Cold Caps Users Past and Present, to Save Hair
Comments
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Maria~ so good to see your post...been wondering how you've been? Glad to hear your shedding is slowing down.....you are almost there!
All new Penguinistas and cappers- you can do it! 7 months PFC, and hair is pretty close to normal.....although I've gotten more daring with color....decided to be a red head for awhile!0 -
I am now just one day PFC! My hair loss really slowed down after day 25 or so, but I had tons Day 2-25, it will be interesting to see how it goes.
Some were speaking about the reactions of their kids... I was trying to explain a bunch of my hair in my son found in his sinks, and that my medicine made me lose hair and I might look a rather funny with no hair on the top of my head for a little while, and he said (4.5 yo), "but mama, you look so cute. you look like when you were a baby" and gave me a hug... melt :-)
For the crysal deoderant, it works great, but I read that it transforms to aluminum on your skin (I found this info on the bumble and bee website) , so you might want to avoid it.
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I was told that the potassium alum in the Crystal Essence deodorant was a natural mineral salt that is not absorbed by the body. This info. was from my dermatologist. Hope she is right!
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Home from vacation...as promised photos of 12 weeks PFC. In the second photo I can tell how thin my hair looks as the wind blows it but no one else can tell......
I am so glad I did the caps.....
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Hi ladies, Greetings on a beautiful evening. To all the newbies, you can do it! Chemo itself is manageable for most, and having such a positive focus (maintaining your hair) through it is empowering. This week I'll be 14 months PFC. This year has gone by quickly!
For deodorants, I now appreciate how well the aluminum deods. worked. But, they came off my list when I started chemo, and I've stayed off because of the increased risk of BC with them. I tried all of the non-alum deods -- Tom's, the crystals, you name it -- and nothing worked more than once. On a lark I tried Trader Joe's non-alum with cotton fibers, and it worked! Not as great as the old aluminum-based stuff, but enough to get me through a tamoxifen-fueled hot-flashing christmas season at the children's hospital where I'm in charge of Christmas (meaning donations, events, etc.). It's an uber-physical time of year for me at work, and by gum TJ's got me through it. I had to reapply throughout the day, but it was worth it. And, as a bonus, it's inexpensive and has very pleasant herbals.
Some of you are moving on to radiation. My rad onc is one of the best in the Bay Area, and her prescription for skin care during rads is very simple: corn starch. Nothing more. My instructions were to pat my treatment area with corn starch about 6x/day throughout treatment. I had very long rads plus extra boosts, and the corn starch kept my skin soft, smooth throughout all. At the very end, during boosts, it finally became red, and at that point I used aloe once daily and it was fine very quickly (I always respond quickly to aloe -- I'm relatively fair skinned but spend a lot of time in the sun doing outdoors things, snorkeling in hawaii, etc. I've had my encounters with the sun!) Anyway, give it a shot. It's an old-fashioned gramma's recipe for sunburn, but corn starch really works, and other rad oncs are now picking up on it in the bay area. [To keep from getting it all over my clothing, I put a little in an orphan sock that was in the laundry room, and used it like a powder puff. (Corn starch also worked well under my treatment arm, since I couldn't use any deodorant whatsoever during rads.)] I was thinking about it today because a year ago I was in the middle of rads...I had no fatigue, no SEs whatsoever. Radiation was a non-event in terms of my cancer treatment.
Tamoxifen, on the other hand, has been the most difficult thing of all, but I'm almost at the one-year mark, four more to go.
For anybody heading down the tamoxifen path, here's what I've found. With chemo and rads, there was a menu of potential SEs, and you might get some of them briefly, but you probably wouldn't get many of the SEs at all. What SEs you do get are manageable pretty quickly, either with diet, rest, exercise, or meds. With tamoxifen, it seems that all of the SEs hit, and because treatment lasts so much longer, they come and go. My MO advised that the first three months would be roughest, and she was right. I had sleeplessness, increased hot flashes, got moody from lack of sleep. Then my body adjusted and it calmed down. I very quickly realized that if I kept up my exercise (I swim, hike, lift weights, golf, do martial arts) then my sleep was better and all the other SEs stayed at bay, especially mood swings. I also found very quickly that if I had any sugar (including alcohol, which is high sugar), I instantly had a hot flash. Since I avoid sugar anyway, it was relatively easy to adjust to this. My newest SE is killer leg cramps, especially in the middle of the night but sometimes during the day or even during activities. I already take in a lot of potassium, but I've added some by drinking coconut water (fat-free compared to coconut milk), which has lots of potassium and electrolytes.
Those are my pointers! It's great to hear from mdg and lmflynn and some of the folks who followed me -- glad you are still checking in to support the new folks going through this! If there are any lurkers here, feel free to PM me your email address and I'll send you my writeup about PCCs and going through chemo. I'm one of the earlier users of PCCs and wrote up my experience and still coach lots of women, online, by phone, and in person -- almost one new woman every day. It's been such a great gift to be able to give back; I'm a year and a half out but I remember exactly what I was going through when I learned of my diagnosis and that I'd need to go through chemo and that I might lose my hair. It is gratifying to see how large this network has become. Please pay it forward as you can, in future!
Btw, my obgyn now also recommends caps to patients -- so that makes all of my docs, now recommending caps. Mission accomplished!
Cheers,
Susan
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Maria, these photos are absolutely stunning! What a wonderful celebration you have -- you deserve it! xo Susan
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Susan- thanks for all the very helpful information, both here and what you emailed me!
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Maria~
You look great!
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Maria gorgeous photos. Doesnt look at all that you have gone through treatments!
Thanks Susan for the advice and encouragement. I had gone through almost 5 years of tamoxifen and the worst part for me is the weight gain despite exercise, food control etc. Also please watch out for unexplainable depression or moodiness or temperament changes. There are days when I snap at the slightest thing or get weepy or just can't trust anyone..0 -
Maria you look BEAUTIFUL!! Great pictures!! ....Thanks for the pointers, Susan!
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Maria - You look GREAT, absolutely gorgeous!!!! Thanks for sharing thr photos with us, very encouraging.
Susan - Thanks so much for the advise and tips, i've copied your post and save it in my doc, appreciate your time in writing this, very helpful to us going through chemo and have RADS and Tamox to follow. I will try the Trader Joe's deo coz Tom's doesnt work for me, first of all i noticed since i started chemo my underarm smells diff uuurrghhh sorry, but have to clean my underarms every now and then, then apply deo. Thurs, is my 3rd chemo, still have head full of hair even though at diff lengths. Went to see an old family friend on friday, she knows that i have BC and going thru chemo but hadnt seen me since i started treatment, she was amazed and said that i looked great and that noone will know that i am going thru chemo unless i tell that:-) that made me feel so much better.
Have a blessed sunday all.
Sophie
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I too am having trouble finding a non aluminum do that actually works. Where do you buy Trader Joe's?
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Maria - you look great - you can't tell AT ALL!! i wish I'd had that kind of success. Mine is scary thin ... one fine layer covering my head - stuck to my head because it's the last layer of hair. Very weird looking. I finished tx almost 2 weeks ago, so i'm just hoping it stops shedding (it must - there's not much left to shed) and that new growth will thicken this up. I can't wear it without a scarf - I'd scare people!! Congrats to you, you look beautiful.
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Maria, you look great. Doesn't it feel good to have that breeze blowing in your hair! I'm 18 weeks PFC and still shedding some. But able to go to a destination wedding this weekend in Taos and let the wind blow my hair all over the place. Thankful!
I started Tamoxifen two months ago and must say that I have had zero side effects except some carpel tunnel symptoms which are rare with T. No sweats, no trouble sleeping, no mood swings. Another friend is bedridden for 10 days with severe nausea after each TC chemo. So I guess we all react differently. All of this keeps me on my knees and reading my Bible! :-)0 -
Maria: you look stunning. How gratifying to feel the wind blow in your hair. All your effort and hard work paid off. Your son is darling and I can see why he is the motivation behind all you have done. Thank you for all your support and encouragement all along the way.
Susan: thank you for your pointers and write ups. I heeded your advice early on to keep exercising, even when fatigued all throughout chemo. Some days I couldn't walk as far or I would wind easily, but I did it everyday. It kept my spirits up. In addition, I believe the exercise staved off red blood fatigue, unless that comes weeks after. This coming tues is a day I will celebrate, it would be a regularly scheduled chemo day on the 21 day cycle, but I am done. My body won't be knocked down again, it is on the road to recovery!
Lmflynn: thank you for your support and encouragement as well. It's great to have so many women discussing their experience at different stages in time. It gives everyone hope that we can get through the bumps along the way.
On a positive note, my shedding since tx #4 seems to be slowing down. It hit me hard and I experienced what I call big sheds immediately following tx to day 18. I hope it stays this way, or subsides completely. Now Im on the lookout for new hair growth, both on my scalp and in my brows.
Has anyone used any hair growth products on their hair, such as nioxin or Rene Furterer or Revitalash for hair? I wonder if this would be too harsh on the follicles or encourage hair growth.0 -
Happy Sunday everyone:
Beautiful pictures Maria. You did great...wish I had that much hair left. What beach is that?
Tomorrow is 11 weeks PFC for me and hair still shedding. Still only washing once a week with the cold water. Hopefully, the shed stops soon. The saving grace is that the new hair coming in which started during chemo has kept me from having any bald spots. I have NO regrets having used the Elasto Gels. I keep saying that I'll start washing twice a week so that I can get rid of the cradle cap but really afraid to change the pattern, especially since shedding is still the worst after shampooing. My new hair coming in around the back neck area is red which was the color of my hair when I was younger.
Susan: Thanks for the corn starch tip. I have 2 weeks remaining of rads and it hasn't been that bad thus far. I've been just using the aloe and vitamin E The last 5 days, I will have boost on the scar area and that will more than likely cause much more irritation. Yuck, Arimidex starts after rads for 5 years and Boniva to stave off osteoporosis which is the most common side effect from the Arimidex.
CONGRATS to those finishing chemo!
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Istreet - I just received some pictures from a former PCC (4 AC followed by 12 Taxol). She kept her hair after AC and started growing after her 5th Taxol treatment. That said, she began with A LOT of hair, she had a curly, long and layered haircut, so she shed a lot, but you can’t tell from the top (where her shorter layers were), it looked like a really nice curly short haircut, but her long layer (below bra strap) was thin, thin, almost nothing thin. I concluded that our haircut previous PCC matter a lot for the way we look at end result, since Sashette has also a lot of hair, but she has a curly, long, and no-layered haircut, nobody can tell that her hair thin at all.
Another former PCC (4 AC + 4 DD Taxol) kept most of her hair until the last treatment. Then she lost it all. Frank concluded that maybe her caps were too cold at the end (since her hair had thiner a lot in the process maybe at the end her scalp was too expose by then) or her treatment was too harsh and killed her digestive system enough so her hair follicles didn't receive proper nourishment to survive (she was also very constipated throughout).
Good luck with your first AC treatment on Tuesday (same day I will have my third AC). I will keep you in my thoughts and prayers.0 -
Thanks Ralston - that is encouraging to hear that people can keep hair through this regimen! Good luck with chemo #3!
Lucy0 -
Ralston - do you have any more information on the woman that lost all of her hair after 4 DD AC/Taxol? I had the same treatment. I finished two weeks ago. My hair is super thin (can't go out in public kind of thin), and it's still shedding. No bald spots. I'd like to know what this PCC user was experiencing so that i'll know (and prepare) if i'm headed in the same direction. Thanks!
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Arlene - we were at Coquina Beach in the Outer Banks for those photos. Those were photos we took but I had a professional photographer shoot photos...can't wait to see those.
To all the ladies just starting....I hope the photos help you see for yourself that you can be successful with cold caps. Yes my hair is thinner and I miss my long, beautiful, thicker hair that was always blown out straight and styled nice, but I am so glad to have hair and go places and have NO ONE know what I have been through. The real prize is the fact that my son NEVER saw me bald and won't have memories of that. Eventhough my hair is not "ideal" it is a huge relief to have it. I wish you all the luck with the caps and hope you are all as lucky as I was with them!!! If I can answer questions or support any of you - please PM me. I don't mind! We are moving this week out of state so the next few days/weeks will be super busy, but I will manage to sign on. I am happy to support any of you fine ladies!
A BIG thanks to all of you that supported me through my cap escapades and chemo....I can't thank you enough for the encouragement, support and kindness!!!! Hugs to all!
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LivCar - BC her hair was fine, but she had a lot of it. Her hair started to shed on day 24, and although it continued to thin, more on some days and less on others (she said that in the beginning she would get a fistful of hair each day), her hair held in there through sixth treatment (4 DD AC + 2 DD Taxol). Suddenly, during the seventh treatment, she started to get an awful lot of big scabs on her head. She said that her scalp was bleeding in a few places and always turned purple during. This is when something went wrong. Her part started to widen, and soon turned into a small bald spot, which gradually kept widening. After the eighth and final treatment, this continued, until she had two bald spots on her head. She was now no longer able to part her hair, but got along okay wearing a cap, as the sides were somewhat long, and could be held back in a ponytail. Finally most of her remaining hair broke off to about 1 inch strands. This continued to happen even after the chemo was over and done with.
She called Frank and asked what he thought happened. As I mentioned, he said that either the caps were too cold or the chemo killed her digestive system enough so that my hair follicles didn't receive proper nourishment to survive. When she told him she was very constipated throughout, he then concluded that her digestive system must have been the cause. He said that if he had known, he would have recommended silica compound, but she doesn't know if it would have been too late at that point. Her husband feels that the chemo was just too harsh and her body couldn't take it, despite their efforts in following all the Cold Cap rules to the letter.
She is now two months part her last chemo treatment and the bald spots have been filled in with short, gray hair. She never went completely bald, and the stragglers that held on are still there. She hopes her story doesn't diminish our beliefs, since they have been so many successful stories.
Even though you had the same treatment I think you had a completely different outcome. The good news is that it seems you will keep your hair and in 2 months you will have more. Good luck!
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I was so happy when I finished my treatment, I took some pictures and my hair was looking good, but now I am afraid I would go bald.
I need help. I'm very depress and being crying almost all day. I am in my 7 weeks PCF and I still shedding a lot, more than during treatment. I wash my hair today and is when I had shed the most. I have lost like 50% of my hair. Last week I lost my eye brows. My husband talked to Frank today and he said that my digestive system might not be working properly and recommended silica compound. I will buy the silica tomorrow. I would like to know if someone has had the same problem. I don't want to go bald.
Please someone answer me. I was not expecting to loose my eye brows on my 6 week after treatment.
I can not sleep0 -
Tiki - Please read Sashette postings. She is in her 6 months PFC. She was also shedding 7 weeks PFC and Frank suggested her to take silica. She did and she slowly stopped shedding. 3 months PFC she didn't shed anymore. She lost 50% of her hair, but I saw her and nobody can tell. Also lost her eyebrowns, she used Latisse and one week later she had them back. >
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Tiki,
You may want to add biotin as well. For those done with chemo, you can add this to promote new growth I think you can take silica during chemo because it is not an antioxidant, but biotin you might want to wait until chemo is over.0 -
Ralston, thank you! I will look for Sashette's posting.
Do I need prescription to get latisse?
Love,
Tiki0 -
Brca1Babe- thank you. I have being taking biotin in a multivitamin specially for the hair for the last 2 wks.
Thank you for answer me.
Love,
Tiki0 -
Ralston- could you ask Sashette, on what week did she start taking silica compound? Or do you have her email? Her case looks similar to mine. Also, I would like to know how to get Latisse.
Thanks,
Tiki0 -
Tiki,
I just wanted to write in b/c I can "hear" your anxiety in your writing. I have thin hair, went thru TC, and successfully used the caps. In my experience losing your brows and lashes at 6-7 weeks PFC is normal....many have this happen...mine thinned significantly about that time as well. This did not impact the success of the caps....I've said this to a few others, but I think we all felt that after the 21days PFC (when we would be getting next infusion but are DONE) hair would quit shedding. It goes on for weeks for many of us, one time at about 8 weeks I was sure all my hair would come out....but it does not.....it sheds...thins, (my part line and crown looked really thin). There are days it's hard, b/c after chemo your hair looks pretty good, but it does thin more....what I can promise you is that it will not all fall out this late in the process.
It seems most see growth around 10-12weeks PFC and shedding slows....a lot. At 7 months, I barely shed now...any hairs...the strong ones (about 60-70%) of my hair stayed and new hairs are about 21/2or3inches long. My brows and lashes came right back, within a week or two of losing them. (not much growth needed to show)
You can get through it! Give yourself another month....remember that others that went through chemo without the caps don't see their growth until 10-12weeks PFC, and you will only need to fill in where you've shed...it will happen quickly...all of a sudden you will see sideburns and short hairs at your nape.....
Best to you, love a fellow Penguinista....Lisa0 -
Lisa, thank you. I will try to relax today. I couldn't sleep last nigth. My hair it' s being growing in the ear and nape area. But it is the shedding that wont stop and yesterday was my worst day.
Lisa, you didn't use Latisse?
Love,
Tiki0 -
Tiki - I am sorry but hang in there, take all the advise given and hang on. Take it easy.
I have a question not related to PCC but regarding eye brows & eye lashes- my eyebrows are normally very very thick but i shapped (twizzed) after my first chemo and they have not grown back, looks good but thin:-( I ahve not been using latisse or anything on them or my lashes, i once asked my MO about latisee and she did not seen too syked about it; now since it is by prescrtiption is there an over the counter equivalent i can buy and use? Please advise.
Thank you ladies & have a good day.
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