Cold Caps Users Past and Present, to Save Hair
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JCS28 and EstelaLorca: Thank you! I will get a Latisse script from my dermatologist before chemo starts and check out Anastasia Beverly Hills at Sephora.
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Heidi16- I have been using Brian Joseph gel for my brows and lashes. Haven't lost any yet.
(See pic below)
Phaila- best of luck with your first treatment and cold caps! You'll do fine. The first 5 minutes are super cold, but after that, it's down hill. What does the TC stand for?
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Nolagirl112: Thank you!! I will get this one too. Think I will apply the products on my eyebrows/lashes different times of the day. Btw, I noticed you live in LA, I think some hospitals there have the Dignicap System, only FDA approved cold cap that doesn't require manual freezing, i.e., is instead continuously holds the temperature through an external unit.
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phaila - best wishes for your first capping and chemo today! And yes typically it is only taxotere that you ice hands/feet. Start 15 min prior, continuing during, continue 15 min post. And it is not to prevent neuropathy (as most people think), it is to prevent nail damage/loss.
Also, you may want to ask your onc if you can suck on ice chips during that same time period to help prevent mouth sores.
The time doing all of this during Taxotere was the roughest for me. Capping is nothing in comparison! Good luck!!!!!
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I've got bags of peas and ice all ready. I read all over that icing was also for neuropathy
???
Getting premeds right now:(((
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Good Luck Phaila!!!
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Yep, everyone thinks it is for neuropathy. It's like an urban legend on bco, IMO.
I did a lot of research on neuropathy from chemo. Their best guess is it comes from damage to the sensory neurons at the level of spinal cord that supply the skin of the hands/feet. No amount of icing will save one from that. But, the icing should help prevent nail damage, as it will keep chemo from going to the extremeties by causing vasoconstriction.
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Phaila - I hope capping is going well for you. If you start to experience any symptoms of neuropathy, talk to your MO or chemo nurses. I had read about l-glutamine and B6 for neuropathy, and when I started getting the tingling my chemo nurses gave me some sample packets of l-glutamine to try. I think it helped (and I took the B6 also). I think peripheral neuropathy is more common with taxol (which I had) than taxotere - you may not have a problem at all.
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Question for all cold cappers regarding cold inducing nausea:
I had my first infusion Tuesday and found that with each and every cap change it plunged me into nausea for a few minutes and throughout the day was less able to quickly recover from that. No pain, no coldness, just nausea. Yuck! The first few caps it only lasted for a few minutes but later in the day felt nauseous for most of the time. I think it was combination of AC infusion and cold capping. Anyone have this experience? Or any tips for how to alter my anti- nausea drugs to prevent this next time? I remember reading that one capper had this happen with the first cap and she sucked on ginger slices but didn't have it the rest of the day. The ginger slices didn't help me at all. Grateful for any help to change this from happening for my next infusion. Otherwise, feel pretty good and it finally subsided about 9:00 pm the night of infusion.
Thank you!
ILoveArt
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I took supplements as well for neuropathy prevention. Definitely clear it with your onc and do your research. Nothing is proven yet, unfortunately.
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ILoveArt - I found Ativsn was helpful for the nausea associated with the cold.
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my cold cap was like it wasn't even on. It didn't feel cold at all but I know it was because of the laser gun. I hope it works...:(
I'm a tad worried
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one downside to these caps is my set came stinking of cigarettes:(
Not a fan of that smell for 7 hours
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Phalia - do you have thick hair? Maybe that's why you didn't feel the cold? I can feel for you that they smelled like cigarettes...OMG 😱 Did Geralyn send to you? I would call her and let her know.
I have heard about the nausea with the caps, but that only happened when my husband was too rough putting them on. He is more gentle now, than before (after our "talk") and I haven't been nauseus since. I packed ginger candy to use, but haven't had to use it yet.
I found a B-12 raspberry spray at whole foods that is delish! And then I also take a B6...both to ward away neuropathy.
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I took Ativan during every chemo and never really had nausea.
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I had Emend (and maybe Zofran, too? can't recall for sure) with every chemo - maybe that's why I never had any nausea with the caps?
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now my hair smells like cigarettes and since I can't wash it I'm stuck with it😡
I was going to complain but I kind of think she might be the smoker ya know?
I guess my hair is thick. I thought it was medium but I'm pretty sure I wasn't getting maximum coldness. Also my head is huge and these are just too small to cover all my spots:( I wish they had different sizes. it's a hell of a lot of work to have this not save my hair. I'm crossings fingers!
Here's my hair. Funny I found about 400 pics of my boobs (I have a rash) and only one of my face. I'm amateur photographer and never ever have pics of myself! On purpose
Also here's my throw up meds. Haven't seen you all list this one
And I didn't really get a schedule for it justtake when needed up to 4 times a day
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Hey, I haven't checked in here for a while. Just a quick note to let you know that Latisse can't prevent eyelash/eyebrow loss during chemo (nor does the product claim to). It happens late in the cycle. Some people lose them. Some don't. I used it through chemo and lost lashes/brows anyway. So you may want to reserve it for later. That said, it totally hastened the regrowth of my lashes. They came back super thick and in a shorter period of time than I think without.
Good luck!
PCH
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pch: Thank you! What regimen were you on and how many cycles? Approximately when did your eyebrows/lashes start to fall out and what makeup (techniques) did you use to conceal it?
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Phalia- did you get the headbands too? I think those are for thicker hair. And I got my caps from Geralyn and they did not smell like smoke...I definitely would have picked up on that.
Just finished #4 Taxol...the textbook said I should be shedding today...nothing yet (knock on wood) ...I'm on pins and needles
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yay Nola!!
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Hooray Nola! I keep shedding and shedding. Thankfully had a lot of hair to start with, but terrified that Taxol will generate another big shed, and that BMx will too. Plus, my ski helmet kept pulling my hair out
Guess that's not something to complain about, really. 0 -
phalia, I had many throw up meds, for AC, Dexamethasone, Zofran/Ondansetron and Emend/Aripiprazole (?) an hour prior,and on a schedule for the next few days, and the one you have as needed afterwards….
For Taxol, nothing but the one you have as needed….
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Joining in with some questions! I'm set to start AC next Tuesday the 29th and just orders 4 of the elastogel cold caps today. I ordered 4 because I want to make sure that I have enough cold to last from start to finish of a treatment, I'm scheduled to be there 3 hours. My neighbor who uses cold mitts and booties for neuropathy said I should be able to get 45 minutes out of one cap. My first question for those with experience is is it possibly for me to change them out myself? My mom is coming with me to my first one but I had planned to go to the rest on my own. Second question, what do you all use to measure the temp of your caps? I want to make sure they are cold enough from the start and make sure that I change them as soon as they warm up.
Thanks for the tips!!!! Really hoping this works just so that the whole world doesn't have to know what I'm going through, namely my very gossipy coworkers and my 7 and 3 year old daughters!
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you have to get a infrared thermometer.
Not sure about 4 being enough. You have to wear 50 minutes beforehand and 4 hours afterwards! That's a lot of cap changing. You might want to order like 8 more especially if you're changing yourself. I'm sure you can sell them all on eBay afterwards. I really wish I knew someone here who was on my same chemo schedule don't could let them use mine. It would be nice to help someone save hopefully heir hair
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Mecool, most Elastogel users follow the Penguin protocol for capping. That is, start capping while you're getting your pre meds. change the first and second caps after twenty minutes each (when you start capping it takes a while for your scalp to get cold, so the caps get warm more quickly than later). Then subsequent caps are changed every 30 minutes. Ten minutes into your third cap (that is, 50 minutes after starting capping), you can start getting your chemo. Keep capping during chemo and for four hours afterwards. I had a medical freezer so did not use dry ice. I think you will need more than 4 caps with dry ice. Changing caps on your own wouldbe difficult.
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mecool
I would for sure order like 8 more caps! You have to use them an hour before and 4 hours afterwards. Trying to rechill 4 might not work too well. Also especially if are doing this by yourself. You know you could hire a helper! But either way you should be able to sell them after on eBay easily. Or maybe even buy some extra ones now:) Good luck! Also you need a infrared thermometer. Order on amazon , most ship next day for free. I wish I knew someone who was on my chemo schedule because I would loan them my caps. It would be nice to try and help someone save their hair too😊
Ps. Anyone know where to buy some cold cap do rags? All my long hair is getting tangled in Velcro when taking on and off
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4 hours afterward???? I read 30 minutes. 30 before and 30 after....oh my. That is a good idea though, to "share" with someone. Unfortunately, I don't know anyone else going through TX right now, except my neighbor who is a male and already bald. I do fully intend to sell at a discount or donate these after I'm done with them.
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Phaila- my hair getting tangled too, but I don't think we can put a do rag on while capping, for fear our scalp won't freeze. Any veterans out there with a suggestion?
Mecool- I only leave caps on for 3 hours after b/c I have thin hair (instructions from Penguin) but I would not recommend doing without 8 caps and two ice chests at a minimum.
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Mecool - Yes, you definitely need more than 4 caps. It is very difficult to get them back to the right temperature quickly after use - although the dry ice method does work faster than the freezer. I had access to a freezer but used a total of 12-14 caps for each of my infusions. I wore 2 caps prior to the infusion & then they were continuously changed during my infusion to 4 hours afterwards. You need an infared thermometer to verify the correct temperature - mine were usually -32 degrees. I think it would be extremely difficult to cap yourself. It is super cold & you will want to be wrapped in an electric blanket not messing with the caps. You really need another person to make sure the cap is in contact with your entire head & that there are no gaps.
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