Cold Caps Users Past and Present, to Save Hair
Comments
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TC- nevermind - I see it is available at drugstore.com
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Hi all~
3 years ago today was my last chemo and I shipped the Penguin Cold Caps back!
It does seem to have gone by in a blur.
Keep your heads up Penguinistas!
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Thanks everyone!!!! Very helpful, I think I finally got the basic concept in my head!
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I am nearly 5wks into weekly taxol treatments and just started having some pain along my roots, mostly along my part, it feels like that feeling of having worn a pony tail too long ( though I haven't pulled my hair back at all). My last treatment was 5 days ago. I am changing my part with each cap change. Someone please tell me this doesn't mean all my hair is about to fall out!
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I remember having that feeling, and sometimes tingling. I think most of us felt it.
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Thank you...I was just starting to relax and feel comfortable that the caps are working
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I had that feeling too....still have hair. Don't freak out. It is totally normal!
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KCD - I had the tingling after the first chemo bigtime, then a bit after the second but none after.
When the tingling started after the first chemo I just sat there staring into space - I didn't have the heart to tell my husband the caps didn't work and I KNEW the tingling meant they hadn't.
So glad I was WRONG. I'm not sure what the tingling signifies -- maybe that out heads are unused to being plunged into a negative degree situation and adapt to the shock over time? But it does NOT mean you are going to lose your hair - I know it is hard, but try to relax. The caps work.
I'm two months PFC, my hair still aches from time to time in different areas and I am shedding a bunch. I cannot determine a correlation between the aching and the shedding. I run my fingers through the aching areas (I know, I know!) and get the same amount or less hair than if I do the same thing in the same area on the other side of my head.
For me, everything about BC from diagnosis to date has felt unreal -- the hair thing is just one more unreal thing.0 -
dancetrancer-the headbands are worth the extra expense, unless you have a small head. The headbands cover the gap at the temple areas, as well as to add extra cold at the nape of the neck. The part of the cap that covers the nape doesn't have as much gel inside and heats up sooner than the rest of the cap areas.0
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Oh, I hope I did not make a mistake by not getting them. Geralyn said they were for eyebrows but never mentioned they could be used as extra cap straps and I never thought about it. I passed on them thinking I would not be able to tolerate any more cold - HA!
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Hello all! The place I am looking at for my dry ice has this on their website:
Dry ice gives off CO2 into the air, so if dry ice has been in a closed car, van, or room for more than 10 minutes, open the doors and windows before entering. Otherwise, you will experience difficulty breathing. Leave the area immediately if you start to breathe quickly or have any difficulty breathing.
Have any of you had any issues with fumes coming off the coolers when you open them in the infusion room/other patients or staff getting upset? Not sure what to expect.
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No issues with fumes in the infusion room, but once or twice we have gotten back into the car and noticed the off gas
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dancetrancer...My husband was told it is only an issue if the ice is out in the open. We take our coolers with us when we get the ice. Never an issue for us --and unfortunately it is more than 20 miles each way. When we get it home he breaks it down into zip lock gallon freezer bags- a tip from Susan I think. We have had no issues with fumes at all. And the cooler is only being open a couple seconds at a time. Oh and if you put the ice in freezer bags, leave them half way open so the the gas can't escape the bag. I should also mention we got pellets, if you get slabs, you would not use bags.0
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Brax, thanks. My instructions say to get 12" square slabs...I was wondering how the heck that would fit in a gallon zip lock bag (as advised in the instructions). I've got an email into Geralynn. Perhaps she'll say it's ok to do pellets. We'll see!
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Before I started, I saw that people on this thread had used both. The Airgas where we go any has pellets and we have to order them a week in advance.
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Hi Ladies! Sitting in tx#7 today. Finished chemo and almost done with the post-chemo freeze. My infusion nurse told me she was very impressed that I've retained as much of my hair as I did. I really appreciated her saying that. Pretty much when I started, none of the nurses thought it would work. And I go to an onc and infusion center that supports the use of cold caps. They have the caps and a freezers here on site. I'm on AC&T and I guess they never saw anyone on my regimen have success with the caps. So I'm happy to be the reason why now they can't discourage people getting AC&T to do the caps (in my onc's defense, he did not discourage me, he just said it probably won't work as well). Put it in the record books!
Only one more infusion to go. I can't wait to be able to write PFC in my posts.
Dancetrancer & DeesDaughter: welcome to the thread and I'm glad you decided to use the caps. My advice to you is to approach your treatment one tx at a time. The first time will be overwhelming and you may think how am I going to do this for 4, 6, or 8 times. But you need to get through it one treatment at a time. It gets easier as you go along and before you know it you see the light at the end of the tunnel. And ofcourse, follow the protocol (which all the ladies on hear have explained so well) and you will do fine. Also, in my opinion the gel bands are worth the money. It gives you extra coverage where the cap doesn't. I used them and I have no bald spots and didn't lose hair at the nape neck and around ears.
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Susan,
I've been off-line for a while - my first vacation since bc - and it was by far my best - ever! Congrats to you for the 2 year milestone - and Thanks for your guidance and inspiration. You've helped me more than you can imagine.
p.s. the shedding has nearly stopped - 11 weeks PFC - I would say I lost about 30% of my hair - but no bald spots - and it's growing back - just like you said. Thanks for talking me down - to you and all those who took the time to respond to my shedding hysteria!
Lucky
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Even though I used the Elasto-Gel cold caps for each and every treatment (and I had Taxol), I kept my hair but did have the tingling and scalp sensitivity a month in. I was terrified it meant my hair was going to fall out anyway and bought an extra wig, but...although I did shed a bit more, I still have my hair. I think in part the hair loss is due to my Zoladex implant and the sudden loss of estrogen.
I finished 18 weekly treatments on January 6, and now have my brows and lashes back! They are not quite the same but they're back nevertheless! I've never been so happy to use mascara ; )
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Hi Ladies,
I just wanted to let the women know who are considering using cold caps that they should make sure to ask their Onc Doc if it is okay with them. I had asked the NP that works with my doc and she said she has had patients use them. I made the mistake of assuming that it would be okay with the doc. I ordered the caps and all the stuff needed, and then just 'double-checked' with the doc, and she said 'NO'. I was crushed at first, but listened to her rationale and decided to go ahead without them. I did not want to delay chemo any longer and did not want to switch docs (she is highly regarded at a premier institution and is a fabulous doc). I know some women would have switched docs, but in my case I felt I had to go forward. If it is really important for you to use them, make sure you ask about them on your first visit so you can make your decisions wisely. I hope you all are able to keep your hair!!!!
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Hi Slak. Thanks for the update. I'm sorry it's not going to work out for you in terms of using the caps. I agree that Onc needs to be on board in order to use the caps. Would you mind sharing what her rationale was? And yes, in my case I would have switched Oncs, because saving my hair is extremely important to me and has played a key role in me staying sane through this whole thing. But as we all know, our medical care and being cured of this disease is the most important thing!
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slak, that is a very good point. I wrote up a letter to my doc about them and printed out copies of studies, etc. and dropped it off at his office, asking if he would approve it. I did not order the caps until I received the go-ahead from him. I'm so sorry you had the expense for this and then can't use them!!! I do understand why you proceeded with chemo, though - I wouldn't want to switch docs or delay treatment any further either, even at the cost of my hair.
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Hi all - I haven't gotten up to the Whole Foods store yet, but I checked my local organic store and found this brand. It is paraben free, sulfate free and "fortifies damaged hair". What do you think? BTW, we do not have a Trader Joe's here.
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Hi Victorious2012,
My Onc was insistent that the chemo get everywhere. She wants no area for a breast cell to hide to pop up later. Unfortunately there isn't data for randomized controlled trials in the literature for the effect of caps on mortality, and she knew that I wanted to give myself the best odds of cure. I struggled with this, because the data that is there suggests the chance of a cell hiding in the scalp is probably very remote. I am not a vain person, but I didn't want everyone seeing me as a cancer patient and I was scared of permanent alopecia. My doc said she was part of the original trials of Taxotere and has treated over 1000 patients and has not had one go bald pernanently. In terms of decision making, my position was worse because my oncotype score was in the low recurrence range (14). When TailorRx comes out, it may show that chemo has no effect at that score, or it may show that there is 3% reduction in recurrence. I hate to think I tortured myself for nothing, but I have young kids and I made the tough choice to give myself the best odds. But I flipped-flopped so many times that I understand that everyone is different and deserves to choose what they think is best for them. I just was really hoping my doc was going to be okay with the caps, but I understood her rationale. I think it will all hit me in two weeks when my hair starts to fall out...
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Slak, very tough call that you had to make. Sounds like you may have had your first treatment already. So good luck and please stay in touch with us. I wish your Onc was a little more flexible about it so that it could have been your choice. Do you know if her views reflect the entire practice or would other Oncs there approve. Needless to say, the ladies on this thread do not share her opinion.
Dancetrancer: I have used the Nature's Gates hair products before and they are good products. They sell it at Whole Foods. I haven't used that specific shampoo but I'm sure it's fine.
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One thing I wanted to mention to everyone here, I live in the Boston area and would be happy to loan anyone in the area the coolers (we bought 3) and an infrared thermometer (never used!). I also have cooling gloves (like the caps) to reduce the fingernail issue (and maybe the peripheral neuropathy of the hands). I bought two pair. I would be honored to help someone else out by loaning these items. Please PM me if you'd like to borrow them.
Victorious2012, I believe other docs at the practice allow the caps, but I don't know the %. I also think there are different views depending on whether the treatment is for 'cure' versus metatastic control (where the scalp mets are not the major problem). Good luck to everyone...I hope you all keep your hair!
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Thanks Victorious for the feedback on the shampoo!
slak, aren't you wonderful to offer to loan your equipment? You are a good soul. Best wishes to you and just remember although of course we all would love to save our hair, not all patients are able to afford it, have docs that approve it, or will necessarily have 100% success...and in the end, we are so much more than our hair. I wish you all the best!
FYI to all who might be in the process of having your shipping done...check and recheck and recheck AGAIN the delivery date for your cold caps. Fed Ex told me they'd be delivered today, but I now see they have been delayed to Thursday arrival, Monday at worst (I used Fed Ex ground). I called and had a big complaint session with them, and the girl apologized for me being given the wrong information. She said I should never have been told they'd be delivered today. They (and I) are lucky that my chemo probably won't be started until next week. I get the port this Friday.
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Thank you ladies for reasuring me, the pain has receded, I was extra careful with changing my part at todays treatment, in case I was feeling a bit of frostbite.
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Haven't been here in a long time. Wow, look at all the new ladies. I used the ElastoGels(brand new) and finished chemo last June. Whichever caps you select (most use the PCCs), stick with it. It is worth it. I had my third haircut last week and keeping it short for now. The stylist said she had to thin my hair (she didn't know about the bc until I told her). One of the girls in the office (who doesn't know I went through BC) was so complimentary on my haircut and commented over and over about the massively thick hair I have. Made me feel so good. Whatever your choice, stick with it. I was one of those who had a bit of a commute to treatments and picked up my dry ice the morning of treatment and had to spend a few hours cooling down those caps. Amazing how quickly time flies. Good luck everyone.
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First treatment went well with cold caps. First cap was COLD, but I didn't find it unbearable. it did give me a headache and the 2nd cap seemed colder. By the third cap, I was pretty numb and didn't feel any cold. I asked my husband if the freezer was working :-) and if he knew how to use the thermometer :-)
It wasn't until we finished up at home for the remaining four hours that I started feeling the cold again...I had a lot of anxiety and just wanted to share my experience and hopefully it will help anyone using them coming up :-)
So far, I am just tired....no other side effects from chemo. Now the waiting game to see if I saved my hair.0 -
Hi Victorious - I am so happy I got the extra gel bands. they really do fill in where the cap doesn't cover. I think most people have larger heads than the cap can accommodate. It didn't cover the back and the band fit in at the back and made the sides much colder. keeping my fingers crossed that we did this right.....seems so easy on video to get them tight....much harder in person, but my husband was a trooper and got it down to a science. One treatment down 3 to go. Summer here I come :-)
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