Cold Caps Users Past and Present, to Save Hair
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Hortense & Rhonda - thank you so much for your words. Today is 2 days post chemo #2. The cap changes went much smoother than round #1. My bro attended with my cap helper this time (I am separated, so no hubby to help!) and my bro was really amazed at all of the effort. He said just one touch with his hand and he felt like he'd be frostbitten! The nurses were so much more positive this time, and amazed I had hair! The real skeptic changed her tune into "you should take pics to prove your results!" I enjoyed that.
So the shedding is in full swing. I guess I am kind of getting used to it, but it sucks, none the less. Right now, I have this massive dreadlock at the back of my head where I guess the shedding hairs are getting caught with the good hairs. The sides are much easier to comb through, but the back is a real problem. Do you have any tips on how you got through all these tangles? I have a liquid detangler, which I will spray on, which i was using, but the "dreadlock" was never this bad before. I am afraid a whole bunch more hair is just waiting to fall, which will be so disheartening. I am dreading it. Ugh.
Thanks for the tips ladies - you are such sweet women to share your stories and your support.
xo
curly
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Curly- i found that super gentle brushing of my hair (not at the scalp- holding it and brushing out the long part) - before washing it helped so much with the tangling. I know we aren't supposed to brush but my hair is fine and long and gets super tangled, I had to do it. Otherwise the "shed dreads" that you are describing were just pulling out too much of the other hair!
I sat in the tub with the handheld shower attachment and gently rinsed everything down with tepid water after the pre-bath gentle brushing. It worked!
I am today in Miami for a conference and will see a bunch of my colleagues for the first time since my diagnosis in October. I doubt they will notice change. The hair is thinner but still covering my whole head, and i have one inch stubby new hair in front of my ears where the gel bands didnt quite cover. I used toppik for about a month to cover two spots where the penguin caps have a seam thing and the hair got thin- I could see some scalp through the strands, but now those are all filled in as well. The toppik was great!
Keep the faith girls, the cold caps are awesome. It is great to be on the other side and now my main concern is finding shirts that mask the fact that i am a B cup on my natural side and a D on the side with the tissue expander! It is a hilarious problem to have, but temporary. thank gosh for ruffle shirts.
I wish everyone an excellent weekend.0 -
Dear Curly,
I use Kenra daily provisions that I got at a salon store. It is a spray that conditions, hydrates, detangles, and adds shine that I use after washing my hair. The important part is it Does Not contain any alcohol or anything else that is bad for your hair while using the cold caps. I just spray it on my hair and work a wide tooth pick from the bottom up while I hold my hair near the scalp so as not to tug on it. So far it has worked pretty well for me. The first few times are the worst for shedding, but almost all of us using the caps have not needed a wig or hair covering. I shampoo my hair about every 4 days and only use the wide tooth comb once a day on it. I usually put it back in a loose scrunchy so it won't get so tangled. Also, my DH wears gloves when dealing the caps. He said if he doesn't he will get frost bite. Wishing you the best of luck and you will be so happy you kept your hair! Keep us informed on your progress.0 -
1 down, 7 to go. I had my first infusion on Thursday. It was quite an ordeal. The caps were a lot tougher and more involved that I thought. It was quite a strain on my mother. She just didn't seem to get how important it was to be on time, or maybe the exertion as just too much. It felt we were battling the clock from the beginning.
Then we got home and continued but we had trouble getting the caps cold enough and we had to take them out of the containers and put them straight on the dry ice. We also found out we were missing one cap and had an extra box of straps instead so that didn't help.I had planned to wear them longer than the prescribed time but we just didn't have any cold enough so we had to quit on time.Wearing them was no fun either. Every time a new cap went on, I had to struggle through the pain of the cold. Sometimes I thought I wouldn't make it. I took Tylenol 3 to help but not sure they did. I'm sure after 2 weeks I'll be ready to go again, but I find it daunting right now.My brother will be available next time to help and that will be great. My mother also is more practiced and I think it will go smoothly. I just pray that we did enough this first time to keep my hair and make the second time worth it.Funny thing is I didn't get cold. I didn't use the electric blanket or put my coat on. I kept wondering if I was doing something wrong.Got home feeling fine, ordered dinner when we'd rested (I was exhausted too) and then suddenly felt nauseous. Perfect timing the puking started right when the food arrived. The anti naus meds were just not doing it anymore and I was not in good shape for a while. I took the next dose early and that helped but I took a bucket to bed just in case. Woke up at 1am to be sick again and phoned the help line to find out which of the meds I could take again. That was the last time and with the help of the occasional gravol, I'm in control.Yesterday, I had to go an learn how to inject myself with Neupogen. I start that today. Not looking forward to that!!!So it wasn't fun but I managed. I think I was a little arrogant. My surgery went smoothly and the healing well. I thought I'd be "fine" with chemo too. It took me down a notch or two. But I'm strong and I'll get through this. The hats will be easier, the vomiting will be controlled. The rest I can handle.Questions: does anyone have any other suggestions that Tylenol 3 to make the hats more bearable? And do I need Claritin with Neupogen the way many do with Neulasta? I have to inject the Neupogen for 8 days.
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Curly-I had a dreadlock like you are talking about right after #2-I realized I had to get rid of that because it was recruiting hairs that were not ready to shed-I have very thick wavy hair and for me, I have to use conditioner. I also exercise nearly every day, so I rinse my hair with cold water even when it is not wash day and condition it then too. I also cannot use the thick comb, it pulls way too much hair, I use my fingers as my brush and make sure there are not tangles in it. It is better for me to do this when it is dry, before I wash. I lost a lot of the hair that was in the dreadlock and used my fingers to very carefully weed out the hair that was still attached to my head. It was like ripping off a bandaid, but excutatingly slow! Most of that hair was from my temple areaes, more on one side than the other, so I part my hair to cover it. Once I got that out, I wanted to make sure it didn't happen again. I also find the conditioner really helps soften my hair and it doesn't seem to tangle as much and feels better and not as much like straw! I am now 5 days PFC, Hooray!!!!!! And the shedding is still there, of course, but slowed down considerablly after my big shed right after #2. I lost a lot around the temples like many women, and just thinned out evenly around my entire head, but I still have a lot of hair and full coverage. I just started my iron supplement so I hope that will help with the shedding and I used a blow drier with a defuser on the hair below my ears on a warm/cool temp and that really fluffed it up and gave it a lot more thickness. I use a dark eye shadow that looks like my roots around the temple area with a thin short hair brush eye shadow brush to apply it and to help hide the actual scalp, but since my temples were hit first, back on around #2, I already have lots of baby hairs coming in there.
Definately remember this is a temporary time in your life and you will get past this and it will be a distant memory before you know it! Still only a few people know I went through chemo and no one can tell, I am incrediblly thankful I found the caps and still have most of my hair! Keep the faith ladies and good luck!
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Shipsgirl, The first time is so chaotic, but it will go much smoother next time. I found it very helpful to have 2 or 3 helpers each time if possible. I took an Alieve on my chemo days, and I thought it worked pretty well. I can't answer your question on Neupogen, I had Neulasta.
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Laura thanks! Chaotic but you still kept your hair. That is so encouraging! I have been a little fearful that the damage was done. I won't find out until after #2 because I'm bi-weekly. My mother is already confident that she can handle it better now she knows and with my brother's help, I believe we'll be good.
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Thank you everyone for your tips.
Grex - you give me hope. It took me an hour, but I worked through the most brutal dreadlock....lots and lots of hair went with that, but my parents came today to visit and said hair looks normal to them. I feel such a lightness at the back , which I don't like, but rationally, I know it looks fine. Certainly much thinner in back, but fine for now. I just hope I have a similar experience to you, in that I hope the shedding slows. Did it continue to shed a lot all the way to #3? That would really eat away at me. But I know it's out of my control. I think I will make a point of putting in leave in conditioner in daily. I used a ton of it and detangler to get rid of the dreadlock. Didn't think i would even get it out, but i did, finally. Feel like a new dreadlock is starting to form. ugh.
shipgirl - so sorry you had such a rough time. I hope you start to feel better soon. And don't worry - we had some temperature hiccups with round #1 and it still turned out ok. Keep the faith. I figure for now, I kept my hair for a few extra weeks more than I would have without caps, so anything is a plus. Though I really, really hope I keep my hair throughout!
thanks everyone for the notes.
xo
curly
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Grex - congrats on being PFC! Wonderful news!!!!! Hope you are doing well.
curly
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Curly-you WILL keep your hair!!!! Yes, the big did stop, like so many if the ladies in this board!!!! It was over a few days and then just regular shedding.
Hey, I saw Mdg had used clip in hair extension for some thinning she had and loved them! I went Sally's but they were like $100 & the people there didnt know anything about them.
I went back to fancy wig shop where I put my wig on hold...,did a little dance over the threshold and met with the lady who helped me. She was amazed and I could see they were worried us cap girls would put them out of business!
But she was great and fitted me for a couple if clip ins to make my hair look fuller on the sides. She was wearing hers & says she wears them everyday & she's not even a cap girl! Anyway, she mached my color perfectly & showed me how to use them. They are Awesome & it was way less than Sally's! But when I blowed my hair out it gave me so much fullness, I didn't even need them. Check it out, if you think you need more fullness. They are super easy, you cannot tell they are in & they don't pull on your hair.
We all know your pain, but you WILL get through this, keep your hair and be on the other side soon enough!!!!!0 -
Thank you dear Qrex! Clinging to everyone's good wishes!!! Everyone here is just so lovely. Thank goodness for this board!!!
I wanted to share a tip with you all. I was looking into Latisse, and had difficulty finding someone to prescribe it, plus was concerned re: side effects. I happened to find this thing called Stimulash...same idea - for thickening of eyelashes and brows. Let me tell you - just after 1 day of use, my thinning lashes started growing and the slight thinning on one brow started coming back. My 6 year old told me "mom, your brows are thicker!" I wouldn't have believed this if I didn't try it myself...but it seems to be working. This is day 3 of it, and it has improved. Now why oh why can't they make this stuff for our heads while going through chemo? There should be a shampoo. Anyway, go out and try it. I think it is amazing. Expensive, but it makes me smile to see my lashes back!
xo
Curly
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Hi everyone, I haven't been on in a while -- have been traveling, among other things -- but still helping coach women using PCCs.
Just wanted to let you know I am a nominee to be an Honorary Bat Girl for an upcoming SF Giants baseball game, as part of MLB's Strike Out Breast Cancer day. If you are inclined, you can vote for me at http://mlb.mlb.com/honorarybatgirl/2013/index/jsp?partnerId=ed-6948042-580741160
Where it says "vote" choose the Giants; I'm listed as Susan Martinez and my photo is of me and my mom with the world series trophy from 2010, the year I went through chemo. I talk about PCCs in my writeup, so who knows, maybe it'll help spread the word a bit.
There are many great nominees, of course, but wanted y'all to know!
Cheers,
Susan
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Hello sebm9, long time no see
Clicked the link to vote for you, but it didn't work. We cappers must stick together and spread the word!0 -
The voting is over and winners have been announced. congratulations on the event.
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schoolmom, I just went to MLB website and voted. Where did you see that the contest was over and winners announced?
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The link did not work so I went to mlb website and it listed the names etc.
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Hi Susan - happy to vote for you!
Go to this page - http://mlb.mlb.com/honorarybatgirl/2013/gallery.jsp - and enter 'Giants' as team. Susan's name is on the fourth page.
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I voted for Susan several times - there didn't seem to be a limit. Lots of competition for the Giants. I checked out my Twins - only 3 pages of entrants vs 14 for Giants. I didn't even know this contest existed! Good luck Susan!
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Hi everyone, thanks for voting for me! The voting continues -- it isn't closed yet -- and in fact you can still be nominated to represent your team. You can also access a link by visiting http://mlb.mlb.com/honorarybatgirl/2013/gallery.jsp and choose Giants as the team; there are about 14 pages of nominees right now but I show up in the first few pages.
Thank you everyone! Hoping to get word out!
Cheers,
Susan
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I voted, Susan -good luck, and thanks for mentioning the daps in your profile!
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Shipsgirl, sorry the first time was so rough for you...hoping the nausea stays away next time! In addition to 2 Tylenol, I also took a Xanax before each treatment. Mostly because I was nervous about the chemo itself the first time, but I think it also helped me with the caps...I was very mellow
. It should get more bearable after the first few...see how it goes next time, making sure the temps aren't too cold...if its still as bad, you may want to check with Geralyn to see if the temp should be adjusted. Once you see the great results, I think the work will seem worth it! I am now 5 weeks PFC and so happy to look in the mirror and see 'me'. Hang in there!0 -
The second link worked. I voted a number of times!
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Susan, I just voted for you. Best of luck!
xo
curly
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Shipsgirl - don't forget to eat! Having something in your stomach helps to prevent nausea.
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Grex - when I get some energy back, I am definitely going to look for some extensions. So yesterday was the required wash after chemo #2. No dreadlock! Yay! Definitely another big shed, but not as bad as the previous 2 sheds. Much thinner hair and I see a big difference, but my kids don't and others don't really seem to. I'll take it! There is hair! I am so hoping the shedding will slow now. Let's see how it goes. I am noticing majorly dry hair, so must keep up with the leave in conditioner.
A trick I noticed that is helping - I put my hair into 2 low hanging pigtails ...very loose...at bedtime or when lounging around, to help avoid the dreadlock happening at the back. That seems to help.
Hope everyone is well.
Shipsgirl - how are you doing?
curly
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Today I went to get my teeth cleaned and my dentist, who knew I had been treated for cancer, looked at my hair thoughtfully then said "I guess you didn't have to have chemotherapy". You can imagine my glee in telling him my story. He was fascinated to learn about Cold Caps and remarked that it was a shame more people didn't know about them. I couldn't agree more.
shipsgirl - so sorry you got nauseous. I did too the first time, but I think it had a lot to do with all the sugary Powerade I drank before chemo - to plump up my veins - and the sugar in the popsicles I sucked on during Taxotere. I don't usually eat much sugar and I think my body strongly reacted to a sudden high dose of it. I stuck to drinking water with a bit of lemon in it and sucked on plain crushed ice during succeeding chemos and had no problems. I second the suggestion to eat something before chemo, but make sure you do so in advance to allow it to get digested. I stuck to bagels. They are heavy and dense and I figured would tide me over.
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Can anyone remember what day cold caps are to be on The Doctors? I've forgotten - I should have written it down - and when I went back to try to find it, I couldn't. Thanks!
also, I went to the new Penguin website at www.penguincoldcaps.com (It's about time they put one in their own name) and on the second page I went to I found this:
lectus egestas mattis. Ut sagittis mattis velit et imperdiet. Suspendisse rhoncus ornare sapien, adipiscing condimentum arcu gravida in. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Duis arcu ante, convallis feugiat lobortis eget, egestas quis tortor. Sed lobortis dictum lacus. Vivamus lacinia mauris eget erat blandit tincidunt. Nunc viverra egestas dapibus. Sed aliquet, sem eu consequat adipiscing, urna sapien commodo dui, sed hendrerit justo urna in turpis. Maecenas blandit mi et purus gravida tincidunt. Nulla tempor mauris ante.
It looks like Latin to me.
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It's supposed to air a week from Thursday, May 2nd.
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Thank you!
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Ladies, I finished chemo in early november. I have had intermittent feelings of scalp pain and tenderness -- I would say I first started feeling that after my first chemo. It is in various places on my scalp. I have full coverage in both places, as far as I can tell. Right now the most bothersome area has a little bit of a feeling of numbness to it.
SO, being a hypochondriac these days (along the lines of, just b/c I'm a hypochondriac doesn't mean I don't have a serious illness), I naturally googled scalp mets and ... it has me sort of worried. I guess the fact that I first noticed this after my first chemo suggests that it is NOT that, but I also have a terrible memory so I'm not 100% sure it's the same sensation.
Thoughts? Much appreciated.
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