Cold Caps Users Past and Present, to Save Hair
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And....I, too, may get my rads reduced to 4 weeks instead of 6 weeks. Depends on results of CT scan i took today. Fingers crossed.
Jc - yay for you!
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Thanks, Sciencegal - I am getting there! Now I have more helpers than I need.
I have 4 people coming in shifts with some overlap. Do you think they will go crazy at the center? But I have drivers to and back, Kaydee, so bring on the meds! And Dance, thanks for tips on the ice!Infrared thermometer question: I took mine out of the package and practiced with it last night. The options for readings are Min, Max and Average - which should I use?
Thanks so much to all you wonderful ladies!! Tomorrow is C day!
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Yay Curly!!! How exciting to be looking at your last infusion!! I will be saying that in 2 weeks.
And you were despairing your hair loss. It sounds like it's better than you thought. Good for you!!
Sounds like a happy week for you.
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I had my first professional trim at about 8 weeks PFC. I wouldn't let him wash my hair - I just had him wet it down at the sink. I didn't let him blow dry either. I had had almost no shedding, but I was still nervous! Nothing bad happened, and the next time I went back I just had him do all the normal things. I had had my color gal apply the Clairol Beautiful temporary color a few days before my first cut, so at about 7-1/2 weeks. I couldn't stand the 2-1/2" gray roots any longer! With Clairol Beautiful you're supposed to sit under the dryer for best results, and I didn't do that; and I didn't allow her to scrub the color out of my hair, just a gentle, thorough rinse. But after that first time with no ill effects, I was reassured there weren't going to be any problems. I did Clairol Beautiful one more time but at 16 weeks I was back to normal color process and product. If I had had much shedding I probably wouldn't have gone back to my normal routine so quickly.
Congratulations, curly, on being almost finished!
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PortlandLady, good luck tomorrow. I think it is good if your helpers overlap - that way they can watch a cap change to sort of get the hang of it. It would be best if two could be there at once, because it is hard work for the cap changers. I know my two helpers were both pretty tired at the end of the day. I was very nervous when I had substitutes a couple of times, because they were coming in with no experience (and they hadn't been able to attend the "class" put on for me by my local Penguin rep). But they both had watched the video and did a great job.
To the reduced rads people - hooray! Will the cumulative dose of radiation be lower, or is each dose going to be a bit larger? I had talked with my RO about the "Canadian protocol", which would have been 3 weeks I believe, but she told me that the studies showing good results from that protocol were all early stage women who did not have chemo; and since I had chemo due to HER2 status (even though very early stage) she wouldn't recommend it for me. I had 33 rads, but I had no problems at all.
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I was walking in the cancer centre today (to get blood tests) and I wondered if I look like a chemo patient with my thin hair. I figure in the real world, I just look like one of those poor people with thin, wispy hair.
But then I realized that even if I shed more, even if I shed out completely, I will be doing it right at the end of my treatment - right when my hair will start growing in again. THAT makes it worth it. Without caps, I'd have lost my hair 3 months ago and stayed hairless for the full treatment.
You all probably figured this out ages ago, but I hadn't quite looked at it in that light before. It felt good.
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Thanks, Pat! I sent your response to all of my helpers and hope to have them all on board tomorrow. Really appreciate your advice!
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Did you know that dry ice is a "hazardous substance"? I recommend that you label your coolers. Mine have the international symbol for dry ice on them (got them from my drly ice supplier) and also a handwritten label that says "CAUTION: DRY ICE".
This way, if my coolers are left unattended, I have protected others - and myself. I can't imagine why I didn't share this before. It is just something I did and then didn't think of it. When I was just at my dry ice supplier, he told a delivery driver to be sure to have the labels on the bins and it reminded me to let everyone know.
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Yay curly!!! I'm so happy you're to the last treatment! And shipsgirl you're not far behind. Can't wait for you all to cross that chemo finish line! Isn't it fun to get the reactions from the radiation doctors and nurses? I'm also encouraged that it means you've kept enough hair for people to say "you have hair??!" That's awesome!!
kaydee, I was brave (or stupid) and had a trim 12 days PFC. I only let them wet it, not wash it, but I felt SO much better after the dry ends were hacked off. I swear my shedding slowed after that. I started using Clairol Beautiful to color the grays at 4 weeks PFC. It's working pretty well at covering the grays until I can do real color (it washes out after about 8-10 washes). I blow dry my bangs these days and they are surviving just fine. I'm not brave enough to blow dry anything else.
Like jc, I'm still shedding at the 5 weeks PFC mark, and know it can continue so I'm ready for that. But I wash daily (I can't stand dirty hair - it was the worst part of treatment for me) I don't blow dry yet but just washing is good enough for now. I'm definitely thinner in the hair department but pretty much only I can tell.
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Sounds like everyone has good news this week.
Portland, I'm glad you found some more helpers. I was worried when you said you were going to try it yourself. Your first couple of cap changes will be hectic, but then you'll get the hang of it and things will settle down. Just make sure your helpers watch the video before you start if they haven't practiced beforehand.
Curly, so glad you're almost finished. Your hair must not be in as bad shape as you think. Although you know it's thinned so much, it sounds like others can't tell. So glad you got compliments, it must have picked up your spirits. l
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Cold caps arrived today and picked up the dry ice! That's a relief - now for the fun parts..
Can I leave the dry ice in the coolers overnight in my garage? I don't get picked up until 11:30 tomorrow morning so plan to pack them in the morning.
Thanks to each of your for your help and support! Onward!!!
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Ahhhh. I am wearing my last cap and my helpers are on their way home. This morning my stomach was all quesey and I knew it was anxiety. Everything went just fine. Nurses were helpful. Cap process was easy. Some questions and curious stares but not quite the freak show I had feared. No one mafee feel awkward. We were lucky and got the large corner room. I had to wait a while to get a room and worried that the caps would get too cold but they were perfect.
The only issue I had is that the bands were often not cold enough and my hair would get stuck in the Velcro when removing the caps. My helper said she things or gets caught while we are putting it on.
The nurse said my lips were blue at one point, I think the strap was too tight. She checked my fingernails and they were fine.
The caps really were not uncomfortable.0 -
Portland, so glad you'll have help. Take the Ativan, and the day will fly by because you're always prepping or changing caps. I took a Xanax each time and just felt relaxed, not really loopy. I echo the others' advice to stand firm if you get any challenges from the staff...you're paying them a lot if money to be their patient and you can easily take your business elsewhere. We were nice but firm about our needs with timing the first day and after that, the nurses just rolled with it... Never got excited that it worked,but they tolerated it. Another tip I have for you is foe the moleskin, just trim about 1/4" off the backing and stick it on...works great and much less painful to remove. Drink LOTS of water tomorrow...aim for 8 oz or more per hour, get up during the night to drink a couple of times...you want to flush the drugs out quickly...they do all their damage fast during the infusion.
Post chemo, I have had 1/2" gentle trims each month, just about due for my 3rd. I think I'll stick to this pace until 6 months as I'm still shedding a bit. And no color for now, luckily just dark roots not gray, rocking the ombré look
. I wash it 2x a week, blow dry to damp on a cool setting and put itin Velcro rollers to dry the rest...if I don't, it's hopelessly flat and limp. I also admit to using a little hairspray to keep it in shape...maybe bending the rules, but I took each step slowly to be sure it didn't cause major shedding.
YAY Curly for gettibg to the finish line! And so happy to hear the big shed isn't as noticeable as you thought it may be...Shipsgirl, you're right behind her! I saw my MO this week and as always he marveled over my 'full head of hair" LOL...said it was a real teachable moment for him. And he said "on Taxols, everyone loses their hair " and hes amazed. so I think whatever we keep, thin, scraggly, dry...it's a victory. Hang in there, cappers!0 -
Yay Marsha you got through it!
Go Portland, we are with you tomorrow.
Curly and shipsgirl-almost done-woohoo!
Good luck ladies!0 -
Start my first treatment tomorrow. Have my 2 coolers with 80 pounds of dry ice in my basement. Fingers crosses this all goes smoothly. I feel so tired and exhausted already.
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Good luck Annie- and please get some sleep!!!
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We're rooting for you Annie - the first treatment is always the most hectic with the caps... but everyone usually gets the hang of things pretty quickly and they smooth right on out.
portland - glad you got a driver - that rocks... now you can just focus on hiccup-free infusions and cappings.
marsha - glad everything went well and the caps were not painful - although your blue lips must have been a sight to see:)
hortense, susieq, patin and hope - thanks for the trimming tips... now if i can just make it through with something to trim i'll be ahead of the game
Thank you all so much for sharing,
Kay
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curly - whooooo hoooooooo! you're wrapping this thing up ... and with hair! like you i've thinned so much and i'm wondering if i'll have any at all after the third treatment. here's hoping i follow in your footsteps.
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Hey Annie, it's both of us virgins tomorrow! Wishing us both luck with this - seems overwhelming doesn't it? But we can do it!!! Look forward to hearing your report. Hope it goes smoothly for you!!!
Thanks to the rest of you for your continued advice - especially Hope re Ativan, water and moleskin. All advice is well taken and appreciated. See you on the other side of Day 1!
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Hi everyone-
I have made it through my first whole cycle of treatment with the cold caps. I washed my hair after my day 1 infusion...pretty uneventful but I am dreading washing my hair after this day 8 infusion:( any tips for hair washing on what works best with the least amount of anxiety?? I have short curly hair by the way. And when should I start to see my first shedding?? Thanks ladies!!0 -
For those of you starting tomorrow, please be sure to also take 2 Tylenol about 20 minutes before putting on your first cap. My onco nurse, who was very experienced with cold cappers, suggested taking 1 Tylenol plus 1 Advil as she said it seemed to help many women better than 2 Tylenol pills.
Also, be sure to ice your nails during Taxotere, if you are getting it. Crushed ice in ziploc bags works well, so do frozen peas in bags. Put the closed bags over your toes and under your feet if you can, and dip your fingers directly into the crushed ice up to the first joint. This is to protect your nails from damage and also possible neuropathy - nerve damage. It worked for me. I definitely felt a bit of tingling in the tips of two fingers and a toe after my first Taxotere infussion, but it went away quickly. My surgeon has been so impressed that I did not have any damage, that my hands and nails are fine.
I have seen what damage it can do if you don't ice, and you definitely want to avoid it.
Good luck ladies!
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Curly - I looked at my notes and they helped me remember that at my 3rd treatment I too worried that I would have no hair as mine had thinned also, but I did keep it. My notes say: "My ponytail is pretty sparse. I wonder if I have lost 40% overall? But, I still have hair. Amazing!"
In fact I probably lost about 30 - 35% in volume. I had a lot of breakage of my bleached hair which also made my hair look thinner. Once chemo was over and I could wash with Nioxin to get out all the residue and buildup that was left in my hair from months of not being able to wash thoroughly, my hair looked conspicuously thicker and had much more volume. Your's will too.
My avatar was taken about a month after chemo ended, so you can see that I still had lots of hair. You can also see that it is thinner as it gets longer due to that breakage. I have shortened it a few inches since then.
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Thanks, Hortense - just went a filled up some ziploc bags with crushed ice. Boy, am I going to be cold!
How do you all cope with so much cold? Do you drink tea or something warm? I will have an electric blanket but this does seem a lot of freezing stuff on my body. Oh well.. here we go!
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The cold is the worst for sure during the Taxotere. I iced toes/fingers 15 min pre and post tax, plus the hour of infusion for it, so about 1.5 hours total - yep, pretty miserable during this 1.5 hours. However I just kept thinking how I didn't want my nails to lift and fall off - doesn't happen to everyone, but for those that do, it isn't a pleasant thing to go through. THAT kept me motivated - just kept telling myself it was only an hour and a half, lol! And yep, did the heating blanket. I did not drink something warm...in fact...I chewed on crushed ice during Tax, too. Kept me from getting mouth sores. I didn't do it as much on the first round and developed the beginnings of sores after my first round. That motivated me to chew on ice subsequent rounds.
You don't have to do all this extra icing. It depends on how much you hate being cold, and how much you want extra "insurance" of avoiding these other side effects. It would not be worth it to some women to ice as much as I did. But it was worth it to me.
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P.S. I did pull my fingers and toes out whenever they got too cold for a few minutes at a time to let them warm up some. You can't do solid 1.5 hours on ice like that = frostbite! Use good judgement. My fingernails hurt only for about 2 or 3 days after my last treatment...was painful even to type...I was really glad I had iced all along - who knows how bad my nails would have been without it.
Note - some women never ice nails and never have issues. You just don't know what side effects you will end up with - no way to predict.
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I just finished getting my Herceptin (#14, 3 more to go!) and stopped in to say hello to a young woman in the cold cap room. She had finished getting her first treatment and was doing her post-treatment capping. I told her about this discussion board; didn't get her name, but if she is reading this, welcome!
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Portland - I wore a ridiculous amount of layers of warm clothing to keep warm, plus I used an electric blanket. Have someone pre-warm the blanket before you wrap up in it. Turn it on and let it warm up so it is already warm when you need it.
For clothing, I wore two sets of long underwear bottoms, then a loose exercise/sweat pant - you might use two pairs of sweatpants instead of adding long underwear. On top I wore a long sleeved thermal shirt, then a long sleeve t-shirt, a cotton cable knit turtleneck sweater, and a zip up fleece jacket. I also put a polartec scarf around my neck. I felt silly as I dressed in the hospital's bathroom just before doing my premeds, but it was worth it. No socks. That way I could put my feet directly on the frozen gel packs I used during Taxotere and lay gel packs over my toes. Bags of ice would work as well. If the ice gets too cold on your feet, perhaps put a thin towel between the bags and your skin. The center is sure to have one.
Dancetrance is exactly right. Take your fingers out every so often to warm up - like when they turn dark pink/red, then ice them again. Sometimes I would shiver through Taxotere, others not, but it's worth it. Dance was better than me in that she iced longer. I only iced exactly during Taxotere. And, YES, suck on ice or sip ice water during Taxotere to ward off mouth sores.
Some women on the chemo thread had suggested sucking on popsicles, but when I did the sugar made me nauseous and I got spectacularly sick. I limited myself to ice after that and had no more problems.
Good luck honey!
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if there is frost on the outside of the cap while you are wearing it are you supposed to towel dry it off?
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Don't worry about the outside, I don't think that matters. It's the inside that needs wiping dry before being put on.
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I had 6 rounds of TCH, and did not ice my fingers or toes, and my nails were fine. I did not chew on ice either, and although I never developed mouth sores, my taste was really thrown off, and I hated that. Maybe chewing ice would have helped.
I was never all that cold either. My center kept blankets in a heated enclosure, and my helpers brought me warm ones every so often.
Good luck to all!
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