Cold Caps Users Past and Present, to Save Hair
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Hello ladies
I just wanted to say that I respect and appreciate all of you. You go through all of this however you still try to be strong for those around you.
My mom has a stage 2 BC and doing the FEC-T protocol . She’s been cold capping and she’s done 3 out of 6 session . Her 4th is next week ( taxotere ) and regarding her hair it sheded A LOT after first infusion and then it slowed down . Hair fall is still obvious and she has a huge bald crown but she hides it with combing technique . My question is, will the hair fall be less when she starts on the taxotere? I hear she’ll shed less and hair growth starts on taxotere . Please help , do you think she still needs to cold cap or will it completely fall
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I too am on my second time having Ca....but metastatic IV in various spots in my bones. Since it's Her2 I'm on taxol, Herceptin and Perjeta for 6 mo.....2 on 1 off weekly.....but after almost 4 months of treatment and using the DignyCap......I have lost 2/3 of my hair....and it's still shedding....ugh!!! I went bald b4 so I didn't want to again...I'm quite careful with it but it is long and past my bra strap and tangles super easily. I'm now wearing it in a skinny back braid....as I have lost so much everywhere. I'm so impressed with your hair retention.....don't know....but am assuming its' been an improper fit....We have had a hard time fitting the cap on the top of my head snuggly....but still....at least I can see my dark hair around my head.....which is a good thing when all other body hair is gone. I would have cut my hair shorter befor treatment had I known I WOULD LOSE so much hair....
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Lovemomy and Anthroliz, welcome to Breastcancer.org and thanks for posting! We know you'll find Breastcancer.org to be a very helpful, informative and supportive place. Please, come back to to let us all know how you're doing.
Best wishes,
The Mods
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hi to you and your mom--she should keep capping thru all her infusions - even with the hair loss so far -capping will help with sooner regrowth. I capped with Penguin caps thru 4 rounds of taxotere and cytoxan- kept 75-80 percent of my hair with capping- most important is the tightness to the scalp--good luck, Kaylie
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I hope it's okay to ask this here...otherwise, I'm sorry and please delete.
I'm not sure when yet, but I'll be starting a Taxol/Herceptin regimen soon and because I don't want to tell my 90-year-old parents about my BC, I'm worried about losing my hair. (otherwise, I'd be rockin' bald with wild-style wigs)
Is there a particular brand/style/type of cold cap y'all recommend? How do I choose?
Thank you.
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Batya, I think all the types of cold caps work well with taxol/herceptin. I used Penguin cold caps, and my facility had a medical freezer so I didn't have to buy and lug dry ice. The way Penguin caps are constructed makes it easy to fit to your head. With the newer, "machine" cold caps, the whole process is easier but it can be hard to fit the caps properly to your head. The fit is very important to saving your hair. If you go to the "Rapunzel Project" website, you will find a list of facilities that have a medical freezer or offer the machine cold caps (such as Dignicap).
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BatyaD I used Paxman because my oncologist's clinic had them onsite. They worked great, but people have good success with lots of brands. For Paxman, you need the clinic to have the machinery. No 'refilling' ice packs or chilling anything because the machine does the chilling. You do need to be fitted accurately. In my case, I used a size medium inner cap and a size small outer cap, weirdly, but it worked really well for me.
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Thank you for your replies. I'm going to contact the Rapunzel Project and do some research on these. Looks like chemo will start in about 2 weeks.
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Batyadid - I switched clinics because the one I started with would NOT let me do cold capping and I was not very comfortable with the oncologist (language/cultural barrier? unsympathetic to my concern of hairloss, SEs of chemo....). Both the surgeon and oncologist at the clinic I switched to were very supportive, but said they could not help me with it. They said I would be their first patient to do cold capping. I really liked both the oncologist and surgeon there. I used ChemoColdCaps ( they are the ones who started the FDA approved DIGNICAP). While I was disappointed with how much hair I lost, both the surgeon on oncologist were impressed with how much I still had, and how quicky it came back. I think they even started to advocate that the clinic provide DIGNICAP or other brand at the clinic. I think the problem I had was my large head and that the caps did not fit well. When I sent a picture to Chemo Cold Caps, they agreed. The caps were hand made and only one size(with some variation), but they sorted through their stock and sent the largest ones they had, before treatment started. You should check around for the pricing and availability of dry ice. I think I found a 50 cent/pound difference where I am, it really adds up at 70-80 pounds per treatment. Also, there was no pellet dry ice available, so I had to smash the dry ice ( you fill the caps with this). CHemoColdCap has/had some sort of agreement with AirGas for reduced pricing of dry ice, but it turned out not to be available where I lived. I wich I could remember the name of the woman I talked to at Airgas, she knew all about its use with cold capping, and gave me some tips about breaking it up for pellets etc. It was a lot of work, but I'm glad I did it and had a lot of friends to help me. Keep track of all your receipts. I had so much medical that year, I had enough to deduct from taxes, including the cold-capping. Good luck. Many people have posted very impressive pictures of the results of cold capping.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
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ok ladies I have a question - have any of you got hair extensions after cold capping - I feel like my hair is so thin looking I’d like to get some extensions to have it look a bit thicker until it grows out and thickens up - I finished chemo oct. 22 so I was thinking maybe in April sometime before I go back to work. I feel like my hair is sturdy enough for them but who knows. Just thought I’d see if anyone has any experience with extensions after cold capping
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BlueGirlRed--thank you for all that information! How do you carry 60 lbs of dry ice? That's how much Wishcaps said I'd need!
I'm going to use Wishcaps as they said I'd be able to manage it all on my own. I don't have anyone to go with me and the other companies charge something like $800/day to send a nurse to do it. And I was told Medicare doesn't cover this all yet.
Has anyone here used Wishcaps? What was your experience?
Also--has anyone tried r-lipoic acid to stave off neuropathy? Someone mentioned it and my oncologist said it was fine to take during chemo and give it a try.
Thank you!
Looks like first chemo is by IV on 3/11 followed by Port placement 3/13 (just the way the doctor schedules are).
This was a serious wait...wait...wait...wait some more....wait...wait....now HURRY UP!!! Making me more nuts than I already was.
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BatyaD: These supplements were recommended by my oncologist to stave off neuropathy: L-glutamine, special "Neurosol" tabs, specific B6 and B12 and Alpha Lipoic acid.
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Hiking Lady--you took them all during chemo?
Any brands that you used? I'm looking at Dr Best for the -lipoic acid
How much of each did you take?
And did they work?
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Re: supplements for neuropathy---I messaged you just now. Can't remember brands or much about dosage. A naturopath guided me, and also the nurse navigator and triage nurses at my oncology clinic.
Did the supplements work? WELL.... who knows! I had some neuropathy. Maybe I would have had even more if I hadn't taken them? Some numbness of feet, but not horrible, and it didn't adversely effect my ability to walk.
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BatyaDid - I do not know anything about Wishcaps. I had help loading/unloading Dry Ice and several people who took 1-2 hr turns helping me with the caps. Give AirGas (they make the Dry Ice) and see if they can help with delivery or maybe have pellets in your area. First caps went on about an hour before chemo, continued through chemo, and then for a few hours after chemo. I picked Dry Ice up the night before because treatments were usually 8 or 9 AM, and it took a while to smash the ice, pack the caps, and pack the cooler, drive to clinic. I had to get up early to smash blocks since pellets were not available. (easy to smash, but one more stressor on an already bad day). You need good gloves to handle the dry ice, do not use bare hands!!! I put ice in cloth bag and used rubber mallet to make the "Pellets" for the caps. I think cold capping would be hard to do on your own, especially when you are tethered to the chemo chair. Once I was home, I think I could do the last 2+ hours on my own, but not while at clinic. I think I changed caps every 20 minutes or so. There were 6 caps in the cooler rotated like a volleyball team. Maybe the WishCaps figured out a better system. Will the clinic let you stay there for the entire capping time? You might not feel like driving home. Chemo Cold Caps sent me everything, incuding the cooler. I had to send cooler, caps, back when all done, they provided prepaid postage label. I did redesign the foam protector for forhead and ears, did not like the idea of soggy panti liners on the ears. I think I posted a picture on this site Aug-Sept 2016. With the Chemo Cold Caps. A lot of people on this site mention Penguin, and I think a few had DIGNICAP (or something similar) provided by the clinic. Good luck to you, hope everything goes well.
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Thank you BlueGirl. I didn't know about breaking up the ice. That'll probably be my favorite part as I really, really, really have been wanting to hit things since this all started.
I wish I had people who would help like that. I don't. I'll have to manage. Going to go search for my mallet. And ordering gloves now on Amazon. This is all overwhelming.
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BataYaDid - the dry ice smashes easy. I used old cloth shopping bags so it would not scatter. You just need enough to fill the baggies that go inside the caps, and the various pockets between blocks in the cooler I destroyed a few of the bags doing this. Has WishCaps given you any supporrt/training or other materials? Do they supply anything more than the caps? Did they give you a thermometer to check temperature of cold caps? I would ask others on this forum and the forum Chemotherapy- Before, During, and After , if they have any tips for working with the DryIce, especially since you are doing this with out any help. You might check with cancer support groups in your area or other organizations that support people in their community. While the person might not be able to help you with the caps, maybe they can help drive, lift/load materials, help check the temperature of the caps etc. You do not want to let the caps get too cold , so do not put them in the cooler too early. I think I put them in 2 hours prior to needing the first cap. ( I think no lower than -35 Celcius, and no higher than -20 degrees Celcius but check what the cap provider says). Most people have bad day(s) with chemo, mine was day 3 (infusion day being day 1)
I used a lot of the tips that Tiffany posted Dec 29 2015, and it is where I found out about cold capping . A lot of what she posts has great tips for dealing with/preventing side effects
Tiffany's Twenty Terrific Tips for TC Forum: Chemotherapy - Before, During, and After
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Thank you again. That was really helpful! WIshcaps is sending lots of info with the kit-and-caboodle and they're available by phone regularly. Tomorrow I'll call and get the info on where to get the dry ice. I'll see if maybe the place can deliver it. I'll have lots of fun smashing it, that's for sure!! I'll just visualize smashing all the tiny itty bitty cancer cells that might be in my body (though no one knows if they're or not for sure). I'm going to ask the oncology social worker if she knows anyone/place that can help me with it. It seems like whatever time my chemo is, I'll be spending the whole day doing it.
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BatyaD Check with the clinic to see if there is a "nurse navigator" type person for cancer patients, that person may have various contacts even if the clinic cannot provide direct help with the cold caps. Help could come in many forms. Call around for pricing and availability of dry ice. Availability and price varied where I am. Maybe even call AirGas, they make dry ice. Someone may have tips for working with it. Don't smash it into powder, just "pellet" size to put in the baggies that go in the caps. I wish I could remember the name of the woman at I talked at AirGas (this was 2016). She knew about its use in cold capping. She also checked to see if there were any AirGas Dry Ice distributers in my area who might have pellets and maybe a better price than the grocery outlets. https://www.airgas.com/services/packaged-gas-supply/dry-ice The cheapest place in my area was WINCO, and they always had a good supply. Does your cooler have wheels and a handle to pull it rather than trying to carry it? Another thought for Dry Ice are those outlets that sell hunting/fishing supplies. If you cannot find someone to drive you, is taking a cab an option? Maybe the cabbie could help with lifting etc of dry ice (check first).
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I used Penguin cold caps thru 4 rounds of cytoxan and taxotere last year and saved 80 percent of my shoulder length hair and lost maybe another 5 percent thru ongoing shedding over the next 5 months before it tapered off- My daughter was my partner- you do need a commited partner to help you- the timing and correct temp is very important -we had to change every 25 minutes for 7 hours each time- it did become grueling the last hour or so and the tight fitting of the caps is the most important factor- I did lose hair along my side and lower hairlines but couldnt tell till I realized it was growing back. I did not agree to the Adriamycin option as knew the hair loss would likely be much greater with that added in. no one but my daughter could tell - and I am so glad I stuck with the capping as keeping most of my hair made all the difference for me emotionally in coping with treatment--even if you lose more hair ,capping will help it get starting in regrowth sooner--good luck and go for it--hugs,Kaylie
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ps I used pelleted dry ice in a rolling cooler --Penguin supplies the cooler- I found 45 lbs to be plenty and the company took back what was left--usually 5-8 lbs for a rebate each time
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Can anyone provide peresonal stories of their cold cap experienced with AC every two weeks X 4 doses and then taxol once a week x 12 doses? Did you do the cold capping through the taxol treatment? Can you do it weekly like that? What cold cap company did you use? Was it successful? I have hear the Adriamycin is the worst success with cold caps and am just looking for someone who continued with cold capping anyway given a similar regimen.
Thank you
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I didn't have your regimen--hopefully someone did, and can answer your question. I used Paxman because my oncologist's infusion clinic had the machines all set up and (rented from Paxman?) organized, so it was the one I used. Worked great for me, but I was TC x 4. If your clinic has the Paxman system, or another one that has machinery all set up and in place, you'd definitely want to use the one they provide.
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thank you! I hope someone does too. I am looking at the penguin cold caps because my clinic does not having the Paxman or the dignicap.
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Lauren, I did weekly taxol with Penguin caps back in 2012. (No AC.).I don’t know if anyone who cold capped on the AC/T regimen is still active here. There is definitely mixed success with AC and cold caps. Some do pretty well, and most seem to think it was worth it even if they lost more than 50% of their hair. When I was about to start chemo in 2012 I read this thread from beginnng to end...it’s a lot longer now, but you could try going back a ways and reading about experiences of others who did AC/T.
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Bheg79 - I had six rounds of TCHP and since I ended up losing a lot of hair on top of my head, I went with a crown topper. It matched my hair color perfectly and no one knew it wasn't my hair. I went with the synthetic, but I had to buy four of them over the course of a year or so because each one only lasted about 3 months before the ends started looking terrible. In hindsight, I probably should have paid the extra money for real human hair. The topper has gotten me through the last year and a half. I'm still waiting for the hair on top to grow out to the length of the hair that I didn't lose, but since I still have a ways to go, I went ahead and ordered a hidden crown hair extension. What's great about that is that there are no clips to damage your hair even further. I purchased the regular 16" hidden crown and it's beautiful. The only downside is it's a little heavy because there's so much hair and I don't like to wear it all day if I can help it. Because of that, I went ahead and ordered the 14" Daydream which is also made by hidden crown. I won't receive it for a couple of days, but I'm excited to try it.
The image on the left was taken last July, one year PFC. The image in the center is with the hair topper and I think it was taken around Nov 2018. The image on the right is with the hidden crown and was taken Jan 2019. (I just noticed that when I post it, the alignment is thrown off but I'm sure you can tell the difference between the three.)
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Soxfan, you look great!
Lauren, I had 12 weekly taxol infusions followed by 4 A/C infusions two weeks apart. I used Penguin caps and made it to week 9 or 10 of taxol before I gave up. I still had hair but it got too thin for me to want to keep up the capping regimen (and I think by that time in chemo I really didn't care anymore). My MO and nurses were impressed though with how far I got - they'd only had two other cappers before. About a year later the hospital began offering cold capping services - I like to pretend I had something to do with that so my saga was not in vain!
You definitely need a good helper with Penguin caps - someone who can stay with you for at least 6-7 hours on chemo day. It's helpful too if you can get a private room in the chemo suite as you're ripping off lots of Velcro every 20 minutes and switching ice and caps - it is a production! After my first infusion, I was just always given a room, which was for other patients' benefit as well as mine. I always konked out as soon as the Benadryl kicked in and my husband had to wake me up for each cap change. We even found a back hall exit to the parking garage so I didn't have to walk through the crowded lobby with my cap on.
As I’ve said before, losing my hair was the most emotional part of cancer for me - the only thing I felt true anguish over. In hindsight though, it was such a short amount of time and if I’d gotten a decent wig I might have done better.
If you're determine to try to save your hair and it works for you, it is worth it. I was able to work an extra almost 3 months before anyone would have noticed, which was a great relief for me at the time. But as awkward as it was to be bald for 6-7 months, I ended up loving my short hair and natural color and have kept both, so either way (capping or no capping) can be a win.
Lanne
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Lauren,
I had that regimen last year and used DigniCap through all 16 infusions. I also iced my hands and feet during Taxol to help prevent neuropathy. I posted pictures of my hair loss on 12/31/18 (it’s on page 695). Just looking at the photos you’d think cold capping was not successful for me, but I feel that it was and am so glad I went through the pain and expense to do it. My hair today is healthy and growing in pretty quickly. I have over 3 inches of new growth. Hope I don’t have to, but I’d do it again!
Ki
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Any experienced cappers out there in Bucks County, Pennsylvania who would like to give back and volunteer for new cold cap patients?
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Not surely you are still looking for answers, but I had AC/T and used Penguin because it had the best success against AC. Only made it through 2 ACs before getting an infection and was moved on to weekly taxol. Next Thursday is my LAST treatment and I still have hair, although the crown is patchy and I have hair loss at my front hairline ear to ear. Still able to hide and style, but my hair is DRY and FRIZZY. This curly girl can’t wait to have a deep conditioning treatment and fix my color. I dill likes wear a crown/halo topper til the bald areas are ready for some extensions.
Any former capper know when I can go back to warm water showers and my hair dryer?
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