Cold Caps Users Past and Present, to Save Hair
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I am beyond exhausted today. Is this typical for day 2 after chemo
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hi...looks like I will just stick with the full time of 4 hours after...for a grand total of 7 hours. Might as well be fully committed!
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I'm doing chemo before surgery. Hopefully the triple negative tumor responds and shrinks a bit so a lumpectomy is doable. Anyone else doing it this way....chemo, surgery, radiation?
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LeesaT, are you also getting that neulasta shot? I was exhausted after chemo, but the day after shot really did my joints in.
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Mikie, I also did AC/Taxol prior to surgery. I did wear the caps for 7 hours for each of my 11 Taxol infusions (I skipped one Taxol). My local Penguin Rep was my capper and she wouldn't let me go less than 4 hours following the infusion. I still ended up with a BMX as my tumor didn't respond enough to make a lumpectomy possible. But being that I am ER+, Her2-, they didn't expect me to have a complete clinical response. The chemo did really help with the cancer in my lymph nodes though. I then did 33 radiation treatments and just finished 3 weeks ago. As far as the headache with the caps....I always took 2 Extra Strength Tylenol before leaving for the infusion center and then either an oral Ativan or had it included in my premed drip. It seemed to help.
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Hello: I wanted to post on this thread and thank everyone for their useful comments regarding cold capping techniques. Personally, I used ELASTO-GEL COLD CAPS WITH another company and have been totally thrilled. I am at day number 18 and it seems to be working-- I still have five taxotere left- but after losing my hair eight years ago- I am so glad that I decided to pursue the cold capping. This gives many women a new hope and sense of empowerment through chemo- which has really helped me. Wishing you all the best.
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I did have the neulasta thing they put on the back of my arm that infused the meds 24 hrs after the chemo. I spent the entire day almost too tired to even keep my eyes open. I tried to eat and drink regularly, but I don't feel I succeeded very well. A bit better today, but am feeling queasy & water has changed taste on me. Gatorade, green tea, & sweet tea too. Fruit juices are about all I'm drinking. Frozen fruit bars have tasted ok too. I'm eating a bit of anything that sounds appetizing
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Leesa, I had neulasta following my ac treatments. It was a shot that you had to go back into the oncology center for each day following the AC infusion. It raises your white blood cell count . Following my AC infusions, I was pretty fatigued but it usually only lasted 24-48 hours. By 72 hours, I was pretty much back to normal. Hope you feel better soon
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Hi everyone. Just an update. I've been cold capping with Artic Cold Caps. I've had 2 Tx's, first on 12/3 second 12/24. So far so good. Had a little shedding here and there but nothing dramatic. I'll post a pic tomorrow.
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I am a big fan on Atavan in the drip too Angiel - I think it's the only way I can get through 12 Taxol. Congratulations on finishing up radiation!!!! Taxol #3 is this week, liver enzymes are way up and I am losing more hair than I did on AC. It's not been the best weekend!!!!
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I just wanted to chime in on the pain issue. I had Percocet left over from my mastectomy so I took one of those, in addition to an Ativan, about 45 minutes before capping. I would then re-medicate every 4 hours or so. My husband is my capper and he is very strict about completing the entire 4 hours post-medication cooling!
For me, the first 5 minutes are excruciating but after that my head gets numb and I get used to it. Each cap gets easier and by the end of the day I am not in much pain, in fact I am rather loopy from the painkiller and Ativan. Not to be a drug pusher, but it has made capping bearable for me.
I have finished 4 of 6 TCHP sessions and I don't think I have lost more than 20% of my hair. No spots, just some receding around my temples which is not noticeable as long as I fluff my hair around my face. The most noticeable thing is my roots - I usually color my hair blond every 6-8 weeks but haven't been able to color since August. I've come to realize that we are our own worst critics on these things, though. I like to say that I don't have great hair right now but I have hair, and that is good enough for me.
I have been thrilled with my PCC experience and would love to see this technology made available to everyone who wants it.
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Congrats, Angie on finishing radiation. I know how I felt....wasn't really sure what to do when everything was done. Its a great feeling to go back to 'normal'.
Leesa, I felt great day after chemo (neulasta day) then the next 3 days completely exhausted. Each day after seemed to get better. Best to just rest if you can. Good luck
Kim
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Is it possible to save eyebrows? Just curious. Thank you!
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MB12, Penguin Cold Caps have cold packs that you can get to go over your eye brows. But to me they seemed hard to use and just too cold. And luckily I didn't lose all my eye brows so I was able to use a pencil and eye shadow to color them in.
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Yeah to me the eyebrow cold just wasn't worth it, since I was already cold on my head, hands, feet, and mouth. I'm now a month PFC and my eyebrows are being weird- part of them near my nose fell out early on and are growing back. The rest hung on through chemo and are just now falling out! It's weird to say the least! Eyelashes are for the most part still there though!
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So happy for you--and so glad I got to speak with you about the cold caps before I started. It is working great for me also!
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Leslienva and Tshire - Thank you so much for the info!
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Hi there,
Just new to the forum. I just did my first chemo (TC) on 12/23/15... Is it too late to do cold caps for the rest of my treatments, I have 3 more to go? It's day 14 today, I still don't see a noticeable shedding. I really wished I looked into the cold caps earlier before I started treatment. Just wondering if it's worth pursuing for me not doing it on the first round....
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JBerk, I'm really sorry to say that it's too late to try and save your hair. It's possible that using cold caps now will help you hair grow back faster, but it's a lot of time and expense and not worth the effort, in my opinion, for any potential benefit at this point. We're working hard to spread the word about cold caps, yet there are still too many women who aren't aware of them, or find out too late- it's frustrating.
Best of luck with your remaining treatments.
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JBerk -- just wanted to say welcome to Breastcancer.org!
To talk with others also going through chemo right now, you may want to join the January 2016 Chemo thread for some advice and support while you navigate chemo together.
We hope this helps and we look forward to hearing more from you!
--The Mods
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JBerk,
I'm not totally sure where I saw this, but I seem to remember a testimony somewhere where Frank Fronda, the founder of Penguin Cold Caps, said that it was still worth it to try cold capping even if you didn't cap on your very first infusion. I think it was a YouTube video with a lady who started capping after her first chemo, and said she still kept enough hair that she thought it was worth the effort. Try googling Penguin Cold Caps testimonials. You could also contact Penguin Cold Caps directly and ask their opinion. They have a US rep in Michigan named Geralynn who was very helpful when I cold capped.
Good luck!
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MB12- I use Latisse on my eyebrows and eyelashes. My reconstructive surgeon gave me the prescription before I started chemo. I have finished 4 AC and 2 Taxol so far with no loss
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Hey LRFTexan,
Did your frostbite problem get better?
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Wildflower2015: well, we only had swelling on the first Taxol so that was positive but I did get frostbite again on the second. I've been using aquafore on it and it's healed pretty good but I've lost a little hair in that spot. I don't know how my scalp can handle frost burn in the same spot 9 more times! My hair is just so baby fine that I think it's going to happen. We are going to try one more thing this week using some gauze. Thank you for checking! I need some prayers for my liver enzymes to come down, Taxol has not been my friend.
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LRFTexan,
You got 'em!
Regarding the frost burn issue - if the folded gauze padding proves to be insufficient in preventing frost burn, you may want to try using a super thin panty liner on the affected spot instead (I'm talking about the barely there, paper-thin "everyday" type of liner). My hair is also baby fine and I got frost burn on both my 3rd and 4th (and thankfully,final) chemo. I did lose some hair in that area, either from the frost burn itself, or maybe because I wouldn't leave it alone and pulled off the dead skin? who knows. Most importantly, the hair did grow back :-) What I'm saying is, if you want to continue capping, and you can't resolve the frost burn issue, you may have to decide to just sacrifice some of the hair in that area by padding it well enough to keep the frostbite away. I have no idea if the folded gauze or the pantyliner will allow enough cold to reach the follicles, but dang! you have to have some relief if you're going at it 9 more times! You will at least salvage the great work you've done so far on the rest of your hair. I guess there are no guarantees, but my frost bite area did grow back, as I said. Good luck!
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LRFTexan - prayers for the liver enzyme issue!
Good advice from Wildflower.
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Hi Rangoon8... i finished 4 rounds of TC in March and used the cold caps. i did have some hair loss around my hairline but it has since filled in to the point no one can tell.Good luck and feel free to DM me.
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Did anyone buy Elastogel cold caps that they are done with? I need a couple caps for 5 weeks starting on Monday. I'm using them with radiation therapy to help chill and protect (hopefully) my hair follicles. Elastogel caps are all on backorder and the manufacturer won't get them in until 10 days from now and then send them out. I just thought I would ask here first. I'm in Seattle if that helps at all. I am just going to chill them in the freezer and I will be happy to return them when I am done.
Anyone?
Ann
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Cold Cap users - I could use your advice. I will find out today my possible course of action for chemo & it sounds like there is a lot to consider in the quest to keep my hair. I have very thick naturally curly hair. I saw on the Penguin Cap site that I should stop aluminum-based deodorants and to not color hair until 6 months after. I have a hair appt in a week and will likely have not started chemo by then. Should I get it colored one last time? and what about the deodorant... did you find that using a non-aluminum deod an important step? Thanks, in advance, for your input - I am sure I will be back with more questions soon.
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plan B - is anyone in Seattle done with their cold caps this week? I could take over a rental with Penguin.
An
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