Cold Caps Users Past and Present, to Save Hair
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Hi all, I go for TC #2 tomorrow and cold capping. My hair really started shedding a lot starting on Saturday (day 16). Even more yesterday and this morning. Cold cap coordinator at my hospital said 12% shedding by cap 2 on TC. Not sure how to measure it, but over 200 strands a day easily, probably more. Does this slow between treatments or just get heavier? My hair is so thin I'm not sure I can spare all that much. Also, 1 inch+ gray growth. Has anyone worn hats or scarfs when they go out? I think PCC said not to, but I'm wondering if it's ok to do for a few hours here and there.
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This is me now ... Lol i wish all you ladies capping best of luck.... Believe it or not im ok with where i am, 22 more days until my last chemo, and i will admit is is nice not to stress over my hair anymore... 0 -
Good luck tomorrow Scarlett! I head out for AC #2 tomorrow too, just got the dry ice and just need to put together the usual odds and ends before the fun tomorrow. I haven't started shedding much yet but I know it's coming in the next few days.
Definitely dreading it and worried. As for greys I've been using Color Wow. I washed my hair yesterday and didn't reapply today, which made it look like crap all day at work today. But, all good. I'll apply it again on Monday morning
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i have had only 1 chemo and will do it weekly, but scared to wash my hair..but will brave the shower soon, fingers crossed to hang on to my hair, i'm on weekly abraxane, thank you to everyone who helped so much and we survived our first cold capping, i guess that makes us experts now, hoping chemo works and hoping cold capping will too.
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Scarlett--Don't freak yet! What you're dealing with is pretty normal with TC. I had a huge shed between days 18 and 25. It came out by the fistful...I swear I lost close to a thousand hairs a day during that period! And like you, I have thin, straight hair and was sure it would be all gone before my second treatment. But it did finaly slow down after about a week and went back to a more manageable 50 or so hairs lost per day. I'm now 7 weeks PFC and am still shedding, but I have a full head of hair...thinner hair, grayer hair but still lots of hair. I'm guessing I've lost about 30% of my hair so far and I do have a few thin spots (and I did have to change my part and where headbands to help cover them up) but they are already growing back in. One on the crown must have been breakage from freezing because it started growing back in even before I finished chemo and is already a good two inches long. So hang in there...I know it is frustrating and scary and all you want to do is just cry every time you see more hair fall out but it will slow down. And the gray can be somewhat dealt with. Lots of people here have used various brushed on or sprayed on temporary colorants. So don't lose heart. You'll get through this!
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Birdofparadise, we all understand the fear of washing your hair, but it's necessary to keep icky dirt and dead skin from building up on your scalp. I washed twice a week on weekly chemo, and sometimes rinsed my hair in between. You're on a regimen that should work very well with the caps, so don't be afraid!0
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Good Morning Ladies,
I thought I'd update with another picture for those that are newbies. Like my latest post said, I am shedding around 100 hairs a day. Last week it was double that for a few days. Not sure why. I am done with 11 treatments (4 dose dense AC and 7 Taxol). 4 Taxol to go (I skipped one Taxol that's why I'm not doing 12). I will be done 4 weeks from tomorrow & this is where I'm at. I'd say I'm down 25% of my hair. Others can't really tell as it just looks thin and flatter to my head. I'm starting to have thinning on the sides above my ears that show when I pull it back but I don't think you would look twice at it yet. I think I'm faring pretty well at this point but given that I shed so much every day, I'm a bit scared about what the next 4 weeks will bring and then the post shedding... But I hope this helps some of you and gives you hope
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Angie, do you use anything on your eyebrows??? Looking great!!!!!
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Angiel, you look great! Nearing the finish!
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Angiel, looking terrific! Hang in--you're almost done!
Birdofparadise, I agree with PatinMN. If you don't wash your hair the buildup will trap the chemo chemicals in your follicles. Be brave. You'll be fine. The shedding is expected. Washing too little will only make it worse (and the shedding per wash will be more alarming). I washed every other day all through dose dense Taxol (except chemo weeks) and my hair stylist was stunned at how much hair I have when I went for a trim last week.
Scarlett, you have a lot more hair than you think. A few women on here have done the math about how much we can lose for how long, but here are some basic facts. You can lose a lot of hair and still look normal. You'll be fine.
- The average human head (an average scalp measures approximately 120 square inches or 770 cm²) has about 100,000 hair follicles (Gray 2003). Each follicle can grow about 20 individual hairs in a person's lifetime (About 2007). Average hair loss is around 100 strands a day.
Hang in there newbies. As our fearless PCC leader reminds us, stress causes … alopecia. Just know it will happen and look toward the future. I'm six weeks PFC, lost about 30-35%, and nobody would know I just went through chemo if I didn't tell them. You'll be there too.Good luck!pch0 -
Angiel - You are looking great. How exciting to have only 4 more to go! Why did you have to miss one Taxol?
I had my AC #3 yesterday and sat next to a woman on my exact same schedule (AC#3) and she was completely bald. I have to say it really helped me see the difference. I have basically a full head of hair and people don't know I am a cancer patient unless I tell them.
I keep seeing that some people do dose dense taxol. That would be so much easier than weekly with the capping. I think the main worry though is neuropathy. I don't want to mess with that. I think I am going to ask my oncologust though about the pros and cons.
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Melb - At my oncology center, there is a specific room for cold capping and on the week I missed, there was only 1 open day available for some reason (my normal day somehow was given to another patient). And the only day available was too close to my other infusion, so I got to skip that week. I met with my MO yesterday and he said that he feels 11 Taxols will be fine for me and to not make up the missed one. The nurses said they have several people who end up just doing 10 or 11 due to scheduling issues, poor blood counts or vacations. I should've asked to skip more ;-)
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And Alibeths, I use Latisse on my brows & eyelashes nightly. Then I just pencil in some DiorShow eyebrow pencil to fill in where needed but they've been holding well. Eyelashes not so much....
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hi all, I am checking in. I had weekly taxol # 3 past Tuesday. The shedding has been consistently heavy and I am getting bald spots now.
Toppik is def my good friend for the bald spots. Angiel, you look amazing! I wish I can have half as much hair as you.
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Angiel - Interesting - I read somewhere that if you have 9 taxols it is the same as those who have does dense. I sure would like to do less too.
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angiel you're still looking amazing!
For the ladies on dose dense taxol, how long is the actual infusions? I know it's diff for everyone just trying to get an idea. Right now on AC it takes me about an hour and 15 mins. 15 mins for ADriamyacin and then an hour for cytoxan.
5 more caps to go today on AC #2. I'm just in a funk all day and not a happy camper. In a pretty blah mood but there was a lot of stuff going on at the infusion center that helped. There was a high tea party with fine china and everything that came around to all of the rooms. Cake came around too for one of the nurses bday. And then two women came around giving out items that they knitted for patients such as scarves, necklaces, phone cases, etc.Really cute.
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Hi StefLove,
My dose dense session was three and a half hours long followed by an hour of carbo. So the total time in caps if everything went smoothly was about nine to nine and a half hours. It's a long day, but then you get that three-week break (and pay a lot less for ice than the weekly dose). There are def pros and cons for each. If anything went wrong (like a blown vein or backed-up pharmacy) it could go as long as ten or more hours in caps.
Hang in there!
pch
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well, I am just diagnosed ILDC and saw my first BS in NYC. I have 2 more to see.
She said possibly just lumpetomy. There is a suspicious node....so....
I'm preparing for the worst and that worst for me includes chemo.
I'm wondering if anyone has any experience with centers in NY that encourage cold caps, have freezers, cold caps available, and such?
I can't face loosing my hair, I can't.
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Mira, I know we have New York cap users on this board, but meanwhile go to rapunzelproject.org and you will find a list of hospitals that have freezers. You'll have to click on a couple of tabs. Lots of good information on that website. Rapunzel Project is the charitable organization that donates the freezers to hospitals that will accept them.
We all understand your feelings about losing your hair! I'm sorry you have to go through this, but keeping my hair made it much easier for me to face.
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mire845, I am in NYC and currently doing cold capping. Let me know if you got any question
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pch, wow that's a long day!
By then I'll only have 4 caps left so home stretch. Still not sure if I'll be doing carbo but I think I'm going to ask to. My MO wants to wait on my brca score and she said if all comes negative I might not need to do it. The seconds opinion MO I saw though said that regardless of brca she'd like me to do carbo. 0 -
my saini in nyc had a freezer.
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Angiel,
I've got plenty of hair now that I've done cold capping, but no hair anywhere else and that includes my brows and lashes. I am a redhead with pale pale blonde brows and unless I softly pencil something in, I look like a mime or this...so does Latisse work? Also anyone recommend anything else???
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Good to hear from you Sula! Glad to hear your hair is in full swing but bummed to hear about your lashes and brows. I'm not sure what to think about the Latisse. I definitely have thinning in my brows; however, I've read that they may not entirely fall out until after Taxol. I've also read that others have lost their brows during the weekly Taxol. I just can't say for sure if it's the Lastisse that's keeping the hair or just one of those "everyone's different" things. At my Look Good Feel Better class, another woman said she used Latisse during her entire chemo and never lost lashes or brows but that's just one person. It seems for every one person that it works for, you can find someone who said it did nothing. It is expensive so I'm not sure I would've gone through the trouble of getting a Rx for it if I already didn't have it. I've used it off and on for years and now am just trying to be more consistent with it. Wish I could help you more. Might as well go for it at this point, right?
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Angiel,
Well, they started falling out during Taxol,and now they're gone. Guess I'll give the Latisse a try just wondering if anyone knew of anything els
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Hi Sula! Your doc can prescribe an RX for Lumigan, same active ingredient as Latisse. Neither product makes a claim (nor can they I think) to save lashes or brows during chemo. I used it for the first few rounds of Taxol/Carbo and everything fell out. I'm now using it PFC and my brows and lashes are growing in fairly quickly (though not quickly enough for me!). But I've definitely noticed the process speeding up. They were coming in very light at first and are beginning to darken up to my normal color. I will say that my brows grew in and then fell out again and then I started using the Lumigan on them and now they're coming back fairly fast. I've read elsewhere that this is common and it takes them a while to sync up to their normal growth/shedding pattern after chemo (awesome). Anyway, I think Lumigan works and if my insurance covered it (at $40), then your fabulous insurance probably will too. Good luck!
And everyone else, I went to my final doc appointment (before followup begins in three months) and not only did I have a clean CT scan (yay), but I think I finally also have them convinced to get a freezer from Rapunzel for my chemo clinic. And the receptionist in front, who assumed I hadn't been through chemo yet, her jaw DROPPED when I told her about PCC. She was all, Why aren't we talking about this (to clinic patients)? She was flabbergasted, took the information down, put it in her folder, and said that at the next staff meeting she was going to ask everyone in the room, Why aren't we talking about this? My doc is also having his PA now hound the department head to make informing patients about capping a part of protocol and asked if he could refer patients to me (and if I could help establish a protocol for patients to follow, to which I said yes, but also PCC already does that). I felt so great walking out of that appointment, not least because of all the good this will do for so many women. Think of everyone we're helping by our example. It's a rough ride, but so worth it. Keep up the great work ladies. Forward.
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Last night while watching the NBC Nightly News, they did a story about dignicaps!
http://www.nbcnews.com/nightly-news/scalp-cooling-...
Hopefully that gets the word out some more. There was apparently a cancer conference over the past few days where they spoke about the caps and their success.
So I'm starting to lose hair in other areas other than my head. Cross your fingers ladies that the head hair stays put!!
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Pch - that's great about news about your scan!! And also good news on your clinic being open to getting a freezer! I was amazed at my LGFB class that only one other person had heard of PCC - and the class was held at a clinic that will let you use them. I'm glad you mentioned your brows & lashes - the color....mine seem to be growing in with no pigment. They're not gray but almost like "see-through" in color. Looks pretty weird but at least I can use a brow pencil & powder to give them color. Must be normal, huh? Well at least our new "normal"?
Steflove - hoping your hair is staying on your head
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the oncologist on the NBC piece, Dr. Hope Rugo is my oncologist. Wish I had been in time for the Dignicap trial, but PCC is good too. Hopefully Dignicap approval is around the corner!
First hair wash today after 2nd TC on Thursday. A fair amount of hair loss, but about the same as what I lost last week. Hopefully it will slow. Atleast it is diffuse. No bald patches yet.
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I apologize if this question has been answered or discussed recently . . . but I just got done with my second chemo. I'm currently on AC every three weeks. I did not have any shedding until this past Monday, a few days before my second treatment. I have had quite a bit since then . . . so I'm wondering if others can tell me if this says anything about the cold caps working or not working, and how long I can expect this shedding to go on. In response to awesomemommy, I am renting from Chemo Cold Caps and they have been excellent so far - very detailed with their instructions and they give you everything you need (from training to the thermometer and ear muffs). I'm worried that all my efforts might be for naught! And in response to the two above, I did practice, and I put the caps in the freezer the night before to lessen the amount of dry ice that needs to be purchased (per Chemo Caps' suggestion).
Thanks in advance for any info!
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