Cold Caps Users Past and Present, to Save Hair
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Thanks for your suggestions, Everyone! Two more questions about Penguin cold capping:
1. Has anyone tried a sedative other than Atavan? Atavan put me in such a haze, but I didn't sleep. I would love to be able to nap during cold capping so that I could sleep through the dizziness.
2. I am a week post-chemo #2 AC and am in the great shedding period, which is very stressful, but I'm trying to be happy that I still have a headful of hair. My capper said that I'll continue to shed until a few days before chemo #3 and then I'll shed again but hopefully not as much because I will have already lost the hair at my neckline and temples, which is to be expected. Then it will be general shedding. For those of you who have successfully capped, does this timetable seem correct? Is there a point at which I can be confident that my hair will make it through to the end? (4 sessions of AC followed by 4 sessions of Taxol).
I wish there was more information available about capping! I'm shocked that I'm my oncologist's first cold capping patient at Memorial Sloan Kettering!
Thanks again,
Erica
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Elastogelgirl,
I think your results are awesome!! Congratulations!! I will be starting AC/T this week. Keeping my fingers and toes crossed that I do as well as you!
AGlimomom
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PatinMN,
I wonder the same. I am getting AC/T dose dense. so I plan to post my results. The results are so varied.
AGlimomom
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I start my chemo on Friday. I couldn't do the cold caps (single mom, too expensive for ID) but I was wondering if those gel eye masks you freeze would work for eyelashes? I am getting 4rounds of taxotrene and Cytoxan.
stage 1a January 2017. E+P+. ER+. 0/3 LYMP -age 51 tumor extremely aggressive
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AGlimomom-thanks for the hair compliment. I do think it's salvageable with the toppik. My worry is that I hear about loads of hair loss PFC. I just feel I can't possible get by with any less. So I was a little hopeless. But now that my shedding stopped and I'm only 6 days PFC...we will see? Maybe I just lost everything I was going to lose? I hope so? Anyhow I have never had to wear a wig so to me that is a success.
I want everyone to know I wore ski hats and helmets and some scarfs, and soft scruchies, all not advised. My head got sweaty and hot during skiing. I also fussed with my hair more than you are supposed to. So I may have suffered more loss according to protocol. I did not use a silk pillow case.
I did refrain from washing more than once a week, only with cold water and loads of babying. I did keep my caps super tight all over with lots of straps and bands. We did change the caps every 15 minutes. We did raise the temp of the caps to -21f after I got some frostbite on my ear. That's when we started changing the caps every 15 mins. We tested my scalp temp often between cap changes and it was well below 66f everywhere every time mostly mid fiftlies. We know we kept my sclalp evenly cold. We did not change my partline. I just streamed all my hair back evenly and left it like that.
I still have a ton of hair around the bottom. Mullet in my future!
Hugs e
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Faith-the only reason I wouldn't think frozen eye gel mask would work is because the cold caps are at sub 0 temps and applied an hour before and up to 4 hours after chemo with only changes as a break. Your scalp is actually In Hypothermia. I can't see how you can do that so close to your eyes and the delicate skin around them. Most of my lashes fell out 4-6 PFC. I'm 10 weeks out and they are just now at the point I can see them grow with the naked eye.
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That makes sense! thank you for you input - you saved me some money at the dollar tree!!!
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Hi everyone! My second chemo is tomorrow I think I have fixed the mistakes I made on my first one and hoping for better results no ER visits!! Lol
Tomorrow is #2 of 4 of the AC. How long after this treatment do you think I'll get my big shed? I've been dreaming about my hair all falling out! I think most people said between 18-25 days after first infusion. Tomorrow is 14 days.
The nurses in my facility are very interested in the cold capping and come into look at me and ask questions I hope someday everyone will have access to using the caps or machines as part of their treatment if they choose to do so.
I'll let you know how #2 goes!! Stay strong ladies!
❤️❤️
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Faith1965, there is Rupunzel and Hair to Stay that give you grants/ money to help you pay for the caps. Please look into it ASAP.
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hi look into Hair to stay / Rupunzel. And the cold caps people can ship over nite. Hopefully you can still try if possible
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Good luck tomorrow MJ! Is it common to only have 14 days in between infusions? Big shed happened about day 19 for me which was wash day before chemo 2. Got more out the washing after too but day 19 had the most hair. Like some others, I actually kept a ziplock baggie of my hair to get an idea of how much I lost. I was on 4 x TC. Lost about 35%.
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Elastogel girl thank you, thank you, thank you. I needed your post! I am halfway through TCx4 and am using Dignicap. I have lost way more than 50% of my hair... You can see my whole crown. Not totally bald but very Rogaine commercial "before" picture worthy. I don't want to leave my house. I am going to stick it out hoping for no more major shed and a jumpstart on the mullet. I just tried the toppik...applied by the hubby...and it looks good from a distance but a little like Devils food cake up close because he used so much.
I cold capped last week next to a woman on her last infusion... Also using Dignicap...full head of gorgeous hair. What the heck?! What is wrong with my head?!
I fear the PFC shed. I will have nothing left. I've been trolling this board for weeks. You ladies are awesome!
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bruinvol10-great job on your capping! Tomorrow I'm going to try and finish my capping at the facility. I'm looking forward to starting it so I can have the 2 weeks in between!
My biggest issues were digestive, dry mouth and a bit tired. I know it's cumulative but besides chemo day I felt pretty good considering.
Pamela my first 4 AC treatments are 2 weeks apart. Then I go weekly for 12 for the T. I think because the AC is pretty tough and is dose dense takes a bit for your body to recover.
Mid July I will be ready for radiation!
I'm so nervous for my shed!! Lol
MJ
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Pamela, 4 DD AC followed by 12 Taxol is pretty common protocol. I am doing that too. It was a hard decision to accept but I did a lot of research and the top BC specialist in the country uses this protocol for my type of BC, so I am comfortable now with the path in front of me. Makes for a long 6 months for sure but many out there have done this with good results for kicking cancer to the curb. As for saving the hair, 50%- 60% save rate is the best I have heard so far for this protocol, but I think that is pretty good due to how many chemo sessions we will endure. A of AC is the hardest on the hair and all the cold cap companies have been honest about this up front with me. PCC had the best statistics although no true studies to back it up. Taxol x 12 is at lesser doses but consistently in your system for 12 weeks. I found a study that showed that this had better results (for my kind of cancer) than DD x4. The point spread was remarkable. This is where research pays off. Someone on these boards convinced to go with PCC due to the gel straps and honestly, the Velcro straps they provide are great for tightening everything up! I cracked up at one post about "the pen" being returned. I ran out to their shipping box and threw that and their crappy thermometer back in lickety split. I can use my own markers thank you very much, here is your $1 back. Funny stuff in this new world of ours. Other than that, I am pleased with the caps and how they mold to your head. Very easy for my capper to manipulate during our long day together!!
MJPow. I am just ahead of you in cycles. Completed # 3 of AC DD yesterday. I started shedding on day 20/21 and it kept up until yesterday. Not a TON of hair but my wide toothed comb had way more than usual. I comb just once a day and after washing, which brought the most hair out. On the other hand, for the first 21 days, I had almost no hair loss, so this is probably the old/dead hair that would have gone with my normal (former life!) of brushing, styling, blow drying, shampoo/cream rinse; all of that stuff. This old hair will not be replaced, clearly, thus the hair loss dilemma. Today, just normal amounts of hair in comb. I think the satin pillowcases help. I have one on my TV watching pillow too. I have a Plan B in place if this fails miserably but am hoping for the best. For now, I can still go out in public and that is what counts. Plus, saving the hair follicles for the future!
Question for the PCC people - mixed information on washing. I have reread the instructions many times. "You must no earlier than 3 days BEFORE capping and you MUST wash on the 3rd day after." Then, the instruction states "Wash day!" which is day 2 before chemo, so they count chemo day as a day. So, based on how you read this, it might be interpreted in two ways:
#1 wash, no wash, Chemo, no wash, wash
In this method, they count Chemo day as one day in the total of 3 days
OR
#2 wash, no wash, no wash, Chemo, no wash, no wash, washIn this method, the days are counted BEFORE chemo day, which is not counted as day prior or after and this is what was recommended to me by my mentor and from what I can tell, on these boards as well. The issue with this method (which I have been following unfortunately, is that after chemo, the chemicals might have still been on my head for another day. I reviewed it again last night to be sure. Luckily, I got so stinking sick of the chemo smell, I gently rinsed my hair the day before wash day so maybe got the chemo out. Then washed gently the next day. I think the language in the instructions does not translate well. By gently rinsing, I use cold/tepid water and a light spray from my shower which I adjust by lowering the amount of water coming out manually. So it trickles out slowly and there is virtually no pulling or pressure. Takes a long, long time to rinse this way but it is gently.
Truly they state number #1 as the protocol, but I think a lot of people counted differently and did #2. Can anyone weigh in this and what they did?
Any help on this is really appreciated!! Rock on hairy sisters!!
Anne
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https://elynjacobs.com/2012/01/15/natural-alternat...
I read some of the comments here yesterday about Tamoxifen and then I googled alternatives and found the link above. Sounds good to me and wanted to share. I will talk to my oncologist about a new eating plan with supplements and hopefully, seeing an expert in holistic medicine. I already know what he will say!
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MJPow, Thinking about you today!
I'm 1 week PFC. My hair is so troll like - a cotton candy texture. What have any of you that are PFC done about the texture of your hair? My hair dresser has a color that is supposed to be very gentle to try on my grey. I just hope I don't harm it more. I wonder if using a different shampoo and conditioner would help. I'm still using the ACURE and even though it's gentle, it does nothing for the texture. Any suggestions?
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Regarding washing prior to infusion, the way I interpreted the instructions and the way I do it is this:
Wash, no wash, no wash, Chemo, no wash, Wash. So I counted Chemo day as day 1 of no wash. Not sure this is correct, though.
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Lowcountry--You are on the regimen I did. I wonder if the cap wasn't as tight as you thought on the first round. Also, I kept my hair parted in the middle and never fussed with it. The top is what is saving me from hiding the sides where I lost most of it. I pushed down often while it was on my head. The big shed was the worst I experiences. I felt like after round 2 it was a steady shed, finding hairs on me all the time for a few weeks. Then rounds 3 & 4 were just hair that came out when I combed wet or dry. I'm 10 weeks out today and STILL got a good combful out when I washed this morning. But camouflaging is the way to go. No matter how bad I know my hair is, people are surprised when I mention chemo. I was at a wedding and my extended family who haven;t seen me kept telling me they thought I would look more like a cancer patient. I drew on eyebrows, wore false lashes and sprayed the crap out of my hair with brown cover up. Here's the result:
Those strands of hair in front are hiding this on BOTH sides:
So just continue with smoke and mirrors!!!
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Pamela23 - Fantastic results on your hair. I most definitely have to find some brown powder for May when family visits.
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I was on Dose Dense AC every 2 week for 4 times then Dose Dense Taxol, every two weeks for 4 times. My hair was manageable (see pics on 605), until the last 2 weeks. I have lost an alarming amount of hair. I think I may have to get a wig. I was using Penguin Cold Caps. I think there should be a thread just on chemo type, frequency and results post chemo and type of cold cap. Right now I am wearing bandanas and have purchases a few chemo caps for future use while I decide what to do. I am two weeks PFC and it definitely got worst with this final round of DD Taxol.
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hangin in- I too lost most of my hair at the end. It seems impossible now. I have found relief in using toppik.
See my before and after toppik photos on page 608.
My hair feels wierd and looks wierd. I think time will heal it all fast. At least there are some tricks for us in these many bad hair days.
After almost three weeks of constant lossses, My hair has stopped shedding since my last DD taxol a week ago.
Let's hope we can save some!
Hugs e
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elastogel I'm so glad you found something to hide the bald areas and make you feel better about yourself! I agree, Toppix is amazing. I was completely bald on top and Toppix hid it great.
Patin- there are some European studies that compare the different chemo protocols. I think I just pluggd in some keywords and they popped up. JAMA published a study done in the USlast month and I can't remember if it compared different drugs. They ended the study early after it became obvious cold capping works. The news was all over the story like it was something new. Not for us! It's neat being a part of something that is in its infancy in the US.
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lowcountry /runner70-thanks for the thumbs up! I will try and post anything relevant. This cold cap thing is worth it! Especially if you are on something less harsh than AC n T. I know everyone here wants to know results!
I think most of us never really knew how hard it was going to be to fight for your hair! then after almost done to lose so much it seems impossible! For me I was feeling like I failed. now with toppiks help it makes it seem much more worth the effort.
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oh I forgot the real reason I came to this site today. I got my eyebrows microbladed yesterday! I really wish I had known about this before starting chemo. My brows were already scrawny and grew weird and chemo made it worse. I'm tired of that and still losing a bunch every 2 months so I gave in. It takes 2 weeks to get the final result but this is the shape they will be. The color will lighten some and instead of solid brow it will look like little hairs. You can kinda see them already.And as you can see, my poor lashes recently experienced another shed and just started growing back. In a month I'll have thick, long lashes again. I use Revitalash on them. It's similar to Latisse but way less expensive and non prescription. You can get it on Amazon.
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catgirl- thank u!! I'm ready!!
Runner70-that's awesome! Love the brows!
Pamela your pics look adorable!
On the PCC so far I wash 3 days before chemo and 3 days after not counting chemo day.
I braid my hair to wash it because it tangles so easy! I know they said no braids but I'd pull my hair out if I didn't. I keep my hair in braids 90% of the time because it's naturally curly it tangles into knots. We shall see0 -
Runner70 - great brows! I think your lashes look nice, too. Hoping the Revitalash will give you results you love. I will try that when the time comes
MJPow - great pic. So great that you have found a way to manage your hair that works for you. Just have to experiment to see what works.
Elastogelgirl - amazing news about the shedding stopping just one week after your last treatment! I really hope for similar results. I still have two more treatments left which is way too long to hold my breath.
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Elastogelgirl
Try this for low acid coffee. My husband has been making it for 15 years. You use whatever coffee you want and have it ground course. Then you pour water in and overnight you get coffee extract. Then pour 1/3 coffee plus 2/3 hot water and put in microwave. Keep the coffee extract in fridge.
On Toppix:
Did you get 2 colors of Toppix? I ordered dark brown, but I think maybe I need medium brown too.
Jees, I had to edit this two times to get things spelled right, there are probably more misspellings. Chemo brain.
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LowCountryGirl----I used the DIGNICAP SYSTEM and lost at least 50% of my hair on 4 rounds of TC. And I had A LOT of hair. I'm still very happy that I was able to use the Dignicap as it is much easier! I am just happy to have some hair. My last treatment was Feb 10th and I am now seeing new hair growth where I have had bald spots (top of head and both temples). I am still having a lot of shedding when washing 2x a week.
Pamela23----I started Tamoxifen last week. I have stressed over taking this med for months so much so that I almost did not take it the day I was to start. After one week, so far I have only noticed a small increase in my hot flashes----however let me explain that after chemo I was having Extreme hot flashes every 20 mins day and night (NO SLEEP). Once I completed chemo MO gave me Effexor (wasn't thrilled but very desperate). The Effexor worked! Now, that I started tamoxifen I feel more of what I'd describe as warm flushes rather than Hot Flashes and they are maybe 4 a day and 3 at night (so far no night sweats). Also I am taking only half the dose of Effexor so one pill at night---just wanted to be able to sleep. Therefore, I do have the option of a second morning dose of Effexor. Now, this may all change after an accumulation of tamoxifen in my system.
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hanging in-thanks for the coffee tip! I'll look into it.
I bought two colors of toppik...Amazon tricked me..I got a GIANT bottle of med blond on the first try and a teeny tiny bottle of light brown on my second...read all about your product on Amazon! I keep getting tricked. When I looked back at what I bought it was right there! just in the fine print. My blurry chemo vision has been hard on me.
I'd like more light or dark brown for sure. The blond is good for blending in my natural dark mouse color to the previously beautiful salon colored blonde I have left ...I don't need all this blond color.,
I'm planning on growing hair again...knock on wood!I'm happy to send some in an envelope to anyone here who wants to try the med blond. The only reason I like my huge bottle is the applicator fits on it. I'd like to blend my med blond with a darker color if anyone wants to trade some blond for some brown.
I don't use the comb at all.
Anybody who wants to try the med blonde private message me your address and I can try figure a way to send it.... I've got plenty of time
I found free samples of other products that do the same thing as toppik.
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Elastogel--your before and after pics should be an ad for Toppik! It looks amazing!
Lovesgreenthings--I had chemo on Wednesdays. I went by their schedule and washed on Monday and Saturday. Then every 4 days in between. Still do 10 weeks later.
Go Kale--I skimmed the article and can't wait to read it more thoroughly. I agree tamoxifen is a bandaid. They studies focus on the 5 year/10 year recurrence rate which cuts your risk in half compared to just chemo during those years. It also protects your other breast during the time you are on it. I really want to get to the root of the problem--a compromised immune system that wasn't strong enough to kill the cancer cells before they became too strong. I think a total lifestyle change IS necessary. So far I've changed my soaps and lotions to paraben free. I am also eating more vegetables--making sure to get at least 5 servings of fruit and vegetables a day. Cut WAY down on sugar, exercising 5 days/week. I changed to organic fruit/vegetables if they have a peel that I eat most of the time, also limiting red meat. Drinking matcha tea. Just one small change every week. I was always healthy (sugar was my vice though!) but stepping it up. Been reading a lot of studies and watching some documentaries on food which is motivating and actually my energy is back to prechemo, even with radiation.
Summer--I feel like the chemo hot flashes were the worst! It would be subzero out and I'd be sleeping in a cami & underwear under my ceiling fan! Now I feel i get a warm sensation 1-2 times/night around 4 or 5am. So doable!! Just don;t need to increase that!
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