Cold Caps Users Past and Present, to Save Hair
Comments
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So mad at my oncologist office. They said they can't take a freezer because they have no room to put it but I could use the dry ice. Seriously, you can't find a single spot to put a freezer. I feel like everything is so much harder than it has to be.
Any shampoo/ hair product recommendations? I am trying to baby my hair already. I have an appointment for a cut and color for next week that I will have to cancel. I can already see the gray.
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Anyone told that they shouldn't do the cold caps because of the risk of brain mets? Now they are saying it is risky and I should really not use the cold caps.
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Cold Caps are not going to keep blood from going to your BRAIN. The brain is supplied by deep arteries going up from the neck into the brain. We don't put the caps on over the brain blood supply in the neck...and even where it comes down in the back of the neck, those arteries are deep, and the caps are going to be able to cool the tissues to that depth, IMO. So there really isn't a biological basis IMO to believe that cold caps will increase the risk of brain mets.
If cold caps kept blood flow from actually going to your brain, we would have all passed out while doing them. IMO, again.
The SCALP is supplied by superficial arteries. Cold caps WILL reduce the amount of chemo going to the scalp. So yes there is some concern it may increase scalp mets risk. However, breast cancer rarely metastasizes to the scalp, and studies have shown scalp mets is not increased significantly in patients who use cold caps.
Sometimes you just have to make the docs think logically about this. LOL
Sounds to me like your doc just really doesn't want to think about accommodating you with cold caps and is trying to scare you off. Maybe not intentionally, but the end the result is the same.
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Brain mets - no. The chemo doesn't get to the brain anyway. The usual concern is scalp mets, which are very rare and which, according to studies, don't occur any more frequently in cold cap users. Look back just a bit to makingway's links - I think she posted links to info on that issue. I've read this entire cold cap topic from the beginningand no one here has had any scalp mets. I'm sure they'd come back and post if they did!
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PatinMN, LOL - yeah, you know they would be back here telling us about it! Good point!
Yeah, I think I read chemo typically can't cross the blood-brain barrier, but I wasn't sure if this was true for all regimens.
And the docs would be crazy to think the cold caps could actually penetrate past the skull and cool the actual brain, lol!!!
This whole argument about brain mets is quite funny when you think about it logically!
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Thanks all. I am moving oncologists. It put me a little behind schedule but the one I am moving to has a freezer. I swear it shouldn't be so hard.
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Good for you melb44! I would move to another MO too!0 -
Oh my goodness....I don't post here for a month and I miss 12 pages of posts. Skimming through I am seeing the usual concerns from current and prospective cappers. I remember the anxiety well. I am here tonight to let everyone know that I am 13 months PFC and my hair has fully filled in. I gradually trimmed my hair as the new growth grew out and as of today's trim my old hair is now as long as my new hair! This is the day I was waiting for. There is no sign at all of ever doing chemo. My hair is shoulder length and as thick as ever. I too worried it wasn't working and I too had to hide some bald spots. I had days when I thought it would be better to just focus on getting well and forget my hair. I am so glad I hung in there. My hairstylists recommends capping to anyone she knows who is doing chemo. She compares me with those who lost their hair and really believes it is worth it. Breast cancer sucks. Chemo sucks. Avoiding the trauma of being bald is a small victory that I wish for us all.
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I had surgery to fix my expander yesterday and while I was there, I told all the nurses about the cold caps. It's amazing that so many in the medical profession don't know about these things!
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Starting chemo Tuesday with cold caps. Can anyone give me advice on shampoo and other hair products? Just want to make sure I buy the right stuff.
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Has anyone on the THCP regimen had them give you the Perjeta and perception last so it counts as time after????
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first cold cap baby!!!!0 -
Alibeth, you look a lot happier than I did for my first cold cap. It was so darn cold and I almost threw in the towel! But after a few minutes, I adjusted and I'm so glad I did.
Melb44, any organic shampoo without sulfates should work. I started with Dermorganix, then Burt's Bees, and then switched to Moogoo because it helped with the flakiness that can develop. If that happens, putting a little apple cider vinegar in the shampoo helps along with rinsing with about a tablespoon of the vinegar in two cups of cool water.
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Alibeths - You look great!! I see your AC-T too. I will be joinging you next Tuesday.
Thanks Leslienva - So helpful. I am trying to baby my hair already so I want to get the right shampoo.
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Wow Alibeths, you look great & happy!! I'm definitely with Leslievna on this one - I was so cold, too, thought I was going to hurl. And to you & melb44--- 9 weeks from today will be my last Taxol on the AC-T regimen. So far, so good. I'm shedding a lot but I'd say I'm only down 15% of my hair with the AC & 3 Taxols completed...praying that I have enough hair to make it another 2-3 months...
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go Ali!!!
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yeah ali!!! You look great! Just found out I'm triple negative too, yayyyyyy.
So went to my chemo class today with one of my onc's nurses. She was great, I brought up cold capping and she also was hesitant again but told me to just bring it up to my onc next week when I see her. At a nurse conference yesterday someone had brought up PCC and one of the nurses said it worked for one of her patients but not really for the rest. BUT... it just means to me that at least people are talking about them! 0 -
I was tn my first time. My return cancerous node is her 2+. Crazy!!! Had my first chemo today. One down, 5 to go
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Alibeths - this is probably too late since you had your infusion today, but I'm on TCHP and I do the Perjeta and Herceptin first, that way I'm at the infusion for less time, and it's included in the 50 min I wear the caps prior to the TC portion. Then wear the caps for Five hours after the start of Taxotere.
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Standard protocol is the herceptin, perjeta are first. You have to request that it be last. This saves you @ 2 hours of extra cold cap time because you include it in the 4 hour period after the other chemo drugs. The 50 minutes before chemo cold cap time can be started when premeds are started.
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ya. I can't understand why it would matter and will be speaking to the mo on Wednesday.
Yesterday was my first cc!!! It was hard!!!! I mean COLD. The first 3 minutes of evey cap is unbearable. OMG!!!!! 😳 does it get easier?????
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also how dontou guys Put your hair back?
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I don't get premeds through IV, I take pill forms of the steroids now, so I just include the perjeta and herceptin in the 50 min time, and then do Taxotere first, so that way the carbo is included in the 5 hour wear time. You'll find what works best for you! Good luck!
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Alibeth, yes it does get easier. I think I took several pain meds about an hour before starting the caps. Just leave your hair down. Protocol is to not pull it back or up while cold caps are on
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thanks!
But when cold caps e off how do u wear your hair
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Usually just straight. You can do a loose braid with a scrunchie, but nothing that pulls on your hair. A silk pillowcase is a good idea, too. I actually used foam rollers to curl the ends
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one more ?
When you shower in hot water did input hair in shower cap
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my mo suggested taking a couple of norco an hour before capping started, it made a huge difference as to how comfortable I was. You might ask your fr about doing tha
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Alibeth, yes, I always used a shower cap
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Today was a hair wash day for me, which are always bittersweet, because more hair falls out. This is a constant battle. I'm trying to remind myself to be grateful for how much hair I have left on my head.
My "bald spot" seems to be getting a little bigger. I'm pretty sure it's because the caps weren't close enough to my scalp the first round, so I make it a point to press down on that area throughout the infusion to get it close. And the little bare spot to the side is likely because that's where I usually pin my hair back, so I'm going to be trying out new hairstyles to avoid clipping back my bangs.
I don't want to discourage anyone who is starting the cold cap process, as this experience is different for all of us. Toppik has worked really well at covering up the bare areas. I haven't noticed any new growth, yet. When did you guys see it?
Below are pictures of my hair from today. At least there's still length, and most people can't tell that I'm in the middle of chemo.
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