Cold Caps Users Past and Present, to Save Hair
Comments
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Hey all! I remember reading either here or in the cold cap literature about getting enough protein being helpful in retaining your hair. I know that when having surgery, chemo, rads, etc., your body is repairing itself and is in overdrive and needs more protein. I was watching the TODAY show (yeah, I know, this is not how I usually get my medical info, but bear with me...) recently, and Joy Bauer the nutritionist was talking about this. She said to figure out your protein needs, just half your body weight - that is how many grams you normally need per day. Then she said if you are having surgery, etc., add about 20 grams a day to that to help your body heal itself. I thought it was a pretty cool, easy formula to have in mind.
I discovered yesterday that Ensure has a high protein shake that has 25 grams of protein per shake. Tried the chocolate and vanilla...OMG, just like chocolate milk. It is soooooooo good. I'm semivegetarian at times, so this is really helpful to me. It does have a very small amount of soy protein isolate (the bad stuff for ER+ girls), but less than 2%. That is worth it to me to get some easy protein. Just an FYI!
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Portish, I wonder if she had the oncotype done and that's how they got that recurrence score. It's a test they run on the pathology slides that gives a distant recurrence risk number. It is often used to help decide if chemo is indicated or not.
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Lucky, thanks for the info on PFC shedding. Hoping to avoid it, but it is good to know what to be on the look out for. I agree, it is so hard to determine how much hair was lost. If I had to guess, I'd say around 25-30% as well. But it's really hard to quantify.
Dancetrancer, thanks for the tip. I still have to have my surgery so I will be sure to get a protein boost. The chocolate Ensure sounds yummy :-)
Portish, I'm loving your daughter's boyfriend. He sounds like an absolute dream. And the story about his mom is amazing. I love hearing stories with good endings like that.
So, my doctor gave me a prescription for pills to help me with mouth sores and dry mouth due to either the taxotere or the steroids (still can't figure out which is causing it). I've had thrush twice and a fungal infection. I have to take the pill for 5 days. Well ofcourse I read the disclosures about the drug and guess what's one of the possible side effects.....hair loss....urgh!!!
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Uggghhhhh victorious on the mouth sores! I've just gotten over thrush (still taking the Nystatin mouthwash), but I feel a sore possibly developing on the roof of my mouth. Doing some baking soda rinses, hoping that will help. And Biotene here and there. Between all the mouth washes, drinking water, and pill popping, I barely have time to eat or go to the bathroom. LOL!!!
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portishk: sounds like your daughter has some pretty challenging extras to cope with as part of her chemo regimen. If she decides to not use the caps during infusion, she can still keep a cap in the household freezer and wear it for an hour or two several days a week. The cold (any cold) will help stimulate new hair growth. And if she continues to use the caps during infusions, she may find that the hair will actually grow also -- this happened to one PCC user, who was on TC. She found out about the caps after she'd already had her first infusion -- too late to save her hair from falling out, but she used them during subsequent infusions and by the time she was done with chemo she had a head full of hair.
The real thing is, there isn't a right or wrong answer: there's only what is best for her individual circumstance. And she's lucky to have such a positive mother to be central in her circle of care.
Susan
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Hi everyone, had 5th chemo last week and I still have my hair. Yes it is very thin on top with bald patches but if I wear a hat you wouldn't know. My patches have all been on the top of my head and a few on the back wear you sleep.
I would say to anyone who has long hair like I did if it fall out big time like mine cut it into a very short bob. My hair is in very good condition like It was before chemo. I have one more to go and I think I will be ok, can't say it is easy and I have had a lot of pain with the cold cap. Many a times I wanted to give up and came close many times as I've been very poorly with chemo. When you are ill with chemo and you also have pain with the cold cap it isn't easy, this I think will have been my hardest time with treatment.
Read about % of cancer returning mine is 63% in the next ten years. This is because I'm stage 3 grade 3 and 4-9 cancerous lymph nodes. To be honest I think it is all down to luck if you get it again, so fingers crossed for everyone whatever stage or grade.0 -
I've been investigating using cold caps and haven't decided on them yet. My oncologist and the well known cancer center hospital hospital she's at will not allow them so I have made an apointment with another doctor and hospital that will. In addition to BC, I was also found to have an indolent form of Non-Hogkins Lymphoma. A lymphoma doctor has assured me that no form of chemo will trigger it into activity, but he's against cold caps. I'm trying to find out why and don't have an answer from him yet.
Anyone have any experience with anything like this? Anyone else have a non-active Lymphoma and used Cold Caps?
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OK, I'm totally illiterate when it comes to lymphoma. Is this a disease of the blood? In this case, cold caps would likely be advised against, b/c it would be cooling some of the blood. I suspect even if it is a disease of the lymph nodes, the blood goes into them, so this may be why they are against it? This is total conjecture on my part and based absolutely on no research so take it with a grain of salt. But perhaps it will help you formulate better questions for your docs to understand why they are against cold caps. They may have valid reasons but just have not explained it well enough to you.
Breast cancer rarely metastasizes to the scalp, this is why docs (but not all, of course) are ok with the caps. I don't know about lymphoma.
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My doctor is currently away at a conference, so I can not speak to him until next Monday, but this is what he sent via his iphone: I have seen lymphoma pts develop disease surrounding the edge of cap
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Sounds like the recommendation against the caps is indeed related to the lymphoma diagnosis. I'm sorry you may be unable to try them.
What chemo regimen are you doing? 0 -
Hortense...I believe everyone should do what they are comfortable with...so what ever and however you chose your journey works for you...but I personally would challenge a doctor that said something like this so easily...there are so few cap users out there and probably very few that used them with lymphoma....I'd ask how many patients, what type of disease around the caps, is there any clinical evidence he/she could share....beware the doctor that won't provide backup to his/her opinions/recommendations....just MHO.... I agree with dance .. It might very well not be a good idea if it is a cancer of a circulating system like blood or lymph fluid...but I'd still want more of an explanation.....
Best to you and let us know more as most ladies on this thread love information... :-)0 -
Very true lmflynn - I would insist on a medical explanation so that it makes sense to me - even if it is that it isn't safe for hortense to do the caps, she deserves to fully understand WHY.
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Hortense, I don't know anything about caps with lymphoma, and I agree with lmflynn as well, cold caps are very new in the US and I can't imagine he has actually "seen lymphoma pts develop disease surrounding the edge of cap". Perhaps he has read some evidence of this in Europe, where the caps have been used for several years? I don't know, but there are MOs out there that have not done their homework, but advise against caps anyway. I would want to know what studies the MO is going by. I would also call Frank (Penguin Cold Caps).
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Ali,
I'm thrilled to hear that you're nearly finished and from the sounds fo things far from bald - good luck - I look forward to welcoming you to the PFC team! I"ll think positive thoughts for you as -
Lucky
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Hello all. I'm day 10 post my first treatment. I just washed my hair and this time I let it dry completely (in a tangled mess) before trying to comb it out. I had very minimal shedding, especially compared to when I combed it (carefully, of course) wet after the last shampoo. You all my already know this, but it was news to me (just figured the hair might be stronger when dry, so I tried it out).
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dancetrainer - yes... that's it! It was the oncotype test... just couldn't think of the name of it. Thanks! & thanks for the info on the Ensure shakes. My daughter doesn't eat meat, but gets her protein from other sources... and could certainly benefit from the shakes!
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luckyjnmom: Yes, her oncologist was obviously concerned with her score, and they wanted to take her ovaries even before she was diagnosed with breast cancer... which is why she went through fertility treatments and had her eggs retrieved and frozen. I hate to even think about metastisis, but I guess that was their concern. Her oncologist highly recommends having her ovaries removed immediately after 8 rounds of chemo, double mastectomy and reconstructive surgery... but he also realizes that she's so young and wants to have babies. She and her boyfriend plan to get married immediately after this is over, and start trying to have babies.
She knows that her ovaries have to go because she has extreme endometreitis, and has had 2 emergency surgeries for ruptured cysts in the past 3 years. In addition, her oncologist had planned to put her on Tamoxifen for 5 years after surgery, but he told us she tested "triple negative to Tamoxifen", and I have no idea what they plan to use in place of it. Ugghh... when it rains, it pours!!
Thanks for the info and positive thoughts... and please keep them coming as I like to be informed... and I have got to stay positive! Sending positive thoughts your way as well. Thanks!!
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sebm9/Susan - yes, I have tried to talk my daughter into keeping caps and wearing them around the house, just not sure if she wants to deal with it. I've even thought about buying a couple of Gel caps off Amazon and having her keep them in the freezer, but just not sure if she would go for it. She does have some extra challenges, but they are not really slowing her down much. She went to an event for her non-profit last night sporting her new stylish mohawk in a cute little dress and super high heels. If you saw her or talked to her, you would never know she had cancer. I think her positive attitude, meditation, yoga and healthy diet have a lot to do with it!
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portishk: Yes, attitude is absolutely everything. Meditation, yoga, healthy diet, were key to my treatment and remain key. She is totally in charge of her experience and that is what counts.
I'm really excited this week because I've spoken to two women newly diagnosed, who will be treated at my cancer center and will be using PCCs. (I was the first person at my cancer center to use PCCs, exactly two years ago yesterday was my first infusion.) The thing I'm excited about, is each of their doctors are part of the same oncology group as my doctor, so there are now three doctors at that group recommending and using caps. Both women have spoken with their respective nurses and are getting full support from the nursing staff. I can't tell you how gratified I am to know that my journey 2 years ago continues to have a much bigger impact -- helping women on this list, helping women who are referred to me by friends who know my story, and now seeing how the local medical community is embracing and encouraging PCCs.
It's been a good week, in that regard.
Susan
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That's wonderful Susan! It's a good feeling to know that your efforts have helped others, and will continue to do so. Thank you for being a PCC Pioneer
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Susan,
Thank you for your evangelizing for cold caps - you have helped me tremendoulsy through my experience - and I'm just one of many who have benefited from walking in the footprints you've left.
Lucky
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I'm about 2.5 months PFC. I have a question about regrowth. I have new growth around the perimeter of my hairline, where the caps didn't cover. However, I don't seem to have any new growth on the rest of my head. Considering how much hair I've lost, I would of thought I'd start to see new hair growing across my scalp. Just wondering what some of you have experienced. Thanks so much!
Lisa
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Lisa Ann - I did not notice new growth within my scalp until the hair got longer...then it was standing up at the part line! Trust me - it is growing - you just can't see it. I finished chemo last May and started noticing the scalp growth in the fall. By then it was an inch long and standing up.....thank God for hairspray! Now the areas I lost are about 4 inches long...my new mini bangs are down to the tip of my nose.
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Hi LeesaAnn: I too noticed regrowth along the hairline, esp. above one ear where it had thinned, but mostly at the nape of the neck. I had a little forest of the cutest, tightest little ringlets you've ever seen...and then had little ringlets above the ears. The nape hairs were covered by my shoulder length hair, and the ringlets were cute until they got longer...they stayed very corkscrewish as they grew. They would actually poke me in the ear at night and wake me up! It was both annoying and funny. And when it got a little longer than that, It would take on sort of a Bozo-look -- sticking straight out. I just enjoyed the heck out of having hair. Always seemed that the next day it would do something totally different, and it grew ***fast***. I swear, sometimes it grew 1/4 inch in a week.
The all-over hair regrowth didn't come in ringlets, but I had a fuzzier look for a while -- as if I had flyaway hairs or something. A little hair gel kept it in control.
The thing that was most noticeable about my post-chemo growth, is that all of my hair came in very curly, including the hair I kept. The hair I kept during chemo, which was wavy, stayed wavy but as it grew, the new growth came in very curly at the top. I had a series of trims every couple of weeks, and now my hair looks like a slightly curlier version of before chemo.
I normally have lots of natural highlights -- gold, red, light brown -- and I swear during chemo I lost my highlights and even any stray gray hairs. About 5 months PFC I noticed my highlights coming back -- as if my hair changed color. Did anybody else notice anything like that?
Cheers,
Susan
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Hi ladies, I was reading some of your posts as to brand, service etc. I used EG's for my TCH treatment and I lost hair all through out but at the end I had a full head and no one noticed. I could not be happier with my decision. When you first get diagnosed you have so much being thrown at you and the decision to keep your hair and which brand, costs etc can be daunting at least. I documented with photos my entires progress through each TX and PM me if you want pics. I would be happy to share.
A few things no one tells you...
The more hair you have the more you will lose. Same for thin hair the less hair that can insulate itself the more effective the caps.
You will lose hair and shed the whole way through and even after.
The caps( EG's, PCC, etc). do not fit snug on the crown or the side because no ones head is perfectly round and no two heads are the same.
What will Determine your outcome is diligence and protocol you follow, I used PCC and had to modify the plan to make it more efficient. There are big gaps in his protocol. But it is a good guide, it is up to you to adjust.
Temps and pre prep make all the difference in the world. What makes a good cap is the ability to get to the required temp, not the brand. it is our jobs to switch caps and keep head at regulated temp during TX and it is wise to wear 2-4 days 2-3 hrs a day after TX also. There are so many factors when pertaining to cap temps, your body temp, a/c or heat in infusion center, etc. make sure you have enough caps and dry ice. I was spending upwards to $ 100-150 on dry ice the week of TX.
My onc was a naysayer and 2 months after my last TX he called and rented the caps from me for another patient. Oncologists are not a part of the wellness care of treatment nor do too many want them to be. The majority of onc's are programmed to squelch what they do not publish or FDA approves. Do not ask your mechanic to fix your TV. In fact my BS calls me for her patients because she now recommends them BTW my naysaying Onc is looking into clinical trials.
It is allot of expense and work, but well worth it to get back to your life much faster. I have no regrets. Good luck to all of you. I thought I would write this because in this case brand does not matter as much as they would like you to believe.0 -
Nmoss100: Your input was invaluable. Thanks a bunch! One thing that I was not prepared for was the amount of shedding that I've seen. I had read quite a bit on cold caps before starting them but I don't recall any emphasis on the SHEDDING. It totally freaked me out when I saw it. That should be stated in BIG BOLD LETTERS: YOU WILL SHED...PROBABLY A LOT. BUT IT IS BETTER THAN THE ALTERNATIVE...BALDNESS!
BTW: I read on another topic that you needed additional scans. If you don't mind my asking, how did that turn out?
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nmoss1000-That's great that you were happy with the results using the Elastogel caps. I've been following this thread since its beginning and there are very few on this forum who have used them with much success. I can only speak from my experience, I've helped many women with the Penguin caps, but have only heard of 2 women using them at the Oncology Center I was at. I didn't see their results, but did hear from a nurse that one of them did very well with them. She estimated the woman saved 80% of her hair.
You made some good points I'd like to clarify:"The caps( EG's, PCC, etc). do not fit snug on the crown or the side because no ones head is perfectly round and no two heads are the same." The Elastogel caps are shaped like a bowl, whereas the Penguin caps are sectioned to conform better to the shape of the head.
"There are so many factors when pertaining to cap temps, your body temp, a/c or heat in infusion center, etc." I agree with you entirely that there are MANY factors that can influence the results, but none of those in which you listed. Many women wrap themselves in heated blankets and this doesn't influence any hair loss.
"You will lose hair and shed the whole way through and even after." This is not a given. Some people notice shedding after their first treatment-between days 14-21. Some don't have it at all. Some people hardly shed any hair at all during treatment, and then shed after all their chemotherapy is done. It's hard to define the cause because as you mentioned there are so many factors which could influence this.
I would welcome viewing your pics of progression throughout your chemotherapy. Also please share what 'big gaps' in the protocol you believe need to be changed.
It's good to have hair isn't it
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Hi all! I finished my last chemotherapy treatment friday, using the cold caps i still have all of my hair. Except or a bald spot on top that we got a bit frost bitten by pulling straps too tight. I live near Dallas and the local channel 5 news did a piece on my story. The link is www.nbcdfw.com/news/local/frozen-follicles. Not sure if it will open or not. It feels so good finishing this and still have hair. :-)
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tc, I am so glad people have talked about the shedding here, too...otherwise I would not be prepared for it either!!!
Doc asked me today..."how's your hair"? I just replied that it is a bit dry, too early to tell yet (I'm 13 days post my first TCH). Oh, I sooooooo hope I can prove him wrong. Even though I love him, he's such a doubting doctor on this!!! LOL!
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dgreg, the link didn't work, but I found your story:
Cold Cap Helps Cancer Patients Keep Hair
Great story, you look awesome - thank you for sharing! Did the news find out about you, or did you contact them? I've thought about doing this if it works for me. I'd love to spread the word.
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