Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Dexxy: Nice to see you again and great update! Happy Holidays to you too.
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Dear All,
I finished chemo about a year ago and am so pleased I used the Penguin Cold Caps. It was such a boost to keep my hair during chemo.
Today an acquaintance contacted me -- referred by my oncologist's office (which is great) -- to ask me about chemo and cold caps. She's interested in trying "cranial helmets" from a different company: Elastogel / Southwest Technologies.
Do any of you have experience with these caps? Are they as effective as Penguin Cold Caps? They do look easier to use.
My thanks in advance. Good luck on your chemo journeys...... It's very good to be well on the other side.
Happy holidays,
Katherine
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My next TCH is a week from today. My hair is in WAY better shape than I am.
I have this constant dread that it is going to fall out one day. It's not like you can do the cold caps sort of right. One miss for 30 minutes and your hair is toast and you are just as bald as if you had never paid $2000 and gone through all the stress and physical pain.
My husband isn't going to be at the next treatment. Maybe my helpers will repack the caps such that they are refrozen properly and maybe they will use the infrared thermometer on each portion of the cap to ensure that each part is -30 or less and maybe they will strap it on tightly enough.
Or maybe they won't.
It only takes one miss and then the entire exercise was pointless.
I don't think this is discussed enough.0 -
@momof4girls-I have helped 2 women who had ovarian cancer and used the Penguin cold caps with success.
@JoyKK-Although Elastogel caps can be purchased rather than renting Penguin caps, which is a plus, I would never recommend the Elastogel caps. I don't believe they are effective enough. I have helped many women with the PCC and I can say with confidence that they work. The Dignicaps-another cold cap system, might be more effective had they used the caps at a lower temperature. I believe in the trials conducted the temperature was higher than -15° Celsius.
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TheLadyGray, I'm sure we all had those same worries, especially in the beginning. I know I did! I think your helpers will do fine. They want you to keep your hair too! Just remind them of proper temperature, tell them if they need to re-adjust the velcro etc. I am sure the possibility of human error was built into the studies of the PCCs.
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TheGrayLady, I always took an alieve about half an hour before using the caps. Although the first cap was painful for about 5 min., the rest of them were not too bad. Have you tried alieve?
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Joy:
I'm an elastogel user and they work as well as the PCCs. I have as much hair left as most of the girls who used the PCCs and you can do them yourself if you need to which I didn't since my husband did it for me but easy to switch out alone if need be. Just follow the same protocol as the PCCs and you'll be fine and keep them to the temp and tight too. I may have communicated with your friend. I purchased 5 caps and much less than that would be a challenge.
Best wishes to your friend, Arlene
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Hi Lady Grey,
I had similar fears that if my helpers did not do it right, all my hair would fall out. It did not. I am 5 months PFC and have lots of now colored hair that looks good. I had many helpers as I had to rely on friends who were available and many of them learned on the job. Although I did try and encourage them to watch the video beforehand and had the helper who was already putting the cap on train the new helper, it worked out. Unless, the cap temperature is really off I can't imagine that having a slight variation once will radically alter the effectiveness of the treatment. It is interesting to see where the cap did not touch the hair as I have wings and bangs of the new chemo hair coming in. Does not look bad, the old long hair covers up the wings next to my ears.
Congrats Dexy on finishing the trial and helping out with data. It would be interesting to do a trial on Dignicaps vs PCC's. I wonder if temperature is different?
Happy Holidays everyone
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I had my second treatement to TC on Tuesday. It came with an unexpected event. I had an allergic reaction to the Taxotere (didn't first time) Had horrific muscle spasms, lower back, then down my legs and my arms. Scared me to death, but I must admit even in the midst of level 10 pain, I was keeping track of my cold cap and when the next change was. As a result of my episode, they slowed the drip down, so I was in the chair even longer, with more cap changes. It was a grueling experinece, to say the least.
Labs started at 8am, and due to delays in the morning, and messed up appointment times. Chemo didn't start until almost noon. Came home to receive beautiful flowers, which really brightened my day. Last cap was at 8pm. Here is a pic of me with the of my flowers. Just took off the black bands that make my face scruntch up.
P.S. Having heavy shedding, much more so than even a week ago. Does the rate of shedding fluxuate over the course of chemo?
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I didn't have a lot of shedding until the third infusion. Many people have heavy shedding at day 21. What you are experiencing is completely normal. Shedding does fluctuate, but be aware of your lab work before your infusion. Make sure you are not vitamin deficient. Does your oncologist approve of vitamins with chemo? Will you continue with taxotere if you had problems?
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Btw, I love the panty liner on your forhead! Priceless! You are def in the club.
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LeesaAnn, Wow, hopefully your next one will go much more smoothly. I went a couple of days ahead of my chemo day for my labs, so that we could start the caps around 9am each time.
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The Lady Grey: many women have different helpers and do just fine. I am sure there could be a small chance they do not do as well but YOU WILL NOT LOSE YOUR HAIR. From my experience from using the caps and studying the message boards the major variables for the amount of shedding are as folows: thickness of hair, age and condition of hair, diet( carnivores shed less than vegetarians), and how fast you detox the chemo.
I am 3 months Post PCC today! I kept close to 90% of my hair and I have new hair growth where I lost the old hair. This system does work! Although I cut my hair to my collarbone because it felt like shit from the chemo, it is now starting to feel soft and healthy again. I feel like in one month maybe two, my hair will be back to normal! Woman who don't use the caps have about a half an inch of hair at this point! It is unbelievable to think that my hair is almost to my shoulders and looking better each day. I am so grateful, I can't express how wonderful these caps are. Once you are through the darkness, you will have a different perspective. I think wow, I could be bald right now! It is so unimaginable because I dodged that bullet with the caps!!!!!
On another note, my eyebrows thinned a little after chemo and I lost half of my eyelashes. Everything came back and I use Lattise.
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soccergirl, I know just how you feel. I finished chemo 2 weeks ago with all of my hair. Words cannot express how fortunate I feel to still have it. I still really can't believe it.
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Thank you for all your reassurances. I wish I had received better material and explanation of what to expect during the use of these caps. I think that is why I've felt panic and worry. I haven't known what kind of expectations to have. You ladies have been wonderful, and I and grateful for your advise. We must sound like annoying nervous Nellys!
P.S. I am at day 22, and would consider this heavy shedding.
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Laura 5: Did you keep all of your hair? It is so wondeful! I think I am going to highlight next week, but still am a bit afraid. The shedding has stopped and I cut off the dry hair. Some women highlight during chemo. It is nice to be in a postion to color your hair after chemo. My roots are very bad because I have not colored since July. I have been wearing my hair 3 shades lighter for years , I wished I dyed my hair back to normal color before chemo.
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You would have to go back a couple years to when I used the Cold Caps to see all the great ladies that helped me through this. It was difficult to get the much needed information and I am truly in debt to the ladies on this board. Hang in there all you Cold Cappers...
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Amen to what Ang7 says: she was definitely one of my angels way back on page 16 of this thread!
Wish I could figure out how to post pictures here. I had my hair done twice for the two Nobel Prize banquets; explaining what was going on with my hair to the hairdresser was quite something! She couldn't figure out why I had super-curly undergrowth, long waves, and some recent wings ... I think she thought I should fire my hairdresser :-) When I told her the story she was astounded. But man, she did two spectacular (and different) up-dos! The first was a beautiful french twist with a cascade of curls coming from the top. She used three beautiful rhinestone stars and I had a tiara to finish it off. Very elegant and formal. Three nights later, I sported another updo, this time a little more relaxed, rolled up around the edges and with the stars along one side like a constellation.
I had two other BC friends there, and for us it was an extra celebration. I was so thrilled to have hair long enough to wear up-dos for this special event.
The bad news is I'm having a horrible time with tamoxifen, and seem to develop new SEs every time I think I've got it under control. Nausea and GI issues are the latest and it's debilitating, I could handle it up til now. So, my MO is checking my hormone levels to see if I'm yet a candidate for an AI instead. The good news is she's given me permisssion to stop taking it until I see her next week; last night was the first time I slept through the night in over a year! The symptoms evaporated almost immediately so I'm pretty sure it's the tamoxifen at work. So much to think about, have to remind myself to take this all one step at a time and keep my eyes on the big picture.
Susan
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Hi,
Thanks SebM for your reminder on keeping eyes on the big picture. I have had my herceptin stopped due to possible heart damage issues for the past 2 months. Just had an echocardiogram and am awaiting results to see what is happening. If all ok they will restart herceptin. At least having my hair cheers me up It looks pretty normal except for the new growth, now 5 months PFC of TCH.
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Thanks Susan!
Sorry you are having such a time with tamoxifen...
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LeesaAnn, Don't worry, no matter where we are in treatment, we are/were all nervous Nellys!
soccergirl, Yes, I did keep all of my hair! Although I shed (still am) what seemed like a lot, even I can't tell. I highlight my hair too and can't wait to be able to do it again, but I know I will be scared!
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LeesaAnn...my heavy and very noticeable shedding started at day 21 after my first infusion which happened to be the day of my 2nd treatment. Keep faith.....I still have my hair 8 months PFC. Hugs.....
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Laura 5: i will let you know when I do it.
Susan: I am sorry you are having difficult side effects with Tam. I am curious if a woman is hormone positive with her breast cancer , if there are more natural ways to lower risk of reoccurence. Example, avoid BPA, parabens, food that is not organic, birth control pills etc...
My Oncologist didn't discuss the environment and the role it plays with breast cancer. My Gyno and I did yesterday and she agrees that the birth control pill could be a factor in my development of breast cancer. With that said, I wish there was data on natural ways to keep estorgen levels under control without a pill. If a woman changes the high risk facotrs, how does it affect her outcome?
They are currently doing a study at Mass General Hospital (where I had radiation) to find women who stopped taking Tam becasue of side affects but didn't tell their doctors. I am curious what the finding will be.
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@ soccergorl-look into DIM for estrogen regulation. There is info on this in the topic forum under 'Natural Girls'.
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makingway: thank you! Very interesting!
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Merry Christmas and/or Happy Holidays Everyone. Looking forward to a new and better New Year!
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Hi,
I used cold caps but lost about 40% of my hair, mostly around periphery, because I have a large head. What was left was long, and got really wiry and nasty after last chemo. 1 month pfc I started having it colored with semi-permanent color. At 3 mos out, I had it straightened, colored with regular color, and cut short enough that the new hair would grow in more gracefully. Now coloring every 3 wks-just the roots. No damage. All my lashes and brows fell out 3-4 wks pfc, and have grown in longer and thicker than ever.
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Hi all...I am 4 days post treatment #1 T/C, using the cold caps. I juat washed my hair today in cold water. It felt great. I have long hair, so I was really worried about pulling at it while combing. I did my best, holding it away from my scalp. I have a question - do you touch your scalp at all when you wash the hair? I did gently. I also have had periods of scalp tingling and tightness in my scalp, and it sounds like that's pretty normal. I used a cold cap out of the freezer the first couple of days after treatment for a half hour. Do any of you do the caps between treatments? Thanks for all the info here!
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Hi I'm starting chemo in the next week and want to try cold cap.Am I right in thinking it's as cold as putting your hand in the freezer? Also I will have rads at some time do you lose hair from that?
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ckk, I finished treatment with my hair. I gently massaged my scalp when I washed my hair. I also had scalp tingle, it kind of hurt sometimes and I didn't use the caps between treatments, but I know a lot of girls do.
ali68, the caps really are not like putting your hand in the freezer. I took Alieve before treatment. The first cap just hurts for about 5 minutes, then I think your scalp goes numb. The rest of the caps barely hurt for a minute or two. I have not heard of anyone losing their hair during rads.
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