Cold Caps Users Past and Present, to Save Hair
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Pamela, Cleaning for a Reason is the house cleaning group - they require a Doctors note of treatment. You can apply online.
I met with my MO yesterday for some last minute things prior to starting chemo next Tuesday and NOW the team there is totally on board with cold capping, after being skeptical at first. No one has tried it before in their clinic and I am in a large, metropolitan area. So hard to believe. Anyway, they are all for it now and my MO did more research and said, "You might be able to save 50% of your hair with cold capping, so go for it!" Last week it was doom and gloom when I spoke with her. She did some research and shared it with her staff I guess. They have a private room set up for me and my cold capping team. Have to say this is a relief as the thought of doing this with the naysayers looking on was weighing on me. My MO also told me that if it were her, she would not work through this treatment and happily signed off on my disability paperwork. Even encouraged me to take longer than I had planned to take off. It really depends on how I do with the SE's.
So glad for this group to share our experiences with, it has made this part of the process much easier to manage. To the poster looking at all the Cold Cap companies out there, check out the Rapunzel Project for some good information on them and also there may be some financial assistance available depending in your income.Hope everyone has a great day today!! We can do this, oh yes we can!
Anne
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Thanks for the nice words Amapola36, and yes, it sometimes takes a Maverick to come in and shake things up. WE are those people. I plan to do some fasting during chemo as well, probably the 500 calorie fast, as that is about all I can manage these days anyway. No appetite. Makes it easy. I am hoping for fewer side effects like you have had. The fasters seem to be doing well so that is encouraging. Hope you are having a great day in NY!
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Hi all!
Just curious if anyone used the cold caps years ago and had a recurrence. New to all of this. Diagnosed with IDC in December and had lumpectomy on 2/9/17. My MO is a bit skeptical about cold caps, but said they would support my decision. I would have to do it myself, since they don't have a system there.
Thank you for help and advice!
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HIP HIP HOORAY IM DONE DONE DONE, took my last cap if not long ago. NO MORE CHEMO. I'm so relieved not to have to wear them again. We are all suck strong woman here. Not only do we deal with our chemo regiment but having to do cold caps is a lot. But we do it just to feel a bit more normal. I did it to look some what decent around my kids. Hope everyone has a good evening.
Hugs.
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Congratulations Hopfull2... it's DONE!
Congratulations Tunegrrl... I couldn't open the video but saw the smile. Must feel good!
Where's Willa? She had some decisions pending and would love to know what she decided... come back😧.
I am 3 1/2 weeks PFC, still shedding some. Hair dresser came to house and cut off 1 1/2 inches. Couldn't take the stringyness.. I have an inch of regrowth already..time tick tock, tick, tock...
Be well all...
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AGlimomom, I've been reading this thread since my chemo days in 2012, and I don't recall anyone who used cold caps initially coming back here with a recurrence. (There have been women who didn't cold cap the first time around who decided to cold cap when they recurred.) If you're worried about the cold capping somehow contributing to the possibility of recurrence, there really is no connection. The typical concern of oncologists who haven't kept up with the research is scalp mets, which are incredibly rare to begin with, and which do not occur any more frequently in cold cappers than in non-cold cappers (there is research on this, which one of our group compiled a few years ago). Most of us here did not have access to the Dignicap or other similar system, so we had to recruit friends and relatives to help with the cold capping. For me, it made the experience much better, having two friends with me each time. I had a medical freezer at my facility, so we didn't have to deal with dry ice, which helped a lot. Check the Rapunzel Project website to see if there is a medical freezer available at a facility near you.
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Thanks for the advice, Tunegrrl. I have never colored my hair so I'm not going to start now. I have chin length medium thickness straight hair. I was trying to decide if a trim was a good idea or not. I'll call my hair dresser tomorrow. What companies did everyone else use to rent your cold caps? Was it worth the hassle?
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Hi Can-D,
How did your cold cap experience go overall? I am at a large medical center and they seems skeptical, but supportive. Any tips or ideas? I am starting chemo mid March. I am IDC/DCIS and Stage 1A. Very overwhelmed and do not want to cause issues with my chemotherapy.
Thanks.
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Congratulations Hopful2!! You must feel so great having this part of treatment behind you!! So happy for you. Keep coming back with your progress on regrowth for all of us just starting out.
Anne
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Amapola36, agreed that it will be an easier time with the medical team on board. I plan to try fasting, but the 500 calorie and water diet, not total fasting. I live alone and frankly and too scared of passing out by myself here. The health benefits seem supported in the research and I am not eating that much anyway these days with the stress of all of this. So maybe something good can come of it.
You mentioned acupuncture a couple of times for SE's. I am worried about the small holes/bleeding that is left behind afterwards causing an infection. Have you had any issues with that? I am all for trying other methods to control SE's and you seem to be doing so well, please let me know your thoughts on that. Did you discuss with your MO first?
Thanks,
Anne
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Congrats Hopful2 on having your last treatment!
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33Hopful--good luck on this journey. I used Penguin Cold Caps. It's all overwhelming but SO worth it. I have 70% of my hair. Just a few bald patches underneath on each side and my hair line is nonexistent but no one can tell but me. There are some pics on previous pages of how girls are looking.
Lovesgreenthings--thanks for the tip on the cleaning service. Some of my friends recommended some ladies who do a lot of the houses in the neighborhood. I'm looking for a long term one. I'm glad they have that service though. I should have done that through chemo but I'm well and able to now, just don;t have the time and energy after catching up on everything else I've been missing the past 4 months.
Luvmyys--Good for you on new hair growth. I'm 5 weeks out and see nothing, although I feel the tiniest bit of stubble on my thighs so something seems to be growing. I do have little 1.5 inch hairs but they were growing since Nov around my hairline but nothing in my bald spots. I REALLY want the lashes to fill in. I have about 18 left on my left eye.
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AGlimomom, please read here: https://community.breastcancer.org/forum/6/topics/836476?page=1#idx_26 for helpful information on cold capping. Put together by cold cap user dancetrancer. You addressed your latest comment to Can-D; she started this thread back in 2009, but hasn't been active for many years.
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Tunegrrl, big congrats to you! I haven't shared this, but your signature line was a huge inspiration for me to pursue cold caps. With two 3-year-olds at home, it's been so important to maintain normalcy for them. Thank you for the inspiration, and you continue to inspire us!
Elasto, so glad to see you back. I'm working with my SE specialist to play with the dexamethasone dosages after today's infusion. It will be interesting to see if the blurry vision and general "off-ness" I get are lessened.
Just wanted to share some inspiring news. We started Round 3 yesterday. We were discussing the cold caps with our oncology nurse, we asked her for her opinion if she thought they were working, based on all her experience. Her answer, in a lilting Irish brogue was, "Och, you'd have surely been bald by now." Some of the best red we've heard since this adventure began in December.
If anyone reading these posts is on the fence about cold caps, just do it!
Xoxo,
Ljo
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Lizjo-how funny we have almost identical set ups! Your pink Kmart wide band is same! I'm jealous of the white bands mine are the same but thinner. By the time infusion is done my jaw gets really sore! The only difference I see is that we are pulling my caps down to cover my eyebrows. I wear feminine pads on my forehead with the shower cap over that too. So I might be saving my brows by getting them cold with the very edge of the cap. It's more prep with covering the forehead.
I still shed consistently I started using toppik and it's working to boost my moral!
I did my second DD taxol on thur. Got the usual neulasta pain today. hands and feet look like they escaped SEs this round! I hope! Got red puffy hot face on day 2.! Got a horrible taste in my mouth. Food tastes bland! I did not suck on ice this time! Next time ice in mouth! hard to eat ice with my tight head bands! Blurry vision?got that too! can't use my readers! have to hold iPad up to nose to write this! Blurry vision will pass? Anyone? Taste will come back too I hope. I hear the neuropathy on hands a feet takes forever to repair. My doc told me each nerve in your finger has only one cell. Lots of nerves but don't want to lose any! So I'm not sure if that cell to that nerve gets killed how does that repair? Don't want to experiment with losing more of those cells! getting really serious and brave about the icing of my hands feet!
I got my doc to once again reduce my steroid to 10 mg. I'm doing my fast mimiking diet to combat side effects too much steroid messes with my efforts there. I also got some better (scitzophrenia drug) drug to combat my infusion pre meds RLS..I had horrid benedryl restlessness RLS on ddtaxol 1. With new calming drug I was better able to tolerate the icing of hand and feet this time. We were getting feet down to 66 f and the scalp even lower! So I feel we saved my fingers and toes from further damage! NOTE I also wrapped my finger tips in coband and used thin compression socks and gloves to keep blood flow down in my hands feet. I have elastogel COLD mitts for feet n hands.
My doc said if I got into trouble again with my hands and feet we were going to have to change up my infusions and dosage. I'm so happy I got thru this time. Don't want weekly taxol infusions! Take my advice try to ice and maybe try the compression socks gloves. Eat the ice too.
First photo of my red puffy face lasted one day. I read around and think it's from coming off the steroids?
Skin Rash I posted last time is cured thank god.! I used 5 days prednisone.
Hair totally passable still! photos: the top of head photos show where the toppik is covering my bald spots and widening part. Its hard to see them but you can see the weird toppik beige color in the part line if you really look. I read toppik uses wool fibers.
I want to encourage all you guys who are fretting about patchy balding areas, toppik hides...it's not shiny or beautiful but so not bald! Try it. I am toying with color mixing now. It even covered some of the grey I used to get itcolored.
One more note ...after I got frostbite on my left ear.. I made ear covers out of baby socks. They are shown second to last photo.. that wierd thing is two pairs of baby socks 4 socks. I used the ends doubled them and made a chin band to hold them down. My left ear still hurts from frostbite! Be carful not to get socks wet..wet ears is what might have caused the frost bite!
My head bands and ear baby sock
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Elastogelgirl----I had 4 rounds of TC. As for me the burry vision lasted one week each time. Its seems that I have had more side effects than many who have had 6 rounds of TC. My hands and feet are very painful and numb etc.. I made the mistake one week after last injection to walk about 2 hours each day Sat and Sun since it was warm and felt great to get out. The next 3 days were unbearable pain in hands and feet and a deep inside itching from my head to my feet all over my body! Almost lost my mind before that ended. Weird as I don't know if it was a good thing or bad thing to stir up all those nerves. Also, since I had a BMX each chemo causes lots of pain around my surgery sites such as pinching, burning, pain, swelling etc. As I mentioned on the Dec Chemo thread I have had to take extra steroids after each infusion (so 3 days of oral, then more in premed bag then 6 day pack afterwards-----YUCK I hate those things). I had severe burning of my fingers. They split and peeled real badly (my chemo center did believe in icing hands and feet and they told me that I would not have that issue with 4 rounds of TC---well here I am battling it).
BTW I wish I had known about the fasting prior to chemo---sounds like that is best in helping kill cancer cells with the chemo! Hope your vision clears up soon and that you don't have more hand/feet issues like I am experiencing.
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Hi ladies- sorry for lack of energy to do full thread catch-up! Had some problems, mainly with intense chronic fatigue with the last infusion.
lizjo- Look how beautiful you look in your cap! I agree that cold caps are worth it!! My best friend from college who happens to be an oncologist came to visit me last week, and she said the cold caps were doing well for me! I lifted up my huge combover so she saw my massive bald patch on the left side. I only have over 50% of my hair left after 3 of 6 treatments, but I still go out without a wig or scarf, and that's definitely worth it to me. I'm just hoping that what I have left manages to somewhat hold on through the next 3 treatments and the PFC shedding. Fingers crossed...
Hopfull2- Congrats!!! You are THROUGH! I'm grinning like a fool for ya.
33Hopeful- Sorry about the circumstances that brought you to this awesome little community. Unfortunately, I haven't seen or heard of the cold caps companies you mentioned. I wish you much success, no matter which company you go with!
Pamela23- I hope you're able to manage the LE with the tips from here, and good luck with the rads! (Hopefully I read that correctly... I have "chemo brain" right now). I'm starting to browse through other threads now, too. Still on the fence about lumpectomy versus mastectomy. Leaning towards lumpectomy, but man... rads have some seriously ugh SE, too.
Weekend hugs to everyone. xoxo
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Can I jump in with a question that may have a very obvious answer? Can you ever hope to cold cap by yourself? I know you need support for maximum success but can you every be there by yourself and change your caps, manage it all alone? Or does someone really need to be there with you to help the entire time through every treatment?
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Bratmobile,
Like you, I was hoping to be able to cold cap myself, but it really can't be done. You will be hooked up to an IV (or port) and your movement is restricted for one thing. They need to be changed every 20-30 minutes and tested for their coldness with a special device, if they are not the right temp, then back in the cooler .. . .then getting them snug on your head takes a few tries, strapped on, then get ready for the next one just a few minutes later. The drugs in the IV will make you sleepy as well. All of this I have learned over the past few months of researching this process.
I found a woman to help me and I am paying her an hourly wage, plus some help from friends after they get off work. My retired friends are all busy with their sick family members so they really can't commit to this.
I think the helper will be super busy the entire time, which is about 9 hours total, so some friends stopping by to give her a break will be helpful. Is there someone local to you that is looking for a part time job? The woman helping me is the DIL of a friend. She was a home health aid to someone who just passed away at 90 years old and wanted just a few hours of work a week. Penguin Cold Caps may have cappers in your area if you ask them, but it is very pricy.
I had even thought about placing an ad on Craigslist to see if someone local wanted work. There could be a business opportunity here!! Good luck to you!!
Anne
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bratmobile, if you can get access to a scalp-cooling machine (Dignicap or Paxman), you would need help only getting the cap on (maybe a half an hour of someone's time). After that it is smooth sailing. I hope they are the way of the future. It is so much easier. I think Paxman is still in trials in the US (it is a system from England), but some treatment centres have Dignicap machines. Fairly rare still i'm afraid. Best of luck!
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Elastogelgirl, you rock! Love the skiing pictures, I really do miss that sport, so thank you for sharing. Face plants and all.
Just wanted to add that Toppix available at Walgreens if anyone has one near them. I went online and they have it for $19.00 at the one near me. I am headed out now to Ulta for Wow Powder as my roots are already showing and I am just starting on chemo. Toppix for the inevitable bare spots. I prefer that word to bald. It is going to be smoke and mirrors for a long time coming I think. Keep the pictures coming Ski Goddess, and your positive attitude is a breath of fresh air for all of us. Wish that the U.S. was not so slow in approving cold capping as Tunegrrl pointed out. It really is a travesty for all of us here.
Enjoy your Sunday's all, I have one more day at work tomorrow and then off on medical leave. I can feel the stress leaving as I type this. Sigh.
Anne
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I used the Penguin Cold Caps. I'm six and a half weeks out from my last chemo and wondering when the hair shedding will stop. I really lost very little hair with treatments 1-4. It started after the 5th treatment and really started shedding after the 6th. I've probably lost about 50% of my hair but I do have (did have) very thick hair. When I "comb" my fingers through my hair, a huge number of strands come out. When I wash my hair, it just comes right out when I rinse the shampoo.
My real question is this: When you had the chemo, did your hair die back then -- and it's just taken all this time to actually fall out? Or........is the hair still actively dying?
I'm anxious to know when the shedding will stop. Anybody else go through this?
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I start tomorrow with Pengiuns. I was wondering how much time to allow for cap prep before the change? I see it takes 3 minutes to warm up and then 45 seconds to take temp so I was thinking 8 minutes for the novice cappper. I will be so glad to get the first one over with. Thanks.
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Bratmobile,I did it by myself. I had no family or friends available to help. My husband worked nights. I was the first one to do capping where my treatment was. I hardly had time to prepare/ practice. I lost over 80% of my hair.
Try to get help if you can if not practice practice as much as you can. They have to be cold enough and tight enough. I didn't use any meds that could make me drowsy. Ask if any nurses can assist. It's a ton of work. I think I would of had better luck if I had help or they were cold enough. I used Arctic Cold caps. See if the center has a medical freezer.
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Bratmobile,
I had a helper but just as I was finishing up my TC treatment, i met another capper who had just transferred mid-treatment to my cancer center. She had used a helper the first time or two but completed her remaining treatment capping by herself. She had beautiful red hair. She was very organized in the way she managed her cap changes and stayed pretty busy, but she did have time to talk with me in between cap changes. I remember she was doing AC which is a tougher regime than what I had, but she was doing very well with shedding. So it can be done if you're really determined.
Good luck🤗
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Do you have someone helping you? It's impossible to get these things on by yourself. Your helper should take the next cap out around the 23-24 minute mark. Test the temperature, knead it and then remove the cap that's on your head. Be sure to use the "strips" that are provided to make the cap tight by your temples. You should practice with them tonight before your treatment tomorrow. Do you know that you are supposed to have them on for about an hour (during the pre-meds) before the actual chemo starts? And......that you need to keep them on for about 4 hours once you're finished? If your hospital will allow it, take an electric blanket with you -- it made a HUGE difference for me in being able to tolerate the cold caps. Also........be prepared that the cold factor from having the caps in dry ice is significantly colder than the cold factor from being in your freezer at home. When the first one goes on, it's a shock to your system and will be very uncomfortable. Once you get through the first one, your head will be numb and the next ones won't be as hard to tolerate. And.......the next chemo sessions won't be as hard because you know what to expect. I found that sleeping (20 min cat naps) between cold cap changes made the process easier for me vs. trying to fight the sleepiness of the benadryl and "chat" with the person who was there to change my caps for me. Getting the caps on really tight (which isn't easy) makes a HUGE difference in how well they work. Feel free to email me back if you have other questions!
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Bratmobile,
I've managed to get started on my own for the first couple caps, but the hardest part for me is putting them back in and getting them packed in the ice, and rotated so the next coldest cap is at the ready. Doing the first two caps helps give my friends some extra time to fight morning commute traffic into SF, and makes it an easier "ask" when I'm lining up help. For packing and rearranging caps effectively, you could really use another body. I get IV and IP infusions on two of my three days, so I'm tethered to the IV pole at both chest port and my hip, so I'm not too mobile.
That being said, if I can get up 1-2 times to wheel out to the restroom, I figure I can get up to change a cap or two if I have to, but it's a lot to keep track of. And I can only say this confidently because after 8 infusions, I've changed a lot of caps by now. Even hiring some help for the first day may be a good idea.
Oh, and for my friends, I would send this "orientation" video on YouTube. There is a series of three that gave some great insight into what they can expect:
https://m.youtube.com/watch?v=IyEoFCthWMMHope that helps!
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AllisonJax, most of my shedding started after chemo ended. I was reading that some ladies were shedding for 3-4 months PFC, but I think I broke all the records. I was getting anxious, as my shedding lasted about 8-9 months PFC, and then it abruptly stopped like so many before me had described. I estimated I had lost about 30% of my hair, but no bald spots, just thinning. I also think it was noticeable only to me.
Hang in there. The shedding will stop.
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AllisonJax-I'm almost 6 weeks out and used Penguin too. I only had 4 rounds of CT but I'm still getting more out than I did even after round 2 & 3. I feel like a get a couple combfuls out each washing and lots of shedding with my daily combing. Please keep us posted as to when it stops!
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These are pictures from the morning before my first round of TC in January. I thought I would post some pictures to help compare what I look like after two rounds of TC using the Penguin Cold Caps. My 3rd round is scheduled for tomorrow.
The following are pictures taken yesterday. I had my "Big Shed" right around my 2nd round of TC. That lasted about a week and then slowed. My hair is not as healthy and has thinned. I also have about 2 inches of grey root growth since I haven't colored since the beginning of January. It's also frizzy and broken off a bit. It doesn't look great, but I'll take it over the alternative.
I just hope I don't have another "Big Shed". Not sure my hair can take two more rounds of this stuff!
I hope you all are having a great week so far!
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