Cold Caps Users Past and Present, to Save Hair
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CVIlleJanine-How big is the area? Is it only one small area or over the entire top of your head? What were the temperatures of the caps when you put them on your head? I ask you this because I helped a woman with her 2nd and 3rd treatments. Her husband had helped her with the caps during her 1st treatment. The result was that she developed a scab on the top of her head and lost a patch of hair in that area. He asked me if I'd come help with her next treatment. I did, and when I couldn't get a reading on the thermometer I realized it couldn't read temperatures low enough. It could only take readings as low as -20 degress celsius. I sent the man to get the proper thermometer, so I could get an accurate reading. He had no idea of the temperature of the caps when he put them on her head...
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The total area is about 3 inches by .75 inch. The blistering only happened near the front of the head- the first inch or so. Where the blistering was is where my hair has come out some. Right now it's pretty easy to cover up since I part my hair on the side. But there are still lots of scabs/layers of the scalp skin that is still coming out. And this area is itchy/sensitive and I'm afraid it will continue to come out. I'm trying to prepare myself for a bald spot there- I'm hoping it won't be too huge.
The area toward the back of my head is not sensitive- it's scabbing but doesn't hurt and doesn't seem to be as severe as the front part. I'm hoping that the back area stays put.
The temps were right at -30 C when we put them on my head. Our thermometer goes to -50. I did have a weird 'wonky' cap about half way through treatment. My husband and sister were having problems kneading it- it wouldn't smooth down. Right when they put that cap on my head really hurt like the dickens and brought tears to my eyes. I almost had them take it off it hurt that bad- and no other cap did that. But there wasn't another cap ready so I 'toughed' it out. The gel in that cap was thick and hard and didn't sit right. I doubt my troubles are all due to one cap- but I think the area was exasperated by that cap.
What did you do with the woman who had lost a patch? I'm thinking I'll do some gauze on the sensitive area but I'm not sure how thick to make it. Any ideas on that? Any and all ideas would be greatly appreciated.
And do you think I could get some extensions put in to cover the area if I do get a bald spot? Or would that be too hard on the hairs?
About the receipts- glad to know I'm not the only one having that problem. It took 3 weeks to get the brochures and it looks like it'll take a bit to get the receipts too.
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Sayuri- One modification that I made from the instructional video on the PCC site is I hold the cap from the back of my head rather from the front. We were having problems with the cap being two far forward when I held it on the front. Also, get Dr. Schol Mole PADS, not the regular moleskin. The molepads are so much thicker and get the cold out. Also, start taking some type of pain killer (ibuprofen) an hour or so before you start wearing the caps and have some ready to take in 4-5 hours to get the pain from the cold away.
I'm doing treatment #3 tomorrow (Tuesday).
Colleen
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CVilleJanine- If they had trouble kneading it I bet that the cap was too cold. We used 2 thin layers of gauze, but only on the bald spot. She also used neosporin.
I would not recommend hair extentions. You'd do better just parting your hair diferently.
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Hello~ I have been reading this thread for several days and have acquired a lot of information- thank you all!
I actually have fallopian tube cancer "very rare" and since there is not a website for this I hope nobody minds that I "crashed" the BC site
I had surgery to remove my fallopian tube and then after the path report had a total hysterectomy to stage my grade 3 cancer. I have my 1st chemo scheduled for Thursday and will also be unsung the Penguin Cold Caps (14 of them chilling in the deep freezer now). Janine, I am so sorry to hear of the sensitivity, itching and scabbing that you had with you first try at the cold caps. My husband and I have done two test runs at home (just for a short time to get the hang of it) and my scalp is also pretty sensitive the day after along with some itching. I am now wondering if in addition to the mole skin to protect my forehead, if I should try a thin banana under the cap to protect my scalp. The cap temps were correct, we wiped the moisture off and kneaded them prior to putting them on, but I still had the itching and sensitivity.
With the issue during my "test run" I am now concerned what my reaction may be after 7 hrs of use. Has anyone else experienced this itching and sensitivity - is this normal? Any feedback would be greatly appreciated.
Becka
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Is it easy to find the mole pads? Also, does it cover the whole head? Not starting chemo til September but really appreciate reading all the tips.
Thanks
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I will be starting chemo soon, meeting with nurse on Thursday to discuss, getting Port put in on Monday Aug 23rd. I've been researching cold caps since the first oncologist gave me the info.
I will be getting treatment with my 2nd opinion doctor that I loved, but his hospital does not use them or recommend them, yet he does not have a problem if I want to do it.
So, I'm willing to try this to save my long hair. My question is how complicated is it really? The prep seems worse than the actual application. Where do you buy dry ice? Anyone done this in the Detroit metro area? The website is making my friends think it's too complicated, but I'm willing to do what it takes!
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Hi Michcon, i did my treatments (TCx4) at Beaumont in Royal Oak. They have freezers there, so I didn't have to worry about the coolers, dry ice, etc. Still, it is a bit of a pain and I admit about 1/2 through the first treatment when my head was freezing and my neck was sore that I thought about ditching the caps. But now that I am done and still have my hair, I am soooo glad I stuck it out! My hair kept growing through chemo and I was able to get it cut about a month after my last treatment. My hairdresser was shocked! And, while she said she could tell it had thinned a bit by feeling it, she could not tell by looking at it. And you know, she would tell the truth! Also, she could feel new hair stubs growing already from what I did shed. So, yes, it's a pain, but yes, it was totally worht it for me. You should PM gmp300 on this site. She used the cold caps at her hosptial in MI last year and is now the cold caps rep for this area. She was my contact for using the caps at Beaumont. I'm sure she can give you the scoop on what she did. Also, the restrictions on what you can do to your hair during treatment seem like a pain, but really, it goes by so fast and you will see what works for you. Even though I know you are not supposed to do so, I ended up using spray on conditioner and blow drying my hair on the cool setting every work day (I's wet it in the shower, but only washed every 4-5 days and did not use conditioner in the shower). You get used to it. I'm still not washing every day (my last treatment was July 9th) and have only moved up to the warm setting for blow drying, but really, it's no big deal at this point.
Becka- welcome! Hope we can give you some comfort although our cancers are different
I wouldn't put any guaze between the cap andyour scalp if you don't have to. After the first 2 treatments, my scalp was somewhat sensitive and my part was really itchy, but it would go away and I don't remember feeling that at all after treatments 3 and 4. I think the caps and chemo are just very drying in general so your scalp will itch. I was worried too, but I remember one of the prior users telling me the same thing and she was right. I did not have any frost bite, blisters or any other scalp problem, just some tightness and itchiness that never amounted to much, thankfully! Good luck and keep us posted!Drim- so gald you enjoyed PR! I wa shoping to take a vacation right after rads, but my BF just started a new job, so now vacation is on hold
But the end of rads will still be good! I did get my haircut, but I did not let them wash it at the salon. I washed it myslef before I went it, so my hairdresser just rinsed it before cutting it. I did let her blow dry it on warm with a round bruch and have been doing so myself ever since. So far, so good! Yay for styled hair again! Can't wait til I can color again, but fortunately my grey is not too bad so far.Good luck all! GG
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Haven't used cold caps. Lost my hair twelve days after first chemo. But I did use the hand and foot cold caps. Can't say the cold caused it but I had flu symptoms and 101 temp for 5 days after chemo. On my second go round I told them I was old and didn't care about my fingernails and toenails and I wasn't going through any more medieval torture. Still have my eyebrows and eyelashes after round 2. Round 3 tomorrow.
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Thanks for the reply Golfer Girl!
I was going to Beaumont, had my surgery there, but I was turned off by the Oncologist. I did get the cold cap info from them. My 2nd opinion was from a doctor out of Providence, so I will most likely be going a bit further to Novi for treatment, but figured for once every 3 weeks I could make the drive there. They do not recommend it, so I doubt they have freezers. I'll be asking the nurse all of these questions on Thursday.
So glad to hear you saved your hair! I hope I can find some of my friends who are willing to help me through it, don't think I can rely on just my Mom to help out.
Have you moved on to Radiation? I will most likely go back to Beaumont for that as it's closer to my house.
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BeckaAz- I sent you a private message
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Drim- Thanks for all the helpful tips! I had my first chemo this morning, and got through it without any trouble! I hope I did everything properly... It was difficult to position the caps on the right place of my head. It was either too forward or backward. I have to wait until day 21 to find out, right?! I'll keep my fingers crossed!
Colleen- Thanks Colleen! I took Advil before my chemo, and I didn't get any headache! I went to Target, but couldn't fine the Mole Pad, I bought Moleskin, but that seemed to be OK. I put a folded handkerchief between the flap and my forehead, because it got too cold!
I was freezing the whole time, so I recommend people to dress very warm like in fleece and thick socks plus a blanket or two!!
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Golfergirl
Dumb question but was your TC taxotere & carboplatin? So happy to hear your success cuz it is very inspiring.
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A tip to prevent getting cold is investing in an electric blanket. I finished my chemo in July and looked a little funny in the chemo room with my big warming blanket, but I did not get cold... well except my head of course.
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Makingway
The problem is with that particular cap- even at room temperature it's noticeable that it's different than the other caps. It seems to be overfilled with gel so it can't move around or smooth down. We had it right at the -30 C mark when it went on my head.
I'll have to figure out the gauze....don't want it too thick but I also don't want to do any more damage since it is still very sore and on the top of my head. I have been putting olive oil on the hard scabs at night and washing only that area with a biotin soap. I think it's helped break up the scabs/skin some.
I actually have an appt. with the dermatologist tomorrow so he may be able to either advice or educate me. (And I'm not ashamed to say I used this nasty disease to get the appt. at the last minute- what receptionist can turn down a woman in chemo trying to keep her hair??)
The mole pads sound like a much better idea for the chin than the moleskin. I was thinking of doing some thick gauze and a extra large bandaid.
For the area around the hairline we used that self adhesive first aid tape- the stuff that sticks to itself, not to the skin. That worked great- I put a bit of moleskin on my forehead then wrapped my head with that tape. I got the idea from one of the news stories on the rapunzel project website. Here's the link for the visual. http://www.startribune.com/lifestyle/health/94666214.html?elr=KArks7PYDiaK7DUHPYDiaK7DUiD3aPc:_Yyc:aUUr
And here's a link to the tape I'm talking about. http://www.drugstore.com/qxp79916_333181_sespider/selfgrip/self_adhering_first_aid_tape__bandage_1_inch_beige.htm
And to Michcon I will say I agree completely with GolferGirl- it is a total pain in the butt, but so worth it. The caps actually don't give me a headache but do make me somewhat nauseous and I feel a bit dizzy with the first couple. And it's difficult to get comfortable sitting/standing/laying down with them on your head. So for 7 or 8 hours you are miserable- you're already going to be miserable with the chemo anyways. BUT to not have a bald head- or being a poster child for cancer (look at the sick middle aged woman). I'll take my thinned, scabby hair any day!
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Emster- my chemo was Taxotere and cytoxan. Not sure if carboplatin and cytoxan are the same or not, I'd have to google it.
Michcon- I am doing rads at Karmanos is Farmington Hills. I work about 2 miles from there, so for me that was much better than driving to Beaumont for daily rads. I go on my lunch hour and I am in and out in 10 minutes. It would have taken me 1/2 hour one way to get to Beaumont. I just started my 3rd week and so far, so good. They are really great at Karmanos, too, but I decided to do chemo at Beaumont because of the caps. Karmanos didn't have them and didn't seem supportive of doing them. But they have been great for rads. Good luck on the caps. My sisters both helped me out and it was nice having 2 helpers if you can swing it. The caps have to be changed every half hour so its nice if there are 2 helpers around lunch time so they can work in shifts and still go get food. My one sister in currently unemployed, so if you get stuck shor, let me know, I can check to see if she is available! She did a great job for me
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Sayuri--I have an electric blanket that I take to chemo. This was mentioned in some of the very early threads. I had my 3rd treatment today and noticed that I was feeling much colder this time. The reason is on the 2nd treatment I was drinking hot soup; wasn't hungry today. Next time I am asking for soup.
Sitting at home while I finish the 4 hours of post-chemo caps.
Colleen
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Thank you GG:) Can you give some general guidelines as to when you actually start wearing the caps to when you actually take them off? Do you cover the whole head with moleskin?
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So good to hear all of the great advice for the new PCCr's. I thought I would throw my 2cents in where I could. I finished 6/12 Taxol treatments and was forced to stop early due to severe neuropathy; but did use my caps all the way through my treatments. I hardly had any shedding at all. No patching or bald spots either. I can relate to the frostbite and scalp itch. I experienced the frostbite twice in the same spot, right at the front of the hairline or the "widow's peak" it may be called by some. The first time we chalked it up to not properly wiping the caps off completely. This is SO important to not have any condensation or moisture on them...it will lock in the moisture and actually freeze it to your scalp. The second time it happened in the same spot, but it was caused by an ill fitting cap. The caps gel we think didn't thaw properly and had a hard knot in this area. When it initially went on I could immediately tell and it was painful, but I wore it anyway. I should have switched caps, but didn't. Both times the areas scabed, peeled and were ok. I left them alone and they healed fine. I didn't lose any hair either time, I think if I would have pulled at the scabs, I may have. I totally agree with bringing the electric blanket as well. This was suggested to me, I had mine the first day and was so thankful I did. I had a fleece jacket as well as socks too! You can find the moleskins at any CVS drugstore. I recommend the thicker ones for the forehead, and we used the thin moleskins for the ears. They were easier to mold to the ears. By the 3rd treatment, we were pro's. To any outsider, we may have looked like a three-ring circus, but at the end...I was the only one taking treatments left with a head full of hair!!! The PCC's are definetly worth every bit of work. Good luck!
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THank you so much GAgirl!
I cannot wait to get it started and finish it! I am getting taxotere, carboplatin & herceptin in 6 cycles. 6 seems so long! I have a long list of things to buy. Anything special for hands, feet, brows?
Soooo very happy for those that have finished treatments. Can't wait to join you guys!
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THank you so much GAgirl!
I cannot wait to get it started and finish it! I am getting taxotere, carboplatin & herceptin in 6 cycles. 6 seems so long! I have a long list of things to buy. Anything special for hands, feet, brows?
Soooo very happy for those that have finished treatments. Can't wait to join you guys!
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Emster-- There is a company Southwest Techmologies Inc. that makes a product called Elasto-gel. They make gloves, slippers, and caps that are used for chemo. The web site is www.elastogel.com I am using the gloves. I am on Taxotare which is hard on the nails. I have 2 pair of gloves and I put them on 15 min before the drip and change them after 45 min. I wear them for 15 min after the Taxotare is over. I didn't find out about the gloves until after my first treatment. I have one white line across each nail from the first treatment. My nails seem to be doing fine. I have finished 4 treatments and have 2 more to go. I had already lost my hair so I didn't do the caps. I am now trying to save what is left of my eyebrows. I have the sinus mask from Elasto-gel. Last time I just put ice in sandwich bags and held it on with a headband across my forehead. The number for the Southwest Technologies Inc. is 1-800-247-9951. They actually answer the phone and will answer all your questions. They don't sell the product, but you can find a distributor on the web site.0
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So many newcomers! How exciting. Welcome to CvilleJanine, BeckaAZ, Emster, and Michon. I hope I didn't miss anyone.
CvilleJanine - Thanks for the push on trying to contact Jessie. They are a hard bunch to get in touch with in general so I sent in my request for a receipt. Ang - I'm glad you got yours. Hopefully they are getting the hang of what us US ladies need to go through with insurance and now have a standard receipt.
BeckaAZ- you are so welcome in our group. Glad to have you! I would not put anything on my scalp to help protect it from the cold. It needs to get cold. Your scalp may be sensitive and itchy but that's okay. It's worth it in the end. Like others have said, you should get the mole pads (got mine at CVS) for your forehead and temples and pantyliners for your ears. I'm curious as to what kind of chemo and the regimen you will be receiving.
Emster- for my hands and feet I used frozen peas. They stay cold for a long time. I kept them on my hands and feet 15 min before taxotere started until 15 min after it ended. I had absolutely no hand, feet or nail issues.
Michon- Like golfergirl said, it is better to have 2 helpers. I had 2, one of whom was my mom and she was great. My BIL did all the heavy lifting (literally) but my mom made sure the caps were on correctly, she helped keep them in place while my BIL was fastening them, plus she did a whole bunch of other things like - make sure peas were cold and were on my feet properly, helped with the electric blanket, helped with lunch, helped with the cap kneading and temps and helped with the giant ice cubes that I had in my mouth the whole time during taxotere (plus 15 min before and after - which I HIGHLY recommend).
GolferGirl - I'm so excited for you. Sounds like you are doing great and your hair routine is just about back to normal. I just finished rad #6 of 33 and doing well too. I think my hair is finally settling down. I'll see when I was it tomorrow. Haven't had much shedding at all in the last couple of days.
sayuri - congrats on getting through your first treatment.
GAgirl- I hope you're doing well and that your neuropathy is dying down.
Good luck to everyone who is having treatment this week!!
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I love all of you guys! It really helps to talk to real people who are going through this.
GolferGirl - I just may ask about your sister's availability to help with the cold cap. I'll pay her!
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One question for all of you, what type of shampoo do you use when you can wash your hair?
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Drim, my chemo is fairly similar to one for BC - I'll be taking Carboplatin and Taxotere every three weeks, either 3 or 6 rounds (still to be decided on how many are needed)
1st Chemo is tomorrow AM - I started my steroids this morning, have my nausea patch on and will be taking a Claritin, Aleve and Benedryl soon (but you all know that drill
Thanks again for the cold cap tips and sincerely all the best to everyone!!
Becka
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michon - you should use anything sulfate free and keep the conditioner away from your scalp if you decide you need to use that. I used Pure Results by Regis Design Line. You can only get it at Regis salons. Also, Devachan makes sulfate free shampoos called NoPoo and LoPoo. I've used the NoPoo for a long time so I decided to try something else during chemo. The Regis stuff has some suds whereas the NoPoo does not.
Becka - good luck to you tomorrow! I guess you are getting the neulasta shot on Friday. If that is the case I highly recommend taking the claritin right now and continue taking it for at least a few days. As far as I'm concerned this is an amazing drug and I am now crediting it with saving me from all kinds of reactions. That's just me. It doesn't work like that for everyone. Seems like this thread is the perfect place for you. Glad you found us!
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Emster- I think its different based on your type of chemo and hair texture,etc. Frank or soemone from the company should give you specifics for your routine. But for me, I wore the first 2 caps for 20 mins each, then switched to 30 mins a cap for the rest. 10 minutes into the 3rd cap (so 50 mins after I started freezing), i could start my treatment. then I had to wear the caps for 3 more hours after the drip stopped. Made for a long day, but it was only 4 treatments.
I've been using Ojan shampoo and Revitalizing Spray. The spray is kind of a leave in conditioner.
Becka, you might want to see if there is a Starting Chemo in August thread here, too. I was on the May chemo thread and it was so great being able to share side effects, etc with peole going through the same thing. Good luck tomorrow!
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Drim; Thank you so much for all the tips and for the nice welcome. lately, I get so excited to see what you guys have written cuz it helps alot. Glad to hear you are doing well. I have so much to write down and gather so I dont miss anything. Thanks again.
Golfergirl: Can all of us just hire your sister!:)
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Did TC treatment #3 yesterday, and I think all the cold stimulated my hair. It looked better today and the curl/wave was coming back. Shredding is back to pre-chemo levels. Only 1 more TC to go, and then I can send these penguins packing.
Colleen
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