Cold Caps Users Past and Present, to Save Hair
Comments
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I start treatment in a week in the SF east bay. My husband is my loyal nurse, bless him! I am at a hospital with no freezer so bringing all my stuff. So appreciate all the suggestions. Oncologist says go for it, she has had three patients use the caps and all kept their hair. I am interested in an experienced "capper" to help with a practice session or on the first day of chemo, 8/25. Caps should arrive 8/18 or 19. I am willing to pay a stipend for the help. I am new here, assume it is easy to figure out how to receive and send messages, yes? Thank you all for taking time to read and share on this site.
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- Daye - you look GREAT!
So many great posts over the past few days. Harrysmom, I LOL at the story of you and your hubby!
I am 2 years PFC and am still so happy I did cold caps. I'm highlighting my hair every 5-6 weeks with no problem. It has totally filled in and is prettier than it was BEFORE caps! This is because the new hairs have slight curl to them, so my baby fine straight hair now has more body and slight curl. It looks thicker than it did before chemo! I just love it.
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Barremom - Daniella is mistaken. I had chemo at Hunterdon and unfortunately I am not familiar with your area. The plan I had in place was to ask 4 friends. Two served as my cappers and two were back-ups in case the original two could not make it. As it turned out, the original two did the entire job and preferred working with each others as they had become a well oiled machine.
DLove - Tippy Toes Happy Dance! Congratulations!
Daye - Lookin' good!
Ladies with Bags - I saw your photos and I'm not impressed. I know you're worried. That feeling of the hair just falling out is stressful. Still, I had much more hair loss than you and made it through.
Jennifer - Scroll through the posts. There is a woman on here who is a professional capper and may be able to advise you. Hope had a professional capper for her first time until they knew the drill.
Someone commented that the medical professionals told her that the cappers thought their hair looked good when it did not and the capping wasn't worth it. I am not of the illusion that my hair looks good. I am of the impression that I have hair. I was never bald. Never needed a wig. People who don't know me have no clue. And most importantly, I never had the trauma of seeing myself bald. My hair is growing back rapidly. I have some long hair and some spiky short curls. I am certain the folks at my chemo center talked about how bad my hair looked and how happy I was and how it wasn't worth it. Keyword: Happy. For me the capping got me through the worst part of chemo. That's my story and I'm sticking with it.
Hang tough Cappers!
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I'm with Warrior Woman. My hair doesn't look great but it is still on my head and folks tell me they can't tell that my hair is thinner. Hair loss is not the intended treatment of chemotherapy so why the hell shouldn't we fight back to retain our hair.
I don't think I shared it here before but I saw how upsetting the hairloss was for everyone else in my chemo group so I started researching why it was so devastating; heck even my own shedding was upsetting to me. Images we have from media of shorn heads are of Romanian orphans combatting lice and holocaust prisoners, Sinead O'Connor was a rarity.
Research has shown that hair loss from chemotherapy is one of the top two concerns of female breast cancer patients, to the extent that some women will decline chemo just to avoid this side effect. Others have hypothesized that it is a primaeval instinct at play which causes such distress, that having a full head of hair is a sign of sexual fitness. Think about that, the term "crowning glory" is used sometimes to describe women's hair, hair is part of our identity. The other thing is that losing one's hair makes many women look more masculine, talk about an ego blow. Even small children use hair as a signal of gender; just yesterday my 4 and 7yo sons were confused by a little girl wearing a pixie haircut, why wouldn't "he" play battle with them?
Our hair also surrounds our faces, the part of the body that people most look at. They believe our ability to read written language comes in part from our ability to read human faces.
Losing head hair is very noticeable and de-feminizing, doctors are wrong to dismiss this patient quality of life issue. Oncology practice is still catching up to the fact that most of us survive and still treat us as if we are f--cked either way, with or without treatment, so they leave us without our hair, without our fertility, with nerve damage, with muscle pain. It isn't an okay attitude to have and we have to fight to change it.
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barremom - sorry I confused an earlier post by someone else in NJ being treated at Memorial. I guess I'm trying to process too much information at once and getting confused these days. I hope Jane is helpful to you.
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Agness and warrior woman - I put my phone down and clapped after reading your posts!!! You both nailed it.
My hair (to me) looks like absolute crap. I have about 2 inches of disgusting gray roots, it's limp from no styling, it's much thinner than it used to be, but I still have hair so I don't care. I was more afraid of losing my hair than I was of having chemo. No one else knows that I am going through chemo and are shocked when I tell them. Mentally, this has made going through this more tolerable for me, it doesn't feel as invasive.
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Totally with you Wyomama! Hallelujah agness!
I don't care if I feel sick and am bedridden for months, the hair thing is too much to bear, although, there may be a point where no hair looks better than what I may have. We'll cross that bridge if we get to it. To have everything about you shattered, inside and out--your confidence in your body and your sense of security in your own health and THEN have your external sense of self destroyed, even temporarily, is more devastating than treatment needs to be. My male MO dismissed it as "a lot of work and it doesn't work". Well, we will see about that. (He had a dirty, greasy tie, so maybe appearance isn't top on his priority list. Ha!) Don't they want their patients to be fighters?
I dropped off my cold caps to the "staging" freezer to get them cold, and then they will be moved to the deep freezer the day before treatments. Got my supplies ready, just need to pack them. UC San Francisco has a whole system set up with freezers, rolling coolers, and special seats in the infusion center, so it's much easier than some other folks have it with dry ice, etc. Hubby has already almost broken my neck during our practice run, good core workout though, trying to stay upright! We will just see how it goes. Starting chemo in three days-- had my chemo class today. Feeling scared and emotionally bruised. I think I'll feel better after the first tx is over.
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Well said, cappers!!! Gatomal, it will be better once you get that first treatment under your belt and know more what to expect. I was so happy I lived through the first round (which was completely uneventful) that I bounded up the next morning, hopped on the treadmill and never looked back - I really started at that point to believe all would be just fine. So rock that cold cap this week, you've got this!!
JeniferE, welcome to the board! I know there are a few cappers in the bay area so hoping someone can step forward to help you get started. I know it made a big difference for me to get some 'training' but don't worry this board is loaded with LOTS of ladies who just with their husbands figured it all out in their kitchens and did just fine. We're here to help with any questions you have. Since your onc has had patients use the caps, her PA or nurse may be able to reach out to them to see if they can help you. I know my surgeon's office has given my name to a couple of prospective cappers and i'm always more than happy to assist. good luck to you!
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JenniferE - Hi...I'm a JenniferE as well...LOL!
I started chemo on July 17th....have had 2 treatments.... We didnt have "professional" training....we just watched the video on the PCC website a few times and practiced at home...we did maybe 4-5 practice applications. Its really not that hard. We took a lil long re-adjusting the caps during the 1st treatment... By the 2nd treatment....my fiance had it down pat!!.
There are a lot of supplies for the whole process which is listed not that long ago on this thread. I know I answered someone recently...
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Hi All- I was notified today that I was chosen to be part of a clinical trail for PAXMAN cold caps. I wasn't expecting to be chosen (due to my history of bad news over the last few months!) and was all set to use PCC. I will cold capping with you all, just using a different route
Hopefully it works as well as PCC! If anyone has any information and or tips on PAXMAN, please let me know.
TXS!
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barremom, that's great news! I know Paxman is a newer technology so you will be a real pioneer! Looks like a lot less work than the PCCs, I hope you have fantastic results! I'd say to follow the PCC hair care protocol during treatment if you can. Yay for you!
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I'm starting my chemo next month. My hospital has a freezer, and I got in touch with PCC rep. I'm still debating if I should try or not. I'm getting TC for 4-6 cycles. My doctor said I'll likely lose all my hair completely with this chemo without cold caps. Reading the hair care instruction, I'm not sure if I can follow them all. Especially I play ice hockey, and am hoping I can play when I feel ok. It says it's not good to get head sweaty, also no hat (helmet). I may not have that much energy anyway during the treatment, but this is something I love to do, and always looking forward to it....
Has anyone been able to continue doing exercise during the treatment? If anyone can provide any advice, I'd appreciate it.
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I enjoy reading posts from you all. It is encouraging. Only a member of the club can really understand. Thank you.
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hockey- I went to the gym 5 days a week and did the elliptical for an hour. Sweated and still kept my hair. Knowing what I know now after the fact I am glad I did the caps. I have two friends struggling with permanent hair loss from taxotere.. Doctors say it doesn't happen but it happens.....so unfortunate. It has been over three years for both of them and a lot if their hair never came back. Makes me so sad for them....it is a huge source of stress and sadness for them both.
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HockeyCat - I definitely feel well enough to exercise, but have limited my exercise because I am fearful of my head sweating. This is the first year in 11 years that I havent played tennis during tennis season. I hope to get on the court PFC. If you decide use the Cold Caps and play, I do recommend getting thin hairnets...something to protect your hair when taking on and off the helmets....same when doing the cold caps. Strands get caught or pulled on....and trust me every hair becomes precious.
Are you doing Taxotere/Cytoxan or Taxotere/Carboplatin? Make sure you get the Neulasta shot a day after chemo.....otherwise you probably wont have the energy to play. It will keep your blood cell count high.....so you wont get sick and fatigued (well you still might, but definitely helps!).
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mdg - So sorry to hear about your friends... it must be very hard for them. I'm glad to hear you kept your hairs with lots of exercises. Very encouraging. I love your blog!
Jennliza - thank you for the advice. I'll definitely get thin headnets. I'm doing Taxotere/Cytoxan, and getting a shot on the next day to boost my blood count. Also taking steroid a day before, on the day, and the day after.
As long as I feel well enough, I'm going to play hockey once a week, and run/walk a few times a week. I'm so bummed that I got in Nike Women's Half Marathon in SF this year, but won't be able to run...
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Hi ladies, it has been awhile since I checked in with you all and I am glad to see more ladies with AC/T are finding this thread! I am 16 weeks PFC and finished up my surgery and radiation so I am all done! God is good! It was fun going to radiation treatments WITH hair- let's just say the nurses and RT's were shocked!
I have been invited to speak with other survivors at an event hosted by the Cleveland Clinic next month and they want me to share a bit about cold capping- I am so excited! My hair that shed is already well on it's way to coming back in and it was so worth it!
Daye- so good to see you looking great! WarriorWoman, Dance Trance, Hortense, and Mdg- all you ladies were so inspiring and helpful on this thread- thank you so much!
If you just found this place, like I did, searching for hope and trying to believe that it is true- YES- it's true- you don't have to be bald at the end of your treatment!! Here is my story:
http://www.wkyc.com/story/news/health/2014/05/05/cold-caps-penguin-caps-chemo-hair-loss/8730573/
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Congrats deepcreek - and great story!
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Deepcreek- Congrats to you! what a great news piece and what incredible support you had:) You give us newbies hope!!! Thanks for checking in on us!
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Deepcreek-Please ask them to change the information they provide on the Chemocare website. Many oncology nurses use this website as a resource.
I have sent them emails to no avail. The response I got was that they had 1 doctor review the information! This is way too important for chemo patients well being to have only 1 doctor deciding whether or not to disseminate info. on this technology.
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mdg, my MO also shared with me that she has three patients who were on Taxotere who have ended up with permanent hair loss. They are, understandably, upset with facing a lifetime without hair. Yet another reason to be glad we are cappers!
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Rogue....I know. Many MO's are quick to say "caps don't work" or " you will get scalp mets" but they never seem to mention the risk of permanent hair loss. My one friend tried to use caps...her MO said no way and promised her she would have beautiful hair after chemo. Unfortunately she lives with male pattern baldness and her hair won't grow longer than an inch in some areas. She is devastated. I wonder how my hair would have come back if I had not used caps. I have noticed than body hair in other places is far thinner/less since chemo. That scares me that I would have had the same effect on my head if I had not used caps. So glad I used them. It was the right decision for me.
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mdg - I agree with you. My body hair is noticeably thinner, so I would guess that the hair on my head would have been also. I am very glad that I used cold caps. I have met someone who was left with a mess on her head after chemo, whispy hair and bald patches. I've seen other women with this and wondered if they had been through chemotherapy also, but didn't dare ask.
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Both my next door neighbor and mother in law have permanent hair loss from their chemo. When I only know 5 people (myself included) on the same chemo regiment and half of them have serious permanent hair loss, I don't really consider caps a risk at all, I look at them as an insurance policy!
I had a friend in town last week who is an MRI and CT tech, has been for over 15 years now. When we talked about scalp mets, he told me that he has seen a scalp met ONE time in his entire career, in all forms of cancer he's seen.
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With the few studies out there on the risk of permanent hair loss associated with Taxotere/Adriamycin saying it it 3 to 6%...I am amazed at the number of people here that others know who have permanent hair loss effects. Wow. It makes one wonder if that stat is wrong, and the risk is actually much higher. So thankful I did the caps.
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The risk is higher of permanent hair loss from taxotere. They just don't tell you or publish it. If the percentage is SO LOW, why do so many of us know people that are effected????? It has clearly been under documented and reported. When my friend informed her doctor of her permanent hair loss from taxotere, her doctor walked out of the room. Her doctor should have had to report the adverse event....she did not want to deal with it though. Her attitude was "I saved your life and you are worried about your hair?". They clearly DON'T get it. People should be informed and people should be offered cold caps as an option at their own expense. It's sad this isn't happening and that only some diligent ladies luck us have researched this on our own. I hate to see my friends suffer with permanent hair loss. I feel so bad for them. I can see how much it effects them.0 -
That is so sad mdg. I just hate to hear about that. It has to be devastating, to say the least.
I suspect if cold caps were a covered expense under insurance more docs would be upfront with patients about the risk of permanent hair loss. As it is, my guess is if they tell them some patients who could not afford cold caps may choose to forgo chemo altogether. I sure do hope these trials show enough success to establish that insurance companies should cover it in lieu of wigs.
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My body hair is NOT thinner! Boo Hiss! In fact, I'm as hairy as ever. I enjoyed those few months of not shaving while they lasted.
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Hi, everyone :-) I wanted to say thank you very much to all of you that have taken the time to post your comments/suggestions/experiences on this thread.
I found out I had breast cancer on June 16, 2014. My Mom had breast cancer 3 different times, she lost her battle the 3rd time which was in 2011. With my Mom's history, I kind of expected I'd get breast cancer at some point. I didn't realize it would be so soon. I turned 49 in March. I thought I had a good 10 years, but not the case.
Because my tumor was a little less then a cm, I thought I could have a double mastectomy and be done with this. Unfortunately, my cancer is triple negative, so 2 different MO's and 2 Breast Surgeons said I needed chemo.
My first question was if I would lose my hair. The breast surgeon said yes, but thank God, she mentioned cold caps and possibly being able to save my hair. She couldn't give me more information then that.
So, as soon as I got home I started looking online for whatever information I could find about these cold caps. Thank goodness, I found this thread!! And the Penquin Cold Cap website.
When I went and met with the MO, I knew exactly what was involved in using the caps. I asked my MO if I could use them, he snickered and told me that I could, but I was probably wasting my time and money.
Now, I am determined to prove him wrong and show his office staff these cold caps do work. At least they have so far.(YIPPEE!!!). I have only had 2 chemo treatments, but it has almost been a month since the first one. I have probably lost less hair then I normally would have because I am only washing it once or twice a week and I have not used a blow dryer or straightening iron.
I hope I haven't bored anyone, but I wanted you to know my story and give others my experience with the Penquin Cold Caps.
Thank you again!!
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Hi Lynda- What a great post- I also am 49 and a part of me always knew I to would get breast cancer-I was hyper vigilant about detection and still it got to me early June 2014. I also thought I had another few years and with all my hyper healthy ways I certainly would get ahead of it. HAHA. I start chemo 8/28 and I am to trying to save my hair although I will be using a different system (Paxman cold cap).
Can you share with us any tips that worked well for you while capping? Any special shampoos, vitamins? We'd all like to be as successful as you!
TXS for your post
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