Cold Caps Users Past and Present, to Save Hair
Comments
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lighthouselady - I did AC-T and had a couple of headaches (I normally never have headaches) but usually in the second week. I'm sure it's not the cold caps. In fact, I have seen cold caps marketed to help with migraines - though no taking the temperature down as cold as we do.
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Thanks shipsgirl - my headache was the second week also. I was tempted when my headache was the worst to get out one of my caps and put it on! Freeze the pain away! LOL
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Lighthouselady, I also had terrible headaches starting 1-2 days after chemo and continuing for a week or so. They coinincide with the other side effects. The headache after the first treatment lasted 8 days and would not let up no matter what I took for it. I actually did use the caps for temporary relief out of the freezer.
When I complained to my onc she also said she would like me to stop using the caps and I told her that wasn't happening. The drugs I'm taking have headaches listed as a side effect, do I'm not sure why she is acting like I'm the only one who has experienced this. Last time I took some Fiorecet left over from my surgery and it relieved it, so I got my onc to call in some more.
I have a hard time believing a cold cap would trigger a migraine or headache a week later, and even if it knew that was what was causing it I'd probably still do the caps anyway because its not like I am putting myself in danger or anything. It's my worst side effect after fatigue.
So I'm off to buy ice for round 4 tomorrow.0 -
Dear Marsha and everyone,
Hopefully your headaches will decrease. I too wonder why your MO recommended stopping the caps if the headaches occurred a week later, that sounds more like a drug reaction to me..
Thanks to everyone who commented about letting people know about the caps. I remember my feeling when I was on a lake in a kayak with the wind blowing in my hair after 5 sessions of chemo and feeling so grateful that I did not have to wear a wig during kayaking or a scarf. It is an individual decision though and I will certainly respect that when I attend the Casting for Recovery retreat for breast cancer survivors this weekend. If people want to know more I will tell them about the caps.
I do wish that they did not cost as much though and that insurance would cover. My insurance did not cover a wig or cold cap. In UK apparently, cold caps or wigs are covered
Hugs everyone
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Lighthouselady I am SO glad you are doing well so far. GOOD LUCK with the next round.
I had migraines- not from the chemo but from the zofran which is an anti-nausea med. It is nototrious for doing that. I switched to compazine which worked great for me- no nausea and zero headaches.
Not the cold caps do not cause headaches. The cold does not penetrate into the brain! Any doctor who said that is seriously suspect, sorry to say.
I am so glad that we all have each other to share experiences. I thought the headaches were just "part of it"- never had a migraine i my life but it made sense that chemo might cause them. But no, I learned here that the zofran was doing that to other girls, and I never suffered again.
GOOD LUCK!!!!!!!
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Lighthouse - just chiming in on the headache question. I had some that lasted for days and days... really awful. Zofran was the culprit for me to.
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lighthouselady - cheering you on! Here's to minimal shedding! As for headaches, i had excruciating ones after the first round, slightly less excruciating the 2nd round, then they disappeared for me. I don't believe they have anything to do with the caps.
I am nearing the end of week 5 of my 6 weeks of rads. Skin is now in very rough shape; they prescribed a medicated cream for me. It seems to be helping but we confirm tomorrow whether we pause rads or not, due to how bad the skin is. Thanks to the other ladies who posted what they used - i have been using Aquaform, aloe vera and some other creams. Though was warned by all of the rad techs and nurses that regardless of what i use, i won't be able to avoid the side effects. Lovely.
Today was just that one extra thing - i noticed one of my finger nails trying to fall off. I am 9 weeks pfc and this was totally unexpected at this point. I have been noticing this line on a number of my nails and wondering what it was. Well i guess i have my answer. Most of my finger nails have this line and i am thinking this means they will all fall off at some point. Lovely. This beast just keeps on giving.
As for the hair - brows are coming back in decent shape; not all there, but much better. Lashes are finally starting to show up. Lots of baby hairs in front and around ears. The back and nape - not feeling much success there at this point, but hoping in a couple more months i will notice the difference. I have startng washing my hair in the shower again - that feels great. I just turn the water to not too warm, but it's definitely warmer than what i would use before. The flaking and itching are gone now thankfully.
tmb - so glad to read how great you are doing.
shipsgirl - glad to here you are seeing growth!
curly0 -
curly - I'm so glad to hear how you're doing! I've been wondering. Sorry the rads are unpleasant, but you are nearly there. From what I've read on the Summer Rads thread, recovery doesn't seem to take very long. I'm at 13/32 so I feel like I have a long way to go. So far, the skin isn't showing red. I'm using emu oil (thanks to Sciencegal and others) and Aveeno.
Yes, my growth is quite quick. I'm 7 weeks pfc and taking liquid silica (again, thank you Sciencegal) and B12. My hair regrowth is at 1 inch already. Eyelashes are about 1/8 inch. I now have tiny growth all along my brows and I just need to darken the hairs now, instead of draw them in. Sadly I noticed some slight leg stubble. I had a couple of chin hairs pre-chemo. They started to grow again, but when I plucked them, I noticed they came out easily and didn't seem to have "roots". They haven't regrown... so far. Same with my bikini line.
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Hi Murphy!
I have been busy with kids and appointments to get ready for surgery next week. I have not forgotten you! I am working on pulling video and photos together and my husband says we can get it to you this weekend. We probably need to edit sound for inappropriate conversation since we were usually laughing while they drew bullseyes and peace signs or played tic tac toe in the frost on my caps! My first treatment I went for blood work while my husband and friend wheeled the coolers into the infusion center humming the Beverly Hillbillies theme song! My last treatment the nurses dressed up and did a graduation rap while they pulled my IV and we popped a bottle of champagne. (I took them sparkling Welches!)
Obviously my center was very supportive of caps! I was the first one to use anything other than PCC though. My onc was also supportive and was candid about the shedding and the bad/dirty hair days, etc. but he told me in his opinion cold caps are just about 100% effective! He also told us how he went home and soaked his hands in ice water to see what his patients were going through, but he couldn't take it. Said it was too cold and the ladies were much heartier than he was! I also "chilled" my hands and feet with homemade ice bags that we put on dry ice too. I think it helped with the nails and the neuropathy. I had mild tingling in my right toes after the third treatment and am still waiting for it to go away. My left foot has had problems from day one but I shattered my ankle on 1/28 and had surgery, so it had issues to start with! I have had no problems with my hands.
I couldn't afford the mitts and boots so I made my own and will post info on those this weekend too.
Curiously too, I still had to shave my legs, pluck chin whiskers and my arms and face still have all their hair. I also complained to my doc about the quality of the complimentary Brazilian that came with treatment! I still have eyelashes and eyebrows but I know some have said they lost them 4 weeks PFC. I am four weeks and 2 days now, so hopefully.......
You are going to do great! As you know from these boards, it hits us all differently, but all come out the other side! It went surprisingly quickly too!0 -
Here is a summary of how I used the Elastogel Cold Caps:
I had no pre meds except Aloxi, which they push in like 30 seconds. I also used a scopolamine patch for nausea. I put it on before we drove to Chemo and took it off 72 hours later. I did not have a single bout of nausea, so I guess it helped! I also did the oral steroids at home, but cut them back the third and forth treatments. The first treatment they had the .benadryl next to me in case I had a reaction but they didn't give it to me just because.
I had asked my Onc for Ativan in my IV because I had heard it helped patients tolerate the cold caps. At my first treatment though it took them so long to get my IV going that we started capping so we could get the show on the road! By the time they started the IV I told them I was already frozen and didn't want the Ativan. I never used it and just took 3 rapid release Tylenol before we started each time. The caps were a little uncomfortable for the first few minutes, but never painful. By the 4th treatment the cold did get slightly more intense where the shedding was the worst.
Since I really had no premeds we started the caps and just let them know when to start the drip.
We wet my hair with a spray bottle of diluted leave in conditioner and put a disposable shower cap on. I put the thick moleskin on my forehead and thinner stuff on my ears because that is where I was shedding most. I cut it to shape the night before so it was ready to go. On a couple of occasions I did get some "freezer burn" on my ears or forehead at the hairline so we put light gauze sticking up from the moleskin. I just had some peeling a couple weeks later.
1st cap was then on 15 minutes
2nd cap was on 15 minutes
Changed to3rd cap and they started the drip
Then we changed every 25-30 minutes until the drip was done
We kept going until 5-6 hours after the drugs ended
but we left the center and drove home. I live outside Atlanta so we had a 25+ minute car ride. We would just pull over someplace and swap caps. A couple of times we stopped at Subway and I went in and ordered. The girl working there asked what was up and then said her boss's wife was going through treatment and had lost all her hair and they wish they had known! I just saw that girl and she said she couldn't tell I had lost any hair! Who cares how we get the word out, right!,
At my second treatment I asked them to slow the cytoxan drip down. The first time they ran it wide open and I actually felt it hitting my throat and the "phone sex" voice kicked in! When they slowed it down that didn't happen so much and I figured if it wasn't flowing so fast it wouldn't hit the hair as hard either. Lemon drops helped manage the scratchy throat too.
I also always had them finish the bag of saline just for the hydration. Don't know if it made a difference, but figured it couldn't hurt!
The cooler we used had been modified to hold the dry ice along the sides and top so my husband never had to touch it. He rotated the caps as we went through them and they refroze by the time they were up for their turn again. After the first rotation we sometimes changed them out sooner because it is hot here! Anyone that wants more specifics on the cooler or cap rotation just let us know!
Cap changes took about 15-30 seconds. It was like taking off a winter hat and pulling a new one on. Because of the shower liner they slid right on and right off not pulling or putting any tension on my hair.
Hope this helps those of you wondering about other cap brands!
Lynne0 -
Curly, I am so jealous! I haven't had a proper shower since I broke my ankle in January! Then surgery and then cold caps. I can't wait. I bet it feels great! Also, my RO said Miaderm is pretty good for the skin but he recommends a melatonin based cream that you can get on Amazon. Unfortunately I don't know the name of it since I don't start rads for a couple more weeks but I will call his office and try to find out the name. He said they use a similar cream in Germany and it has awesome results but it is not FDA approved so we all know how that goes. What is on Amazon is close to it though. Hope things settle down so you can just get done and move on sooner!
Lynne0 -
Michelle and Marsha
Hope all went well with your treatments this week. Wishing you few and mild side effects and terrific weekends!
Lynne0 -
Shipsgirl-- fabulous about the new, fast hair growth! I am just over 4 weeks PFC and waiting to see signs. Biotin is supposed to be great for the hair and nails too. Been lurking for a while and I love your outlook and sense of humor. Your shoe picture was the best!
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Thanks sewwhat! I still laugh about the shoes, myself. I put mascara on my tiny lashes - just because I could! lol
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Hi to all of you cold cap users. I just started yesterday. What an ordeal that was! Thankfully, I picked a great team in my husband and sister. I think my husband was especially proud of his cold capping by the end! Anyway, I'm sorry for all of you having to go through this. It sucks. I have some questions for you veterans. Can I work out? I sweat through the head and the instructions are basically to keep your head cool for the next 3-6 months. I would tone it down a bit, just enough to get a slight heart rate going and a spray bottle next to me, but I just think it has to help to have some exercise. Also, what is the "shedding" I read about? Should I expect this? Are there any other tips that you have found helpful? My next treatment is in 3 weeks and I am only 1 day out of the first treatment so so far feeling a little tired but otherwise fine. Thank you for your response!
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mfm - hooray for you! The first one is the hardest because it feels a little chaotic with the timing and the cap changes. You're right, it is an ordeal. But I'm glad I did it and I hope you will be too.
Yes you can exercise. It helps with fatigue. You don't want to overdo it so listen to your body. Others have also done the head cooling during and after with good results.
Shedding is likely to happen. You will lose some hair. The amount you lose will depend on your chemo regimen, among other things. I was on ACT which is really aggressive and lost about 75% of my hair, over time (I did 8 treatments). Others, on different regimens and/or fewer treatments lost a lot less.
The shedding usually starts at about day 21. It's just an all over shed, and doesn't involve clumps like non-capping chemo patients get (they usually start losing around day 14). It's good to know about it so you don't panic. I found I had a fairly steady shedding during AC, but when I switched to the T half of my treatment, the shedding significantly slowed during the second week of my bi-weekly infusions.
The big thing is be gentle with your hair. It might not look so great during this, with infrequent washings, no products etc, but a bad hair day is better than a no hair day.
All the best to you. You will get through this. It's hard to believe now, but it'll be over more quickly than you realize.
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mfm48 I exercised 5 days a week all through chemo and after. I did sweat too. I still kept my hair. The shedding does happen.....my hair was a lot thinner but it still was a full head of hair. Glad you got one chemo under your belt. You will be done before you know it.
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Mfm- Congrats! The first time is the most hectic and nerve wracking! Like Shiosgurl said, it will be over before you know it. I did 4 treatments and ticked them off 25% at a time. The 3 week wait between was the worst. I just wanted to be done! I was blessed in th SE department but for the first couple cycles at least I was afraid to fall asleep at night thinking it would hit when I woke up the next day. Everyone had said it would hit day 4 so night 3 was tough! Day 4 was fine and will be for you too :-) I found SEs to be more annoying than anything. Little things here and there like laryngitis. My kids liked that though. I couldn't yell at them! As for exercising and getting hot, I am in Atlanta and have gotten plenty hot! I am just careful to let my scalp get cool again before I touch or run the pick through my hair basically to let e pores go back to normal since they dilate with heat.
Hope everyone has a great weekend!
Lynne0 -
Hi Curly! I saw my lymphedema therapist today. I don't have it but my docs have patients with node removal see her until they are through radiation so they dont get it! She also said that the Melatonin cream works great. I have a call in to the nurse to get the brand name so I can post it. The therapist also said that you can take cotton flannel (nice and soft) and soak it in the aloe and then drape the compress on the skin and it helps. Gel or juice work.
Have a great weekend
Lynne0 -
Lynne, so kind of you to ask and post about it - thank you! My Dr. actually prescribed a cream they use for burn patients, called Flamazine. It seems to be helping in just a couple of days of using it. So we are crossing our fingers. He took a look today and decided we should continue treatment. I have 6 zaps left. Let's hope all goes well.
Crazy thing is, i haven't even finished treatment and already every new pain scares the crap out of me. Ugh.
Shipsgirl - love that you used mascara - i think i may do the same - why not??!!!
mdg - you are superwoman for exercising throughout! Way to go!!!!
curly0 -
4sewwhat - forgive me, but what does SE mean? I am having 4 cyles of TC and finished one. I already feel not myself. Will this last the whole time or do you get a surge of energy again? Also, I read somewehre to take Silica compound to help with the hair, but my onco can't give the go ahead. One of the nurses from the infusion said absolutely not, but she is also the one that said that the caps are "trending" again. She clearly did not approve. Thanks for your comments!
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Hi Mfm,
SE means side effects. It took me a while and I still don't know what some of the abbreviations mean!
Yeah! You are 25% done! The first cycle was rough on my throat and my taste got really wonky. That improved and while my taste was a little dull for treatment 2&3 it wasn't really off. I did have some fatigue in my legs and aches in mostly my knees and hips on days 4-6 but it didn't keep me in bed. Just uncomfortable like the flu. I did not get the Nuelasta shots so I can't speak to those SE. My doc was good about doing whatever you needed but not loading up meds just in case.
I do remember being a little out of sorts the first go round but it passed quickly. Part of it is the steroids if you are taking them. I did oral at home the day befor, day of and day after. Did they give you a lot of pre meds? Part of it is the adrenalin crash from just getting through that first round! The first was the hardest mentally because you don't know what to expect and physically because your body is like "hey, what do you think you are doing?".
Silica is supposed to help with hair and so is biotin. I dont understand why some docs say fine and others are like absolutely not! I was taking wheat grass, Chaga mushrooms and chlorophyll drops for my blood counts. I never went into the anemic range and shocked my doc. I made a list of vitamins and supplements before treatment started and had him write yes or no and if no, why? There was nothing he said no to just said some things he didn't think would be helpful. We did agree I would not take any antioxidants 2 days before or after chemo. Iron is supposed to help with the air too.
I bet that nurse would be trending the same direction if she was going to be bad in a couple of weeks. It's just kind of sad more people don't know and so any docs offices don't pass the word about caps.
Best of luck to you. I hope you have a ligh SE weekend!
Lynne0 -
Curly, hang in there! Just six more zaps. I start the zappage in a little more than a week. Can't wait to get past that hurdle.
Tmb - how are you? How's the radiation going? How many more treatments do you have?
Mfm - you did it! One down and just three more to go. The capping gets easier as everyone gets the routine down pat. You're also on a TC regimine and a lot of the cappers here have had good results with that protocol.
4sew - I'm about six weeks PFC and so far I still have some lashes too. My brows, like my hair, are super thin but still hanging in there.
I didn't have great success with the caps but I was pleased with the results nonetheless. No real bald spots anywhere except for over my ears. The problem I'm having now is the unending shedding. It's not a lot. But it is constant. And I haven't got any hair to spare! I'm just hoping that new growth kicks in soon...
Kay
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Hi Kay,
I hope you don't mind but I told a lady on another thread you are on that you also were on this thread and did caps. She posted that hair loss was 50% of the reason she didn't want to do chemo so I told her about caps and directed her to this thread.
Glad to hear about the lashes! Try the mascara like Shipsgirl!
Great weekend everybody!
Lynne0 -
Lynne - no problem. Always happy to share whatever I've learned. I'm glad you directed her here. These ladies are pros and so supportive. They certainly helped me stay sane through some rough patches!
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kaydeesmiles, if you dont' mind my asking, is there any particular reason why you think you didn't have great results with the caps? I am just starting and would love to hear your experience. Thanks!
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4sewwhat - thank you for posting the info. I will email you soon, thanks for that.
I just have to coment on something. The doctor just put the port in. I asked him to not put in wear my bra strap goes. I wake up and it is closer to my shoulder, wear a purse strap would go. ??? Oh we'll, it is now. I'll just have to sake the best of it.
I start chemo next week. Think I am doing A/C for onece week/every other week for 4 treatments. Then the taxol/herceptin once week/12 weeks. I thought they said my hair would probably come out with the second half of the treatments. The place is a little indifferent about the caps. They are fine with me using them, but clear that they don't help with the changing. The Elastogels seem to be a one man job so I should be okay.
Thank you everyone for your posts. They are very helpful.
Murphy0 -
mfm - you know, i'm not exactly sure.
i think there could have been few contributing factors.
one is i that my onc made an error and i was given a higher than recommended dose of chemo drugs during my first round. (nightmare)
another is that i had a lot of relatively thick hair. i'm sure we were getting the caps cold enough. my doc's office had a freezer and we always took dry ice as a back up... but my hair could have acted as insulation against the cold, at least initially and maybe the scalp wasn't getting down to the right temp? i dunno.
i've read conflicting information about the caps' effectiveness with various kinds of ethnic hair. so i'm not sure. some of us have a good deal of sucess (tmb) - some of us a little less. (me and curly). while we all have ethnic hair, i'm sure each mane is very different and we had different results.
i was not one of those lucky people who "sailed through" chemo. it may be that just as an individual my body did not process and break down the chemo meds well. we're all so different in how we handle those drugs...
so that's a long rambling way to say who knows? - ha!
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Murphy! So glad you found your way here. This is an awesome, strong, resilient group of ladies. I learned so much from them while I was lurking here! Welcome :0)
Lynne0 -
So we were just standing out in the sunshine enjoying the beautiful day and I caught my reflection in my truck window. I commented that the thin spots really stood out in the sun and said other people had baby hairs by now and I had hoped I would too. So then husband says "you do but they are grey!". Going to be a long weekend for him!!
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