Cold Caps Users Past and Present, to Save Hair
Comments
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Your nurse is wrong. You need to be cooling roughly an hour before, all during and for four hours after Taxotere. It's not fun - dress very warmly and use an electric blanket if you have one, or wrap up in a thick quilt to keep your body warm, but cooling your scalp for that long will enable you to keep your hair.
Good luck!
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Hortense-Michelle is doing the Paxman caps at her clinic, so they have a different protocol than the Penguin cold caps. Nurses probably won't let her sit connected to the machine for four hours post-tx.
Michelle-Hope your day went well and wasn't too eventful. Hang in there and wishing you a week of gentle SEs!
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Thanks guys. I was prepared to stick to my guns. When she came back to check on the machine temperature I said I was really worried about the cyclophosphamide and she said it's fine, we'll wait until I've had the cap on for the recommended 30 minutes. The recommended cooling times for the Paxman are:
30 minutes prior to and during infusion for all drugs
1-2 hours post infusion for cyclophosphamide
45 minutes post infusion for Taxotere.
I had the cyclophosphamide first, over 10 minutes. Then the Tax took an hour and I keep the cap on for an hour after that so I think I was okay. I was shocked at how relaxed they are about it though, like "nah, that'll be fine". Well hello!! It's not like we can go back and try again. The first time you screw up, my hair is a goner!
The first few minutes were shocking. It was okay on my head itself, probably because my hair was protecting it but my eye balls felt like they were going to explode! It soon passed and it was more the chin straps that caused discomfort. I am concerned that some spots weren't in close enough contact with my scalp though. Whenever I pressed down, if felt colder which suggests it wasn't numb and therefore not cold enough but only time will tell I guess. I took a belt to wrap around for added pressure but it kept slipping off because it was at a difficult angle. I reckon even if I lose some spots, as long as I can keep it consistent each time I can find a suitable covering to hide it and as long as I have some hair length people need never know.
My fingers are tightly crossed. Do I need to start treating my hair delicately from now on? Or in a week or two when it would naturally start shedding?0 -
great idea for Michelle - on buying a few Elastogels, soltantio. I also used Alleve on treatment day.
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I took two Tylenol twenty minutes befor starting. I think it helped.
I didn't think my caps were uniformly on my head either and kept poking them, but it turned out that they were. In fact I got two frostbite spots that first time.
Good luck!
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Hi. Haven't checked here for a while. I finished chemo using Penguin CC in April 2011. Saved about 85% of my hair! Thankful every day (still) that PCC worked so well.
Just wanted to comment about hair getting caught in Velcro. My husband and I have helped 18 girls save their hair with PCCs. We always tell them to only unfasten the chin strap. Then just lean forward and let the cap come off like a helmet.
We show them how to get the caps ON so that no hair is caught in the Velcro. That's important. Then when they lean over and slide the cap off (like a helmet) without opening the Velcro - it does not catch any hair.
Hope that helps.0 -
I used the caps Monday for the first time. The first was cold but after that ok. I leaned forward and it came off with no snags also. Just found out from PCC rep I should use 2 hours out of my freezer every other day. I had been only doing 30 min daily so I am boosting up the time.
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Hi everyone and thanks for the tips. Thanks to Geralyn P. I was able to have the Penguin cold caps delivered the day before my first chemo session so we could get them properly chilled in the freezer and put in some practice time. I have long-ish hair so avoiding the velcro snagging was the steepest part of the learning curve! But the caps definitely go on ok with some practice.
I have a big head so got the extra headbands and the gold strap (thanks for advice) and that really helped snug it all up.
We rocked the chemo session, all wore some glam pink stuff and made a "chemo penguin party" out of the afternoon/evening with the caps. My cap helpers may wear tiaras next ime (or halos in my opinion!)
My nursing team was great too and very curious about the caps. Some of their patients had heard about them and had asked but our staff had not seen the whole process in action yet.
I hope that others who are considering this PCC treatment can find some great helpers like i did. Please dont be afraid to ask people. They want to help but dont know what to do or say. Here is something really tangible and better than flowers- Come help us knead the cold caps and do cap changes for a couple of hours!
I am re-reading all of your tips now that I have had my first session, looking for ways to improve our technique and looking forward to my first hair wash tomorrow!
Thank you all so much.0 -
I know after changing 14 caps, even with help through the first 5, my girlfriend was exhausted! She said she wants to make sure she does everything right. Fortunately our helper friend Lisa kept reassuring us it is not an exact science and you just do the best you can.
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My husband is an engineer.....he did a great job changing my caps along with another helper each time. He was very particular....that worked to my advantage!
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Hortense - that's reassuring that you felt the same. Only time will tell I guess...
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mdg - my husband is an engineer, too. After he did such a good job the first time, neither he nor I wanted anyone else to take his place doing my cold caps! It was a great bonding experience, actually - he said it helped him feel like he was really doing something concrete to help in the "fight".
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My husband is an engineer, too! Meticulousness is in their nature:-)
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It seems like a bunch of us on here have engineers for hubby's. They are very particular which was a benefit for us! Cold Cap Engineer....I guess that is a new job title hu?
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Hi all...I just wanted to introduce myself. It only took me 3 weeks to get through this whole thread
I am so fortunate to have discovered PCC and am hoping it will be successful for me. I just turned 30 this year and was devastated with my diagnosis (grade 1a, estrogen +, prog -, her2-). My oncoptype score was very high, 34, so needless to say I will be getting 6 rounds of Taxotere and Cytoxane. Aside from that, my husband and I were previously trying to start a family and when this hit, everything went on the back burner. In an attempt to save my fertility, I harvested my eggs and had the worst side effects. I had hyperstimulation from the egg retrieval surgery and had to postpone chemo until my side effects subsided. I am also on Lupron to "shutdown" my ovaries to protect them from chemo.I will be starting chemo on Nov 20 and am so anxious. For the most part, we are prepared. I have a great group of girlfriends that are ready to help with the cap changes (along with the hubby) and will be taking extra strength tylenol the day of chemo. Question....I live in Hawaii and its quite warm here, if I get the dry ice the day before around 4:30pm, will it be okay for a 10:30am chemo start time? I also have thin hair, but a lot of it, is -32c the consensus for my hair type?
Thank you all for letting me share my story. I am so sorry we all have to "meet" under such unfortunate circumstances. I am glad to have found a group of women that understand the importance in saving our hair. It is so much more than vanity. Its a very welcome change to be able to share your thoughts with a group and don't have to explain yourself.
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Question for those of you who had frostbite from the caps and got bald spots as the skin flaked off......how quickly did the hair start growing to fill in the bald spots?
Thanks!
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Howard instructed us and she is absolutely right. Just tilt your head forward and let it slide of versus lifting it off.
Mr. Howard said the exact right thing: you will NEVER get every cap perfectly fit at the perfect time, so chill (I said a funny!) and trust in the process -- understand that Frank has the one poorly fitted cap or cap that is a bit warmer than recommended built into his model.
For example, my husband took a picture of me near the end of my first chemo where I'm asleep with my head straight up and the cap is WAY far back -- like 2 or 3 inches behind my hairline. He went to get a sandwich and came back to that.
He didn't show me the picture until well after that chemo, but he was totally freaked out.
I failed to appreciate the stress placed on the cap helper -- they normally have way less information than we do. My sister did it by herself for the third chemo and she called me in a state of great anxiety 17 days later to make sure my hair wasn't falling out -- an outcome I wasn't one bit worried about.
I have recently thought about how MAD I would have been had the caps not worked at any chemo. Once we saw they work after the first chemo, the following infusions must have been .... stressful for my cap people. I was MAD through the whole damn thing -- MAD that I lived six months with this niggling in the back of my mind, MAD that we didn't have health insurance for most of that time, MAD that the breast surgeon's office said "call us when you are insured," MAD that my left breast had to be removed, MAD that I waited 11 whole fucking nightmarish days for the pathology report, MAD that the report was WAY different from the biopsy, MAD that I had to decide about chemo/Herceptin, MAD that they wouldn't let my ER doc brother who is on the faculty of Baylor in Houston in with me because that was too many people, MAD that I got SO sick after the first chemo, SO sick with a less than stellar response from the cancer center (Dr: do you want me to call something in for you? Me: nah -- I'm calling you up between full body purges so we can get to know each other. Do you have any hobbies?)
/rant over.
So, trust in the process because it works, and all hail to our cap people! Most of them do the cap duty and have to live with us after.....0 -
Thank you Lady Grey!!! You're post is reassuring and greatly appeciated. It is very stressful for us cold cap helpers. It's a huge responsibility-we want to make sure you don't lose your hair! The first is always the most difficult because of anxiety due to fear of the unknown. The following treatments are usually easier. Not so much so for the helper. It's a juggling act for sure.
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ndmk - welcome! I picked up my dry ice at 4:30 p.m. the day before chemo. Kept it in the coolers in our basement, out of the direct sunlight. Get 100# instead of 80#. We did 80# the first time, and by the end of the 4 hours post chemo the caps were not quite at the -30 recommended for my hair.
Regarding -32 degrees, hard to say. I did -30 for fine, thin hair. So it depends on just how fine your hair is. Err on the side of colder, IMO, unless you feel your scalp starting to hurt - may then need to warm it up a degree or two (but call Geralyn to be sure - that was what she told me to do).
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soltantio, great to hear that it worked well for you getting the dry ice the day before. I'm assuming the first chemo day will be really long with the slow infusion added to the 4 hour post cold cap requirement, so shaving off any time the day of chemo would be helpful. My worst fear would be not being able to get the cold caps cold enough to the required temp. I'm so nervous and terrified for the first chemo treatment but take great comfort in reading about everyone's experience.
dancetrancer thanks! i will definitely start at -32 and see how it goes.
Do you think that 4 vs. 6 treatments of TC makes a big difference in hair loss with the caps?
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Well, I thought I'd share my PCC update. I am now on day 11 following my third round of TC (one more to go), and at this point I have to say that I don't think I have lost ANY hair, other than the normal amount that I would typically expect to find in my hairbrush. After each chemo, my scalp has felt a little sore for a few days, which I'm guessing is probably "near frostbite" - not really frostbite, but irritation nonetheless. I've been using a "follicle stimulator" product made by Mediceuticals and otherwise following the protocol - gently washing twice per week, no heat, almost no blow drying, no color. So the hair I have looks pretty danged crappy - but it'll be much easier to fix in one day at the salon than in a year of regrowing! Anyway, here's my question/concern - I keep reading about people who experience significant shedding after chemo is over. If that describes you, did you already have some shedding along the way which continued and/or increased? Or were you like me - no shedding during chemo, but lots afterwards? I'm trying to gauge the extent to which I may actually have dodged this bullet! Thanks! Sonnet
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Sonnet~. I finished chemo 1-13-11... I had barely shed any hair up until that point....normal amounts, once in shower I got a clump of five hairs and was sure it would all fall out...of course it never did. I did shed until July 4th ....I would say I lost 25 - 30% of my hair by then....but two things.. no one could tell, seriously not even my hair dresser...I shed evenly ...no bald spots anywhere.....that same hairdresser also told me I had 2-3 inch hairs coming out everywhere .... We laughed about sprouting hair.....I think the best part of using the caps is that what sheds grows back ...quick!....while many wait 10-12 weeks to see growth after chemo....we actually grow new hairs during....
Some people don't shed much through the entire process....I am basically vegetarian, and now Frank recommends iron...he used to anecdotally say meat eaters did better, I also did not take silica, it is now recommended.....I did take B6 and l- glutamine.
I think we are all different, but the common outcome is we keep most our hair. And while like for me I shed quite a bit consistently for about 6 months....I still kept most my hair and no one could tell...my oncologist hugged me at my last appointment and ran her fingers through my hair in disbelief...but said ahhh lovely hair. She had tried them in England 20 years ago and was sure I would lose my hair. She now tells all who need to go through chemo and they have a freezer.
I feel like an "elder" in the group now.... I felt like I had a decent chance to save my hair when I started, but still prepared for it not to work...but now there is just too much success, too many women young and old, it works....especially with the TC and TCH protocols....it still is such a shame more people aren't told and consulted that this is an option....
Best to all, Lisa0 -
Lisa - So when did you START shedding? (I mean, above and beyond the norm.)
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Sonnet, I'm with you - I've finished 8 of 12 taxol + herceptin treatments and have not shed any hair at all, other than what I would consider to be normal. I'm sort of waiting for the shoe to drop, and Lmflynn's story of shedding post-chemo, after not shedding during chemo, is just what I DIDN'T want to hear.
I've been secretly hoping to be able to cut and color my hair in early January (I'll finish chemo on December 7), but I guess that depends on shedding. Who knows, maybe by January I will have learned to love my dark brown hair with long gray roots!0 -
I lost no hair during chemo (TCH x 4).
I started shedding a few weeks after the last chemo and shed for five months. Nothing terribly dramatic, but definitely noticeable by me because normally I don't shed at all. I maintained full coverage save the ear area -- I think everyone loses that. No one would have ever suspected I was in chemo.
My hairdresser reckons I lost 25-30% of my hair and I think that's about right. But that was ALL after chemo. I never got freaked out about it because by then I knew the caps work.
She said the regrowth is evenly spread around my head -- no patches. I have thin fine straight hair and the overall regrowth is I guess thin, fine and straight as I have no curls peaking through like the corkscrews at the nape of my neck.
I'm a carnivore. I took no supplements during chemo (MO asked if I had been taking anything prior to and when I said no, she said no). I took biotin and iron for several months after -- stopped because I am too lazy to go get more, which I really must do as my gynocologists has put me on calcium and something else.
I did walk or do the elliptical 5 days a week on average. Many days that was a huge struggle but I still did it more often than not, and it ALWAYS made me feel better which was seriously annoying because the next time I felt like crap (i.e., the next day) I knew I needed to get moving which was the absolute last thing I ever wanted to do.
I also drank gallons of water -- I need to start doing that again too. I think exercise and water are the best things you can do for your hair and the rest of your mental and physical self. Get that heart pumping and all systems moving and get those chemicals OUT ASAP. I joked that had it been an option, I would have done the infusions on a treadmill with a catheter.0 -
ndmk - 4 vs 6 question: I don't know for sure. I would suspect slightly more shedding with 6, just b/c of the additional opportunity for chemo exposure - but that is just a guess on my part. I imagine we have some successful X6 people on here who can comment.
sonnet - I started shedding I think around day 21 or 22 after my first TCH, and it continued thereafter. It varied in intensity up and down, but overall lasted through chemo and about 4 months PFC when it really started slowing down.
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ndmk, PatinMN, and Sonnet, I had 6 TCH and really did not shed at all until after I finished. I don't remember when it started, but for me it only lasted a few weeks, and like TheLadyGrey, I already knew the caps had worked so I was not freaked out. I also took Silica per Frank's advice.
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ndmk, I'm sorry for your diagnosis but congratulations on finding out about PCCs. They have fantastic results with TC chemos whether you have 4 or 6 - great results. You will want to make extra efforts to stay as cool as possible in the Hawaiian air (I'm familiar with it! :-)) but otherwise, keep to your normal routine as much as you can, especially any kind of exercise. I can email you my writeup (it's very extensive) if you send me/PM me your email.
We had a couple of days where our dry ice had to last 2 days; we could only buy in 50# bags, but found that 100# of pellets -- kept in the cooler and kept in their bags, so the ice kept itself cold -- was plenty fine and in fact, we had extra left over. In Hawaii, I'd suggest getting a bit more than you think you'll need that first day. I'd also check into the Rapunzel Project, which can donate freezers for the caps to your cancer center. They may not get it in time for your first infusion, but for subsequent infusions it can make things much simpler (I always recommend keeping some dry ice on hand anyway, in case the freezer temp is off or if you are not doing your final 4 hours at the center).
Susan
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Any advise for hair coloring at the salon at 16 weeks PFC? I plan on using a wash out color but any advise about what brands everyone has used.
Thank you !!
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I started shedding about three weeks post chemo, i shed a little during chemo...more problems with scaling during chemo....it was even shedding after for 5-6 months....similar to what most are saying.... I freaked a little wondering when it would stop....but the minute I quit worrying about it I stopped. I was on a beach vacation for 4th of July and had not washed my hair in warm water for 9 months...and finally said what the heck....best shampoo/shower Ive ever had!....and seriously that is when I quit shedding....
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