Cold Caps Users Past and Present, to Save Hair
Comments
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Good job Serenity!
Do you ladies know if Aveda products are both paraben and sulfate free?
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Just wanted to pipe in here with another encouragement to do the PCCs! I am now 7 months PFC and feel and look great. Back to highlighting my blond hair with foil like I used to. Able to curl and use dryer. Still washing in cool water. With the TC x4 treatment, you will do great. I kept 90% of my hair.
No one in the medical community here thought it would work. Now we've "coached" 3 others on how to do it and they have kept their hair, too.
It is a lot of work those days of chemo, but so worth it. LeesaAnn: I bet your friends would love to help you. Let them know your need so some will offer to help. Don't allow the medical community to discourage you by making you doubt it will work.0 -
Howard: I need to highlight my hair badly. I am 8.5 weeks post pcc. I have stopped shedding around week for 4 or 5. I have had three hair cuts since I ended chemo on 9/22. My hair feels healthier and thicker each day. When did you get the nerve to color and how was the condition of your hair? I am hoping to do it at the end of Decemeber but am nervous about it. There does not seem to be as many blonds that have used the caps.
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Hello All...I have the impending doom of chemo hanging over my head scheduled to start Nov. 30th. TC x4. I'm ok with everything about the side effects except the hair loss which has me overwhelmingly anxious. These cold caps have my attention but getting them seems very complicated. Does anyone have any advice as how and where to start the process?
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anniebell, It is not really complicated but you do have to fill out forms a few forms etc. Frank needs to know what type, strength etc. your drugs are for your cap protocol. Here is the website for the cold caps: http://www.msc-worldwide.com./ You will find cost, how to order, etc. . You may be able to get a donated freezer for your chemo facility from http://www.rapunzelproject.org./ It all takes some time, so you will want to get going. 'Everyone will help you and it is so worth it. Good luck!
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Laura5...thanks for the info. I tried both of the websites. The first one said it wasn't available and the second one said there was an error. Am I doing something wrong by clicking on the link?
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AnnieBell: I know I'll get resistance here from the PCC users but I used elastogels and I had pretty much the same success as the PCC users...I followed the protocol of the PCC users. The ElastoGels are quick to get and I think easier to use. I didn't need near the amount of dry ice the PCC users needed and I had to (I didn't) I would have been able to switch them out by myself.
I purchased 5 and kept them cold on the dry ice which we bought the morning of treatment since there was none in our small town in NV and we drove into Vegas, picked up the dry ice, popped the caps on the dry ice and by the time we got to the center, had blood work, saw the doctor, they had plenty of time to cooooollllll down. Don't forget to ice your hands and feet too.
Just giving you another option!
Arlene
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Note: Do NOT purchase used ElastoGels.
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anniebell, Sorry about that, try these: www.msc-worldwide.com and www.rapunzelproject.org.
I had copied and pasted the others, not sure why they didn't work.
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I ordered my Penguin Cold Caps today. Now I'm tracking down igloo coolers, dry ice, infrared thermometer, on top of the other things needed to get ready for chemo. Feeling overwhelmed and stressed out. Maybe just a *wee* bit of unexpressed "cancer rage" seeping out.
I need to get out and exercise, definintely!
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my daughters found coolers on wheels and infrared thermometers at sears.
I took ativan before chemo and slept thru most of cold cap discomfort. I have a big head and lost a lot of hair on periphery, then lost it sparingly over the rest of my head. Lost40-50% total I wore a wig from last treatment until about 2 mos pfc. Then I cut my hair short, so it would grow in more gracefully, colored it and had the chemo curls relaxed. No harm done and it looks pretty cute if you like gamins. Glad I did the cold caps.
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asmd, I too have a big head, but I ordered the extra gel bands and placed them around the hairline.
leesaAnn, Will your facility accept a donated freezer from www.rapunzelproject.org? I was nervous about all of the added PCC items needed too, but really, it's a breeze.
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LeesaAnn,
With all that is going on I felt like a was on a run away train. I wanted to follow all the recommended therapies to get off the train, but there was no control. Cold caps gave me a focus that I could control- keeping my hair. The first time is the hardest because you are reading what to do and gathering all the "stuff" to make it happen. For the other infusions you know what is coming so you don't have to sweat the details. Perhaps there is a local person who could help or you support. List your location and perhaps you can find a new friend, sounding board, chemo buddy. Best of luck with your chemo. Julia
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Anniebell and LeesaAnn-I am coming up on one year PFC (January 7th) and I used the elasto gel cold caps...I had 6 treatments of T/C and I lost about 10-15% of my hair while using the caps...Cold caps can be a bit of work at the beginning, but once you get past the first treatment, it gets easier...We are all here to cheer you on! Good luck and God bless!
Tori
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Hi gals,
I bought 3 elastogel caps after my first TCH tx, thinking maybe it wasn't too late. But alas it was too late. My hair started falling out by the handfulls the next day. I am going to return the caps, unused and unopened to the company,but they are going to refund only 80% of the cost. If anyone wants to buy them from me for 20% off the cost, I would be fine with selling them to you. If I don't hear from anyone in the next few days, I will just return them to elastogel.
Good luck everyone. Hang in there.0 -
Hey Tori: Long time no see.
AbqTiger: You know the caps still help with much quicker regrowth. You might want to think about that but understand you wanting to get your money back too. Sorry it didn't work for you. I've held onto my 5 EG's just in case plus I used them for a month or so a few times a week after finishing chemo. Good luck to you!
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I'm wondering how I will time everything. I start with blood draws at 8am, I see the Dr. at 8:45, and am supposed to be at the infusion center at 9:30. (this is all in the same building) Did you guys wait until you were sitting in the chair to start your caps? Wondering if I should be wearing them during blood draw and Dr. appt?
I am getting TC, they told me each drug would take about an hour to administer. I'm located in Atlanta and I'm getting my chemo at the Emory Winship Cancer Institute, if anyone is local.
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LeesaAnne: I put mine on half hour or so prior to the chemo. During the premeds which usually take 1/2 hour is usually sufficient. Good luck - you'll do great!
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LeesaAnn, you should get instructions with the cold caps. I was on TCH and my instructions were caps on 50 min. before actual chemo, (you will be getting your premeds during this time). Caps during both chemo drugs and for 4 hours after. I waited until I was sitting in the chair before starting caps. I always told the nurse when we were starting caps, so she could start premeds. I brought a clock along with the timer, and we wrote down what time we put each cap on. That just helped keep track of everything. It does sound complicated, but really it's not! After the first few, your helper(s) will be pros.0
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I always told the nurse what we were doing and let her know when she could start meds. I had DH give her a 5 min warning so she would remember. It worked out fine. I would not start them until you get in the chair as you can be delayed waiting for your med onc appt or blood draw.
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LeesaAnn: You won't start your first two 20-minute caps until your pre-meds have begun, which is well after your blood draws etc. (It depends on what premeds you get and how long they take; most take about an hour to an hour/ten mintues.) Be aware that your first infusion will run much longer than others, because you will meet with every member of the care team (even the pharmacist) to review info, review your bloodwork, have things explained, before any meds run. And every med -- including each individual pre-med, even Pepcid -- will be given on a slow drip at first to make sure you aren't allergic. I was to use 14 caps but used 17 caps on my first infusion; for the others I used 14 caps.
My nurses were great about figuring how long the premeds would run so we could time things. We took the length of the premeds, counted backwards 40+ minutes for the two 20-minute caps plus short change inbetween, and the ten minutes after the third cap went on.. And it's fine to wait a few minutes between pre-meds and the start of the actual infusion (for me, taxotere then cytoxan). At one point we had the nurse wait about five minutes after pre-meds before starting the chemo, so that the third cap was on exactly 10 minutes as she pushed the start button on the IV pole. It's all a matter of good communication, and onc nurses are some of the best!
This was all new to my nurses at the time, and they were patient if interested and skeptical, but by the end of my treatments they were my biggest champions and so genuinely excited by the success of the caps. It was wonderful for all of us.
Best,
Susan
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LeesaAnn: The Penguin Cold Cap has to be on 50 minutes before chemo. Make sure you wipe the inside of the caps each time! This will keep u from getting frost bite!
On another note diet, exercise, vitamins and supplements are factors that can determine your overall success with the caps. I drank a ton of water during the infusion, made fruit smoothies with Greek yogurt, wheat germ, flax and benfiber. I made sure I detoxed the chemo quickly! I never was constipated and for first three days after infusion I had two of these smoothies. My oncologist said it was OK for me to take Maxi Hair Vitamin by Country Life , Silica, Fish Oil, vitamin D and when my iron dipped low, I took an iron supplement. Ask your doctors to check vitamin levels when they do blood work. You will shed for longer periods after chemo if you have vitamin deficiencies.
I ate a lot of protein and exercised everyday. I kept close to 90% of my hair and stopped shedding quickly.
I am almost 9 weeks out and I am healing fast. You can do this!
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Hi Ladies- I am very tempted to color my hair with "Naturtint" witch doesn't have ammonia but a little bit of peroxide it is what I have used for the last 5. I am 22 weeks PFC (5 months), should I do it?
I am due to color with any brand by dec 23, but since I am not using ammonia with Naturtin, do you think I should do it? Does anyone have used Naturtin before before the 6 months?
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I meant to say, what I have used for the last 5 years.
Tiki0 -
How is your hair doing? Does your hair feel healthy and has the shedding stopped? You are close to 6 months. Is it a professional color?
I am 9 weeks tomorrow and I will highlight some where between 3.5 months to 4 months. When do you notice the new growth? i have hair on my legs but none under my arms. I have very little eye leashes left, but brows look good. My hair down south has come back lightly. My hair seems dryer after chemo. Are you experiencing dryer hair too?
From reading other posts, it seems like most women do fine when they color before the six months. Should you contact Frank. On the site, it says wait 4 months before coloring.
Serenity Wisdom: what are you going to use for color at the 4 month mark?
I hope everyone has a wonderful holiday!!!
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Happy Thanksgiving everyone!
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Hi Soccergirl, Sorry for the late reply. I highlighted my hair at 6 months PFC. Had such excellent results with PCCs and followed every "rule" from Frank. My shedding was almost all after chemo. Still kept 90%. Waited until shedding stopped- which took 6 months. Hair seemed healthy since it had not been blow dried or curled in so long. Hair stylist used cool water and was very gentle when shampooing. I combed out tangles myself. Coloring did not hurt it at all.
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What was you dr's opinion On using the cold caps? Mine was not favorable.
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My oncologist had never had anyone use them but she was willing to have me be first in her practice after she did EXTENSIVE research on them. She spoke with many oncologists around the world and was comfortable with me using them. They did work for me with 6 rounds of TCH and my oncologist believes they will be used for lots of chemo types in the future...
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Howard if I am not shedding, do you think I can color early? My shedding stopped 5 weeks Post PCC and I am 9 weeks now. If I wait another six weeks, do you think it would be OK. I am back to normal hair practices except I don't straighten my hair. I deep condition the hair almost everyday. My hair texture and dryness is an issue for me after chemo. I found great products and think my hair will return to normal soon. Did the hair you lose come back?
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