Cold Caps Users Past and Present, to Save Hair
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oh there you are, Phaila! Yay to be finished, right? I just scheduled my first haircut in 4 months. It's time to do something about this troll hair. I can't wait! My hairdresser is probably going to beappalled when she sees my crazy hair. But the last time I saw her we were expecting me to go bald so I'll surprise her with lots of hair instead.
As for the crying? Oh yeah. Everyday. Several times a day. I thought I was the only one.
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I will be starting chemo soon for a recurrence in my lymph nodes despite a negative SNB 17 months ago.
Can someone give me a synopsis? It pains me scrolling thru the thread picking out bits of info..
What are the names of the cold cap companies? Recommendations?
Help greatly appreciated!
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farmerjo please check out these two threads for newbies, but post any questions here (these threads are for reference only, most posters are here).
Cold Caps FAQ: https://community.breastcancer.org/forum/6/topics/...
Cold Caps Success Stories: https://community.breastcancer.org/forum/6/topics/...
Very sorry to hear you had a recurrence, really sucks.
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Thank you!!!!!!!!!!!!!
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hi all! Somehow I got knocked off the thread:( I had thought no one was posting! I had thought I had been blocked or something
Cody- My last chemo was not too bad. I didn't have any se except back pain and EXTREME feet and ankle swelling. It's like so annoying! My ankles look, and feel, like cinder blocks! I hope this doesn't last too long, it's kind of painful too.
My shedding was kind of bad and still losing hairs everyday. But figure we lose 100 hairs a day without chemo it's just that now there aren't replacements so it's more normal ya know. I'm about to get into the shower so let's hope I didn't jinx myself! I just realized that my bad shedding today is on my day 14 after last chemo. I kind of forgot about that time period after chemo since it was my Last one. I combed out a large handful of hair and kind of freaked out. I still know I won't lose all my hair but every single extra hair that falls out is like a death to me. I just want to be "normal" again ya know.
Runner- How great about your haircut. But your hair looks pretty great in your pics so it should look fabulous with a little haircut. It will feel so healthy
Off to sons bridging ceremony from bears to webelo:))))
Enjoy the weekend👍❤️😊
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hi farmerjo, I'm so sorry about your reoccurance:( How the heck did they find a positive node so long after your original cancer? That stinks!🙁🙁🙁
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Hi Y'all -
Not wanting to make anyone afraid- but holy post op shed shit show! Hair bits everywhere! Between that and not washing it for a week, and post op bed head, I am a fright! Thankfully not expecting to visit with anyone but close family an a couple of friends for the next 2 weeks!
Has anyone else looked at their fallen hairs? At the follicle end, mine look a bit like a racoon tail with light/depigmented patches with dark between. My hair did keep growing a bit though treatment, and I am guessing that is chemo effect, but there are only two bands - maybe it gave up after that?
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Hi Cold Cappers!
Hoping to have time this weekend to catch up on this thread but I'm 10 days post Round 3 of TC+H. I stopped shedding, just a few hairs now and then and about 10 - 20 on hair wash days. No fall out from Round 3, so I'm feeling very positive that the cold capping has yes indeed worked. Like I shared at Round 2, I have a top bald spot but I just cover that up with Toppix and I'm good to go. I'm happy that it hasn't grown with Round 3. My Round 3 turned the corner around day 8 and I'm feeling my usual self, so grateful. Fatigue and low mood lingered with Round 2 and I didn't feel ready for another round. But now, hopefully, I'll have two good weeks prior to round 4. This weekend, I'm taking a trip across the state for my daughters MS Biology graduation. Very grateful to get to do all these family events. Each round, each regime is so different but for most of us, some hard days, some getting better days, some good days and some great days. Its not like that fear that you are on your death bed through all of chemo and not able to live!
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Hi All~
I am curious if anyone has worn a topper, it's not a full wig, just some extra hair that clips onto your existing hair. I am wondering specifically if they caused more hair loss or bald spots. I have lost a significant amount of hair and am very thin. My hair loss has been pretty even with the exception of in front of and behind ears(I have no side burns anymore and have to keep the longer hair in front of my ears to cover) so no bald spots up top or widening part yet. I am 25 days post last treatment, if that helps, and still shedding pretty good.
Please let me know if you have tried a topper and what your experience was, I would be so appreciative!!
sending gratitude!!!
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phalia - thanks for sharing that very precious moment with your son with us -
It still astounds me that cold capping is this 'surprise' to doctors and nurses...if the medical world put some effort into this tech, it would be everywhere and easy for us. I'm really glad that I'm doing this. I have 8 weeks left of chemo and look pretty normal - thank you Toppix!
The classic archetype of the bald woman going through chemo has got to change...
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sarahrae I have a topper, I use it only on special occasions and its wonderful, like a wig I just put it on and all the hair issues are resolved, it does not weigh, and it does not make my head hot. I don't use it every day because I am afraid that the clips may be too much stress on the hair, and I prefer to play it safe. But it has been very helpful for social events and I know i will wear it more once chemo is over and while my hair regrows.
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Hi All - Sorry to report, 4 months out of chemo and cold caps and still shedding,, not what anyone wants to hear. Maybe will have better news next month.
But think I solved the waking up with a rats nest of shedded hair each morning. Saw a you tube video which suggested using a satin sleep cap. I pin my longish hair up, put on the cap, and so far no rats nest, nor is the cap filled with shedded hair in the morning.
Hi "I can do all things"., Make sure the caps are between 15-40 degrees F. when you put each one on. My cold cap helper ( from the penguin company) often had to put a cap back in the freezer because it was not cold enough. She would run her digital thermometer up and down the cap checking the temp. before putting it on me.
About toppers. Very glad to hear chemo damaged hair can support the clips of a topper, with pulling the hair out. I was considering a topper for just in case, but didn't get one fearing it might stress those poor little follicles.
Phalia, I know exactly how you feel about loosing each strand of hair. I used to take my nice reasonably thick hair for granted, and never bothered about how much I lost taking washing hair in shower. Now each loss feels like I am losing some part of me that is not replaceable. And for me it is true, as i have reached the age when hair does not grow back. They call it age related Alopecia.
Do you all use a very wide tooth comb, like a pik to comb your hair?0 -
OK, the eyebrow thing…thought I had left on brow pencil because my eyebrows looked grey…looked closer, and I have what looks like 5 o'clock shadow on my brows, all these little hairs coming in. So funny!
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Well I will jump right in here..
My original diagnose was in 2008 I was 44 years old. My Best Friend was diagnosed right before me and had a lumpectomy and radiation. My mammogram showed a suspect spot. I had ultra sound and biopsy. Ended up having a cancerous tumor in my left breast and calcification in the entire breast. Because of the calcification, I chose to remove the entire left breast. During surgery the nodes were negative, but after a full path report they found a 1 mm spot of cancer. The calcification was all cancerous so the removal of the breast was a good decision. I did Taxotere and cytoxan for 6 rounds then 7 years of tamoxifen because my cancer was hormonal receptive. Started fulling the toilet with hair after the 2nd chemo and shaved my head. I visited the Oncologist every 6 months to get my blood analysed and a check up. One PET/CT scan during that 8 year span. Oncologist did not recommend a breast MRI on the left breast and said the scans were unnecessary radiation and less than 2% reoccurance.
This year (2016) I found a lump on the mastectomy side. Went thru the same routine of ultra sound and biopsy. 3 CANCEROUS tumors this time. It was a reoccurance of a similar tumor, but because it had been over 5 years, it was considered a new tumor. I had surgery to remove the tumors and 7 nodes ended up being tested negative for cancer. I then opted to remove my ovaries as the right ovary illuminated during the PET/CT scan. I am now going thru 4 rounds of AC chemo Adriamycin and cyclophosphamide. I skipped the "T" chemo in the ACT because I already had Taxotere the first time. That cut my chemo from 7 months to 2. I will follow that up with 29 days Monday thru Friday of radiation and anti hormonal meds. I thought I wasn't going to have to do chemo the 2nd time, but had the mammoprint and OncoDX testing both were very high for reoccurance. Currently waiting for the BRCA 1/2 tests to come back and make a decision whether my cancer is hereditary and remove my right breast for prevention. My Dad had prostate cancer 3 years ago and is linked to breast cancer. One thing to note is my blood work is still looking clean and Oncologist informed me that it only shows suspect if it has spread into other parts of the body. Let's just say I am no longer with that Oncologist. I recommend even with a mastectomy, you get breast MRI's!!
This time I chose to do the Arctic Ice Caps so I didn't look like a chemo patient. The first time my kids were very young and it took a toll on them seeing me without hair and looking sick. It is hard enough being sick and going thru everything and I didn't want to look sick especially to my Children (now 32, 20, and 18) this time. I live the San Francisco Bay Area and the only hospital that has the ice cap feature is UCSF. I was with Stanford Medical and decided to rent the system from Arctic Cold Caps for my 2 months of treatment. I went with Arctic Caps because the only thing you need is the dry ice. Everything else comes with the rental. You need to have a capping buddy and even two. It is quite a process and the caps needs to be changed every 15-20 minutes 45 minutes before chemo, during and 4 hours after. My 2nd chemo is Friday and I will update my progress. No hair lost so far! I highly recommend doing the ice caps!! BTW the AC chemo is much harder than the T&C. I am getting 4 days straight of anti-nauseous IV's after this next chemo. Bone pain from the shot to boost the white blood count also causes major bone and lower back pain.
Sue
Dx 1/2008, DCIS, left breast, stage II, 1 node positive, ER+/PR+, HER2- Negative (0+)
Dx 3/2016, 3 cancerous tumors left breast, 7 nodes negative, ER+/PR+, HER2- Negative (0+)
Surgery 2008 Left Mastectomy and Reconstruction and 2016 Removal of 3 tumors left breast and ovaries removed
Hormonal Therapy 2008 Tamoxifen 7 years and 2016 Letrozole
Chemotherapy 2008 T&C (6 rounds) and 2016 AC (4 rounds)
Radiation Therapy 2016 Left Breast
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Zinny- yay for eyebrows! I can't wait!
Sue- I'm sorry about your recurrence. 2% chance and it came back. Ugh. The one thing is you know what to expect! Hang in there with the cold caps. I think the success rate with Adriamycin is not as good as taxotere but it's certainly worth a try!
Here is my hair 18 days after my last chemo. I broke the rules and used a hairdryer and brush to blow it dry. I couldn't help it, the urge was too great. I don't think I lost any hair and it's so nice to not have frizzytroll hair! And I think not using anything heated on it for 3 months made it softer. I thought with straight hair it would be obvious I've lost hair but I can't really tell. It also grew about 2 inches during chemo. I already have some new hair coming in and it's bright red like when I was a kid! Ignore my cancer face. I have a lot of swelling still in my face and not having eyebrows doesn't help any! I'm do for my final shed any day now but I'm not worried about it. I think the cold caps were a success!
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YOU LOOK AMAZING @Runner70! I dont know what you looked like before... but I would say you are handling this like a champ. I would NEVER guess you are going through cancer or anything else!
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Ladies, so sorry to hear about cancer coming back:(. It is scares the hell out of me. My MO says it is only 2%... well...
Runner70, Looking good!!! Congratulations on your Cold Caps success!!!!
I can't wait to style my hair. I didn't loose any yet but since I don't use any products they are mess. I have a short cut and my hair a bit wavy.. I know instructions say not to cut. Did anyone cut bangs during cold capping?
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Hi ladies -
A couple more questions for you as I nail down my treatment plan and hospital this week. If I go with the TCHP regimen, I will likely try the cold capping since it's only 6 times, and I don't want to risk permanent hair loss!
- Is it better to have longer hair or shorter hair when starting the cold caps? I have a decent amount of hair but it's quite fine. Wondering if I should get a cut beforehand..
- Is there anything I can/should be doing to prep my hair over the next few weeks before I start? (e.g., biotin, hair treatments,...?)
- How often do you have to change the caps? I've heard anywhere between 15-35 minutes...
- My TCHP infusion will likely be 5-6 hours, and I heard that you have to keep the caps on for 3-4 hours after the infusion. The infusion room would likely close by the time I'm done with it! It's about a 25m drive through the city from the hospital to my house - feasible to try to make it home in a fresh cap and just continue the capping for the next 3-4 hours at home? Or change the caps in the car if we run into traffic??
I know everyone's experience is a bit different, but I appreciate your perspectives!Thanks!0 -
District Girl, if you haven't already done so, I recommend you read this: https://community.breastcancer.org/forum/6/topics/836476?page=1#idx_22. The Penguin cold cap protocol for cap changes is: before chemo starts, put on a cap and change each of the first two caps after 20 minutes. From then on you leave the caps on for 30 minutes. Ten minutes into the third cap, when your scalp is good and cold, you can start chemo. Herceptin counts as part of the post-chemo time because it doesn't cause hair loss (not sure about perjeta), so make sure they run the TC first. Most of us do (did) 4 hours post chemo. Penguin recommends not cutting or coloring hair before starting chemo. They also recommend taking biotin and silica, but my oncologist wouldn't allow it during chemo. If you're not using Penguin caps, the other choice is Elastogel caps, and I believe many ladies using Elastogels change the caps more frequently because they don't hold the cold as well as Penguin caps. I had a medical freezer at my chemo facility, so I stayed there the entire time. I made sure I got an early appointment each time, so I never ran into a problem with the facility closing before I was finished. I know some do cap on the way home and at home to finish up.
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Districgirl, I use Arctic CC. (elastogel). We do change them every 15min even though instruction tells fist 15 then 20. Sometimes I just start feeling it is not so cold anymore and change before time pass. ACC let me color hair with organic color right before chemo and let me cut hair. I always had short hair.
About changing, I don't stay in the hospital till the end. I live in NJ and go to Sloan in NYC, my ride is about 40min home without traffic but there traffic most of the time. My appointments around 2-3Pm, but I am on weekly taxol that admitted for an hour. So after I am done we check google maps for traffic if it is very bad just stay downstairs in the hospital waiting room till traffic is not so bad. Then we drive with 2-3 stops on the way to change caps. I sit in the back seat and my husband stops the car, gets cap from cooler and changes it on back seat. The trick is to know the road and to know stopping points where you can change. I recommend you to figure it out before you drive home. Our trip is on highway through NY but we found alternative road and first part of the trip go local, stop under sign " no stopping" lol and change... Who knows it might be on the news one day " Cold capper arrested for illegal stop". After ,we rush on highway till we cross GW bridge to NJ where we stop on local gas station one or two times on the way home . It all depends on traffic.
The rest we do at home. Last time I was so "out of it" from meds that I even was able to sleep in bed with caps on and my husband woke me up every 15 min to change.
Don't worry it is doable! You can do it!
best,
Vk
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Hi ladies/asskickers --
More on updates later, but wanted to throw this out here: have any of you experimented with false eyelashes?
For makeup I'd normally only wear mascara & a little eyeliner, but I don't want to torture my lashes, which seem to be hanging in there for now. I have no experience with false lashes. Any advice/recommendations? Does taking them off traumatize your natural lashes?
Thanks in advance for any good thoughts!
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HI,
i'm new to posting but have been reading the thread for a little while. I have a question about a flaky scalp, i started chemo (TC) on May 25th and only have been washing my hair every 3-4 days, yesterday I noticed the back of my head toward the top was dry and flaky. this was also the spot that hurt for a couple of day after wearing the penguin cold caps for my fist treatment. is this normal? is there something I can do to get rid of it without damaging my hair follicles? My husband is afraid to pick or comb them out because he doesn't want my hair to fall out there.
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Hi jstan81963,
Welcome to our band of crazy cappers! Hope everything is going well with you as far as tolerating the chemo.
There's been a good bit of discussion in earlier pages about this problem, which you can probably find by searching the words "cradle cap" or "flaky scalp". I had the same problem when I cold capped and yes, it was the same places that got a little frostbitten and hurt after each capping session. Mine was actually toward the front of my scalp.
The official rule seems to be to leave it alone, and not to pick or pull at it and let it fall away naturally. Some people have tried applying apple cider vinegar to the flaky patches to soften them up and then try to remove gently. I didn't try this method, so I can't vouch for its effectiveness. As for me, I just couldn't stand it, it was too gross! When it showed up a few days after each session, I just went in there and pulled it off - as carefully as I could. This is not what they recommend, but I didn't want to walk around with a funky scalp for 2 weeks. I did wait till it seemed pretty dry and ready to come loose, and did not force the peeling. I could not see that I pulled out more than 3 or 4 hairs at any time. And whatever hair I lost around the frostbitten/sore places, grew completely back after chemo.
Good luck with your capping and chemo!
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Still having great success with the penguin caps. We use the freezer at the hospital and I am pretty militant about following directions. I still exercise (hard) over 7 hours a week but have modified so I don't get my head too hot - like hiking with an umbrella which looks really cool...lol.)
This is my hair 6 treatments in. I have started a very light shed but probably only about 20 hairs a day. Nothing I probably wouldn't have lost.
I still have 10 treatments left including my A/C at the end. I understand that will be harder. But having these 3 months with my taxol/herceptin/perjeta routine and still having my hair has been worth all the hassle.
I comb once a day with a very large tooth comb, wash once a week with extremely gentle water and cool temps, massage the shampoo a tiny bit. I LOVE Saturdays because it is hair washing day!
In the other hand, I try not to stress. I most likely will lose more. If I have to, I will order topix. But I have to say, I lost a ton more hair from stress when we were doing a whole house remodel and planning a wedding at the same time. Just living in the remodel for months really took a toll!
Here's after #6 I will say the grey roots are super pretty (not) but it is what it is.
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SusanBP - looking good! Asking on behalf of District Girl (and myself out of curiosity) - do you count your Perjeta time as part of your post-capping time? Or does Perjeta cause hair loss so you treat it as part of your chemo time?
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PatinMN - Well...you just opened my eyes! I didn't realize that perjeta caused hair loss. We were counting it as post chemo capping. I guess tomorrow, I will ask for it at the end of the taxol and count it as chemo time. We count herceptin time as post time.
I will consult my capping advisor.
Thank you!!!!!
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SusanBP - I don't know if Perjeta causes hair loss or not; and maybe nobody really knows, since it isn't given alone (as far as I know). You may be perfectly safe treating it as post-chemo capping time! Let us know what your capping advisor says.
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Just finished # 6 Taxol. My half way milestone. 3 more hrs of col capping. I heared real sheds start after #6. Will see if caps working. Worried..
And here my weekly Snapchat photo😉
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Hello all -
it's day 18 post first TC. Used cold caps (PCC) for my first treatment (with a hired penguin helper as well as my parents). They were cold and tight, and I am following protocol in terms of everything - timing, hair care, etc.
But I am worried I it's not working, as yesterday and today I have already shed TWO substantial handfuls of hair (stands from all over my head when I combed). Is this a failure? Will it stop? I could build a small bird's nest out of what I lost. Probably 10-15 percent of hair is already gone, but it seems to early for that?
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Viktoryak: I am on 7 tomorrow. This week I had a mini-shed start. I hate to even call it a shed. Maybe 10-20 hairs a day. Hang in there!
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