Cold Caps Users Past and Present, to Save Hair
Comments
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I just got really brave and colored. I am 7 weeks PFC and shedding had slowed to hardly anything. It is darker than I wanted. Hard to match old color. But I feel SO much better.
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4sew, glad it worked out.
I just got brave too and had my mother cut my hair. It was short before chemo and what I kept was about 6 inches long and looked straggly. So she trimmed it back to just a little longer than the regrowth, which is nearly 2 inches. It is very short but at least it now looks planned and styled instead of a nest.
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I'm am 54 days past my last A/C treatment (4 Taxotere treatments prior to A/C) 8 total chemo treatments and I still have full coverage, albeit THIN but I still have hair.
I would love to hear IF it is all going to shed out or does the shedding stop??? IF so when does it stop???
My sister (an angel) did a perfect job of administering the caps, we started one and a half hours sooner and stopped one hour after the prescribed cold cap regimen for all of the A/C treatments. I didn't start shedding until the 3rd A/C and I have not stopped shedding yet. I've lost more than half of my hair but IF you'd never met me you'd think I have a cute haircut that is just thin hair.
Thanks for information...
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lkmelby--That is awesome news!! I am 7 weeks PFC and pretty much done shedding. It comes and goes some though so I don't think it is done, but I have also had little hairs sprouting up everywhere. I like to think of the shedding and new hairs like baby teeth falling out and the perm ones coming in lol!!
I did TC so I can't help much about the AC. I have read where some people are still shedding 4-6 months out on all the diff regimens. Your hair sounds like it is hanging on tight and even though it continues to shed, it either is growing or will be soon.
Good Luck and keep us posted.
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Well I did it. Cut my hair. The straggly bits just weren't working for me anymore. Now my hair is very short all over but with it longer at the top front. It looks thick and pretty good. We left the "old" hair a little longer than the new growth, but I hope to even it all out soon. Luckily my hair grows very quickly.
My psoriasis is back with a vengeance on my scalp but I stopped shedding so long ago that I'm not worried about shampoos or even "scrubbing" anymore. I'm 9 weeks pfc
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Thats' Awesome Shipsgirl!!! I was thinking about getting an official haircut soon myself instead of the at home hacking I already did on my bangs! And if what is growing south of the beltway is any indication of how fast things are growing north of the shoulders, I am in good shape! Overnight 1/4-1/2 inch long with that hair. What's up with that LOL!!
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lol Sewwhat. Mine's the opposite. Head hair growing like crazy, leg, underarm and "other" almost non-existent. I don't have a problem with that. lol
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That would be nice!! Have to heat up the wax this weekend. So not fair!
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Hello! I'm using the Dignicap and I had my first round of taxotere/cytoxan on Sept. 17th. After washing my hair tonight (I bought the sulfate free shampoo) my scalp feels a tad itchy in the back. Is that normal?
Thanks,
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Hi Mc!
How often are you washing? It is not unusual for some itching or some oily build up on the scalp. I washed every 4 days or so. I did the same TC as you and started shedding around day 18.
Good luck. Let us know how it is going.0 -
Thanks 4sewwhat! I'm only washing 2xs per week. Will I shed more with each treatment, or does it fizzle out? I am shedding some now, but nothing too bad.
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Mine was worst between days 18-35. Then it dropped off some. I had treatments on Tuesday's and it seemed shedding was worse the sat/sun following. It kept up until just very recently. I am 7 weeks from final treatment and it is hardly shedding at all right now. I colored last night!
I lost a lot above ears and crown. I estimate I lost 30-40% total but unless you knew me really well you wouldnt be able to tell. I had baby hairs growing in at about 3 weeks PFC.
My blog has pics from each treatment day so you can kind of see the change. It grew during chemo so my bangs kept getting longer.
I saw my GYN today. She had not seen me since before chemo and she was shocked and said she couldn't tell I had lost any.
Best of luck!0 -
Mc in nc, I think you are our first Dignicap user on this board! I'd like to hear more about it, such as the protocol on chemo day, the temp of the cap, whatever else you can share. Are you in a trial? I hope it goes well for you.
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PatinMN - I am in the clinical trial that just started at Baptist in Winston-Salem. The cap is placed on 30 minutes before chemo and the slowly get the temp to around 4 degrees Celsius. I did not feel any pressure or get a headache like I had read about, so I hope that's the case next week. I'm hooked up to a cooling machine and a tube is connected to the back/side of the cap. Baptist along with a hospital in CA did a pilot study on 20 women back in 201. THis trial has a combined total of 110 patients from CA, NC, and NY. The trial has been FDA approved and hopefully this will lead to the FDA approving the Dignicap in the US. Praying for positive results!
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oops...forgot to finish. I wear the cap for 90 minutes after chemo as well, then they turn the machine off and start to remove the cap.
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mc - welcome. Nice to have your input here. When I started shedding, I had some itching and strange tingling (like you have had your pony tail too tight). Is that what you're experiencing?
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Hi shipsgirl - Yes...tingly on the back of my head, and some itching on the crown. I'm trying not to ignore it and not mess with my hair.
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Very interesting, mc in nc. Much warmer cap temps and shorter wearing time than the Penguin caps. Are they keeping track of your hair shedding as part of the trial? What instructions do they give you about hair care? Is the trial only for women getting TC? How many machines do they have available?
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mc - most of us had that. It goes with the shedding but don't let it scare you. Like I say, most of us had that.
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ONe MORE TO GO! just had my 3rd Taxol yesterday. Will have my last one on the 18th. I'm still so upset with the Taxol trying to take me down after all my hard work while on AC this summer. I don't have any side effects - but my hair has shed twice as much since being on Taxol. And I had super thick hair. Friends/family continue to say nice things about it - but it's how i feel when i look in the mirror - kinda sad. On that note I bought 3 hats at Athropologie last weekend - cheered me up.
How do I get great to ship the caps back after my last treatment? I want those bad girls outta here ASAP. Do I have to thaw them? Wipe them down? Am I sending them to Gerrilynn from a UPS store? I can't wait to have my freezer back. It's been such a long time.
Have a great Friday ladies.
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Okay. Just had Treatment #2 yesterday. Went much better. This time they gave me extra benadryl and steroids in a drip to stave on the reaction I had last time. Apparently I dozed through most of the day as my sister and husband tried valiantly to change my caps. They are supposed to be at -32 but we can't seem to get them lower than -29. Any suggestions?? I have had a lot of shedding. I hope it slows down. The nurse at the infusion center was surprised to see I had no bald patches or major losses. Apparently I am the first to use these caps at our center. My husband and sister say they can't notice anything. Only my 12 year old daughter honestly remarked - you look tired around the eyes when you dont' wear mascara. The toughest thing right now is trying to meet her new friends' moms without being able to put on my best face or hair! Good luck to the rest of you. I'd love to hear your stories, especially those that are in the middle of this process. Now, time to get stuff done before I peter out for the afternoon. Hang in there girls!!
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annie - yay for you!! I did ACT and the T seemed the hardest on my hair too. I shipped the caps back snail mail Much cheaper. They want you to use disinfectant cloths to wipe them down and don't forget to de-hair the velcro.
mfm - I kept having to be woken for cap changes during the Taxol part of my treatment. We found they caps didn't have enough time to get back down to temperature so we laid them on the dry ice, out of the box. You have to be very careful not to leave them too long - you don't want to rupture them.
I AM DONE! I had my last radiation this morning and I'm done treatment. I keep crying. It's just so hard to believe that it's finished. I realize now that they call us "survivors" because of the treatment, not the cancer!! It's only now that I can look back at it and see what I've really come through. Ladies, you will make it too. Just keep putting one foot in front of the other and suddenly, you'll find yourself at the end.
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Shipsgirl - yay!!!!!!! Soooooo happy for u!!!!! Congrats! Hope u are going out for a nice dinner to celebrate!
Annie - 1 more! You can do this!
MGM - glad it went better this time.
Mc - I had terrible itching, especially at the back of my head. I did lose the most hair there. I would sometimes put an ice pack on it when the itching was really driving me crazy.
I am 12 weeks pfc. Brows and lashes are great now. Having some issues with my nails wanting to fall off or unattach themselves from the nail bed. Top of my head looks thicker....I just have no patience and wonder when the back will fill in. The fake ponytail is doing the trick and apparently people can't tell it's fake...so that's good. Here's the crazy part.....only 12 weeks pfc and the fear with every new pain is brutal! I wasn't prepared for that. I naively thought when I'm done treatment, that will be that. Ugh. Any tips for dealing with the fear? Certainly didn't expect it to set in so quickly. Ugh.
Curly0 -
Thanks for all the support! The best advice and support are from the very people who have been there :-)
PatinMC - Yes, I have surveys to comeplete before, during, and after each treatment. They also take pictures and I have to compare them with my pre-chemo picture and rate my hair loss as:
0-25%, 25-50%, 50-75%, or 75-100%. Also, if I feel the need to wear a wig at any point during the trial due to too much hair loss then the trial is considered a failure.
Congrats shipsgirl for being finished with your treatments! GO CELEBRATE.....
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ok... Where do you learn all of the breast cancer lingo?
what is pfc?
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Pfc is post final chemo. I think there is a discussion board on the lingo, but I can't remember what it's called.
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I just had to share the experience I had today...I had my first chemo last Tuesday and have managed to have a pretty good week except I had a terrible acne breakout two days ago. When I emailed the nurse for advice she said the cold caps were to blame! She said the material had irritated my cheeks and chin...what a bunch of BS! It doesn't begin to explain the acne on my forehead, chest and neck!
I am happy to say that a dear friend of mine who is also a nurse suggested the steroids (Dexamethasone) have caused the acne and a bit of surfing seems to confirm this.0 -
Shipsgirl - Big congrats!
2lovelyBs - Acne caused by cold caps? Say what? I'd agree that it's steroids. For some reason the steroids actually give me perfect, almost doll-like skin for a couple of days (probably because it makes me slightly puffy) after taking them but I noticed that many people mentioned acne as a side effect on other threads. It will probably go away within a week or so. I had major problems after my first chemo caused mostly by the steroids and I ended up taking a lower dose for my second treatment. That seemed to help with the side effects - just something to consider speaking with your doctor about.
Sorry, I haven't checked in for a while. Someone mentioned that they had an itchy head. I'd like to suggest using a little apple cider vinegar in your shampoo, if you aren't already. I took the recommendation of someone here and added the vinegar and the shampoo to one of those hair color dispensing bottles and apply it to the top of my head. It seems to keep the scalp fairly clean and free of oil. Although, I've noticed that my scalp doesn't seem to get very oily these days - probably dried out because of the chemo.
It's been about six weeks since the first chemo and my hair is still holding on strong. There is still shedding but it seemed to slow down a bit after day 30-35. I haven't henna colored my hair yet like I've been considering. I think I'll wait until after I complete chemo #3 next week before giving it a try.0 -
2lovelyBs-That is a bunch of BS!!! I recall a nurse blaming the caps for a patients IV leaking outside of her vein, and another where the nurse blamed a connection not connected properly, saying that it must have been caused by the cap changes...What a stretch! At least it shows us that they are no better than other's-flaws, scapegoating and all. BTW Taxotere is known to cause rash. Not always but can be one of the more common side effects. It's listed on the insert that comes with the product.0 -
Shipsgirl, I'm so happy for you. Congratulations!
I'm just catching up because I was traveling this week for my job. They sent me out of town only 5 days after I finished radiation treatment. No rest for the weary
Unfortunately, my employer was not very accomodating during my treatment and I think it's time to look for a new job.
mc in nc, I'm fascinated by the dignicap trial- please keep us posted. I really hope the trial is a success since it sounds so much easier than lugging coolers full of dry ice and changing caps every 30 minutes.
We may be able to survive breast cancer treatment, but can we survive being bombarded with pink everything for the next month? The napkins on the airplane today were pink in honor of breast cancer awareness. Drives me crazy!
I'm about 15 weeks pfc and still shedding....0
