Cold Caps Users Past and Present, to Save Hair
Comments
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That's great, Brax! I definitely like not having to undergo the cap changes but I would undergo them if I needed to. I haven't seen much shedding yet but I am keeping an eye out for it.0
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Hey all,
Are you all doing anything to try to save your eyelashes and eyebrows, or is that a lost cause?
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Just a couple of comments...I was persistent in keeping ice on my tongue and mouth during chemo and had only a little taste change for a couple of weeks. I did not have to adjust my diet at all. Continued eating what sounded good...including Mexican food!
Last night we went to a performance and I ran into the nursing supervisor at the infusion clinic who had made my chemo experience much more stressful. I was surprised to see her but we recognized her immediately.
I finished chemo 11 months ago. This nursing supervisor had been quite rude about insisting that we could only have one person be with me. When I tried to explain that to do the cold caps and be fed ice and keep ice on hands and feet we needed at least two helpers, she held up one finger and thrust it in my face and said very firmly, "I said ONE PERSON!" No smile. No compassion. So we had to start the cold caps with only my husband. Then when we started doing the caps they told us they could not wait for 50 minutes before beginning the chemo and I'd have to come back another day. We had to get my doctor involved and the nursing director of the hospital to get around this woman's harsh attitude. Eventually we got the caps done that day despite her.
So last night we were standing right next to each other after the show. I finished chemo 11 months ago but she remembered us, too. (I was the first to do cold caps.) We had an interesting discussion and I was able to show her my long, full head of hair and that CCs work. I pleaded with her to start helping and encouraging girls who do the cold caps instead of making it more difficult for them. I was honest with her and told her that she added to my fear and stress on the day of chemo. And reminded her that nurses can decrease the fear and stress of the day or add to it. Her response was that they "have to make the room available to all" (whatever that means.) She was nicer and said my hair looked great.
I told her that the oncologist is referring others to me and that I'm telling everyone. Five others have done PCC after me. The one finishing now had the same problem I did. But LadyGrey was so wise to precede her treatment with a letter outlining her expectations. She did not have a problem. That trial lawyer training came in handy! Also she started wearing the caps in the waiting room and they brought her back quickly. The rest of us have had 2-3 hour waits.
I think it is getting better now that they have had six of us. And I hope my honest conversation with the supervisor last night will help remind her that she's dealing with people not just formulating policies to make her job easier.0 -
Howard-I can imagine the look on that nurse's face-I've seen it before. The look that says, 'Big deal, so you kept your hair. I'm still justifed for discouraging you'...I hope your oncologist is aware of the nurses behavior. If not, you might want to bring it to her attention. Doctors do have a way of influencing their staff's behavior.
Susan-Congrats on your milestone! 2 years have past, hard to believe at times. I have been following this thread from page 1 when there was only a handful of people using the caps. I recall you from way back then. You are a true pioneer who has helped many women.
I am in the process of creating a webpage for PCC users to find ALL the much needed information in one place. Yes one place! I have accumulated much knowledge over the last few years helping other women with the cold caps. I have literally changed 1000's of caps! The webpage is bare bones now, but there will be links to hair care, recommended hair products, cold cap assistance and of course a link to bc.org and this invaluable forum topic. If anyone has suggestions feel free to send me a private message or email me at help@penguincoldcap.net
The webpage can be found at coldcaphelp.com
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Has anyone used the extra bands for the neckline and over ears? If so, did you find that they helped to keep the hair there? I have a call with Geralyn later this weekend to ask how they should be used, but thought I would see if anyone else used them and how you put them on. I don't see them used in the instructional video......Want to do some dry runs with hubby before call with Geralyn.
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DeesD, I used the extra gell bands and they worked great! I could tell after the first treatment that my head was too big for the caps, and ordered the bands. I will ask my daughter how we put them on, I can't remember.
makingway, That is great that you are creating a webpage for cold cap users! I'll bet you feel so good that you have helped so many women with the cap changes. I wish someone in my area needed help, because I would love to help them.
Howard, It makes me so angry whenever I hear about a center being less than accommodating. If my nurse would have behaved like that, I would have gone elsewhere for treatment. I'm glad you told her how she made you feel.
Brax, Glad they are finally cooperating!
Dance, Several used Latisse, with pretty good luck, you may find the discussion several pages back. I didn't lose lashes or brows until after chemo, but they only thinned, didn't lose them all. I wore makeup on them and you couldn't really tell that much.
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DeesDaughter-The headbands are necessary on most people. The band covers the gap at the temple area while also providing more cold at the nape the neck. I have a photo of how I placed it, but it's a huge photo and I can't resize it becuase I lost my imaging editor. If you'd like I could send you the photo. Send me your email addy in a private message.
Laura- I do like helping others
I am bound and determined that doctors share this info. with their patients, so that they may have a choice. Find a BC Support Group at your local hospital or classes for newly diagnosed patients and share what you know with other people. Private message me with your contact info. I am going to create a page for people to find helpers in every state! 0 -
Makingway, that is such a wonderful idea to help people network!!!
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I thought so! If you can think of any important things to add, let me know.
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Howard, way to go. You are WAY nicer than I am but probably got her thinking - at least I hope so. "Make the room available to all." What does that mean? There are 82 very spread out chairs in that center with probably 10 private rooms (I'll count this week) and I have never seen more than 15 patients there. One of these days I am going to have my favorite chemo nurse again for Herceptin and I am going to find out what the deal is with the hostility to the caps and even icing. I seriuously do not understand it.
I followed up by phone on my email setting my expectations and found out that the infusion center is essentially legally unrelated to the oncology group. The infusion center is owned and managed by the hospital and the oncology group is a separately owned and managed entity. Therefore, the infusion center/chemo nurses do NOT answer to the oncologists and are under no obligation to do what they say beyond adminsitering the prescribed medication. That is why my oncologist was so pleased with the email I sent -- I could say things she could not.
Howard and I have the same oncologist and she has some clout so being a trailblazer in allowing the caps (thanks to Howard's efforts with her) was doable (I'm starting to hate that word). An oncologist lower on the totem pole might very well have gotten resistence or refusal from the chemo nurses on a trumped up "safety" basis, or, I guess, space basis.
If you are interested in the caps and your oncologist says no, I would make sure that is a medical rather than a political decision by your doctor. Remember they do not make any money off the caps so whatever grief they get over their use is non-compensated.
If your oncologist cannot give you a medical reason why you shouldn't use the caps, I suggest you vote with your feet. It may be that your oncologist is simply set in his ways and can't be bothered or that your oncologist doesn't have the political capital to spend on blazing the cold cap trail.
It sucks that politics are a factor, but that's just reality.
Brax, I am so glad to hear they changed the order for you! That is a big deal. You are going to be amazed at how much different the next one is -- believe it or not even chemo gets to be mundane.
dancetrancer, the best value I found on the paraben/sulfate free shampoo is Whole Foods store brand -- $7 for a large bottle vs the $25 I paid for a small tube at Ulta -- although that was last October and it is half full so not as bad as it sounds. Should you start taking Biotin if that is something your onc will go for? They have that at Whole Foods too. It is supposed to be good for hair and nails. I had one nail start to lift and kept it taped down with paper tape for a week and it healed so file that away.
makingway, fantastic idea! It will be a great resource for us to link.
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TLG, so any shampoo that is sulfate/paraben free is a good choice?
Do I use a conditioner? (I usually do, b/c my hair tangles otherwise...)
I appreciate the tip on Whole Foods, happen to have one about 20 minutes away!
Another question...I received another email from Geralyn today with details about my schedule. I have to say...I'm feeling overwhelmed with all the details. Plus it says once you put the 1st 30 minute cap on you MUST start chemo within 10 minutes...uhhhhh...I don't get why it has to be so exact. What if they are running late, and you don't start the chemo until 20 minutes in? What would be the difference, as long as you are still changing caps every 30 minutes? I don't want to be stressing over trying to coordinate to the minute with the nurse...as I can foresee there could be issues w/this, esp. after reading the comments here.
I can discuss all this with Geralyn Monday, but of course I figured someone here could answer my question, too.
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LadyGrey-I have also come to despise that word 'doable'.
dancetrancer- Use the time your premeds are started as the time to begin using the caps. It's less confusing that way. If your premeds are finished before the necessary 50 minutes of wearing the caps prior to the chmetherapy medication, the nurse can keep the infusion line open with saline. Wear the 1st cap 20 minutes. 2nd cap 20 minutes. 3rd cap 1/2 an hour, but 10 minutes after placing the 3rd cap on your head is when the actual chemotherapy medication can begin. The following caps are worn for 1/2 an hour.
If for whatever reason the premeds are done closer to the time when you would be ending the 3rd cap, it's better to start the actual chemo 10 minutes after wearing the 4th cap.
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dancetrancer...My hair is fine is gets very tangled when I wash it, I have continued using conditioner. Also, recommended on this thread I believe was Kenra spray leave in conditioner. It is expensive, but I got it anyway to help with the drying everyone talks about. I think I paid around $16 at Ulta. I read mixed reviews on the Latisse, and my physician will not prescribe it, she said it has to be monitored and I would have to ask the onc or go to my eye doctor. I read somewhere that there were two other options one that was recommended for use during chemo. I can't remember both names, but one was new lash (think new is spelled wrong though). There was another one I have to find, I hate when I see something noteworthy and don't write it down. It's hard to find things again. I'll keep looking, I want to purchase it also. It was also expensive $70 to $85.
Regarding the cap changes as long as it is not before ten minutes into third cap I think it is okay, but we need someone with more experience to clarify. I started later this time. Even after adding the third 20 minute cap for thick hair regimen.
Howard...I'm all about my fajitas and still eating them. I plan to keep icing, and hope to keep enjoying them.
And I forget who said something about wearing a cap in the waiting room. At the first infusion they handed me a beeper and said they would call me in an hour or so. Then my two big coolers were wheeled into the waiting room and the supervisor said what is all this? I was quickly escorted out . They wanted to accommodate me because they figured I needed more space???. My infusions are given in another unit all together, Clinical Research Unit.
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dancetrancer...I got sidetracked when responding above and saw makingway's response after I posted. She explained it much better. I was closer to the next cap so I waited.0
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Yes, that was my exact question - so as long as it is AFTER the 10 minutes into the 3rd cap, then it is of no concern. I'll double check w/Geralyn, but that just makes intuitive sense to me. It wasn't written clearly to me.
Thanks all! And Brax, I am anxious to see the reaction when I roll in with the coolers, too. Oh boy, adventures in chemotherapy.
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Here's an example:If you put your 3rd cap on at 11:00 then the chemotherapy medication can start at 11:10. You then would change to your 4th cap at 11:30.
If instead, you put your 3rd cap on at 11:00 and your nurse doesn't come around to start the actual chemo until 11:25, ask her to wait. Wait until 10 minutes into wearing of the 4th cap. The idea is to not only have your scalp very cold, but also that no cap changes are taking place when the infusion is beginning.
The best coolers I've found are Igloo Ice cube 60 quart. They are square rather than rectangle and easy to manuever. I've found that I can fit just as much in them as a huge rectanglar and awkward cooler.
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brax: so glad your team responded to your needs! Way to go! Re: leg stubble: for me, eventually I could stop shaving. I think it took 2 chemos. Didn't need to tweeze or pluck, either. LOVED it! To anybody who encounters resistance through your nurses or oncos: PUSH THROUGH. They'll catch up to you ( and the rest of the cancer world) later. Trust me.
Shampoo and conditioner: If you have Trader Joe's near you, I used their Nourish Spa botanical shampoo and conditioner. I swam every day and rinsed my hair every day, and used a little conditioner even on non-shampoo days. It definitely helps with detangling, if you are prone to that. It is okay to comb and rinse your hair each day; just make sure it's cool or tepid water, and use a wide-tooth comb such as a pick-type comb, and manipulate your hair as little as possible. But it's not like you can't touch your hair or anything... keep the snarls and tangles out of it so you don't end up pulling on it.
dancetrancer (and anybody else just starting PCCs): You put the first cap on for 20 minutes. The second cap goes on for 20 minutes. This is all during the premeds; ask your nurse how long your premeds will last and count backwards 50 minutes. Exactly 10 minutes into the third cap is when the chemo portion of your infusion begins. For example, I had TC. My premeds lasted about an hour 10 minutes. So, we'd time backwards 50 minutes and about 20 minutes into the premeds would put on my first cap, for 20 minutes. We'd switch to the 2nd cap, for 20 minutes. By about then the premeds were ending and we'd put on the third cap, and exactly ten minutes into that the infusion would begin. IT IS ABSOLUTELY OKAY FOR THERE TO BE A TIME DELAY BETWEEN THE PREMEDS AND THE INFUSION. So, if you are done early with your premeds and not quite 10 minutes into your third cap, it is totally fine for your nurse to wait 5 or 10 minutes to start the infusion. This happened to me twice. It is also okay, if things are wildly off time, to put on a third cap for 20 minutes and in the 4th cap at the 10 minute mark start the infusion.
The caps have max-colded your head at about the 20 minute mark. Those first two caps are busy putting your folicles to sleep. The idea is that after two 20-minute caps, your hair follicles are frozen, and in that thid cap at the ten-minute mark, your scalp should be uniformly cold so that the infusion doesn't "hit" the hair follicles. Hope this makes sense. For those just starting chemo, your first infusion will last longer (and the premeds will take longer) because they start everything on slow drop to make sure you don't have an allergic reaction, even to the IV pepcid, etc. Work with your nurses on timing.
Hope this helps!
Susan
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I went for my neulasta shot yesterday. The first time I went the nurse seemed a little cold, I thought maybe because I was an evening appt. (right at their cut-off time) because my first chemo finished so late- and it has to be 24 hours or later. Anyway not so looking forward to seeing her this time. Everything went fine and she had lots of questions and it wasn't until I was in bed last night thinking about it , that I think she was confused that I had hair? She said is this your first neulasta shot, and I said no, I got one after my first chemo. And she said are you getting chemo weekly or bi-weekly? And I said every three weeks. I did not think anything at the time, but maybe she was thinking I should not have that much hair at three weeks?
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sebm9...Thanks for stubble info lol. I got my shampoo at Trader Joes, I think it's the same...Balanced Moisturizing Nourish Spa with Organic Botanicals? It was very inexpensive under $3 I believe. I was surprised to see methylparaben and propylparaben in ingredients. I read that it is not uncommon to see these parabens in organic products, but I thought it was advisable to stay away. New to all of this and still trying to figure it all out.0
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To those just starting, Be sure to explain to your nurse that the timing of caps is very important. We always checked with mine when we were ready to put on the first cap, and reminded her that we would be ready for chemo in 50 min. If she wasn't heading my way when it was almost time, one of my helpers would go check with her. She was not the most supportive, but she always came through on starting things when it was time.
As far as how expensive some of the shampoos and conditioners are, you will find that with the limited hair washing, your first bottle will last throughout chemo and beyond .
The details do seem overwhelming at the beginning, but the cap procedure becomes routine very quickly.
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Thanks Laura! - I sent my email address. 0
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Thanks Laura!
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OK, between these posts and the write up from Susan, I think I've finally figured out the 10 minute thing! It's b/c when the chemo is first infused you want your head to be at it's coldest, and you don't want to be having to change caps right when the chemo is first starting. Brilliant. So it IS exactly 10 minutes into the 3rd cap, and if NOT, then delay it to 10 mintues into the 4th cap (and you can make the 3rd cap 20 minutes if necessary to have the delay to the 4th cap). This makes perfect sense now that I understand the WHY. THANK YOU!!!
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DeesD, We put the gel band on right after the cap. My helper put it on, and then I would reach up and adjust it around the back and over the ear area, you can tell when you think it is right. Then followed up with all of the regular bands.
We also found that if we fastened the velcro on the front of the cap before placing it on my head, things went a bit more quickly.
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Does this gel band have cooling material in it? Or is it just a strap that holds the cap on closer in the tough areas? I understand it is ~ $50 extra per month and that if you lose hair it is usually above the ears and at the nape of the neck...my hair is long and would cover that...wasn't sure if the extra cost was worth it...considering it, but I don't know.
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dance, The bands are filled with the gel. I wasn't sure whether to get them either, because my shoulder length hair would cover those areas. I know they work though, because I didn't have them for my first treatment, and did lose some hair over my ears and a tiny bit just in front on my ears where the cap did not cover. I mean barely any hair was lost, but I decided to go ahead and get the bands. New hair started growing in those areas as soon as I started with the gel bands. I don't know if it is worth your while to spend the extra or not. No one but me would have ever noticed where I lost hair.0
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Dancetrancer--you got it! Don't get too hung up on which number cap or precise times -- we took the 20/30 minutes as "no longer than". Just be sure you have at least 50 minutes and a fresh one ten minutes before they drop the first chemo. When it was time to go, we changed to a fresh cap whether it had been 5 minutes or 25 minutes to give us ample time to get home before the next cap.
The gel bands do have coolant in them. I got them but did not use them as my husband determined they were unnecessary. I'm trying to visualize whether they could effectively cover the area over the ear but can't picture it. My hair covers that area--not sure it is worth it unless you have short hair that will not cover that bald spot. I guess I have a standard sized head as I didn't lose at the nape of my neck, at least that I know of! I'll probably find out I did when I get a couple o inches of growth.
Interestingly, Geralyn said the bands were developed to cover the eyebrows but that is just too painful so women started using them to fill in.
Here is another factoid to file away. My hair grew VERY little during chemo which was good as I didn't have to deal with these lovely mousy brown and grey roots. When I read that some women had a lot of hair growth during chemo I naturally panicked and went straight to disaster scenario number 847. My hair is definitely growing back so number 847 isn't going to happen. My point is I am not sure there is a normal on hair growth during chemo so don't sweat it.
I was so hoping my hair was going to grow in a lovely shade of grey....like many "blondes" I had no idea what my real hair color was!0 -
I popped in on my colorist last week to see what could be done about the roots.
Short answer: nothing. Products without peroxide and ammonia do not work and will not cover grey. Oh well!
Fortunately I have no audiences with royalty or TV appearances over the next few months and the women in carpool and checkers at the grocery don't seem much bothered.0 -
I just wanted to say that I was out riding in the car today feeling my hair whip in the breeze when I realized that, if not for cold caps, nothing but a wig would be whipping. It really put a smile on my face.
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Hi TC - Where do you get the Thai Crystal?
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