Cold Caps Users Past and Present, to Save Hair
Comments
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Hanging in there, I actually didn't understand why you were upset until I saw the picture with the thinning in the back, which still isn't bad at all considering the toxins your body has endured. Still, after all this we should at least feel pretty. I'm sorry you don't right now. Have you considered using toppik? I've seen pictures of ladies that used it. I haven't yet ( and hopefully won't need to) so I can't explain it well, but I think it fills in the thin areas with texture somehow? You'd probably only need a little. I'm sorry you're upset.
Kaylie, thank you for the helpful advice. I'm feeling overwhelmed by multiple things in my life right now. There's just no time to slow down and have cancer for goodness sake! I'm going to go through and re-read the last few pages here Sunday and take notes.
My potentially wonderful news is that my nurse navigator linked me to another local woman who recently did cold caps with success and we're meeting to talk! I live in a fairly poor, somewhat rural area so this is really wonderful. My nurse navigator sent out emails asking for anyone who knew anything about cold caps to reach out and a friend from a facility she worked at before responded that she happened to know someone in this area! The nurse navigator actually wants to be there when I start next week so she can educate herself on them. I told her once I make it through all this, I'd be willing to be a resource. She's also going to make sure the nurses are onboard since I explained how time sensitive everything is.
I'll catch up and re-read more Sunday to make sure I haven't missed any helpful information, but wanted topop in to say again how much I appreciate the support I've received here.
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Hangin in - I think you look great because you started with lots of hair. Currently you look like I looked when I was still on chemo. I was just comparing how much hair you had when you started, how much you had after final chemo and how much you have now. Great pictures by the way. I wish I would look like you look now. What shocked me is that you are still shedding 5+ months PFC. I feel like I will have no hair left if I continue to shed at the pace I am shedding and I am almost 15 weeks PFC. Sorry I didn't give a better explanation. When my hair was like yours is now, I got away with wearing hats and summer scarves to disguise the lack of hair. I looked like a person with thin hair, like you said. Now I must have a pony tail all the time. I have wigs and just ordered a halo to wear with hats. My scalp has sprouts, but my bottom is EXTREMELY THIN. Thank you so much for sharing your pictures.
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Hangin in - Here is today's picture of my hair. The amount of hair you have on "one" of your sides, is the entire amount of hair I have, plus the new growth and tiny sprouts I also have. The hair I have is what you can see on the picture - I have NO additional hair in front. I still have to endure two more months to catch up with your current time PFC. You can see why your picture made me worry. I continue to shed quite a bit every time I wash, like I said before
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This is how my hair used to look every day. This picture was taken about a month before diagnosis.
I had a haircut during chemo because my hair was matting too much, which was increasing hair loss. My hair grows fast. This is why it looks long again
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Brightness 456,
I'm not sure where I gave the impression I was upset, I'm not. I'm going to have to go back and read my descriptions and change them so it doesn't sound that way. I had no expectations. I'm doing well especially considering the chemo I was on. I just wanted to post because I didn't realize I would be shedding so long. And wanted to give people a realistic view of my changing hair.
I would not have even started cold capping if I didn't have so much hair to begin with. I thought I would have a better outcome with the more hair I had to begin with.
The only thing I'm annoyed by is the continued shedding. I've had to stop washing my hair once or twice a month, down to once per month, because I just don't have that much long hair to be able to wash it more often and continue to have long hair. I'm going to get it cut next week after I wash my hair (very carefully)-- I think it is Elastogelgirl's hair washing way, which I wish I had started on day 1.
Cali58,
If there is anyway you could stop washing your hair as much, that would keep more hair for longer. But I don't know of other ways to treat dandruff. Could you ask a doctor about a treatment for dandruff that doesn't involve washing your hair so much? Maybe just putting something on the scalp.
I wore sun hats in the summer, and I have a nice sun hat. (I needed it anyway since I was in radiation.) I also have bandanas which look fine. I got some bandana-like paisley chemo hats that I wear too. They don't look too much like chemo caps because I have hair hanging out from them, so they don't look all that different from bandanas.
And I know I have as much hair as some women have all the time. I just don't know how long I can look like I have long hair with the continued shedding.
I have Toppik and have used it, but with the new growth, I don't feel there is anyplace on my scalp that is missing hair. I'm not sure if my hair is coming in at a normal rate. It didn't start growing in until 3 months PFC. I had great leg hair much earlier and my eyebrows and lashes came off after chemo and came back right away.
MY Current Hair
I have not seen it, but the chemo nurse (flushing) said I had about 2 inches of new hair(yesterday). I'm taking Viviscal, twice a day. I was taking silica pills during chemo. Those were huge and I had to cut them in 4 pieces to get one down each day. I had put them ground up in apple sauce until I started hating applesauce.
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Hangin in - Thanks to your post I decided I will wash my hair every 4 or 5 days now. I can't wait any longer than 5 days. I get seborrheic dermatitis (my type of dandruff) which can cause additional hair loss. My dermatologist told me that I needed to wash it more often. She thought that I would shed less. She was wrong, you are right. My European human hair wig is very comfortable, it doesn't itch and looks, from behind, exactly like my hair used to look. I still need to figure out how to style the front because the wig salon styled it different than i styled it. My husband says nobody could tell all i have been through when I have it on. I also have a Raquel Welch synthetic wig. It's nice but itchy. I just ordered a halo with human hair that I would like to use with hats.
Oh well, I have to remember that I am blessed to have found, by myself, the tumor under my clavicle bone after injuring a muscle at the gym. It was a reoccurrence of ER+ pr+ breast cancer I had in 2002. It was all contained in a lymph node and my MO never examined that area, only my breasts and neck. I exercised daily and had a great diet. Everyone thought I looked and was very healthy. I took Tamoxifen for 2 years, which made me go through menopause. When I became post-menopausal my MO prescribed Arimidex for 2 1/2 years. I was 44 y.o. During my first diagnosis. Of course, prior to medication I had chemotherapy for 9 months and radiation to the breast area for 35 days. The first diagnosis was easier on me because my son had just finished chemotherapy for Leukemia ALL (diagnosed at age 4) and he had been a fighter and a survivor (another blessing.) My current MO thinks that taking Tamoxifen and Arimidex is what delayed my recurrence.
I am also blessed to have kept some hair. It would be worse if it didn't have any left and, even worse, if it wasn't growing back. I can go on and on with all the blessings God has given me.
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I saw someone comment not to use Vivascal until 3 months PFC. My hairdresser recommended it to me and I was going to start right after chemo. What's the reason for waiting? Thanks
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Mandeola - I took 1 pack of Viviscal between chemo and radiation. I stopped taking it due to the advice of a nutritionist MD from UCLA, Alternative Medicine MD from MD Anderson Cancer center, and a dermatologist From UCLA. The 3 of them are from reputable cancer treatment centers and they all stated that as a breast cancer survivor I shouldn't take vitamin C supplements. Viviscal has Vitamin C and Aminomar Complex. My dermatologist stated that I shouldn't take Viviscal not only due to The Vitamin C and also because we don't know what the Aminormar is. You might want to consult with your MO.
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Can vitamin C cure or prevent breast cancer?
Large doses of vitamin C (ascorbic acid) have been proposed as treatments or cures for various types of cancer, including breast cancer. Vitamin C is a micronutrient vital to human health. Relatively high intakes of dietary vitamin C (i.e., from consuming food) have been found to be associated with lower risk of childhood leukemia, as well as oral, skin, gastric, pancreatic, colon, endometrial, and prostate cancer. Moderate vitamin C supplementation has also been found to be associated with lower risk of some cancers, among them bladder cancer in men and colon cancer in women. Relatively high dietary intake of vitamin C has been shown to be associated with lower breast density in young women.
The case for vitamin C supplementation is based, in part, on the observation that breast cancer patients tend to have low blood levels of antioxidants compared with healthy women, indicating that the patients have exhausted the antioxidant defenses of the body and are vulnerable to oxidative damage that could further promote breast cancer. Laboratory studies have found that vitamin C at various concentrations inhibits human breast cancer cell growth. However, we are not aware of any academic studies that demonstrate a survival benefit for women being treated with high doses of vitamin C.
Recent evidence suggests that vitamin C should not be taken during treatment with tamoxifen since it has been shown to protect breast cancer cells against a type of cell death caused by tamoxifen.
Based on the available evidence, while it appears that dietary vitamin C might protect against breast cancer, supplementation with relatively high doses of vitamin C may not be beneficial for breast cancer patients or survivors. In fact, the evidence hints that such supplementation could actually promote cancer.
Dietary sources of vitamin C
The following foods are good dietary sources of vitamin C while also having been shown to protect against breast cancer:
Vitamin C appears to act synergistically with other nutrients in the diet to oppose cancer. On the other hand, high doses of vitamin C may extinguish the anti-cancer effects of some other micronutrients known to be protective against breast cancer.
Bottom line
Most breast cancer patients, survivors and those at high risk are in a good position to obtain their vitamin C through a tailored breast cancer diet. Supplementation with vitamin C is not necessary and treatment with high doses of vitamin C could be counterproductive. Vitamin C supplements should not be taken during chemotherapy or tamoxifen treatment.
Below are links to recent studies on this topic. For a more complete list of studies, please click on vitamin C.
Tags: bellPepper, broccoli, brusselsSprouts, cabbage, cauliflower, foodsArticles, greens, hotPepper, kale, lettuce, melon, parsley, raspberry, tamoxifen, vitaminC, watercress, watermelon0 -
Brightness - I will be done cooling next Wednesday as it's my last treatment!! I purchased a nice infrared thermometer that worked great for the caps. If you want I can send it to you to use since I won't have a need for it anymore. I can get it in the mail next Thursday if that would be helpful. Send me a PM so I can get your address if you think you could use it! Let me know
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Hi Brightness456. I used Dignicap and yes I chose to do an hour and a half each way. That said, this practice performs blood test same day as chemo plus I was given the Neulasta On Body Injector (so no need to do anything but show up day of chemo have blood test and given blood work was good...head up to chemo floor for Dignicap nurse to fit cap/monitor capping, chemo premeds, chemo, then one hour of post chemo capping. I carried a bag with electric throw, water bottle and comb, towel, and of course meds and magazines. Because I live in Illinois and my treatment started Dec 2016 through Feb 2017, I contacted Dignicap rep regarding wearing a knit hat. I was told it was not recommended.....I wore them anyway each time I went to chemo or to the store etc...Honestly I probably wouldn't have lost so much hair throughout my head had I not worn the knit caps....I must say I was still very pleased at the amount I retained. If I can answer any further questions about Dignicap, please feel free to message me. It was nice not having to worry with a cooler, purchasing dry ice, keeping the caps cold and checking temps, along with multiple cap changes. Many on here have been just as successful with the manual cold caps. Everyone is different. ----I was happy not to worry with any of that! Wishing you and all of us wellness always
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My best tip is not comb your hair everyday only before you wash it to detangle and after, and you wear a ponytail. Everyday you can put a little water with your hands to hide the freezing. That way you are not going to loose so much hair except every washing. Keep on going it is worth it. I had 5 and one more i lost alot because i didn't detangle it before washing and i had to cut the detangled hair that was half of my hair. This was the 21 day after the first chemo, the big shedding. Now with the ponytail nobody notice i have little hair and at my work they don't even know i had this BC. I bought the halo extensions to wear it sometimes when i go out. And for later on if i continue shedding and loosing hair after the last chemo.
Good luck you can do it.
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I am down to my last wisps of my chin-length original haircut, but much more of the undergrowth is appearing. I can still pull back the wisps into the tiniest of ponytails, like the kind you put on a toddler who is just starting to grow her hair. It does the trick to not look like the hair is so thin. It is a big ol' mess, but anything to maintain my privacy is worth it to me. I'm sure people have questions in their minds about why my hair is so bad/weird/strange, but without knowing my diagnosis, I haven't seen people stare, scrutinize, or make comments to ask. I can imagine people asking much more if they knew I were in cancer treatment.
Keeping my hair is not about vanity. For me, it allows me to take the lead on how I get to proceed on this journey, as opposed to having the world at large dictate that for me. It allows me to choose when to talk about my cancer. I get to be selfish. I get to bring it up on my terms, to people I choose. I don't want to put my life on pause for these treatments. Putting my Fridays on pause for 16 chemo treatments, then surgery, then recovery, then radiation, then reconstructive surgery, is enough of a disruption. I don't need any more intrusion to my life that is caused by my cancer.
My goal is to minimize the cancer's disruption on my life by the minute. If all the doctors are telling me that I have a good chance of surviving it and not to worry, then darn it, I'm not going to worry, and most importantly, I'm not going to let the world drag down my spirits by having people asking at every encounter about how I'm doing with my treatment, even if they mean well. I see it as a version of being smothered with love. Sometimes, especially on days when I'm feeling totally normal, rested, and totally free of side effects, I just want my day to proceed normally without having to talk about cancer to someone from work or from my kid's school who I hardly know! Words of encouragement are still a reminder of cancer that brings me away from the normality that I'm trying to maintain.
Every minute that I spend unnecessarily talking about cancer when I don't want to talk about cancer is a minute of my life I'll never get back. The good thing about my inner-circle knowing that I am not "out" about the diagnosis is that they don't bring it up unless we're alone. Otherwise, I can imagine every group gathering turning to a discussion about cancer. I went to a Labor Day party this weekend where only one family knew, and of course no one brought it up. It was bliss to enjoy the party and not talk about cancer.
I am down to my last 3 of Taxol weekly. After AC, I was dreading so much capping for the 12 Taxol, but it isn't so bad. My husband have a developing routine of getting take-out sushi for lunch at our favorite sushi place near the treatment center, changing a cap before we leave the treatment center, calling in our order on our way to the restaurant, changing a cap right before we pick up the sushi, getting to a friend's house who is away during the day and in the same neighborhood before the next cap change, and having our sushi date there for the remainder of the capping time (we live too far away; going to the friend's house works out better for us). By the time we do all the driving here and there, and having the meal, it eats up a good amount of the extra 4 hours after the infusion that I'm required to cap. It's a good way to find something enjoyable to do during the extra capping time.
Radmonkey - Congratulations on your final chemo! I'm glad that my posting pictures of my hair camouflage tips were helpful.
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Hi ladies. Hanging in there, I'm sorry if I misread your post. I'm a nervous wreck these days, so please just ignore me.
My update: I met with a local lady who used PCC. She was lovely and so reassuring. Her hair looked fabulous, but she's out about 6 months now if I recall correctly. Also, it looks like I'll have 2 helpers! I am hoping we can all be there for the first treatment or two, then maybe if we're feeling more confident, they can alternate to accommodate their lives. Asking for help isn't easy for me, but I'm pushing past all kinds of comfort zones now.
My nurse navigator is so kind too. She is going to review my situation with the nurses since apparently no one at the facility has done cold capping before. I feel fortunate to have her in my corner.
I'm going to watch videos and take notes today. This week is crazy busy with multiple obligations so if I can just make it through this week, I feel like next week might be easier.
I truly appreciate all the help and advice and reassurance I'm receiving here. I'm looking forward to being through this and able to pay back all the kindness I'm receiving
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I'm not a journalist at all! In fact I hate to write. Give me numbers and I love to calculate!
I wish we could document all of our collective Cold Cap tips in one document. It is hard to read through all of the threads in this community forum to sort out all of the tips. I think the document would be very valuable for future cold cap users. Is there anyone who would want to start putting a word document together? I would be glad to contribute to the content and proof read.
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Brightness, a pioneer! I truly hope that you are able to give back when you get through this in your local center.
Question
I am doing Dignicaps (as at my local center). The Digni literature says the big shed comes days 18-21. Today is day 18 for me, I am definitely shedding, trying NOT to panic, I knew it would happen and I am committed to doing it whatever the outcome - as I am on taxotere and do want to risk the 6% potential perm loss.
The one question I have for other dignis is users -- Digni says big shed is days 18-21 and to not wash your hair during this time -- the issue is .. it also says wash your hair day of chemo. For me, this time, that is day 21. I pulled my chemo in by one day, so I could have it on Wed vs. Thur, thinking that would give me the weekend to rest.
Thoughts? Better to wash it and get the benefit of not having build up and grease OR go with the build up and not the shedding. Whats a girl to do! Any tips appreciated.
Pam - ditto on the numbers for me, not a great writer. I would be happy to contribute -- if one gets started. I know for me,I spent hours and hours researching, so I would have probably read through this thread anyway - earlier in the process.
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Pambc010417 - a while ago Dancetrancer put together a topic with a lot of details explained. It's just it is not active, since everyone posts in this thread - so it is difficult to keep it at the top of topics.
Cold Caps FAQ's - newbies - how to save your hair from chemo
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I can't believe I have not been posting in a while! I finished my cycle 4xTC
I would do cold capping again, but with Penguin. For me it was too late when I learned about PCC. I did artic cold caps and my results were not great. I have hair so thin and a large bold spot. So I am Hoping for fast growth. Will see! It's been only two weeks so for now it's only waiting. I still have lashes, thin eyebrows!
For the ones starting just know, Artic cold caps uses elastogel caps and charges about the same price as PCC.
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Is there an easy way to post pics? I take pics with my phone, email them from my phone to my email, pull up the email on my PC, open the pic and save to my desktop. Then when I post, I try to search my desktop for my pics. Anything easier?
Also, I just changed my biography thinking it would show up in my signature, but I don't think it works.
Having a tech-challange day!
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Okay, tried the signature thing again. This is a test. Didn't really work, oh well
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GoKale4320: I post directly from my phone. I use the Chrome browser on my Android Sony phone, but I'm sure it will work on iPhone. I go to
https://community.breastcancer.org/forum/6/topics/...
and scroll to the bottom where there's a text box. I do have to type the message on my phone, which can be a pain. There's a button for adding pictures, just like on the computer.
Speaking of which, it's washing day again. Here's what's left, compared with last month. I have 3 more Taxol treatments left, after 4 AC and 9 of 12 Taxol. It looks like the new growth is keeping pace with the hair loss. I'm swapping long hairs for short hair. I might need to go in for a haircut even before my final chemo.
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mari - congrats on finishing!! How did it work out for you? (the capping that is) .
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TravelGirl----I used Dignicap. I washed before chemo regardless of the timing of my shedding. My worst battle was sweating from chemo at night as it caused a large amount of matting on the back of my head. This lead to me losing large chunks in the back even though I had a satin pillow case.----Wish I had used ice packs wrapped in towels to keep my head cool during the night.
-----wishing all of us wellness always
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Hanging_in_there: Saw your pictures on the other thread. I'd say your Penguin caps experience with AC+T was quite successful! Glad to know it does work out for some. PCC kept me from being bald, but it certainly did not let me keep my hairstyle since the long hairs are nearly all gone. I'll have to go pixie post final chemo.
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I met with some of the nurses at my facility yesterday. They all seemed nice and were curious about the process. Some indicated they were familiar with the process from places they'd worked in the past and I got the feeling it was actually more common years ago.
Today I take the caps out of the freezer to dry and come to room temperature.
I spoke with the local dry ice supplier and they only offer pellets, not slabs. Do I put the pellets in gallon size baggies? Will they be harder or easier to work with? Also, I have 4 caps and I'll be picking the ice up around 4 in the afternoon tomorrow, but won't start precooling until 9 the following morning. Does that mean I need around 50-55 lbs?
The directions are confusing to me, which could be because I'm just worn down by now and when I reach out to geralyn at PCC, I get a call from someone else who doesn't make me feel confident. It feels like she's reading from her list of notes rather than actually knowing the answers to my questions. I know we all have to start somewhere at a new job, but this is a lot of money and effort and I need to trust the people advising me. I have more confidence in all of you.
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hi to you--the pellets are easier than the slab to work with==have the ice company load into 2.5 gallon hefty ziplock bags-- you provide those-leave an end of bags open so gas can get out- I used 4 bags /5 bags--dont over fill you want bags to lie flat under and over the caps which go in at intervals- 50 pounds sounds about right- you can return -or I could what I didnt use and get a refund= you will get the hang of it pretty quickly- you take caps out from the bottom in rotation--- I numbered the bags 1-4 and also the bands which go on top--used the gel bands after the black straps as pulls in your nape and temple areas- common place to lose hair if not tight to scalp-I also pressed down on the caps in those areas when on head. only test temp on inner body of cap not all over----it is a long 7/8 hours- gets grueling/tiring towards the end---- I wrote out a a schedule for when the caps had to change and checked off as I went along- keeping track of the the post infusion 4 hours-for me ,- I needed to keep capping-but- I am 26 days post first TC and 5 days post 2nd infusion--this protocol has a high success rate--no adriamycins which is tuffer on hair--I still have all my hair--have had only minor shedding since about day 20--some shed quite a bit- this is normal- is old hair coming out--capping protects the younger follicles--keep going even if you start to lose some hair- it will help what comes out grow back faster-keep us posted-the first time is hardest but you quickly will get into the routine of it- the time goes by fast as you are busy- and have to take the next cap out 10 minutes ahead to knead and get to right temp- they warm up pretty quickly-is why the frequnetly needed changes- keep posting here=are here to help! Oh =ps you didnt say if you have a port- I dont -only 4 treatments and I have great veins- but if you need iv-have it put in forearm so does'nt interferr with your hand and wrist movements as you help with the capping, nor get caught on the velcro tabs--you can do this--really -s just a learning curve to master----best-Kaylie
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summer2016 - thanks for the response. I bought a ice pillow and haven't started using it yet -- that is a good reminder to pull that out - I have been turning up the air conditioner at night, not quite doing the trick.
My hair is thin/fine on a good day, so I haven't had the matting problem (yet) -- and fortunately I have had extensions in the past - so I know what it means to treat your hair very very nice. I feel like I am in slow motion when doing anything to my hair.
I will go for the washing, which is what I was leaning toward.I am also happy to report that after ordering 4 different root touch ups for my blondish hair (my hair is light brown/blonde bayalage usually) - I found one that matched better and has a more natural look.
I am using it for root touch ups and some 'body' - mostly root touch ups. When I am not in this state, I was an every 3 week root touch up person.
For anyone interested -- it is made by Keratherapy -- KERATIN INFUSED - Perfect Blonde Match - it is lighter than Bumble and Bumble Blonde and not the yellow blonde of Bastita - for me -- a much better match and I like the way it feels, a bit less sticky, natural. I am soooo thankful for on-line ordering that allowed me to find and order several brands when I realized part of what I didn't like about my hair was the darker roots - it was the light brown color I had been using.
I ordered my first Keratherapy blonde from Amazon and I had to go direct to the website for additional orders. The best part is that it is 3oz container, so when all this is over and I am back to my normal jet setting, it is small enough for carry on size -- success all the way around.
Happy capping and I wish everyone good health.
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Hi Kaylie, thanks for responding so quickly. I do have a port. It was placed yesterday and goodness, it hurts this morning. There's not really any fat in that spot and I suppose jamming that thing in there pulled a lot of skin up.
I'm off and running with errands and appointments now, but I'll read over your advice closer later. For now, buy 2.5 gallon hefty ziplock bags,,,
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I couldnt stand my roots showing-so very carefully used a wide flat 1 inch paint brush to gently paint on my usual box color just along the part without getting on my scalp-and left on for only 15 minutes rather than usual 35 and then gently wasned out with tepid water flowing over my head-did just enough to help disguise and helped me feel /look better/ My hair continues to grow with the capping--yea!!
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Kaylie - I am not that brave ! However, I am looking at my increased grey roots as my hair growing as well and somehow it makes me happy
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