much easier to grow out after chemo compared to what some of the ladies go thru. They say that it is worse than loosing your hair. Some take a very long time!! We are very fortunate! Take Care--Geri
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Geri-I am in the Central Time zone. I too gave myself a little frost bite the first time and my part got red, then flaky and itchy. I had one small scab in my bang area that did result in a small bald spot. You are so right about ending this journey with some hair is better than no hair. At least that's what I tell myself to get through. Take care, Candy0
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Hello Can-D and BC sisters. I came across info on the Penguin Cold Caps on the Internet and asked everyone on my Tx team if they had heard of them -- none had. My onc and surgeon have agreed that neoadjuvant therapy would be beneficial in my case and my onc is prescribing 6 cycles of TC. The US telephone number for the company that makes the caps is in Orange County, CA where I live, so I left a message last week. To my surprise, Frank Fronda, the inventor, called me from the UK yesterday evening (it was the wee hours of the AM for him). Their US warehouse is less than 30 minutes from me.
Chemo should begin in a week or so. Because I am single and live alone, I am going to try to find another local woman who needs a helper to put them on and change them during chemo. I appreciate reading about the experience of other women on this thread. If it works for most of us, perhaps we can get the word out and get the FDA to take action.
Best wishes to all of you.
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Hello Lori, Iam so excited that you are trying the cold caps. Frank is great and a real support. Iam using them and I start my 3rd tx of taxatere and cytoxin on this Thursday and I still have all of my hair. It works really well with that chemo! I did loose strands during my 3rd week of each tx but not much and you can't tell.
I feel as though we are a secret society as one of the gals put it! I have tried to share with others but I think they are skeptical. I was too until I talked to a doctor here in Michigan who has been studying them and doing trials for 3 yrs. She is also giving me advice. I also talk to Candy and Nikole who I met on this site who are using them also with sucess. Frank can give you others who will help you with support.
The doctor here in Michigan is submitting papers to try to get it FDA approved so they can do a national trial! Then more hospitals and clinics will have them . Alot of doctors have not researched them either and are skeptical.
Anyways if you have any questions or want to talk then PM me and I would be happy to share! I plan on spreading the word more after I finish all 4 tx and I can say for sure it works. But so far it is and I have no bald spots and Iam 42 days out of 1st tx and 19 out from my 2nd. If you are doing it o your own I would be happy to give you some tips! Good Luck-Geri
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Hi Geri: It's so good to hear of your success with the caps as you are also on the TC regimen. Frank mentioned the Michigan trials. He also sent me the names and telephone numbers of 6 other women who are using or have used them. I'll send you a PM with my contact info and perhaps we can chat sometime. I'd be interested in hearing how many caps it takes to get you through each infusion. I just found out today that my chemo appointments will be 4-5 hours long -- oh brother! If each caps lasts only 20 minutes, that's going to be a lot of caps to rent and haul around. Do your infusions last that long?
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Hi Lori,
Yes Iam sorry to say that Iam there for chemo 4-5 hours. Iam not being infused the whiole time! I did get your PM and I will try to call you. there is so much to go over! Iam so excited for you! One thing about doing the cold caps is that you are very busy during infusions that you forget what your really there for! LOL. I will talk to you soon! Geri
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Where can you purchase the cold cap?
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lissak--Hello! Just google Penguin Cold Caps and go to their web site and you can get all the information there and email them. You will probably hear from Frank the inventor of the caps and he will help you with all of that information. If you have any more questions I'd be happy to help you. Good Luck-Geri
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Lori- I am sorry that you had to join our group but we welcome you and will be there for you. Geri is having great success on her TC regime and Im sure you will too! I dont know if your dosages are the same and the dosage does matter. Unfortunately, I was on a regime with a dosage where I have not been as successful. Thanks to Frank though, I do not have any bald spots, except one small one where I shoved the rag too far into the cap due to the cold; I do have substantial thinning but not enough to wear a wig or head covering. I am on a split regime, FEC-T, and have completed the FEC and one Taxotere. I am hoping now that the harshest is complete I will have more success. My hair was very thick and almost to my waist when I started and I dont think this was a benefit. I cut it to my shoulders after tx #2 and it has been much more manageable. If you want to talk just PM me and I will give you my contact info if Frank nor Geri hasn't already. Best wishes, Candy
p.s. I read your bio and in regard to the genetic testing, I agree that you if deformations in your BRCA genes that a bilateral mastectomy is a good idea, well according to the studies I have read. I don't have my results but it will definitely impact my future course of treatment. Its sux that your insurance won't pay. Luckly mine did and it wasn't as expensive as I though it would be. The lab used was MYRIAD GENETIC LABORATORY (not yelling just copied and pasted) and they tested for both breast and ovarian. The lab billed $3120 but my insurance paid $2964 pursuant to their contractly allowed amount. Just an FYI
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Update: I had my first chemo (TC) yesterday and used the cold caps. Another woman who lives near me whom I met via this website helped me put them on. Since I haven't asked her permission to post about it, I'll just say, she is a true Godsend and is fortunately a stickler for details.
Due to e-mail and telephone problems in the UK, we weren't able to pick them up from Anaheim until the mornging of the chemo. They weren't pre-cooled in a freezer so we had to rely on dry ice in picnic coolers to get them cold. It was hard to get uniform coldness with this method. We were fortunate that we had a laser digital thermostat that tested a specific place you pointed it so my new frend could pick the best caps. Usually the top was cold enough, but not always the sides and back. I could tell that area in front and above my ears and the lower scalpline were getting much less cooling. I could lose hair there
My next cycle is in 3 weeks and, since they will be precooled in my home freezer, hopefully we will get more uniform coldness.
Frank was extremely helpful as was Joyce in Florida. If it weren't for my cold cap friend, they and other women I spoke to who have used them, I would not have been able to try this hopeful method.
I'll keep everyone posted. Also, good thing is that I haven't had any bad SE from chemo. So far, so good! I get a neulasta shot on Monday and am hoping to avoid bone pain.
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Hello Lori--Iam glad to hear that you are trying the cold caps. I read some of your posts and I hope you have the timing right . I put mine on 20 minutes for the first 2 and the 3rd one for 10 minutes then start the infusion and keep the 3rd one on for another 20 minutes and then change them every 30 minutes after that. I hope all went well it get's easier with every tx.
If you have any questions I would be happy to help. My 4th tx is on Thursday. I still have all of my hair. Iam thrilled. I get some strands that come out when I comb it but it doesn't seem any more than normal. Good Luck and let me know how you are doing Geri0 -
Not all treatments make hair fall, but when it will it will, hair are dead cells, and with chemo and radiation to the head there are no more cells, later hair will grow after treatment and usually looks and feels great, it is new hair.
In my hospital I had women that prefer not to have treatments than loose their hair.
I
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I just want to add that the only person I know who used this 15 years ago, had a recurrance..
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