Cold Caps Users Past and Present, to Save Hair
Comments
-
I am so excited I have to share! I just washed my hair and had a super minimal shed. I am 5 weeks PFC today and I have babies!! Little tiny wisps all over 1/4-1 inch long. I know from my bangs and roots that what stayed has been growing, but I have babies!!! And they are not all grey like my husband told me last weekend. Sun must have been in his eyes :-)
0 -
sewwhat - hooray for you!! It's so exciting to see them come in, isn't it? I thought mine were grey when I first saw them, but now they're over 1" long, they are mostly brown. Congratulations!! I'm really happy for you.
Today, I'm halfway through rads. 16/32 I'm just counting the days. So far, my skin is doing really well; no change in colour or anything still. All I have is the fatigue still. I will be so glad when this is over though - just to be done.
I'm meeting my new Medical Oncologist tomorrow and we'll be discussing Tamoxifen. THAT has me more scared than rads. I am hoping to postpone starting it until the new year. I would really like a rest from all of this and have time to get myself back on track before starting the next thing. However, my GP thinks very highly of this woman and I think very highly of my GP so if she says I should start right away, I'll do as I'm told.
0 -
Thanks Shipsgirl! I started to cry when I saw them!
I have surgery in 6 hours then rad mapping on Thursday. Start on the 30th I hope. Ordered cream my RO likes tonight. Really glad they are going well for you.
Tamoxifen wasn't bad for me. I took it for 7-8 weeks before original surgery and had no SEs that I noticed. But it was only a few weeks. Some people have a hard time with it though. I will go back on after rads. Ironically it can cause hair thinning!
I SO understand wanting to take that break. I have done a little of that since end of chemo and now. Let my hair down, so to speak!!!
Good luck with the new doctor.0 -
4sewwhat, good luck with your surgery! Wow, rad mapping the day after surgery? That's crazy! I hope you mean Thursday of next week!
0 -
PatinMN--thanks for the good wishes! I do mean mapping day after surgery! It was my choice.RO is in vacation next week. The nerve :0) I want to get this show on the road and be done. Coordinating schedules for surgery put it further out than planned and I want to start rads on the 30th, so it was Thursday or delay another week.
Have a great day!0 -
Hi ladies. So I am now at Day 7 and I have to say I feel terrible. Like, had to take percocet for the bone pain, and incredibly bloated and all over uncomfortable terrible. Any words of encouragement? For what its worth, I don't even care that my hair is a stringy mess
0 -
mfm - Are you getting the Neulasta shot? Have you tried Claritin? I've taken that the 5-7 days after each treatment (I'm 7 days post #2) and have had NO bone pain. It's supposed to help. Also, are they giving you steroids? I know they are supposed to help, but I had 3 days of steroid pills the first time and I was miserable. This time I didn't take them and felt almost 100% by day three. Definitely talk to your doctor - there is no reason for you to be miserable. See what they say that can help you! Also drink a lot! I can't stand water anymore, but I try to keep the (non-caffeine) drinks flowing. Lemonade, Crystal Light, juice, Sprite, etc.
0 -
mfm48 - I hear you on this! I felt this way about a week and a half after my first chemo. I used the Claratin with the shots and it worked for me. I felt a little sore but nothing more than you might feel after a really tough workout. If you havent' tried it, give it a shot (no pun interded). I also had a lot of problems related to the steriods: heartburn, thrush and terrible swelling in my face, abdomen and whole body. I went from weighing 124 lbs on a Tuesday to 134 lbs by that Friday - all water weight related to the steroids (and possibly Taxotere). Here is what I did to get rid of it (and it did go away after about 4 days): I started giving myself lymphatic massge focusing on the legs. You can find youtube videos that outline this method. I walked between 30-40 minutes around my neighborhood. I took it slow but found that it actually helpd with the edema in my legs. I took a couple of over-the-counter water pills. Drank lots of coconut water (helps replace the pottassium lost by the diuretics), lots of lemon water and tonic water with lemon or lime. All of it seemed to come into combination to reduce my bloating. I was pretty much ok by Wednesday of the following week. Also, stay away from sodium. Canned soups are loaded with them and I think they contributed to my bloat. See how that goes and report back to us. I'm hoping and guessing that this will just be a temporary thing for you. I was very distressed by it so I understand how it can make you feel absolutely miserable. When my former boss called to check on me I told that I was ok except I had a huge moon face happening. His response: "Keep your chins up!" I have to admit, that made me laugh and it was so spot on.
0 -
mfm48 - You poor girl. I am so sorry you are feeling awful. If it's of any comfort, I felt the same way and I think many other did also. Comes with the chemo territory. It does get better, and contrary to what seems sensible, forcing yourself to get up and walk seems to help push through the bad times. I didn't believe it would work, but when I got up and moving, I think it helped pump the residual chemo out of my system. While that is probably not the technical term, it is what it seemed like to me.
I honestly would push myself to walk completely around the outside of my house a number of times and felt like I was pushing against a wall, but to my surprise I almost seemed to pop through the wall because of it and felt much better the next day. Some ladies swim, or go to the gym to lightly work out. I couldn't do either, but just walking or light gardening made a huge difference for me.
I would feel pretty punky the first week, got better during the second and felt like myself pretty much the third week after each chemo session. I would rest when I knew I needed to, which meant most of that first week and at times during the second, but could move along pretty well the third.
I had neulasta shots also, but took Claratin like Lighthouse and never had any pain. I did suffer from terrible constipation after the first time until I figured out how to handle it, and took pre-emptive measures to avoid it for all the following sessions. I did bloat and gained a lot of water weight at times. My normally slim ankles and feet looked like a stuffed animals - soft and pudgy. I'd put them up as high as possible hoping they would drain - they didn't, and wonder if I would ever get my old slim ones back again. I can report, happily, that my ankles and feet returned to normal about a month after my last infusion.
I equated my chemo experience to playing Whack-a Mole with me as a mole. Every time I popped my head up (felt good again), I got whacked down.
0 -
hortense, lighthouse, and gildedcage - thanks so much for your responses. There is just so much information out there and from reading this board, everyone seems to be different in how they are handling chemo, Its hard to craft your own defense strategy. I have been walking every day - a smoothie is my reward
I'm trying to figure out how to eat better so I don't feel so bloated all the time. If I take the percocet I feel much better - It just makes me loopy and I want to be a little more "with it" when the kids need me. Are any of you taking silica compound for your hair? Any other supplements that are helping? And did any of you wear the cold caps between treatments? Thank you for your support! 0 -
I'm taking a low dose of the silica as well as biotin. Otherwise, I just take probiotcs, a daily vitamin, an iron supplment and some milk thistle. My Onc was ok with me taking these because I had been taking them before my chemo and she could track and see if any of my problems were related to those supplements that way. I have worn the caps a few times in between treatments: once when I had a fever (never rose to the level where I had to be hospitalized but it got close) and the caps helped to bring my temp down. I also used a cap when I had a headache last week - it didn't seem to help or hurt either way. I'm going to try to wear the caps between chemo sessions as suggested, so long as I'm feeling up to it.
0 -
mfm - the first chemo is the worst - and you are at the worst part of the first chemo. The side effects will likely start to ease up in a day or two.
Make notes of your side effects and be sure to tell your MO. Most of them can be managed so that you're not so uncomfortable.
0 -
Home from prophy MX Surgery this morning, in my own comfy bed eating ChickFilA soup. SO happy to have one more thing to cross off that "Kick Cancer's ASS to the Curb" list!!!!!!!
Mfm48-- sorry you are feeling crappy. I hope it passes really soon for you!
Murphy! I know you are rocking' that frozen head Popsicle look right this minute! Hope all is going smoothly.
Ann--is it you who started today too? Best of luck! If it's not and I am totally confusing this with another board....I blame the anesthesia :0)
Great day everybody!0 -
Rest up well, 4sewwhat! Good on you!
0 -
Sewwhat - speedy recovery to you.
Today, I'm 8 weeks pfc. Hard to believe it. 7 weeks since the shedding slowed and 6 weeks since shedding went back to normal. I was just looking at my hair and being so grateful. The regrowth is over an inch now and the only problem is it is trying to grow straight down and I need it up to help with volume. But my hair always was stubborn and it makes me happy it's on its way back.
Eyelashes are 1/4 inch long, brows barely need darkening now. Noticed today that the peach fuzz is back on my upper lip - didn't see that happeneing (maybe because I didn't want to see it!).
0 -
4sewwhat - congrats on your surgery! Like you said, one more step along the way!
I have not been able to wear the caps in between treatments. I know it's supposed to be good for us, but after 8 hours of them on chemo days, I don't want to see them again! LOL
shipsgirl - Yay on the new growth!
Saw my MO today. He is very nonchalant, but told me "Well, it looks like your hair is holding up. You'll be our first endorser." I guess that's as much enthusiasm as I'll get from him. :-) It was very windy when we were walking out to the car, and I told hubby that my hair does NOT need wind! He said, "I'll catch it if it blows away." Ha ha ha
0 -
HI Cold Cappers!
It's been a while since I posted - mostly as I got started then chemo, running my small business and other crises sapped my energy for posting. I just wanted to let you know that I finished my 4th and final treatment last Thursday and shipped the Penguin caps back today! Wow - hard to comprehend I made it through.. and so did most of my hair! It's definitely looked better - in dire need of color on the gray roots and a decent cut - so straggly.. but it's there!! Some very thin spots over my ears and I think my glasses did that as I have metal frames and they may have gotten warm. But I'm NOT bald and I'm so very, very grateful to the caps and to those of you who helped when I was so scared and confused. THANK YOU!
Next step is lumpectomy Oct 16 and lymph node removal TBD. Worried about lymphedema..guess that forum is my next stop. But thanks and good health to all of you!! Hugs and love
0 -
Congrats Portlandlady! Best of luck on your surgery.
Marsha0 -
PortlandLady
Congrats on graduation yesterday! My hair has thinned too but it's there and I washed last night, had very minimal shedding, and I found Babies only 5 weeks PFC. Yours will be growing in no time!
I had my prophy MX today and asked for a paper cap instead of the thermal one! Told them I didn't want to keep my head warm!( had the original bad one done in may pre chemo)
Don't know if you can blame your glasses. Most of us shed over the ears. I started thinking, which usually causes trouble, btw. But I sleep on my sides with my satin pillowcases. I think that body heat and no ventilation between head and pillow causes it. I could be totally off my rocker though. That's happened a time or two :0)0 -
Portlandlady congrats on finishing- with hair!!! It all goes by in a blur doesn't it?
Current cappers- you will get there. Be good to yourselves. If there was ever a time to pamper yourselves- this is it!
Hugs to all and good luck with minimal shedding and quick recovery wishes0 -
I didn't lose any hair over my ears and I think that was because I used the extra gel straps. My helper wrapped them around my head just below the cold caps to be sure every hair was covered and cold as I have a big head and the caps did not quite cover everything.
0 -
Just got back from my radiation mapping. I was laying on the CT scan table and the doctor walked in. First thing she said is "did you cap?". She said she knew I either did something or finished chemo a long time ago and my hair looked thick!
Went to my foot doc the other day and he said "you have your hair!". When I was in a cast and first told him I had BC he came over and felt my head like he was measuring it and told me I had a great shaped head and would look beautiful without hair. I told him I didn't plan to find out and I was keeping my hair. He looked skeptical but didn't say anything. So when I saw him a couple of days ago he was surprised it was still there. Then he came really close to look at it, got a big smile and said "you need to color it!". Smart ass! Told him so too :0)
Slowly the word is getting around about the caps!0 -
Hi everyone. Talk me off of the ledge here.... Just wanted to check in and ask about the dreaded shedding. I am day 22 which I know is when it really gets into full swing..... How much is too much? I expected to shed, but I didn't expect the hair to come out so easily. I know we have to baby our hair and the follicles are weak so maybe it's normal..... I'm just so afraid that I'm waiting for the other shoe to drop and my hair is going to be gone. I have done two AC treatments and I haven't lost a lot of hair so far (maybe a little more each day than I would find in the shower drain).... But like right now if I were to run my fingers through it, quite a bit would come out. I just washed it for the first time since Sunday, and I really haven't done anything to it other than spritz it with spray in conditioner and half-heartedly comb it all week, so I was afraid I would take the towel off and be bald! LOL. I wasn't, of course. I know I'm probably not making much sense, but I guess I didn't think babying my hair would really mean BABYING my hair or else it will come out. I kind of expected to lose some with the remaining hair sticking strong, not barely hanging on. Does that make sense? Am I doomed or is this normal? Once you start shedding, does it ever slow down again or is it a downhill slide now?
0 -
I think with most people the shedding is like peaks and valleys. I did shed all through chemo and after but sometimes it was lighter and sometimes it was heavier. I remember being on the ledge....try to hang in there!!!
0 -
Lighthouse - Do your best to keep your fingers out of your hair, don't put it into a pony tail, and no clips. Do not put any stress on it that you can possibly avoid. It is VERY fragile at this point. The oldest hairs will shed and fall out as they are the weakest. You do not want to do anything to dislodge any of the other hairs. Pat diluted shampoo on and pat it through it gently, do not scrub or rub as you usually would do. Rinse gently. Use a satin pillow case. I would arrange my long hair going upward across the pillow when I went to sleep so that I would not be sleeping on it.
Shedding usually starts between the 18th and 21st days, according to my very experienced breast cancer center with about 50 cold cappers to its credit. Mine certainly did. My heaviest shedding occurred between my second and third treatments, or between 3 - 6 weeks after my first treatment. It let up after that, but did not stop. I shed fairly steadily throughout chemo.
0 -
I concur! Shedding was up and down. Mine was worst between days 20-35. I was afraid to touch my hair because something always fell out and you cant feel it. Everyday was tense for a while. My treatments were Tuesdays and it seemed like the heaviest sheds were the following Sunday and Monday.
shipsgirl posted recently a very detailed description of her hair journey. She did ACT like you are and I think she is around 8 weeks PFC and said her hair is growing in quickly. Her post might be a good reference for you.
Back away from the ledge!!!!! Hang in there. You look like you have a ton of hair to start with. Praying and keeping good thoughts for you and your locks!0 -
Thank you experienced cappers!!!
I do have a ton of hair, and it's all different layer-lengths and thick, so even with what I've lost so far, you can't tell at all. I am just thinking of the fact that I've only done 2 treatments and still have 6 to go and think YIKES! But I'm optimistic! I just wasn't prepared for all of my hair to be so fragile, but now that I know, I will be extra careful.
I already was being easy with it. I only wash 2x a week, and only pat the shampoo on, and not on my scalp. I rinsed it with the handheld shower head with the water only turned on a small bit so it didn't come out hard. I sleep with a satin pillowcase and with my crazy layers, a ponytail is out of the question anyway. I try not to touch it, but every time I see a flyaway hair I go to push it back and out it comes. Ugh. Realistically I know I am going to lose some hair, and on ACT, probably a lot of hair... but I'm determined to hang on to as much as I can!
I am so happy to be 3+ weeks into my chemo journey and still have a full head of hair. My MO is very nonchalant (and knew nothing about cold caps) but he told me yesterday that he hopes I can "be his first endorser". We shall see!
0 -
Lighthouse,
I can see your picture on the endorsement poster! At one point my scalp had icky build up. I actually found that if I could keep my scalp clean the shed was less. My hair is thinner and flatter now, not a lot of body or curl, but it is there! I think about 30% has shed. When I started capping I just figured the hair would stay. When it started shedding I started freaking! But I can tell by the ugly roots and my bangs, what stayed on my head grew the whole time and at 5 weeks pfc it is filling in already. Of course it is still shedding too.0 -
How do you get your scalp clean if you can't really clean it? LOL I know we're not supposed to disturb the hair follicles, and no scrubbing, etc. So what can I use to get my scalp clean?
0 -
Someone said to add cider vinegar to shampoo and I used organic shampoo with tea tree oil. Schoolmom said that might be an estrogen no no though. I haven't found anything about that yet, so I don't know but it works well. I also use a pick instead of comb. I switched because even the wide tooth comb seemed to be removing too much precious hair. I pat shampoo on from front towards the back because that was the natural way the hair seems to want to go. I very lightly run my fingertips through as close to perpendicular as I can get them so not to put too much drag on the hair. I have started using a neck pillow some too because between the heat in Atlanta and the mini flashes I get now my head always seems hot.
0
