Cold Caps Users Past and Present, to Save Hair
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http://i317.photobucket.com/albums/mm389/shadow2356/Juliannaspring2011h.jpg
I can't get the picture to go in but here is a link to it.
Good luck everyone!!
MaryEllen
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Yea MaryEllen~
My one year was last week. Got a cut and highlights.
It's great to hear from you. You were great support...
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Congrats to all the grads!! Glad everyone is doing so well---
Don't know if anyone reads "cure" magazine? Sort of a break through There is a very tiny area that gives you a link to read a small snippet on scalp cooling--the link is www.curetoday.com/snippets go to the 2008 list--then current issue type in snippet --it will take you to the hair cooling--the digicaps and penguin cold caps are mentioned! I think that is a step in the right direction finally--to see a publication actually print some positive feed back to the caps! Even though--you must jump through a hoop to get there!
Have a Great weekend All!
Sharon
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Just checked out the pics--what a beautiful picture!!! Gorgeous girls with long pretty hair--like Mommy Like Daughter--too cute!!
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To the grads. How long after stopping chemo does it take for your hair to start growing back? Also, how long after until you can go back to normal shampooing, drying, styling and coloring?
My hair did really amazingly good through the first 3 treatments but after the 4th I started loosing a lot more. I still have a lot left but I also have 2 more treatments to go. I'm expecting it's going to be noticably thin after the 6th treatment.
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steph42: Some of my hair began growing while I was still going through chemo, though I think I was so focussed on potential hair loss that I didn't notice it. It has come back VERY thick, super-curly, and *fast* and I like it more and more as it grows back. I also noticed that my existing hair became curlier and wavier, which I love. (If I'd lost all my hair, I'd be looking like Shirley Temple at this rate.) I already had kind of big hair, now it's even more fun. I don't dry or color my hair, just wash and condition and air-dry (it has natural wave and, now, natural super-curl), but I waited until heavy shedding stopped before resuming vigorous warm water washes (after about 6 weeks I washed gently every 2-3 days, but still in cold water).
For those heading towards the end of chemo: it's fairly normal for shedding to continue long after your chemo stops. I was very startled by this and was convinced I'd lose all of my hair in a slow torturous way! I didn't...it felt thin and dry (to me) but not for long. Everybody's experience will be different. In my case, I continued shedding for a few months, even as hair re-grew. (Final chemo late June, first warm hairwash around Halloween.) That's why I emphasize the importance of following the hair care protocol from the get-go. You don't need to stress -- stress itself can cause hair loss! -- but just be mindful, is what I suggest. The stronger you go in to each session and the faster and more thoroughly you detox, the better chance your hair (and liver) have to keep strong.
If any new folks are reading, PM me with your email address and I'll send you the writeup I've done about my PCC experience. All the info comes from PCC, the Rapunzel Project, and my nurses.
Cheers to everyone,
Susan
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Happy Saturday all:
MaryEllen: Beautiful pictures....
Sharon: Thanks for remphasizing the steps again.
Day 6 out of first chemo and my hair is disgusting!!!! I didn't wash it for the 4 days prior to chemo (that is what is suggested for the ElastoGels) and shouldn't wash for a week after so tomorrow I'll be gently washing. Nary a hair thus far has fallen out but that is normal.........the 21 day will be key.
Today, my SE's are subsiding some. Guess by the time I'm feeling better, they will hit me again. Need to get some exercise today. I had a friend tell me to get my body out there working out to which I replied, unless you've been here you will never understand what the bone, muscle pain is like. AND, I hope she never, ever has to experience this disease. We really need a vaciine.
I lost 6 pounds this week and sure the oncologist won't be real happy but who can eat! Still pushing the Greek Yogurts and got some lemonade with raspberry juice which is tolerable.
Have a great one everyone!
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Here is a comparison of my hair before chemo and 59 days (3 treatments) into it.
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Great Pics Steph 42! Are you using Latisse? Your eyebrows look the same!
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My hair started growing back shortly after chemo stopped. It grew really slowly but that might have been because of the herceptin. I only lost it on the hairline. I really wasn't even aware I lost any until it started coming back.
I didn't lose my eyebrows and lashes until about 6 weeks after I finished the chemo. I thought I was safe and then they started coming out. My eyebrows came right back, although they are a bit thinner. My eyelashes are still short and stubby a year later.
I have to say, my body hair is much less now too. I don't need to shave my legs as much and arm hair hardly came back at all. Not that I miss any of that. I just thought you all might find it interesting because we all get so obsessed with hair when doing chemo and the caps.
Good luck!!!!
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Steph42: You look fantastic! I truly cannot tell which picture is "before" or "after". Wow! I'm very impressed. Congratulations!
Susan
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Hi Steph42: I noticed hair growth around my ears exactly 10 days after my last treatment of 4xTC (I remember because it was New Years Day). Not sure how that translates if you're having 6 treatments, but...I had lost a LOT more than you around the ears by my 4th treatment, so I think you'll be fine. The top layers seem to hang in there throughout. I'm 3 1/2 months PFC and still babying my hair with cool washes and once a week washings...but I have been coloring with Loving Care, blow drying on cool and flat ironing it. It's starting to look a lot better, even though the underneath layers are still growing in (fast.) Shedding mostly stopped about 2 months PFC, although that seems to vary for everyone. Good luck; you'll make it! Lucky60
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Gee I am getting nervous about the eyelashes---only 11 days PFC---they have thinned alot--started Latise one month prior to chemo----I hope they don't all go--??? SO far so good--any thoughts??? My eyelashes have always been my favs! Hope I don't have to say goodbye to them!
Hair still doing the same==thank goodness! Can't wait to say I see some come back on the thin spots!!
Sharon
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Did my first shampoo tonight in the laundry room sink with hubby's help. Tough not to get the roots wet but I did the best I could. No hair loss at all but it is so early. With my wild hair, it will definitely have to go in a lose braid or it will be all over the place. Hope I survive the not drying and ironing it.
I'm in my NADIR phase now but did manage a treadmill workout today! Tomorrow's bloodwork will determine yeah or nay on Neulasta. Hope not!
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ArleneA: Don't fear Neulasta! It's a powerful helper for your white blood cells. Our cancer protocols are very different because it is available these last couple of years. People used to have to hibernate due to low white cell counts. A simple Claritin for a few days will knock out any aches/pains, *if* you have them, for most folks. I went through chemo a year ago, during high hayfever season when I usually take Claritin anyway, and only had a slight soreness which started at my neck and moved to my hips over the course of a week, first chemo, but never re-appeared. It wasn't even on par with mild cramps, more like an overworked muscle, just to give you a measure. Certainly nothing disabling, and nothing that interfered whatsoever with my normal routine. My white blood count stayed perfectly normal throughout my entire chemo, and that's fantastic.
Hang in there! Remember, IF you have any SEs from any of these treatments, they are temporary (treatable within the day, if not within the hour) and totally manageable!
Also, for hair: I put mine up in a clip on its more unruly days. It's okay to get your roots and scalp wet when washing -- you want to keep your scalp clean with that treasured wash -- just be gentle in regards to any agitation/manipulation of the follicles. How nice that you have your hubby's help with your hairwash, too! How sweet! Is he your cap helper too?
sashasz3: (Whenever I see your signon and see Pittsgrove NJ, I think of Pittstown NJ, near where I grew up...) Many folks don't lose their eyelashes at all. I didn't even notice mine had thinned until suddenly they started growing thicker at FC. I didn't use latisse...didn't want the discoloration of my eyes it can cause, esp. for a short-term use...but they are fine. (My doctor said Latisse can actually cause them to go into a cycle where they fall out before regenerating, so it's kind of a wash.) My brows took a hit 2-3 weeks PFC, but very short-term and back to normal within a matter of a few weeks. (It was the only time when I looked unusual during my chemo; only people who knew I was going through chemo could tell.)
Don't stress! Whatever happens will happen, everyone is different, and there are things like brow pencil and latisse and claritin etc. to help bridge the short time back to "normal".
Cheers,
Susan
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Thanks for the support Susan--I even PFC need that crutch of support for those who really know what's going on--
ArleneA--I used Neulasta post every TCH--I had NO side effects at all---not bragging --NO sickness either--don' t fear it --it is a great med---anything to keep you in the game!!
Sharon
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Thanks Susan and Sharon: I like the positive comments about the Neulasta. Can't really believe the docs too much as they told me not to suck on ice chips because they give you a metal taste and now, after one chemo session, I woke up with mouth sores. Hopefully, Biotene comes to the rescue. I had 3+ days of what I consider horrible side effects.
Sharon: I'll be washing much better next washing session. Yes, my hubby is my best cheerleader and does my cap changes too. He is so supportive!
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Arlene A
I am remembering back to my chemo class now and when they mentioned mouth sores they talked and listed salt water and Biotene, but then they talked about a super prescription mouth wash if you got bad ones. I'd call today and ask for the "good stuff". Mouth sores are miserable. I got sores on my lower mucus membranes (if you know what I mean). For the below the belt sores I found that A & D ointment (yeah the stuff for baby's butt) helped with the burning from urine and also helped heal and prevent.
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ArleneA: I'm so sorry about your mouth sores! My nurses had me gargling 6x/day with baking soda and water, and advised sucking on ice to prevent sores! Same science as scalp cooling...chilling the cells keeps them from absorbing the chemo... I had metallic taste throughout my chemo, probably the most annoying of my SEs, but eventually found out about Biotene from the list here and it was a lifesaver! Much better than the baking soda remedy. Definitely ask your nurses if they've got something more powerful in their arsenal for you!
Your first chemo will give you an idea of how you'll go through chemo, though to be honest, my SEs were most present during first chemo and many never recurred with subsequent infusions.
Susan
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Afternoon/Evening Ladies:
Well, good thing is what I thought were mouth sores must have been just some crusting or something because after I got some water in me and brushed my teeth, it seemed to clear up.
Bad news is that my WBC's plummeted so no choice on the Neulasta shot. Guess tomorrow will tell if I have SE's from it. Now, the standard protocol is that I have to get the shot the day after every chemo. Plus I have to go on antibiotics now too! Fortunately, my hemoglobin and platelets are ok.
The hearburn is horrible and they suggested (highly) that I take Prevacid daily and also Advil (not Tylenol) starting the day after chemo so I'm prepared to deal with the pain, etc. Advil is ready if I have a side effect from the Neulasta.
Thanks everyone for your great comments. I was ready to STOP chemo!
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Arlene,
Not everyone gets reactions to the Neulasta shots. I didn't get any at all. Because my counts went so low after the first chemo I got upped to five shots after each. If you get them at the office, have them teach you how to do it. It's really not bad at all and saves a ton of time and exposure to sick people where they give shots.
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OMG, five shots after each chemo. You are so LUCKY you didn't have SE's. They do my shots right in the infusion center so no more exposure than going for chemo! Hoping I slide through without SE's from the Neulasta but since I had such horrible pain from the Taxotere, just preparing myself for the worst and hoping for the best.
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ArleneA: I'm sorry to hear about the heartburn! The GI system takes a huge hit with chemo, hence all of the anti-nausea meds on hand as well as special diet instructions. I know that IV Pepcid was one of my premeds (and boy when I saw the bill, was I ticked off -- couldn't I have just taken some at home for pennies on the dollar!??!) I don't know if your nurses have you on a bland diet the first few days, it helped me enormously. Also, eating in teensy, pecking portions rather than meals. Just nibble. Tons of fluid, one each from water/apple juice (no orange or citrus)/sodium (such as chicken broth)/other (such as ginger ale, jello, popsicles). For the first three days post-chemo I ate apple juice, toast, bland crackers, oatmeal, rice, chicken, cooked eggs, banana, broth, cottage cheese, bland cheese such as provolone. No acids, no coffee, no spices, no alcohol, no raw fruits (other than skin fruit such as bananas, apples, mangos) or raw veggies throughout chemo, not even my 'good' week. After three days I could jazz it up a little and add some steamed veggies and some other grains (quinoa! I came to love quinoa!). I sorely missed berry season and will make up for it this year. And as soon as I could PFC, I dove into the ceviche and sushi, two of my favorites.
The one bad day I had during chemo was at #3: I was at a memorial day party and somebody handed me some strawberry shortcake, which I love. I'd been feeling fine for weeks, and didn't even think about the strawberry, but man oh man did I pay for eating that raw strawberry.
I did go off-diet a couple of times: a trip to wine country (everything tasted like an unwashed fork, but my companion thought so too sometimes, so I don't think it was just the chemo :-)), Crazy Crab sandwiches (crabmeat on grilled sourdough, YUM!) and a Ghiradelli Hot Fudge Sundae at the Giants baseball games for which I had season tickets (I consider our world series victory symbolic of my own victory of getting through chemo and rads and beating cancer!), and one time some mild bbq, for which I suffered a little but it was worth it.
Okay, probably more than you want to know about food and chemo, but there's a whole book in there! I'm a foodie, so not having tastebuds, and having an extremely limited shopping list, could have got me down, but instead I turned it into a fun challenge. Just remember, it's a temporary inconvenience in order for you to get your life back!
Susan
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Susan:
So appreciate your 'diet' book. I guess I might have brought some of this on myself because NOTHING tastes good so I've been working to find something that does and not following the guidelines. I'll return to a more normal pattern tomorrow. Things I used to love (and guess many of us are like that) have no taste. I was craving Island's Chicken Nuggets so had those for lunch and guess I just blew it big time with a slice of pizza for dinner (just cheese though). I've actually got a background in Nurition and SHOULD have known better. I was told today to avoid all fresh fruits except (as you say) the peelable ones and then to not touch them but have my husband wash and peel them for me. They don't even want me handling banana peels - he has to peel them for me and hand me the banana.
Back to more reasonable eating tomorrow.
Glad I refused the IV of Pepcid today. Who needs the added cost when you can take a pill but I wonder if it will be in my next IV.
Wow, sorry about the strawberry - so many things to think about!
Thanks for all the advice! Arlene
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Hi ArleneA: If you have tummy troubles, maybe consider the IV pepcid next time -- no doubt it's far stronger than the over-the-counter stuff (I was kind of joking about the cost, but nothing is worth the stomach upset). I should have mentioned, beware tomato products: quite acidic and can play havoc with your stomach lining, which has just been knocked out by the chemo. Ditto spices, fried: they are no-nos.
Don't try to appease your taste buds so much, if things taste off; the nutrition and the balance of fluids and getting protein are the key things. It sounds so functional, but it kind of is. Remember, it's temporary!
I found that salty things (salty crackers, salty pretzels), apple juice, bananas tasted great to me. In the days before chemo, I loaded up on sushi, ceviche, and my mexican and mediterranean and indian favorites, knowing it was going to be a few months before I could partake. But boy did I ever appreciate them when I could eat them again!
Hope this helps. You'll find your own schedule and what works for you and what to avoid.
Susan
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Wow don't know what my deal is--sitting here crying my eyes out--so glad I completed 6 rounds of TCh--now totally in fear of my next 34 sessions of radiation---I should fear no evil at this point--just being wimpy and hormonal I guess----so not me--weak moment--sorry--needed to vent---
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sashasz3: Congratulations on finishing chemo!!! Woo hoo! Time to do the Penguinista Graduation walk! Big tears are in order, you earned every dang one of them! and big hugs are coming from this California Jersey Girl. You have been through the toughest of it, hands-down.
Don't be afraid of rads; everyone is different of course but it was a total non-event for me. Fast, painless, no SEs, barely any sunburn til the very end (knocked out in a day by aloe vera). You will do great!
xoxoxo
Susan
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Hooray Sasha! Congratulations. I think the tears of relief are normal.
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Had a bit of a scare as my temp started heading up and whew stopped just shy of the 100.5 Still concerned about this port too as my heart is pounding like crazy. Need to follow-up on that tomorrow. My body really isn't liking the chemo and sure hoping that I don't have to stop it.
Tomorrow, I need to do a few hours of caps! No loss yet, but again it is still really early!
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Thanks for the support!!! I needed that boost!!!
Sharaon
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