Cold Caps Users Past and Present, to Save Hair
Comments
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MomtoIrishQuads - You have every right to be angry. This is your life and you are fighting for your health - and you have a lot to live for. You deserve clear explanations. I hope you find a good doctor that you can trust. I had the oncotest and based on my score, stage, grade and nodal involvement, it was thought that I would benefit from chemo. I was given a choice of three types and my doctors discussed the effects each would have on me. We settled on T/C because it was discovered that I also have indolent Lymphoma and we didn't want to wake it up, so to speak.
That is something you should discuss with your new doctor. Perhaps a different chemo would work and not make you so sick. Good luck!
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Hi Ladies,
Had my first infusion yesterday with the caps. It was really an exhausting day - my hubby worked like a dog for 7.5 hours. I was able to tolerate the coldness better than I thought, probably because I took a Xanax and Ibuprofen 600 beforehand. I think I froze a spot on my face near my ears because the mini pads I stuck on my ears didn't extend out to my face far enough. I had an electric throw that was a godsend - I would've froze to death without it. I learned a lot about what to do next time.
After my bloodwork, I met with the PA, and he ran down all of the side effects I may experience and said "and your hair will fall out", so I told him I was going to use cold caps and he said "those don't work", so I said "well, I'm going to do everything I can to prove you wrong."
- Kelly
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Kpmacmill,
Good for you by telling the PA the way it is. Did you ask him what data in which he based his "advice?"
I would take before and after pics and then ask the PA (in the best interest of the patients) to please present your pictures and story at his onc department pow wow to educate other oncs on this option for their patients. It's a start and could help those that follow.
For another illness, I advocated for presentation of my case at their meetings and they did.
Wishing you well and C-free forever!
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I hate it when people say that. I am about to do my third infusion next week and I still have a full head of hair. I should be bald by now. My Oncologist's nurse is very intrigued by the caps so I can't wait to see her next week and show her my hair. I corrected everyone when they would list all my side effects.... "Your hair will fall out". No it won't! Some people are just so negative. But I really do hope you return to that same PA after chemo (or even after your second infusion) and ask him if a full head of hair is normal at this point? I love proving people wrong.0 -
It's so cool to be on the PFC side and cheer for those of you who are in the middle of chemoland.
Mom to Irish Quads / Deb - I am not a doctor and basically know nothing. I am concerned about your decision to stop chemo. My oncotype score was 24 and several experts told me chemo. Yes, it sucked. Everyday there was some new side effect I had to contend with. I ran fevers. I lived in a bubble afraid of every germ out there. Even with the caps I lost 50% of my hair. My legs swelled like elephants. I'm still on medication for that mess. But in the end I have reduced my risk of dying from cancer. That's what it is all about. Screw your MO. Find one you like. But please do not make a decision about your health without sound medical advice. Because in the end, all the people who advise you poorly won't be around should a systemic problem arise. Please take care and be well.
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warrior woman -
Just wanted to thank you for the cheer. I really needed it today :-)
Rain
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Just curious - have many of you worn the caps out of your freezer on non-chemo days just for a little extra protection? Is it worth bothering?
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MomtoIrishQuads- You might consider switching to Taxol instead of Taxotere. The number of treatments is more of a hassle-12 weekly vs. 4-6 Taxotere every 3 weeks but, one of the women I helped with the caps did so after her first treatment and was so glad that she did! She said the Taxol was nothing compared to the side effects from the Taxotere. Because she had already done 1 Taxotere/C/Herceptin treatment she only had to do 9 of the Taxol/Herceptin. Sorry, but I I don't recall if the C was for Cytoxan or Carboplatin...
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kpmacmil...I hope the cold caps work for you...but have read posts from other TAC users and some lost @50%. Just trying to keep your expectations in tact. And 50% is better than 0%!!!!
I started my treatment yesterday....so far do good...no s/e's yet.
Experienced CC users: I'm nervous we didn't do so well with the cold caps. My 1st 2 caps were not cold enough and we delayed the premeds/chemo by an hr!!! My first two were only -24/25 C, not the -32C...the subsequent ones were even colder than -32C. I took some Tylenol with my 3rd caps because it was super cold!! But after that...i was able to push through...b/c you don't feel it much after the first few minutes. I easily drank 160 ounces of water yesterday and plan to for the rest of the week...maybe jump down to 100 oz till next treatment.
I'm also concerned that the caps do not freeze uniformly. Thankfully I have those headbands otherwise I would definitely lose a lot of hair at the nape of next and above ears...they do not cover those area well at all with out those headbands!!!
I also wore all 8 caps 2x so kept them on about 5 hrs after my chemo stopped. My fiancé also took a lil too much time in between to change. The caps were on my head, but reattaching the Velcro to make a tight fit all around took time.
I hope it works!!! I guess I'll find out in the next few week 😁🙏
Does anyone wear the caps during the week? Was thinking of putting them on tonight since I still have left over dry ice. Can prob get them cold still not -32C...will it do any good?
Ok...off to work! Then Neulasta shot...will take my Claritin a few hours before!
-Jennifer
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Jennifer- Your issues sound about like the ones that I had and probably everyone else on this thread had as well. My caps were definitely not uniform in temperature and I remember feeling like my caps weren't being changed fast enough, yet here I am exactly 6 months PFC with my long hair still intact. Don't stress! I'm sure the caps did their job yesterday. I never wore the caps in between treatments. I hope your side effects don't get too bad! I never felt nearly as bad as I was expecting. Good luck with everything!
Daye
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Hi Jennifer,
I'm not actually doing TAC (which is Taxotere, Adriamycin and cyclophosphamide) but rather AC (Adriamycin & cyclophosphamide) then Taxol weekly for 12 weeks which is fairly low dose. I know that the AC is really hard on hair loss, but some ladies have actually started regrowing hair during the weekly Taxol since it's not as toxic. I'm hoping if I can hang on through the AC, I'll make it easily through the Taxol (if I can stand 16 rounds with the caps!)
I too was very nervous that we were doing everything right with the caps. It seemed like the temps were all over the place on the caps, but mostly too cold, which is probably the best side to err on I guess.
Good luck!
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Jennliza- I totally agree with Daye! I was so nervous also, but I am almost 4 mos PFC and I have a full head of hair. It is thinner, but it is there!! I was able to dye my hair for the first time today and had no ill effects! Hang in there! It will be over and worth it!
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hi ladies,
Practical question :-)
So I am a week after first infusion and have just done my second post chemo wash (every 3-4 days, twice a week on non chemo weeks).
I just never feel like I have clean hair. I am using dermorganics shampoo watered down and kenra leave in conditioner for tangles. To avoid rubbing my head I'm using a squirt bottle for the watered down shampoo and then rinsing in lukewarm water.
Obviously if this works I am happier to have gross hair than no hair, but is there anything I can do to make it feel more clean? It ever feels icky the day I wash it. Not greasy exactly, but like there is a film on it.
Different brand? Different technique?
Also, curious when shedding typically starts? I am pretty sure I am going to freak out..
Thanks for any help!!
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i used to pat my hair. Many use the squirt bottle. Its hair but for the next few months it is not YOUR hair. If that makes sense. Mine got dry and frizzy then curly Omg....but you will make it. I never combed my hair for months....just used my fingers....u will find a system that works for you. Hang in there.
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RainDew- My hair felt the same way. It took about 3 weeks before I could it did not feel greasy. It will get better-that is what everyone told me and they were correct!!! I used Dermorganics also and it will work. It is just so different from what I was used to. Hang in there!
I started to shed a week after my second treatment. I was told I should be bald by day 21 and I just shed. Yes, it seemed like a lot, but I never had to wear a wig. I did wear a hat a lot after treatment 3. Have faith-it is difficult, but very worth it!!!!
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Hi all- What were people's shedding patterns post-TC chemo? Did you get to keep your hair after extensive shedding?
I had shedding starting day 15 after my 1st TC cycle. It's currently day 22 and the shedding is not letting up, maybe even worsening.
I also had my 2nd TC cycle today and am unsure what to expect.
Ah!
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@RainDew- I found that gently massaging my scalp with my fingertips, with a tbsp of apple cider vinegar along with the shampoo, made my hair feel more clean, even with the Dermorganics shampoo. In the past week (3 wks post 1st chemo cycle), I've also noticed that my scalp does feel a lot drier and I need to shampoo less. That being said, I think I'll forever associate the aroma of Dermoganics shampoo with dirty hair!
@JennLiza- I made the same mistakes my first treatment. It's tough getting the caps to the exact temperature. Just had my second treatment today.. Lots of shedding but no visible changes. Hopefully things turn out okay for us both!
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My hair felt like it had a film on it so I stopped using conditioner. I'm using Pharmacopia shampoo, I find it leaves my hair nicely soft. Also I got frustrated trying to rinse w/o putting my head under, so I ended up switching to cold-ish water at the end and sticking my head under, keeping my hands ~5-6 inches above my head to slow the waterfall. I didn't notice a ton of hair coming out during the shower. It was more when I tried combing it.
Re. thinning patterns, it's mostly near the ears and in the back by the nape. I think the caps just didn't fit well there. The top of my head looks great though (I'm 7 weeks PFC).
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Eloqui - you are at the heaviest period of shedding right now, between 2nd and 3rd treatments, after which it will let up. Your oldest hairs will be shed, but they will start regrowing after their usual dormant period of a couple of months. The rest of your hair will stay and keep growing.
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Thanks Hortense.
I just took a shower this morning, two days after TC#2, and a ton of hair fell out
My shower floor was covered in clumps of hair, and my hair was noticeably thinner when I was toweling off..I really hope this works!
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Eloqui, just want to check that you're using cool water on yor head- the temperature should be lower than your body temperature and that you're not putting your head directly under the full force of the shower head. Some shedding is normal, but it shouldn't be coming out in clumps. Most women will tell you that their hair was noticeably thinner to them, but not to other people.
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Also, be careful to gently blot your hair dry - do not towel it dry as you would ordinarily. Handle your hair as if it is terribly fragile right now, because it is. Avoid any tugging on roots.
I had a shed where a lot of hair came out during a shampoo and was on the floor of my shower. It was discouraging to see, but it didn't happen again. It was during my "big" shed after my 2nd T/C infusion.
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I have been using cool water when showering and use a bowl to pour water over my head so that the shower stream doesn't hit my head directly.
Other than showering, a bunch of hair also comes out when I comb it, though I try to be as gentle as possible and hold it at the roots to minimize tugging.
Hortense, I hope that this was my "big shed" after TC#2. I don't think I can afford many more of those!
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eloqui - It probably was your heaviest shed. It is for many people.
I found combs took out too much of my hair no matter what kind I used, so I switched to using a wet brush - plastic with plastic bristles set about 1/4" apart. I would just use the last row or two of the wet brush on the end or a side as it was easy to manage precisely and good for gently working into snarls. I always worked my way up each lock of hair from the bottom, "like a Disney Princess", as a hair dressing magazine I read at the salon said we all should be brushing our hair. I like that visualization.
Should you get any mats or serious snarls, dry cornstarch sprinkled on dry tangled hair and gently rubbed into the tangle helps to work them out. It's amazingly silky and the hairs seems to slide easily across each other.
Good luck!
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I just had my third treatment yesterday and still barely any shedding! More than usual, but nothing that is concerning me yet. My medical team was surprised that I still had all my hair. The caps are such a hassle, but worth it.
I don't really do anything special with my hair, just more cautious than usual. I've been using the whole DermOrganics line. The shampoo, conditioner, and the masque are all great. I also love the leave in oil treatment. I wash with cold water, dry gently, and comb with a wide tooth comb. No blow dryers, irons, or other products at all.
My caps never seem to be uniform either. The coldest areas are around -42 and the warmest areas are around -25. Such a pain.... but they are doing their job
Good luch to the rest of you ladies!!
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That's great to hear FL_Sunshine - yay!!
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FL_Sunshine - you give me hope!!!! I am on the same Chemo protocol as you....so hoping I do as well.
I am only 6 days past my 1st treatment....and no shedding yet....but i hear my 1st shed will be in about a week or so.
Do you ever wear your hair in clip/tie/headband? I wet my hair in the morning and use lil clips in my hair in the morn for about 2 hours...to help style it. Wondering if I need to stop....
How often do you wash your hair. I've only washed it once since my 1st treatment. Was thinkinig about washing tomorrow.... Was thinking about washing it Mon and Thurs....or is that too much?
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Eloqui - Your shedding sounds like mine and I never needed a wig.
I'm taking to plunge to have my hair colored tomorrow. If you don't hear back from me, Ladies, send the mountees!
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Jennliza,
I'm washing 2x week (mon/thurs). I don't know if it's too much because I am only day 12 so no action yet, but is in line w PCC's recommendations (other than chemo weeks, once per week)
Fingers crossed!!
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Warrior, covering the gray is guaranteed to lift your spirits. You'll feel like a new woman and your hair will be just fine. Come back and give us the report.
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Sunshine - Whooopppeeee! You are doing so well! Congratulations! I hope you continue to do as well moving forward. I think you will.
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