Cold Caps Users Past and Present, to Save Hair
Comments
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I am 8 weeks PFC and while the areas above my ears where I had a lot of hair loss have good growth (started after round 4, so another 6 weeks time) and even around the area framing my face over the past few weeks, however the top of my head where I had thinning isn't showing much action for filling in.
I kept most of my hair but with the side hair loss the front of my hair is a bit thinner than I would like. I am still shedding but that is to be expected, and it isn't anywhere near as much during hair washing that as during treatment.
Anyone have any experience to share about differing regrowth patterns? I expect to see some changes in the next few weeks I hope. I did have a 7th dose of Perjeta so maybe that might be the difference.
FYI - My leg and pubic hair growth showed up last week and now my eyebrows regrowth is showing also -- recognizing that it takes a while for the hair regrowth to reach the skin surface.
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agness, I'm curious about hair growth too. I didn't see any baby hairs during chemo that some people get, but I did start to get a tiny bit of leg hair between txs 4 and 5.
I'm still terrified of permanent hair loss, despite the caps. My poor hair is so terribly thin.
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I didn't notice that I had lost much hair at the top of my head until it started growing back in...it was sticking straight up! It took a while to notice it. I would say around my hairline and temples I started noticing a lot of growth around 3 months PFC. Don't remember about top of head though.0 -
Around 6 months is when I really started to notice a lot of growth. Of course, it was probably growing before that but it became obvious at 6 months. There were lots of baby hairs in places I didn't even realize I had lost hair. I shed for 4 months PFC, so maybe those who stop shedding sooner see new growth more quickly.
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Thanks for sharing your experiences. I guess I will just have to be patient and be glad of the hair that is regrowing.
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Hi Ladies,
Going for my first ct infusion and my first cold cap adventure.
Thanks to all those that came before me and shared their experiences here. You've been such a source of comfort and inspiration.
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Good luck, SueBe!
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I'm selling 6 elastogel caps that I had used during my chemo PM me for more info.
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Hi all- I had my first infusion today Taxotere/cytoxan. While i was capping, icing my nails and icing my toes in plastic buckets. I took this pick, thinking about the "Ice Bucket challenge" thats all the craze right now. This is the true test of how tough you are! Sticking your feet on ice and toes for an over one hour (while your scalp and fingers are iced too!)
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Yay, barremom and SueBe…one down! The ice bucket challenge is a walk in the park compared to a day of capping. I'm sure you both rocked your cold cap (or Paxman cap)!!! Now try to get some rest tonight, drink LOTS of fluid, and get up a couple of times during the night to pee and drink more water and take a nice walk tomorrow to keep things moving along. One step closer to being finished!
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One of my friends that helped me with cold caps during chemo was going to challenge me to the ice bucket challenge. I yelled at her and told her after wearing cold caps all day for 4 infusions gives me a pass.....I said I would do a wine drinking challenge to support breast cancer though. Then we opened a bottle of wine........0 -
MDG! I love that... a wine challenge great fun! Id have to say today the worst part was icing fingers and toes. As for the head, after 10 minutes it just didn't feel "cold" it felt more numb. I kept asking "is this thing working?" (since I am using the Paxman cold cap system). I guess it was, since when i took it off there was ice on my hair!
HOPE49- I printed out all the notes you sent to me and have been following them. From taking probiotics, icing nails and even eating oatmeal this morning! Thank you!!!
Taste buds still good so Im eating while they are alive and well. just couldn't ice mouth while icing everywhere else! Maybe next time.
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Barremom - congrats on getting through the first treatment! One down!
This may sound dumb, but I start chemo Wednesday. When is my last official warm hair washing day?Sunday? Since I get treatment weekly, I only get one shampoo a week - which is good and bad. Thanks!
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Thanks Daniella-- Wasn't as bad as I thought-but side effects haven''t kicked in yet-so I'll keep you posted. The hair washing question was HUGE in my house this week-my girls and I disputed the math. In the end I washed on Sunday for todays chemo. From all I've read Monday would have been fine BUT I have very thick hair. I figured the less "fluffy" it was would only be to my benefit as cap would fit closer to scalp. In the end Im glad I did as I had to use an XL cap (Paxman comes in sizes).
I want to do everything "perfectly" but I keep saying this or that,in evidently, goes wrong won't make or brake the whole outcome.
Maybe Sunday is a great day for you-if your working then its a good way to start off the week-Like Jennliza did If I remember correctly. Then by end of week you're kinda skating ; by clipping up.
wishing you all the best Daniella
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Daniella, I usually washed my hair twice a week on weekly chemo. Once a week might mean too much icky build-up on your scalp. I sometimes just rinsed my hair too. I was trying to walk for a half hour most days, and the least bit of exercise makes my head sweat. Rinsing helped.
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For those wondering about hair regrowth post chemo. Have faith, it will come in, and very fast once it starts.
I also worried that my hair might not fill in after chemo ended because I didn't see much sprouting for about two months. Just when I was certain it would not regrow, I noticed an army of half inch long, slender and very pale hairs growing all over my head in-between the hairs I had kept by cold capping. I hadn't been able to see them because they were almost transparent. As the new hairs grew longer they began to show color and increased in diameter (the hair shaft thickened) until they looked normal. I believe that the follicles of the hair I shed during chemo and afterwards - I shed for 16 weeks - went into their normal cycle of a several month resting period before starting to grow replacements.
I was thrilled to find that the new hair filled in quickly giving my limp and somewhat thinned post chemo hair lots of body. I didn't even mind the Alfalfa type cowlicks I had on top of my head for a while until the hair up there got long enough to be brushed over into a semblance of order.
I have always had straight hair; however, the new hair came in wavy for about four to five months before settling into its old pattern of straight hair. The waves have slowly moved from next to my scalp to farther down as the hair got longer and now they lie on my shoulders. The effect is that I have long straight hair with a bit of chemo curl on the ends to remind me of what I went through year and a half ago.
I recommend taking Biotin capsules and liquid BioSil for hair growth. They have done wonders to make my hair look heathier than it has been in years. I get compliments on it all of the time. For those who may not know about it, BioSil has been clinically proven to strengthen and thicken hair. I plan to keep taking it, especially because I am on Arimidex which can cause thinning hair.
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Thanks Hortense,
Great to hear :-) I am between tx 2 and 3 now and shedding is def escalating...I'm not *quite* panicking, but...can definitely say hair is thin and limp...sure helps to see ladies who have made it out the other side...
Rain
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PCC says you should wash your hair at least 48 hrs before cold caps....and I do...just about 52 hours before. My shedding has slowed a bit compared to that first was post chemo #2... The other 2 washes post chemo #2 have been ok...maybe 100-150 hairs lost. I would say I average @50-80 hairs...who knows maybe slightly more on some days and slightly less on others.
I wash my hair once a week and wet it down most days with a spray bottle to give it some life. I even blow dry it upside down with cold air...to give a lil body. I hold onto the scalp when I do that..,so gently.
Oh...so it seems my port is NOT infected. They don't know what was infected...the antibiotics are working and I had chemo through my port on wed. They think it could have been a skin irritation/infection from my latex allergy. So for now I remain on antibiotics and my port stays in...woo hoo!
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Horetense - I read about Biosil....I think I will get that PFC...or shortly before chemo ends to get into system. I'm currently taking Biotin... I have another 3 treatments....so think I will start Biosil with treatment 5.
Just like Latisse....most of these products for hair growth is good Post Chemo...chemo just attacks anything that is trying to replicate faster. My eyebrows are really thinning...thankfully I had thicker eyebrow...so using my eyebrow pencil extensively to draw in the bald spots.
Hope - good advice for SueBee....1st round was the tougher than 2nd round....just did my 3rd round....nausea came on quicker but not too bad. I expect the steroids to wear off around 3 today.... Definitely drink as much water as possible. I try to drink at least 10 refills of my 16 oz water bottle/day from wed -wed....I prob drop to 96 oz the rest of the time...and never less than 80oz. My kidneys wish I drank this much before chemo!!!!.
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Hi, barremom64 :-)
I am so sorry for just responding. I am always so tired, it is making it hard for me to keep up with everything.
Anyway, to be honest, I seem to be doing everything the others are doing as far as sleeping on a satin pillow case,
washing my hair once or twice a week. I do not scrub my head at all. I use a cup and gently run the soapy water
through my hair, use a wide tooth comb. Not using my brush at all, etc.
I think the Taxol is easier on the hair then a lot of others. My medical oncologist actually said he was somewhat impressed
with the cold caps after seeing my hair. He did say that he will sing the praises of the cold caps, if I still have hair after
the A/C treatments. Apparently, that combo is very, very harsh. So, we will see. All I can do is continue using the caps
and saying my prayers everyday as I have been.
I hope you made out okay at chemo yesterday. What treatment did you get? How was the Paxman experience?
It looks so convenient compared to the Penquin cold caps. Have faith, I believe it will work for you. I am sure they
want their clinical trail to be successful.
Just a note-for the first 2 1/2 weeks after my first treatment I must have woken up in the middle of night 3 or 4 times feeling for my hair and checking my pillowcase for hair.
It was horrible and so stressful, but it did pass..Thank God, I so needed a good night's sleep.
Good luck and hang in there.
We will all get through this :-)
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OK. I am really worried that my head didn't get cold enough. It's because the infrared thermometers are so inconsistent.
The first round of the caps went well, but the second round they were not as cold as they should have been. For me -34 C.
I am going to cap today for a while and tomorrow too. I think it will be work taking the caps out of the boxes the second time lay them flat over the plastic covered dry ice so they cool down better.
Does anyone have suggestions?
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Hi, dancetrancer :-)
I second this;
HA! Here's to proving our onc's wrong!
P.S. I REALLY like my Dr. too, he has been great! I just want him to see they work, so he can recommend them, or at least
make people aware of them. To be honest, though, now I am so worried about the A/C..I only have one more Taxol treatment
left, so I will be getting it soon :-( Man, as if we do not all have enough to worry about.
P.S.S I read your bio. You must be one STRONG woman. You have been through so much. I am so sorry you had to endure
all of that. It just seems to unfair, especially, at 43. I glad I didn't read it earlier, though. I had my port put in Monday and the chance of a collapsed lung was mentioned, but the nurse said it wasn't very common.
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Hello, jc254.
Great news on the MRI results!!!
Thank God!
I can not imagine how stressful that would be, then the electric going out!
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Hello, wyomama.
Wow, you and your hair look beautiful..
I would have never ever thought you just finished chemo!
Thank you SO much for taking the time to post the picture.
May I ask what chemo medications you had? Sorry, if you posted it.
I am fairly new here.
I have had 3 treatments of Taxol with one more treatment left. Then I have 4 of
the A/C which I am completely dreading and scared to death of :-(
Thank you again :-)
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Hi, Danielle.
I am using the Penquin Cold caps with Taxol treatments.
I had my 3rd treatment yesterday and I have honestly lost very little hair.
Also, my Mom was on Herceptin about 4 years ago, she never used the cold caps
and never lost her hair.
Good luck, I honestly believe you will be fine :-)
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jennliza - thank God the port was not infected. Awesome news about the hair. You'll have most of all of your hair at this rate!
Hortense - I use silica gel that has 420 mg per tablespoon plus the 5000 biotin and whole host of other supplements. Geralyn told me to take 250mg so silica 3 xs a day. I'm still questioning if this silica gel is really that high of a dosage. I take it twice a day. I didn't buy biosil bc it said only 5 mg of silica per drop. It has helped my hair from falling out from stress and post nursing hormones. Wish I knew about this months ago when I stopped nursing.
Lynda - yes, taxol is supposedly much less harsh. Then again, I'm having 12 treatments. Most of the others I've seen on this board with just taxol did well, so I'm staying positive. So glad it worked for you. You're going to do great on AC! Lots of women here have had AC plus 12 treatment of taxol and still have hair.
I'm also fasting before and after to reduce toxicity. I reached out to Dr. Longo, the doctor who studied short term fasting and chemo. He suggested 48 hours before and 24 after since I'm getting weekly treatment. Not only will this help reduce side effects, increase chemo effectiveness but, hoping it also helps with my hair. It worked for Agness!
My caps just came. The box is just sitting in my foyer staring at me. I guess this really is happening.
As for the ALS ice bucket challenge, I'm with MDG. I have enough ice going on my head. I'll just donate, thank you very much. Thanks Maria for everything
Prayers always to all my "sisters in caps"
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hi Lynda!
I did taxotere/carboplatin/herceptin/perjeta.
I've heard a/c is a bit harder, but everyone I've read on here that's done a/c has been successful too, so I think you'll do great!
And thanks for the compliment, my hair is a source of simultaneous sadness and joy right now. I'm so incredibly grateful to have hair at all, but my hair has always been really really awesome, like Kim kardashian's extensions had nothing on my locks amazing, and right now I think it looks hideous. But I have hair. I have hair. I have hair.
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Thanks hope49. I am drinking water and took a small walk this morning. I'll take another small walk this afternoon.
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I just got off the phone with the nurse scheduling my first treatment. She said that there was no way to have herceptin infusion last. That I was going to have premeds, herceptin for 90 minutes and then taxol. I asked if they could switch it and they refused - said it was impossible bc that's the protocol. Could this be right? What do I do? It really makes it an extra long day. Any suggestions?
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Daniella, I was told the same thing - that herceptin would come before taxol, but only for the first infusion. After the first infusion they didn't care about the order. No one could explain the reason to me, and when I arrived for my first infusion I talked to the NP and she agreed I could do the taxol before herceptin. If they continue to insist on herceptin first for you, remember that you don't need to start capping until 50 minutes before taxol starts. I hope you can get them to change their minds!
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