Cold Caps Users Past and Present, to Save Hair
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birdofparadise - I read your blog as well - you did a wonderful job of explaining and providing photos. I'm so glad that abraxane is working for you, and I hope that it continues to work for a very long time.
alibeths, I also had the benefit of Susan at Cold Cap Therapy Midwest, like Angie. Susan did a training session for my helpers, and also came to my first capping session and one other when my helpers couldn't be there. I think her pricing is on her website.
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thx ladies
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Finished my second round of TC on July 9, 3rd is next week (July 30) I still have hair, although there is noticeable thinning. The second session of Penguin Cold Caps went better than the first and I think that I and my helper have got the process down.
So. Three questions for you ladies:
1. I have 2 more rounds of TC to go (for a total of four). If the capping is done correctly, does most of the hair loss and shedding occur during the first couple of times of chemo, or does it continue to take as severe a toll each time? I think/hope a lot of my loss could have been from inexperience the first time. The hair around my ears and nape of neck seemed to disappear very quickly, which seems to be a common thing after reading this forum. I have some small bald patches on top but not too bad. They may also be due to user error, but nothing I can't cover up with the rest of my hair.
2. So I am officially on day 35 after starting my first TC, with two sessions completed, only two to go, and my hair is thinning, maybe 30%, but still hanging in there. If this wasn't working at all, wouldn't I have lost most or all of my hair by now? I thought taxotere and cytoxan were pretty much guaranteed to result in total hair loss if you're not cappng. I am so wanting to believe it's working!
3. After your final chemo session, when can you relax and stop fearing that your remaining hair will still all of a sudden fall out?
Thanks for any advice!
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yes! You would be bald!!! Hang in there! It's working!!!!
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Hoping, hoping, hoping!!
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Yes wildflower, the caps are working! The general rule is that if you still have your hair 21 days after the first chemo session- they're working. You would have no hair left by now if they weren't. It's common to lose hair around ears and nape of neck. It's difficult for some to get a good fit in those areas, really depends on the shape of your head. Make sure you use the palm of your hand to push down the cap tight to the top of your head while your helper secures the flaps when changing a cap. This will stop the cap from popping up. The bald spots on top are most likely because you didn't have good contact in those areas.
It's hard to generalize about shedding. Some women have one or two big sheds, others shed lightly the whole time and still others (like me) don't shed much at all during chemo but shed for months afterwards. Good luck
Edited to add- I've been hanging around this thread for over two years now and never heard of anyone who lost all their hair post-chemo.
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Birdofparadise, your website is an excellent resource for anyone starting to cold cap. I wish there were a permanent link from this page to your page. I finished chemo in January, but your website would've been really helpful. Maybe the administrators could add it to the resource page...
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jc254 - Thank you! I didn't think of pushing down on the cap every time the helper was fitting it, so that may be why I got thinner up on top. I was probably too busy yelping about how cold it felt going on! I will definitely do this for the next capping session. Actually, I'll do both - screech about the cold and push down on the cap at the same time
Does the hair that stays on your head keep growing while you're capping? I'm asking this because my bangs have thinned, but need trimming! I had them cut just 2 days before I started chemo, and now I need about a half-inch cut off, they're poking me in the eyes!
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wildflower, my hair Keeps growing and it seems as though it's growing faster than normal! I feel like I need to cut 4 inches off since I started! I haven't yet but it's getting long!
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I trimmed my bangs a little when I was cold capping, but I ended up growing them out and pushing them to the side. That also helped cover the spot that thinned out around my part. Once I was two months out, I had them trimmed by my hair stylist, along with the rest of my hair.
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My hair continued growing through the cold capping process, probably about 2-3 inches. I can't wait to get a trim next month if my shedding slows!
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Thanks, guys, that's good to know. I was seriously thinking the caps weren't working
So weird! Bangs that fall out but grow at the same time! The rest of my hair doesn't seem to be growing in length but instead I see lots of breakage. However, I was pretty rough on my hair just prior to diagnosis (went to bad colorist when my stylist was awol and had to have corrective color - ouch, and some other things I shouldn't have done) So maybe once all this is over with, if I have enough hair left, I'll get a shoulder length bob or something cuter than what I have now.
wpmoon - what chemo regimen were you on? 2-3 inches sounds like a lot of growth unless you were on some kind of extended treatment. I will have 4 TCs in all when I'm done. 3rd one is next week.
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Welcome to all the newbies just getting started with caps. It is a long, scary process, but hold tight, caps worked for so many of us. Just keep in mind that your hair will NOT look like your pre chemo hair through this process. The goal for me was to have enough coverage to look like myself for my son (he was 4 at the time) and not to look like a cancer victim with a wig or bald. Though I had tons of shedding and continued to shed for 4 months PFC, I achieved my goal. I did use some clip in extensions for a while to help me feel better about my hair, but I never wore a wig or looked like a cancer patient. I returned to teaching aerobics 4 weeks after completing chemo and my class never knew I had chemo as I was still sporting my usual ponytail in class. Take it day by day....you will get through this and keep perspective about realistic goals.....hugs to all!
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Wildflower - I had 6 TCHP infusions over 18 weeks. I'd say it's realistically grown maybe 2 inches. My hair grows fast. I started taking Biotin about a week after my last chemo. Have been taking it daily since.
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a few questions!!! I'm only 1 week pfc
Has anyone spray tanned? How was it?
Can you swim after cold capping?
What spray in conditioners worked well??
What about latisse??? How long after and did it work well? Thank you for your time!!!
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Wildflower2:
I am going into 7 weeks post TC. what your experiencing is normal. I still have my hair!! You will lose some behind the ears. I think that's due to a defect in the caps. For the top of your head, try something I wish someone would have told me. Make sure the caps are DRY! if they are wet at all from frost, they can cause the frostbite. Thus leading to hair loss. I am just know noticing baby hairs coming in IN MY OWN HAIRCOLOR!! It's s long process. But you will make it!! I had 6 rounds and made it!! If you Ask your team if you can take Hair Volume. It's a supplement you can buy at Walgreens. All natural. I have been told it's what is keeping the new hair brown not grey. It also kept my nails great!! TC is harsh. I also kept a dark polish on during Infusion. My team could not believe my hair or nails!!! Good luck and stick to the rules!!
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Alibeths:
Start with GLOW LOTION from natures gate. all natural no parabens. It comes in light or medium. I wore it to my infusions and no one could believe I was not tan!! You can buy on Amazon. I use Kenra leave in spray conditioner recommended by the Rapunzel Project. I am using latisse all the way through and now since February. I kept 70 percent of my lashes and 60 percent of brows. Love it!! Worth every penny. You should not swim post chemo. I do believe you need to wait at least two months. As the drugs are still there for that long. Are you doing radiation? If so, no swimming at all. I know. I live near the shore at can't go. Don't forget heat is not good for your hair UP TILL 6 months post chemo. Ugh. Good luck!!
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Also you hair will grow. Do not cut more than one inch a month. The follicles do not like it!! Just the opposite of what your hairdresser says right? Mine grew quit a bit all through.
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I also used Kenra spray in conditioner. It worked great on getting the tangles out. I also used a Wet Brush, which seemed to work better than a wide-tooth comb on my hair. They also have a thickening mousse and a salt spray that add body to my hair.
As for tanning, I'm still using a self tanner from Moo Goo that is all organic. They have a great sunscreen, too. It's 15 SPF but lasted and worked better than some 45 SPFs I've used. The company is out of Australia but now ships from California so shipping rates are low. They also have a great deodorant that I now use. I have to say nothing really worked well on "chemo sweat" but once that was over, I found it works better than any other non aluminum deodorant out there--and I've tried most of them!
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Hi, all. I'm a newbie.
I've been using Penguin Cold caps for 3 AC treatments and will have the last AC on Monday. I've had some shedding and am developing a small bald spot along my part. Guess I'll have to change my usual part.
On August 10 I'll switch to Taxol weekly for 12 weeks.
My newbie question is: will I have the same amount of hair loss on Taxol as on AC, more, or less? Or is this the usual "it's individual". I still have my eyebrows and most body hair (sigh, and I was looking forward to not having to shave my legs this summer).
Another newbie questions is: I get light headed and slightly nauseous (along with getting a hot flash on some cap changes) during my cold cap treatments. Is the nausea more due to AC? Will it reduce while on Taxol?
I have lots of friends and a great husband who are my cold cap changers. But I would love support from those of you who have done it to get me through the 12 weeks of weekly Taxol. So far I'm the only one local (Princeton, NJ area) who is doing it, so my local Breast Cancer center can't help.
I'm doing it for both myself (so I feel less like a cancer patient with a capital "C") and my sensitive 8 year old son.
Thanks in advance for advice, tips, encouragement, etc.
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astrogoddess, weekly taxol is much easier on your hair than AC. I did weekly taxol and barely lost any hair at all on my head. (I did lose hair elsewhere on my body.). I would think you will probably continue to shed from the AC though. Many of those doing AC/T or TC continue to shed well after finishing chemo. But I don't think the weekly taxol will contribute much to your shedding.
I never had any nausea while cold capping. Taxol usually doesn't cause nausea, but I did get an anti-nausea drug of some sort in my pre-meds. Some people take Tylenol or other pain reliever to help with the pain of the first few caps - maybe that's what is causing your nausea. I take plenty of Tylenol every day for arthritis, so didn't take any extra before capping.
Pat
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Two nights before my mastectomy, my husband and I toasted my right breast to thank her for over 5 years of nursing two children. I had friends on an email forum (all women who used to pump milk for their kids) do the same.
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Hi ladies I just had my first treatment of chemo today AC. Is it normal to feel real nauseous after today? I anticipated feeling fine today. Do you think the nausea is from the chemo or could the caps making me feel sick? I took anti nausea pill when I got home did nothing. After the caps I took half a Ativan & have been in bed since. I need to get up & move but don't feel great.
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I have 2 small kids to take care of. My husband is in the police academy in our town till 10pm. My sister in law is here to help but after this treatment I won't have help. We have recently moved and aren't by family or friends. Now I'm nervous this is how I'll react to them all and be in bed all week.
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Jb you shouldn't be that nautious...I would suspect the chemo and that you need more antinausea drugs in your premeds. I highly doubt it is an after-effect of the caps. Call your MO. You may need a different after chemo nausea med to try and get this under control. Everyone responds differently and certain meds work better than others for each person. Hang in there!
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jb, the caps made me nauseous. But it's prob the chemo too!!!!!! You'll need to stay ahead of it with your meds. Try something else the dr gave you if the Ativan isn't working. I'm sorry you don't have much help. Where did you move to? I have a 5 year old. My mom would help each treatment. Talk to your onc about nausea meds. Hang in there
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hi Jb - I had AC treatment and wasn't great by time I was home. Some nausea but also just wiped out. Continued the day after but then was okay by day 3 forward. Definitely ask about better drugs though. My nausea was mild.
Everyone kept saying day 3 or 4 was their worst. Just shows how we respond differently.
Wishing you a better day tomorrow.
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jb, I also don't think it's the caps making you so sick. Please talk to your oncologist and see what else you can try to get the nausea under control.
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JB,
I found that ginger candy like Gin Gins are helpful. I found them at whole foods. Other people swear by peppermint. I drink Celestial Seasoning lemon ginger tea during cold cap.
Definitely tell the doctor if your anti nausea meds aren't working.
Today I had my last AC and got a bit nauseous during the initial cooling part. Think it was a Pavlov reaction, but I'm also coming off of a cold.
Hang in there.
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Yeah I know the caps make some people nauseated while wearing them...but to remain nauseated long after they are removed? I don't see how they could have a long lasting delayed effect like that. It has to be the chemo, IMO.
I had Aloxi and the "cadillac" of antinausea meds in my premeds with benadryl before chemo...Emend. Apparently it is quite expensive. I think I took compazine afterwards. My doc told me to start taking post chemo nausea meds on schedule after chemo, even if I had no symptoms. They said it is easier to prevent nausea than to reduce it afterwards.
There are always Phenergan suppositories which can be quite effective, too.
Many choices...call...it's 2015. You shouldn't be suffering with nausea. There are plenty of other post chemo symptoms that are hard to manage, but supposedly they are able to keep nausea under much better control now than they were able to in the past.
Days 3 to 8 were the worst for me.
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