Cold Caps Users Past and Present, to Save Hair
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Good luck! I am sure you will do a great job.
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301724 - we are behind you all the way so best of luck!
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301724 best of luck! I know there will be nay sayers......stomp on them! PCC's were so good for me emotionally!!! Most doc's don't care about treating the whole person....just the cancer.
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301724, Good luck!
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301724 - we're all supporting you! Go get 'em!!
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Go get 'em, 301724...we'll all be there with you in spirit!
An update...I am now 19 days past my first tx and while the shedding has definitely started, I am remaining calm
. Today I saw my MO (who I love), and he said "wow, you still have your hair...what's up- you did go to treatment, right?". I reminded him I am doing the caps...he took off his glasses, gave me a closer look, broke into a big smile and said, "I'm very impressed, that's great!". He said at this point his patients have either very short or no hair. I floated out of the office feeling even more positive it's working!
The other thing that's been a huge motivator for me is that I have started reading this board from page 1. I'm about 60 pages into it now, and can I see the evolution of each poster as they pass through the 'panic' stage and then a few pages later they are done with tx and encouraging a newbie back off the ledge. Seems like everyone goes through it, and that makes me believe I will be a success, too!0 -
hope49 - You will definitely be a success. And, congratulations on surprising your doctor!
Everyone goes through several doubt stages as they wonder, first, if all of their hair will fall out, and second how much will be left after shedding. The sense of wonder and guarded delight as we each realize that our hair truly is still there long after those who didn't use cold caps have lost all of theirs is heady - to use a pun. It's quickly followed by nagging worries that the shedding, which will have started in earnest by then, will take it all, or to some large degree.
Shedding can be nerve-wracking, especially when you have hair trailing off of you all day long. However you will not lose all of your hair and what falls out comes evenly from all over your head, not from any one spot. You may notice a thinning of overall volume, but chances are that most others won't.
It also may look like you have less volume because you will not be able to wash and care for your hair as you ordinarily would so that it lies flatter and looks lifeless. That will change once you are able to start washing it more often again. I was surprised and happy to find I had more hair than I thought after I was able to get my scalp and hair thoroughly clean post chemo and finally blow it dry. I bought an inexpensive hair dryer that also had a cool air setting at Target after reading about it on this thread. I used the warm setting on the ends to style it and cool air at the roots. It made such a nice difference.
Have faith that you will be fine, because you will be!
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hope49, so happy for you - what a great reaction from your onc! And very good analysis of the process it seems all newbies go through - panic, panic,...Whew!...mentor next newbie.
301724, Good luck! Thank you so much for doing this!
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301724, thank you and good luck....!! I have spent my whole adult life working with doctors and nurses ... I am always amazed at the sometimes archaic narrow-mindedness but also equally amazed at the compassion and innovation... Here's to tackling the first and seeing the second at your talk! Best, Lisa
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Hi all - thanks for your good wishes. Here's an update on the talk...
There were about 20 physicians and nurses at the meeting. My BS introduced me as both a researcher and a consumer. The objectives for the talk were to: 1) discuss the issues related to chemotherapy-induced alopecia (hair loss), 2) describe the evidence of effectiveness of cold caps, and 3) to discuss potential next steps using scalp cooling at my institution.
I spoke for about 25-30 minutes and began by saying that my goal was to begin the conversation about scalp cooling at the institution. I presented the evidence on permanent hair loss as well as the info on the negative aspects of hair loss. I talked about the scientific studies on scalp cooling and the issue of potential long-term adverse consequences (i.e.scalp mets). I ended with recommending that the institution consider:
• informing all women planning chemo of the potential for hair loss to be permanent
• informing that group of the option of using scalp cooling
• actively support the use of scalp cooling
• consider obtaining a freezer
• consider participating in a clinical trial
There were lots of questions but nothing hostile....more questioning of what the evidence shows and doesn't show. At the end of the session, the group agreed to: 1) consider getting a freezer from the Rapunzel foundation and 2) talk with the leaders of the current clinical trials going on (UCSF and Wake Forest University) to consider participating.
My BS said the talk was 'perfect - just the right balance of science and personal.' My MO said it was 'just right'. My breast care coordinator (navigator) and PT were quite pleased. I felt good about how it went. So - fingers crossed that this actually starts the conversation. I've offered to present the info to any others who might be interested. And - I've been asked to join their new patient advisory board (another idea I suggested to my navigator a few months back....)
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Pei, I used the cold cap with 4 AC and 4 T. My hair thinned alot and I had a couple of bald spots halfway through, but they filled in and you can see a pic of me 1 month post-chemo here:
http://chemoforbeginners.com/2012/11/20/keeping-hair-cold-capping/
I hope you have success with the cap and don't find ACT too bad. I likened it to a bad hangover and it wasn't nearly as bad as I'd expected.
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Hey Ladies,
Well, I'm finished with TC cocktail number 2, and am sitting in my my livingroomwith a cold cap on my head. 1 1/2 hours left to go. I'm SO ready for them to come off. This has been a really long afternoon and I'm exhausted. The steroid pills that I take (can't remember the name of them) the day before, the day of and the day after keep me up at night and last night I spent most of the night walking around and doing little odds and ends even though I was so tired my eyes were burning. Sigh.
Anyway, all in all it's been ok. My best friend from Cape Cod flew in yesterday to keep me company for the week so it's been greast having her here. She joined us for chemo and that made it nice for me, and nice for my husband b/c she kept the stopwatch while he did the caps. So all in all it's been good. But now.... I'm ready for it to be over. LOL
Hope y'all have had a great day!
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301724, Way to go! Sounds like a great success, think about all those you will have helped in the future. The patient advisory board sounds very interesting, I'd love to do something like that...well, someday, first things first gotta get thru chemo.
tomorrow, I'll be halfway there. Thanks again for leading the charge!0 -
301724,
I'm so proud of you for giving informative data and having the nerve to get up there in front of skeptics. I hope that this is the beginning of something big and an option for all who have to under go treatment.0 -
Dear Amrdbit,
I felt that exact same way when I came home from my first treatment. I also have to have Herceptin, but that does not count towards the time required for the cold caps, but all-in-all, it was a very long day. My next treatment is the 14th and I have been told that it won't be as long because I got loading doses the first time. I don't know about you, but I was there almost six hours and it flew by because it was all new to me. I'm afraid the next time I'll know what to expect and I'm dreading it, but I look at it as one down and five to go. We ca do this!
Oh, I remember how you said your hair got tangled in the Velcro scrapes, so I'm hoping it was better for you this time around. I got a wig cap (it's just a nylon stalking) and it was recommended from the UCSF study so that is what I used to put over the moleskin and pads that were on my ears. The cold caps can be hard, but if we get to keep our hair I know we will recommend them to others.
Wishing you well and a speedy recovery,
Rhonda0 -
Rhonda, I had 6 treatments (used a freezer so stayed at the center for the 4 hours after) and still felt as though they all flew by. The caps are a great diversion.
301724, Sounds like you gave a stellar performance, way to go!
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301724 - Congratulations! Pulling the materials together for your presentation and delivering it in a understandable, persuasive and nonconfrontational manner is a lot to be proud of. Thirty minutes is a long time to speak and to answer questions, especially to medical professionals. Good for you!
I particuarly liked your suggestions for changes to be implimented. They make a lot of sense from a patient's point of view. No one told me that hair loss might be permanent, yet I have met women who's hair is very skimpy years after chemo. That, to me, is a very serious side effect, and one that ought to be mentioned.
I hope that your hospital will ultimately decide to start telling people about scalp cooling and get a freezer as a result of your effort. Patients deserve options.
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Hi mishyp, makingway and skibunny- thanks for your responses. I am still contemplating my options but your words are def helpful. And Skibunny- awesome blog and you look amazing
Pei
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301724-Way to go!!! You are such an inspiration. I hope to give the same type of presentation at hospitals near where I live. Forward me the ppt if you can~Thanks, from all of us who don't believe we have to go bald to treat cancer.
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Do any of you feel that or even worry that those who do know you're having chemo but dont necessarily realise/know you're using cold caps maybe under-appreciate what you are actually going through? After all, keeping our hair doesn't reduce the other side-effects and I think that some people believe that we're not doing 'proper' chemo or the cancer 'couldn't have been that bad'. Maybe it's just me being crazy but I wonder these things. Don't get me wrong, I don't want people overdoing the pity and concern but I think that because we don't look like most cancer patients, they forget that this really is SHIT!
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michelle - yes, I had those exact same thoughts! But my joy at having my hair overshadowed anyone else who might minimize my pain/experience from chemo. They can suck it. ha ha ha
301724 - you definitely are an inspiration. Would you be willing to share your power point? I might take this on as a project myself.
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I agree Michelle. People think "well she looks OK so it must not be that bad". It IS still chemo and that is crappy! I guess though because of having our hair we appear more "normal" and confident and healthy. I guess I am OK with that....
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Happy Friday, fellow Penguins!
Survived round 2 yesterday and was so happy to get into some warm and cozy clothes last night after a very long day. My team (hubby and sis) did a great job capping me on our own. I added the gel straps so we'll see if that helps with the nape/ear area. Traffic and weather were on our side after treatment so we did not have to make a roadside change last night, when it was only in the single digits here - not that I would notice since I shivered all day anyway! I did get a bit of frost nip right at the widow's peak, and gently dabbing that small area with pure aloe juice today and am thinking I may need to put a bit of gauze there...any suggestions? It's a little tender but no longer red and feels kind of numbish. I hope I don't end up with a bald spot there, but I guess I can just do a creative part and comb it over until it grows back LOL
Rhonda, I agree that tx2 seemed to go by more quickly for me, too. My originally skeptical nurses were so nice yesterday not a sigh when we needed their help to ensure the timing of the drug/3rd cap was just right. I think, however, that i messed up my finger and toe icing because last time the Taxotere was 2nd and so I assumed that's the standard order...when the 2nd drug was connected she told me 1/2 hour and I was happy to only have to ice a shorter time...I thought maybe they had slowed the drug the first time in case of interaction but when I checked my notes at home it did say the Tax was only 1/2 hour. So hopefully the ice still helped at the point I did it - next time, I'll be sure to ask what they are hooking up!
Still in shedding mode but trying to keep my cool and looking forward to my next washing on Sunday! I think I'll try to slap on a few caps this weekend to keep things to a minimum.
Have a great weekend everyone!
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Hello!
Just wondering (too late for me as had chemo a year ago - but am a big advocate of the cold cap and tell everyone about it over here!) - what is the moleskin that you all seem to use on the other side of the pond? We just wet our hair with water, lather it in conditioner and stick the cap on...you seem to have all sorts of exciting things that you use with it!
x
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Hope,
So glad to hear that you had a successful day with the caps. I use Dr. Scholl's Thick Mole Skin around my forehead and down to my ears, about 1/8 inch away from the hairline. I felt like my forehead took the brunt of the cold, but after a few days I was fine. I don't have much shedding, but I'm only on day 8 from my first use of them. I got treatment on Thursday and washed my hair on Sunday. I have not washed it since Sunday. I know that sounds gross, but my hair was oily only the first few days and then back to dry. I think I will try to wash it only once a week. I'll keep you posted on the shedding.
Skibunny,
How interesting that you wet your hair and then wear the caps. It seems like that would make it unbearably cold?? I looked at your blog and your hair looks good so I know it works that way, just never would have thought to wet it first. In my instructions, they did not say to wet it first so I'm hoping that I'm not doing it wrong? Yikes!!
Blessings,
Rhonda0 -
Rhonda, Yeah - that's the instructions over here whether you use one of the plug-in caps or whether you have the ones in the freezer that you change frequently. It is VERY cold! But I guess that's the aim. I was just interested in how differently we do things! We're also not meant to wash it for 24-48 hours so you have dried conditioner on your hair (which makes it look really greasy...but smell OK!) for a couple of days...
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I use Kenra spray and leave-in conditioner. It works pretty well and I guess I'm fortunate, my hair doesn't have a bad odor, at least to me. My DH has not said anything so I guess it's ok.
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for some of the seasoned cap users....how effective is wearing caps out of your home freezer in between chemo sessions? I used to do it after rounds 1-3 but to be honest, I am so sick of them now that i'm between round 4 & 5 I can't even bring myself to wearing it.
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ndmk - Don't feel bad. I brought home a few caps after my first session and put them in my freezer intending to use them, but I couldn't bring myself to even touch them, much less use them. I returned them to the center's freezer when I went for my second infusion. I admire those who do use cold caps between sessions, but I could not.
michellej19 - I agree with you. I have noticed that some people don't think I have had chemo because I still have hair. Some have done double-takes when I mention I just had it, glancing at my hair as they try to figure it out without saying anything. I generally explain that I used cold caps to keep my hair and tell them how they work. Most are quite interested, others look frankly skeptical. Several have told me I must have had a light dose or weak type because their - mother, sister, friend - lost all of her hair during chemo.
The person who really has irritated me the most is my own cousin who's twice said, "I don't understand why you had to go through all that chemo and radiation if your lump was only the size of a jelly bean." I finally told her, "It wasn't all that big - yet, but it was doing its best to kill me."
Is there a pill for stupid yet?
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To all who would like a copy of my slides, please PM me with your e-mail address.
A couple of caveats:
* I am taking my name and credentials off the slides so you may use them.
* I am removing the photos I have of other women. They have all given me permission to use their photos but I do not believe that permission extends beyond my use for educational purposes.
* I am removing my own photos - you should substitute some of yours.
* Importantly - the language in these slides includes 'medical jargon.' It was appropriate for my talk both because I was speaking to professionals and because I am a health care professional researcher myself. If you are one, too, then this would be appropriate for you. If you are not, use language that makes sense for you. For example, instead of titling the talk, "Scalp Hypothermia: An Option for Preventing Chemotherapy-related Alopecia in Breast Cancer Treatment", you might title your talk, "Cold Caps: An Option for Preventing Chemotherapy-related Hair Loss in Breast Cancer Treatment." And consider your audience. I wouldn't use 'medical jargon' if I was talking to a group of women facing chemo who are considering the use of cold caps or to another lay group.
* BTW - there are presentation notes and suggestions in the 'notes' section.
I think that's pretty much it. I hope for all of us to have opportunities to share our success stories in a way that brings hope and options to those who (unfortunately) come after us and that convinces health care professionals and institutions that we have a right to those options.
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