Cold Caps Users Past and Present, to Save Hair
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I was also postmenopausal when I used cold caps and they worked great through 4 rounds of TC. I lost about 30% of my hair (my hairdresser's estimate), most of it from shedding PFC.
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Hi PatinMN, Thank you so much for your response. Yes! I am at Abbott. Had my first round of TC on March 6th and am due for my next one on the 25th. I am using Susan and my first session was a trip! My onocologist and her nurse were supportive of the capping, but definitely warned me that most of their clients only ended up with about 50% of their hair. Susan disagreed with this...so I am giving cold capping a whirl. I am trying not to stress about whether it works or not for me. Unlike so many of the women on this forum, I don't have long beautiful hair. I have never worn my fine hair unclipped or unstyled for so long!! And dirty! Ugh. Lost a bit more than usual yesterday, we will have to see how today goes.
Suladag Your have beautiful hair!
Cindy Thank you for the warm welcome and encouragement
Leslienva Thank you for the reassurance
JC254 Thanks for sharing how it worked for you!!
I will just keep hoping that it works for me too!
Have a wonderful day everyone!
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Welcome Kathincolor! Did I meet you briefly at MN Oncology in Minneapolis? I'm thinking you visited the cold cap room during one of my infusions? I also have been using Susan. And the nurses at MN Oncology are so nice. Sure makes for a better experience for an otherwise very unpleasant day. I see you go in again on the 25th. I'm there on Monday for my 4th AC treatment. Up until a few days ago, my hair shedding had been minimal but it has totally picked up in the last couple of days. I'm probably losing between 100 and 200 hairs a day. I'm finding them everywhere....ugh. Hopefully, it's just cyclical and will subside.
U4... I think you look great - and you are almost done!!!
Suladog....Love the curls!! I hope when I hit the Taxol portion of my treatment, I still have full hair left like you! Not looking forward to weekly capping sessions though. Hopefully, the months go fast.
Enjoy the weekend ladies!
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suladog! You look fantastic, and are almost done? Congrats to you! Great job
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I'm starting to shed a little. It is not much now; still, it looks unnerving. I hope I get used to it quickly and won't obsess.
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Can someone walk me through a day w cold caps? I'm newly diagnosed w a local recurrence and cannot lose my hair again. Do you change them every hour? How does it work? Sorry about caps!!!
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Hi Alibeths, I use Penguin Cold Caps. I have to put the first one 50 minutes before chemo and change it to the next one after 20 minutes. The second one stays on for 20 minutes also. All the next ones are changed every 30 minutes. They are on my head throughout the infusion and then for 3.5 hours after the infusion. It makes for a long day and a lot of work.
Also, my chemo center does not have the medical freezers so I have to buy dry ice before every treatment and we go to chemo center with two coolers packed with dry ice and the cold caps. It gets expensive, especially since I have 12 weekly infusions. In between the treatments, the caps are stored in my home freezer.
I started my chemo less than 3 weeks ago, so I cannot say yet if mine will be a success story, but if I do get to keep my hair, all the effort and money put into it will be worth it for me.
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Thanks, and yes they do go fast. I have 4 more treatments and will be so happy when I can finally color my hair again without the help of a magic marker. I really want to know for those of us doing Taxol and herceptin only, when we can go back to regular hair routines. I have been washing my hair in cold water, arrrgh all through the winter and I am also more than ready to take care of my grey roots and use a few more of the products I'm scared to use right now. I have to admit that I haven't lost hair really at all because of the taxol and caps, though my MO and the nurses all assure me that I'd be hairless right now without them. I started measuring all hair lost after washing for a omnth before I started anything and it's just normal, and has continued so, (fingers crossed) I have no hair anywhere else on my body, that's for sure! My eyebrows are very pale blond and naturally invisible unless I darken them, so far they've hung in there. I stopped using mascara on my stubby albino bunny rabbit lashes a month before I started chemo just to get used to the look. I want my mascara back, but I was afraid to do anything to bother my lashes during this sensitive time.I don't know if they're going to fall out when this is all over or what..... I just want to go get my hair colored properly and cannot go another 3 months without some sort of professional care. Anyone out there doing just taxol and herceptin know anything about that???? I know the PCC guys say, nothing for like 4 months or something but I'm going to look like a wreck by then since I was due for a coloring before this all started and I haven't had any hair care since November!
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Suladog, I colored about 7 weeks PFC. I used Clairol Beautiful Collection (no peroxide, no ammonia) and had my regular salon person apply it. I did not sit under the dryer that time and It didn't cover very well. But at least I didn't have to continue using the magic marker! Did same thing again 4 weeks later but sat under the dryer, and it "took" much better. However, it eventually turned greenish, and when I sweat I dripped color. I think there are better products out there with no peroxide or ammonia. (Daniella are you out there?). I can't remember exactly when I started using warmer water and scrubbing my scalp, but it was about the time I started coloring. About 4 weeks after the second Clairol color I went back to the regular salon color. No I'll effects. We weekly taxol/herceptin ladies are truly lucky!
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Best shampoo to use during the months I am undergoing chemo???
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I liked Organix and Burts Bees. I also used some conditioner on the length of my hair and avoided roots.
A day with caps...I won't lie, it is a long day, but well worth it to me. I had a freezer at my MO office so I didn't have to deal with coolers and dry ice...I know I am very lucky! They always scheduled me for the 1st appointment of the morning since I would have to stay there all day to cap. I would take an Ativan before I left the house and then see my MO when I got there. Then I would start chemo around 9am. Once you are done with the first cap, you change them every 30 minutes. I would be there until about 5pm. I would pack food, snacks, drinks and such because there was really no time to leave to get anything. I had my husband and a friend there to help each time.
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thank you mdg
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pat,
My stylist specializes in using no peroxide, no ammonia etc natural coloring so I'm not worried about that I'm just wondering when I can go back to using it again . I'm so looking forward to washing my hair in warm water again
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Alibeths,
Same here as everyone else. My MO keeps mine in a medical freezer so Imdon't have the dry ice issue , the Raunzel Project will donate medical freezers to drs offices for cold caps. My chemo day starts at about 9 am, get 50 minutes of cold capping before the taxol starts. During the hour of taxol the caps are changed every 1/2 hr, then comes herceptin which I do as a 90 minute drip since I have to keep wearing the caps. I'm done around 3 pm the capping lasts about 5 1/2 hours we use about 12 caps during this time. I'll agree with everyone else that it's so worth it as it's allowed me the privacy of being able to keep my hair
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I told my MO about the medical freezers donations by the Rapunzel Project. I think they will need to be made believers first by seeing at least a few success stories at their facilities.
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Hi Ladies,
I am about to have my 4th taxol treatment tomorrow. I've been icing my hand and feet to preserve nails and hopefully stave off some neuropathy. My hair is shedding like crazy and know it's only a matter of time before I have patches. I was not concerned about losing my hair in the beginning, but now I am regretting not cold capping. Is it too late to begin now?
Thanks!
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I switched to CTCA 2 weeks ago for my treatments. A nurse comes in the room ( older nurse in 60's Id guess) and blurts out " so how is the growing back of your hair coming? ". ( very rude like - def not nice). Well I wear a nice cap most of the time and have long hair that hangs out from the bottom of cap She must have thought I was wearing a wig!! I took off my hat and said this is my real hair - i used cold caps to save my hair- she snips back well youre the first person ive heard of that did. So rude and insensitive imagine how i would have felt I if it it was a wig!! Still mad at being treated so
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myrgolds - I'd file a complaint. I'm sure CTCA would hate to see a patient writing this kind of thing about them...let them know you are active on a forum. They need to take action to correct that kind of behavior in an employee. Completely inappropriate.
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I believe there are a lot of cold cap doubters out there. I'm 4 days since my 2nd TC treatment (25 days today since my first treatment). Today was my first time washing my hair with considerable shedding. I have been shedding small bits at a time for the last week. I still have loads of hair so I'm now worried, because all my cohorts, in cold capping, keep me positive and reassured. The texture is really dry but you know what....... I still have my hair!
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narsf, you must be doing weekly taxol first, to be followed by AC - is that right? I've never heard of anyone starting cold capping after starting chemo. I gather that usually women don't lose all their hair on weekly taxol until 7 or 8 weeks into the process. However, I don't know if you're too far into it to save any hair or not. Usually it's the AC part of that regimen that causes the most hair loss. So if you've already started to lose some on taxol, your chances of success in the AC treatment are probably not great. I would suggest you try contacting one of the reps at Penguin Cold Caps (www.penguincoldcaps.com) - click on the contact us button and pick one of the reps to call. Good luck!
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Hey Guys! It's been a while! I used cold caps and had my last chemo in August ... Just wanted to chime in for anyone that had questions! I did ACx4 followed by Taxotere & Cytoxan x4 I had great results! If anyone is on the same regimen and has any questions please feel free to message me! : ) Hope all is well with everyone!
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I just had my 2nd TCHP infusion yesterday, noticed a little more shedding than usual when I combed my hair yesterday morning and today. Sigh. Hoping it stays attached!
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Looking great, Suladog! I still have have mine, too, fourth taxol/carbo in and two to go. Some thinning of course, but hanging in pretty well. And for the first time one of the oncologists on rotation at the chemo clinic said I was the only person she's ever seen make it this far with hair---and maybe they should suggest it to patients. I've been advocating for capping and a freezer for patients for months. Pretty big deal. The proof is in the hair.
Also: a tip for anyone who's losing lashes and brows! Perhaps everyone already knew this. But after much trial and error, I found that lining my inner upper lids with black pencil then adding a very slender line of charcoal where you usually would creates a pretty normal-looking illusion of a lash line. I don't generally line my inner lids, but in this case anything that works. I also sort of lightly stipple the lower lash line for (once again) the illusion of lashes. (I don't line the inner lower. It makes me look a thousand years old.) Works pretty well. For brows (thanks GoldenPawsKim!), I found that Cameo Perfect Brow (I use Dark with brown eyes) has the most natural look and longest staying power. I don't walk around fearing I rubbed half my eyebrow off all the time now. People still claim they can't tell I'm in treatment. So … here's to illusion and keeping (most of) your hair. Good luck ladies!
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pch, thank you for the tips. I went to LGFB yesterday, but still am not sure what to do once lashes and brows are gone.
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Lashes and brows were more of a bummer than I thought they'd be. I pretty much have to draw my face on every day. And I'm of the big brown eyes, so it looks really weird without them. Good thing I can draw.
kachincolor I am postmenopausal and I have hair. I started the chemo with zero estrogen replacement and then went back to my very low dose (ok'd by onc) to keep the hot flashes/craziness at bay. (And because my skin started to look like rags.) At any rate, I have stopped trying to guestimate how much hair I have. But it's a good amount. Thinner in spots but good.
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Thank you pch for the brow tips. I've never heard of Cameo Perfect Brow but will look for it. My hair looks fine but my brows are definitely thinning and have some bare spots. I've started using Latisse on them but haven't noticed any improvement.
On another note, I start the weekly Taxol infusions in 2 weeks. The oncology nurse told me that my fingernails may turn brown or black and come off. Has this happened to anyone? I'm kinda freaked out by this. I know people have iced their fingers & toes during Taxol but I thought that was more for the neuropathy risk.
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Glasses help quite a bit when the brows disappear!
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or if your eyebrows are as pale as mine, no one can tell if they're there or not. When I looked before I drew mine on this morning ( as I've done my whole life) I couldn't tell whether I had any eye brows or not any more
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Actually, the icing is to prevent nail issues, not neuropathy. Many people think it is for neuropathy, but to my knowledge studies have not shown icing to be effective for that purpose.
I iced on Taxotere and did not have nail issues...although they did get sore...I was scared enough by it to deal with the ice. Icing nails was not pleasant for me!
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Angiel ... for the nails, keep them covered with dark nail polish at all times (doesn't have to be black, I never used black, just darker color) - light causes problems with them - got through 11 months of taxol with all nails intact. I also iced, hands/feet/mouth (help prevent mouth sores).
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