Cold Caps Users Past and Present, to Save Hair
Comments
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Brand is Taylor
TYR1029: Features: -Digital infrared thermometer with laser. -Temperature range: -50° F to 750° F and -50° C to 400° C. -Accuracy: +/- 1.8°F / -1°C. -LCD read out with amber backlight. -Safe, non contact temperature measurement and just point and click. -0.5 second response time. -Laser sight and white LED light for accurate targeting. -Rugged housing with recessed optics. -2 AAA batteries included. -Overall dimensions: 8.63" H x 5.5" W x 2" D. Weight:60 lbs EXPEDITED SHIPPING IS NOT AVAILABLE FOR THIS PRODUCT!0 -
I bought my thermometer an ear mitts at amazon:
KINTREX IRT0421 Non-Contact Infrared Thermometer with Laser Targeting
Fleece Ear Mitts Bandless Ear Muffs 100g ThinsulateTM Insulation & DuPontTM Teflon® (I have never use them because my hair is lonng enough to cover my ears)
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Ralston: How did it go yesterday? Were you able to wear the caps? Keep us posted on the taxol treatments. We are rooting for you!!!
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Does anyone know if you need special gloves for handling the dry ice or will any ski/winter gloves do?0
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I don't know for sure because we had a freezer at my med onc office but my DH did buy some special gloves because you have to kneed the caps before putting them on. I can't imagine him having to do that without some good gloves.
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Camper1: my husband used leather work gloves that he already had. Are you just getting started? One of the keys I've found from helping others is be sure you get the cap next to your head with the velcro straps. If your head is large and the caps don't cover entire hairline, then order the extra eyebrow band and use that to freeze the nape of your neck in back.
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Don't know if anyone is interested in a weekend healing retreat in the SoCal mountains, but I came across this and it is apparently a phenomenal weekend for women who have gone through cancer or are currently going through treatment. Healing Odyessey comes highly recommended from St. Josephs Hospital in Orange.
http://www.healingodyssey.org/index.html
If you decide to go or are interested, drop me a pm, I plan on going in October.
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Dear Debby, I had my first dose of Taxol yesterday (11 to go). So far feeling pretty good, I was pretty sleepy after coming home and lay down and slept 2hrs. but I was awake ALL night (I took some sleeping pills and they didn't help).
By far it was the worse experience I had with the cold caps. I didn't feel nausea, but even with the piece of silk I used to protect my scalp, I felt a sharp pain for 10 minutes on the top of my head with each exchange of the caps. The caps were -28 and I couldn't use the straps to tighten the caps because of the pain. I wore them for 4 hrs. and I took Advil and Ativan, but it really didn't help. I will talk with Frank to see what else I can do for next week.
I also wore ice mitts and sleepers on and off, to avoid the tingling sensation and keep my nails. It was too cold to keep them for 1 hr. (no fun... almost cruel) I hope it works, because the "numbing" sensation in my upper arm, underarm and chest plus LE (SE's post-surgery) are already driving crazy. I am waiting to see what the next few days are going to bring.
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Ralston: I am sorry to hear you having such a difficult time. At least you didnt feel the nausea you experienced the last time. But you are having one problem after another! My heart goes out to you. Hang in there.
I have to admit, I took painkillers 45 minutes before starting the caps and again mid way through. but I didnt take advil, I took vicodin that was left over from my surgery. In addition, I took an anti-anxiety med - klonopin when I took my first painkiller to take the edge off. I found that I was very sleepy during chemo due to what I took and the pre-meds that were infused, which included benedryl.
Honestly, I found icing my fingers and toes more painful than the caps themselves. There were times I wanted to high kick the &^$% bag of peas off my toes. Yes I would agree, icing fingers and toes is cruel! I always brought along a thermos of hot tea to warm up after icing. It was torture.
I am not sure if you are taking l glutamine or B6, but these supplements help prevent the tingling sensation/neuropathy that can occur when being infused with taxanes. I highly recommend them if you arent. WIshing you the best (((Ralston)))
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Debrox - have you heard of anyone who has gone to the retreat? I was just looking at it online,a nd it sounded pretty inspiring..could definately use some help with the whole self esteem, anxiety,etc that has gone along with this all..BTW, I am not a cold cap user, so I hope people don't mind me chiming in on this thread..The whole process totally intrigues me although I didn't use them..but enjoy reading about them
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Chime in anytime marial...
This is a great thread and a great bunch of ladies.
I am going to look into the retreat also.
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Marial: Yizbieta (Elizabeth) from the Cold Cap went last April while she was going through chemo. She mentioned to me that it was an excellent weekend.
I spoke with organizers today and the weekend sounds very inspiring and healing. They make sure everyone is able to go and will not turn anyone away due to cost. It is $299 for the weekend, but if cost is an issue, they have funds to help. They also help with carpooling arrangements. I was so impressed as that is what it should be all about.
The brochure I picked up at the hospital had me in tears because it hit so close to home, I want to heal and learn to live again, regain my life back and not live in fear. I need the tools to know how to do this. I am very excited about going!
Anyone is welcome here Marial, Cold Cap user or not. The women on the Cold Cap thread are very positive, encouraging and inspiring unto themselves. They helped me not only get through chemo, but help me preserve my hair!
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DebRox: Healing Odyssey sounds great. Do you know where it is held? I couldn't find info on their website.
Thanks,
Susan
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Thank you both.. I am from Northern Ca but am very interested in this, so am going to seriously look into it..sounds like it would be great
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Susan: The brochure states it is in Santa Barbara, in a mountain retreat setting. The program begins on friday at 12:00 noon and concludes at 3:30 pm on Sunday. The fee includes lodging, meals, rope course, educational materials and t shirt.
Here is an excerpt from the brochure:
If you are a woman cancer survivor and you want to:
Start laughing again
Move past fear
Feel whole again
Recreate your life after cancer
Move past cancer and back into life
Learn practical coping skills
Be filled with hope, strength and courage.......
"Healing Odyssey offers a weekend of extraordinary opportunities in a mountain retreat setting to learn self healing tools and new coping skills to empower women to meet the challenges of a cancer diagnosis, treatment, and recovery of health. Through experiential learning, trust building, team work and self exploration activites, women learn tools to regain a sense of personal power. HO is a place where women can begin to acknowledge their feelings and discover untapped abilities. In a setting of breathtaking beauty and serenity, away from the pressures of daily life, participants begin to more effectively face some of lifes most demanding challenges. The intensive nature of this weekend experience encourages the formaton of deep friendships which can continue back at home."
This retreat is only offered twice a year, April and October. I called today and there is still space available.
If anyone here registers let me know, we may be able to drive together. I have already registered and am excited about going.0 -
Ralston - I also took vicodin and ativan about an hour before I started with the first cold cap and found it to really help. After the first cap I think my head was just numb to the pain.
I did not ice my toes or fingers but did take L-Glutamine for three days surrounding the chemo and I never had a problem.
I hope Frank is able to help you too. Best of luck!
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Ralston - I also got the pain on top of my head for approx 10 mins every time i change the cap... I kinda suck it up:-) it was painful and would not talk but went away fast....i think to me i did not want to let anything get in the way ogf me keeping my hair. I took extra strong tylenol 30 mins before treatment.
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Hey Ralston - sounds like you and I had similar cold cap experiences. I would be up ALL night after EVERY taxol treatment. I would take ativan to help relax ... but learned to just accept it. I ate A LOT of ice cream at 3am those nights!! Kind of 'if you can't beat'em join'em kind of theory! I just did whatever my body wanted. I figured if i was going to be up - might as well have fun! AS for the caps those first 10 minutes are excrutiating. What i would do is walk to the washroom right after a cap went on. My hubby walked with me because i was nearly delirious with pain, but the walk there, the time in the ladies room, and the walk back, killed at least 5-8minutes. I hope that helps. Taxol days are long and hard. Hang in there. One down ...
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I agree, I will not want to let anything get in the way of keeping my hair, if I still have hair! These days I am looking more and more like Linus from Peanuts!!! That said, I bought a wonderful human hair replacement. It is a partial hair system designed to cover the area of the scalp affected. It provides a skin like material that attaches with clips. They colored and styled it exactly as I used to wear my hair BC. I am really happy because it doesn't itch and I can't even feel it when I am wearing it.
I may confess that the last couple of weeks were a little bit harder and I am at a point in treatment that I just want to get it over with, but I am looking for my second wind to bring my mind and body to a peaceful place to keep healing myself.
Anyway, next week I am going to use "the big painkillers" and let's see what happened.
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I think mine was from Harbor freight tools. My friend bought it. I cannot remember the other details, but I know it has to go to minus 40 degrees celcius.
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YAY DebRox! You are going to Healing Odessey
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Ralston: I hope the weekly taxol treatments are easier on your body. You can power through the next 11 weeks.
Glad you are going to take the "big gun" painkillers next time. They really helped me, probably by keeping me in a sleepy, somewhat out of it state during infusions.
Yizbieta: Yes I am registered and looking forward to the retreat. I am sure it will do me a world of good!
Everyone: I am now 7 weeks PFC washing my hair every 2 days, instead of 3 with shedding, but not that bad. If I wait the 3rd day, I start itching my scalp, which isnt good as it pulls out hair. While my hair isnt dirty, I still have stuff accumulate on the scalp. So maybe I need a better shampoo, but I do not want to dry out my hair.
I havent had problems like this in the past, but I was a daily washer due to oiliness of my skin. Maybe my body is returning to normal in terms of oiliness again. Any suggestions for hair products are appreciated.
Even though my shedding is diminishing, I am not going to color for at least 4-8 more weeks just to be on the safe side. Have a great weekend everyone!
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Hi everyone,
Well I am 8 weeks PFC and had my first hair cut on Tuesday. . It helped a lot cause now I don't look so straggly and it has shape. I did not have the stylist wash it before cutting because I was concerned she might not be gentle enough . So I washed it later in cold water and just patting it as I usually do. So far I do not notice any difference in shedding and am now washing it twice/week. It looks pretty full and I am very grateful to have the hair and grateful for the cold caps!!!
I wish I had my eyelashes back and that my eyes would stop tearing. Too bad there seems to be nothing that can be done to stop eyelashes from falling out. I tried Latisee while receiving chemo but then had to stop since eyes were tearing so much. I guess that is a result of the taxatere and carboplatin. It seems we all can have different side effects fromt he chemo. . I am now noticing little fine hairs growing around my scalp line where the cap did not fit tightly and I was bald there.
Ralston and others getting chemo now: I found it most effective to take an Atavan about a half hour before the chemo infusion. It made tolerating the whole procedure and caps easier.
I used cold packs on my feet but I still got neuropathy, especially on the bottom of my feet. It feels like I am walking on blocks of wood. I am taking L Carnitine now ( but I should have taken it all through chemo which I did not cause I did not know about it). I just tried acupuncture last week to help with the neuropathy/numbness of my feet and hands Has anyone tried that? Acupuncturist said it may take 8-10 sessions before I will see a difference.
Has anyone tried Henna on hair post infusion? That is a natural substance and may not cover the grey but I think it might make the hair look shiny. Would it be harmful to use?
Thanks for all of you sharing. Connie
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Hi Soccergirl,
I just finished my second TC treatment. I've been shedding and because my hair is so thick, dry and "brittle" according to my friend administering the penguin cold caps, I'm wondering if there is anything I can add to my regime to keep my hair manageable. I looked up the Sea Chi product you mentioned, however, I'm not sure if our hair has the same thickness. My hair has gone from looking pretty good to so scraggly and unmanageable with the shedding in about a week. I have two more treatments left. Do you have any suggestions for me? I'm experiencing breakage nd it seems as though I'm losing length too. I've been eating a diet similar to the one you listed.
Thanks!
Carolyn
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Debrox: Are you looking for a moisturing shampoo? I am not sure what Frank has suggested for scalp issues. I have conditioned the ends my hair (below my ears) everyday during chemo except infusion days. My hair tends to get dry and it is curly and fine (not frizzy). I let the diluted conditiner and let it sit in my hair for five minutes before I attempted to comb. I rinsed my scalp in cold water every day and lost very little hair. I used the Pure Design by Regis but I believe the rinsing the scalp everyday in cold water and using conditioner on the ends were what made me successful. My hair hasn't dried out and I have 5 days left to go.
In terms of products: I was and still am a product junky and spend a lot time researching best products and really enjoy doing hair and makeup! I miss my hair dryer, flatiron, culing irons and my round brush!
Tips: Paul Mitchel had a new product line with Keratin: Awapuhi Wild Ginger. It is paraben free and it designed for dry hair. Biolage has great products for all hair types. Redkin has a new line for thinning hair which I will look into when I am done. Also, I used the Sea Chi Leave in Moisture Growth formula. I have not put in on my scalp yet, but plan to once I am done. Former penguinistas swear by this product. Prior to chemo, I would rotate my shampoo often. You could switch products based on your scalp and hair needs. Also, I put Wheat Germ and Flax in my morning smoothies and it has helped with clearing the flakes.
Connie: How long have you been w/out eyelashes? I am dreading the 4th infusion. Does the shedding get worse right away or does it take a few weeks?
How does radiation compare to chemo? Did people feel the chemo was out of their system before they started? Can't wait for it to be over, but infusion number 4 sounds terrible.
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Hi Carolyn,
I have curly hair and it if I don't condition it regularly, it gets dry. I used the Regis Pure Design Shampoo and Conditioner. I have a lot of hair but it is fine. My hair is not thick so it easier to freeze the follicle.
I rinsed my hair in cold water everyday! I used a plastic container in the shower. I washed once or twice a week but conditioned the ends every day. I diluted the conditioner and applied it below my ears and let it sit for 5 minutes. Once I felt it was on long enough, I used a wide tooth comb and just combed out the bottom. I rinsed it out and with cold water. Then I used the Kenra leavin Conditioner. ( This product has a parabens and will discontinue once chemo is done) I only used this product below the ears. I held the roots and combed out the bottom first. Once I had did this I combed out the rest of the hair holding the roots. Then, I applied the Sea Chi leave in conditioner or Jane Carter Solution Curl Defining Cream. ( This product is organic and expensive) I used a diffuser on low heat to dry hair when it was 80% air dried. Once I knew the caps were going to work I started to get more bold. I used Kenra moisturising Curl Spray. Again, nothing was ever applied to my scalp.
I combed my hair once or twice a day with conditioner. I did not touch my hair a lot or put it in a pony tail. When I worked out I used a light weight cap and poured cold water on my head if it was hot outside. I used a loose scrunchy when I worked out to keep hair back.
Lastly, my husband worked the caps well. He got them on very tight. We used the eyebrow straps to keep the cap extra cold and tight. I drank a lot of water!
I hope this helps! Good Luck!!!
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Hi ladies. Hope your sunday is good. I am over a week after my last TC treatment and i have developed this itch on my arms, legs and thighs, when i scratch it turns bumpy and red, the only releif i've been getting is when i take benadryl, the bump goes down but after a few hours the itch comes bac again. Anyone else experience this? Please advise.
Thanks,
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I had it from mid April to mid July. I went to my med onc...she blew me off and said it wasn't from chemo (whatever....). I went to my internist and she gave me steroids but once I finished the steroids it came back. I repeated the steroids and then went to a dermatologist. The derm said it was from chemo (so did my internist). I was on oral steroids, antihistimines, topical steriods - you name it. I even was told to go off all vitamins/supplements until it cleared and told to use Vanicream soaps/lotions (they are pretty pure). The only other thing that helped give me temporary relief was Sarna lotions - you can get it at the drug store near the first aid supplies. I was miserable.....I also found heat made it worse. Stay cool.....lotions may also contribute so be careful with what you are putting on your skin. I am so sorry you have the rash. It stinks!
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Snoopy get a prescription for hydro-cortisone cream before is spreads. I was in bed for 3 days because the rash took over my body.
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Thanks Maria & Soccergirl; planning to call/see my MO tomorrow... so far benadryl is the only thing that calms me. I will ask DH to get me the pure lotion/soap. Someone else recommended dove shower cream. Thanks ladies.
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