Cold Caps Users Past and Present, to Save Hair
Comments
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Hortense
I bought a shampoo from my local organic market w no sulfates and oh balanced should I get nioxin?? Which one. I start Monday.
Trying to be prepared. Thx0 -
Shasha - Your organic shampoo is perfect. It's exactly what you need through treatment. You are set!
I used Nioxin long after my last chemo treatment. It is not organic and does contains chemicals we are encouraged to avoid. The reason I got it was I had months of build up on my scalp and hair that needed a bit of extra help to be removed. My hair never seemed completely clean and looked a bit limp even after washing. I was still having to treat me hair delicately and could only pat shampoo through my hair at that time, so it probably just wasn't getting properly cleaned.
I had read that Nioxin was very good at cleansing and that it also had a formula for thinning hair that made it look fuller. That combination sounded perfect for me as I was still shedding and my hair had thinned a good deal. It worked beautifully. Its minty sensation left my scalp tingling and got my hair very clean. It made me realize I had a lot more hair and volume which was a lovely surprise.
I am finding that now that I am able to wash my hair more normally by gently massaging my scalp and hair I can use organic shampoos to get both clean. I loved Nioxin with its slightly minty smell, but because of some of its ingredients, I will not be using it regularly.
Good luck with your chemo. Take care of yourself, get lots of rest when you feel you need it and do your best to eat healthfully even when your taste buds desert you.
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Hi all - I am one week past my 2nd chemo (TCX4) and am continuing to shed pretty heavily. My caps were much colder this second time around (the first time they never reached -32degrees, my recommended temp) and some were in the mid -20's (UCSF freezers) . But this time they were all at least -32.
So far, most shedding has been around the nape in back and along sides. I have long very thick hair ( at least I used too) so I do use the gel bands. But tonight for the first time I noticed a bald spot on top, towards the front. I can cover it by adjusting my part, but....YIKES! I am very worried now. This seems excessive and I still have 2 more chemo sessions to go. Is this normal?
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Ecarol, hang in there! My heaviest shedding was the same time and areas you mention...finally slowed down a few days before tx3...still okay today 3 days after, so we'll see. I used cool air with my diffuser on the blow dryer after washing today and felt like I still had a lot of hair in spite of where I know the losses are! I had a tiny patch at my widows peak that got frost nip...many baby hairs are already growing in quickly....I'd say tobe sure to put gauze over that thin area next time and just keep an eye on it for new growth...it will come back. Hopefully with the colder caps this time, you won't see anything that dramatic with future sheds...you're halfway there!!!
Found a great solution for my dreaded shampoo day...I had been diluting with a little water in a small bowl and try to scoop onto my hair but felt like I could never reach all my scalp....so I bought a squirt bottle like they use to apply color, snipped the tip so it was a little wider, it was so easy to mix up the shampoo and water by shaking the bottle and the nozzle allowed me together the shampoo everywhere I needed to. My hair finally felt clean all over! Did the same thing to mix the conditioner, but only squirted on the ends. Hope this might help someone!0 -
Ok guys thanks for your support. Getting ready for tomorrow
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Shasha, good luck tomorrow! I hope everything goes more smoothly than your weird chemo pharmacy to-do.
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It will. I'm focused again. And positive. Thanks for all your support. And since I've been focusing on the cold caps. Instead of chemo. It's been a lot better.
Good luck to everyone whether you're beginning middle or ending0 -
Forest,
I used the Elasto Gels. Be sure you only wear each cap for 15-20 minutes max. Also, you have to allow about 10 minutes of defrosting for the first wearing of each cap, as they are stiff when first used out of the dry ice. Thereafter, for the second wearing of each, etc,. no need to defrost. They won't have time (most likely) to get as frozen and stiff once you begin the rotation. Be sure to push the cap down very securely on your head. I had a bald spot at the crown becuase I did not do this my first treatment. Just squish the cap down onto your head and pull the strap tight.
I also put a knit cap over the elasto gel to hold the cold in.
I lost about a third of my hair, but did not have to use a wig or hair piece. I believe I lost more hair than I should have because I wore the caps too long (closer to 30 minutes) each time during my first round.
Best of luck to you.
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I just got back from my first infusion tch. I flunked led cold caps. It hurt too much I thought I was all set but I just could take it at all. I really admire all of you who did it and are planning.it best of luck and thank you for being so supportive
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I just got back from my first infusion tch. I flunked the cold caps. It hurt too much I thought I was all set but I just could take it at all. I really admire all of you who did it and are planning.it best of luck and thank you for being so supportive
now I have to get a wig.0 -
So sorry to hear that, Shasha - I know how much you went through to get things set up. I hope the rest of your treatment goes smoothly. Just wondering if you wore them throughout or did you stop after the first one? Maybe PCC would recommend a different temperature or something if you were able to stick out the first round??? Either way, all the best to you!!!
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I did 20 min then 20 the second 20 was really hard. The first 30 is w chemo. My head was hurting my husband spoke to the rep. It was too much for me I just couldn't do it.
I'm usually very tough. I was surprised at myself. Thanks for asking though0 -
I've been reading this thread for a while, had surgery last week, and since I'm getting closer to meeting with my MO to talk about chemo I've been thinking more seriously about using the cold caps to save my hair.
Doe anyone have an idea how much they/the whole process costs? Thanks!
~Deirdre0 -
Welcome Speedy! It will vary depending on which chemo you have. You rent them and some chemos take longer (more weeks) to administer. Contact the PCC rep and they can break it down for you. Do you have any idea what chemo may be recommended for you? Also, you may want to do your homework and bring some studies with you. Many MO's are not informed about cold caps and don't know the research about them. Many will not be supportive of a patient using them based on very old or inaccurate information. Good luck..I hope you are recovering from surgery OK.
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Shasha, I'm so sorry the cold caps were too painful for you. It's funny, the second cap was the worst for me each time too - I wonder why that is. After that my head was frozen and I didn't feel the cold so much. Well, you gave it a try. I hope you get through the rest of your treatments smoothly with minimal side effects.
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Thank you. I was so determined. and so surprised. Now I have to find a wig asap it falls.
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penguin asked for $600 deposit plus $500 rental first month then additional $120 per month this is approx because of the conversion from British pounds. Also you need a facility with a special freezer or take coolers with dry ice. Good luck
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Thank you for the info! I don't know what chemo they will be recommending for me and I know the cold caps work better with some regimens than others. I just haven't gotten that far yet
mdg~I read your blog this weekend for the first time and absolutely love your honesty, your approach to life, and to fighting your cancer. We have traveled many similar roads in our lives and it was wonderful to read!
Shasha~ thank you for the #s! Sorry they it didn't work for you. Hope the rest of treatment goes smoothly and quickly for you!0 -
Shasha - I am so very sorry they didn't work out for you. They are cold and everyone's toleration level is different. I sincerely hope all goes well for you throughout your chemo and that you soon will be on the road to recovery. Chemo will take a lot out of you, but eventually you will start feeling better and like your old self.
speedy4 - I had four rounds of T/C spaced three weeks apart - I started May 8th & ended July 19th. The cost of my caps from Penguin, plus some gel head bands to cover the base of my head below the caps because I have a big head, ran about $1500 plus a deposit which was returned after the caps were sent back to them. The caps have to be charged on a Master Card or Visa and are billed in British pounds. At current rates I believe the caps would run $530 a month, and the gel bands $48.50. Using www.poundstodollars.co.uk/ my bill today would have been $1426.83
My invoice looked like this:
From 2nd May – 1st June
Rental £350.00
Headbands £ 32.00
From 2nd June – 1st July
Rental £350.00
Headbands £ 32.00
From 2nd July - 16th July
Rental £161.14
Headbands £ 16.64
Total £941.78
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Thank you all. I'm making appoinments for wigs...hate it but that's what it is. I'm feeling ok after yesterday. Getting Neulasta tomorrow and will see.
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hope49 - thank you for your encouragement. I hope I stop shedding next week before 3rd chemo as you did! My hair's looking mighty scary at this point! At least to me. Weird to have thin hair with patches in various places, after a lifetime of super thick and curly. I'm about to do the dreaded shampoo - love your tips on the squirt bottle - will try that too.
One of the side perks to the caps, and I think someone else mentioned it above - is that it's keeping me distracted and busy - really throughout treatment. I have to say that it does help to have another focus, even though at first all the caps rules and specifications can be overwhelming.If I can just hang on to my remaining hairs it wil be worth it.
Hope everyone is having a great, and side-effect-free day!
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Shasha - sorry they didn't work for you. Hortense - you are a blessing! Hi Ecarol - I had first round of chemo yesterday with cold caps - I think the cold helped distract me from watching the needles and felt ok. I hired a penguin rep to help for the first session, and she was well worth it - changing the caps and checking the temperature. I paid $1200 plus deposit for caps/headbands that need to be returned at end of rental period - fees depend on number of months/use. I saw a woman today @ round 4 using penguin caps and she had pigtails! Hoping for hair, but have a wig too - esp. for a public appearance in June - the wig is already styled.
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I am 7 weeks PFC and in the middle of rads. I continue to shed and my hair is very thin . I too always had thick thick long hair. I keep looking ahead to 6-12 months down the road where hopefully alot will have begun to fill in and possibly have 4-6 inches of growth. I plan to trim the long scraggly pieces as I go and even though it is shorter, it will hopefully be fuller. My pic was at the end of chemo and it is much thinner now. I guess I was one of the unlucky ones who continues to shed to this day. Hang in there. No wig for me so far!
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Don't get discouraged about PFC shedding...I know I did but look at the pix on my blog...I still had a full head of hair even with continued shedding for a few months PFC. I loved my bobbed haircut that I got 6 months after I finished chemo. My hair looked great eventhough it felt thin at that point to me. No one ever knew I did chemo.....have faith! Also, I did use clip in hair extensions when I went out to fill in the thin hair. That really helped.
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The cold caps unfortunately did not work for me. I've lost 95% of my hair and have two more treatments of T/C to go. I had to run out and purchase a wig in a mad dash right after my second treatment, as my hair started falling out right after day 21 and continues to shed. Fortunately, my tumor is almost gone, and I've done well healthwise. My new "secret hair" looks close enough to my old hair that some people don't even know I've started, much less almost done with my treatments.
Best & Better luck to those using the caps.
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Sorry to hear that LinAnn...the good news is that your tumor is shrinking and that's the most important thing. I know the Adriamycin is tougher on the hair. Sounds like you have a great backup plan and I wish you all the best....continued good health!
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Just finished TC #3-- a long 10 hour day. My hair still looks like hair. So happy. But so tired.
My husband passed a woman in the hall wearing a white cold cap with black straps. He said it looked much more stylish than mine. (Hrmph!) Anyone know what she could have been wearing?
Oh, and completely ignored the nurse that told me I was risking brain cancer to protect my hair... Good thing I know better...
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Melibt-my cold caps are white-penquin caps-I think my rep said they were from the factory & I am using a consultant who helped a woman with the blue caps just before me. I didnt feel stylish in anyway! Not much different, I think. Sorry you had to run into a nurse who is clueless about the the data...I have found so much love and support out there from the medical community, it has been amazing. So glad you ignored her! You are doing what you need to do to beat the cancer and survive it on your terms. It is not fair to judge from the other side. You made through #3, how awesome!!!! I have number 2 on Monday! (HUG) to you!
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melibt-grex1-What hospital/clinic are you at? I have recently seen white Penguin caps. They looked smaller and defintely weighed less, which means, they don't contain as much gel as the blue caps and probably are not as effective. Every, and I do mean every, woman using the caps should also be using the gel headbands. If they are not used you will lose hair around the temples and nape of neck areas. This is not something the Penguin company or it's representatives will tell you. The representatives are not trained and have little, if any experience. There are literally only a handful of experienced technicians of which I'm one. I've changed over 2000 caps at this point and felt the difference in the weight of the white cap and noticed it seemed smaller. If you have any questions about haircare etc. look on my website http://penguincoldcap.net/ If you can't find an answer there send me a private message. I would be happy to help.
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grex1- Interesting that the white caps are Penguin. My husband thought they looked like they had a little better coverage down the back. I would be lying if I said the nurses words didn't bother me. Mostly by her audacity to speak as she was plugging in my taxotere--with heavy implications that my priorities are messed up--and by her ignorance. Her words: "Would you rather keep your hair or have brain cancer?" Well clearly, as I sat there with my cap on my head, I preferred to keep my hair. Ugh. (Sorry. Clearly I needed to get this out of my system a little more...) Best of luck with treatment number 2. I hope the hours fly by quickly!
makingway- I'm at Stanford Cancer Center. My oncologist has been very supportive, but in general, I feel a bit of an anomaly. They are a bit more progressive on this front at UCSF, running trials with cold caps and dignicaps. I do wish I had known about the gelbands. I looked into it after our exchange of messages but felt like I couldn't make it happen quickly enough for the next round and, in the end, felt like damage had already been done. My hair does cover the problem areas--unless a strong wind blows... thankfully, in northern CA, we haven't had many windy days lately. I am wondering though if the gelbands might help things start to grow in sooner if I use them for the last round. Do they go under the cap or over? And in any way does the added bulk prevent cap/scap contact elsewhere? Thank you so much for offering your support! As we have been going through this, it has felt a bit more like an art than a science. So it's nice to have someone available with so much experience.
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