Cold Caps Users Past and Present, to Save Hair
Comments
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tmb - CONGRATULATIONS! I know it must be a relief to get that first one over with.
sciencegal - a big CONGRATULATIONS to you too. Wishing you the best with your exchange - you're gonna look and feel great.
Kay
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Well I think I made it to the other side of my 3rd infusion. It's day 9 and I am starting to feel like me again. And I still have my hair. My whole head feels tingly all the time; that feeling when you've had a tight ponytail for a while and take it out. But the shedding hasn't increased since the last infusion. Just the same handful each day.
Today I will (finally) wash it. It seems like forever since I last washed it but I just haven't felt up to it. I'm a little nervous. It's like I'm afraid to touch it a set off a massive shed.
Curly, I can't believe you wear the caps for 7 hours post infusion! I thought my 5 hours was hard enough. You are truly a warrior.
I had an opportunity to spread the cold cap word yesterday. I'm a Marriage Commissioner. When I started chemo, I cancelled all my upcoming weddings and referred everyone to other people. I just didn't know what to expect and didn't think it was fair to "wait and see". One man recently wrote and told me that he's a med student in the US and his specialty is going to be Oncology. Fabulous. I wrote back and thanked him and told him about what a difference the cold caps have made for me etc etc. I figured if he started out knowing about them, he can make a big difference for people.
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Thanks to everyone for the encouragment and advice! Really tired today, but getting through. Will probably wash my hair sunday. Thanks again!!!
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Hello from the "squishy side". It is great to get that Tissue expander OUT! I was expanded to 650ccs and it was so heavy, and seemed like it was up around my neck, they had it riding so high. The implant already feels much, much better the next morningand is a more normal size for me (500ccs).
My surgical and anesthesia team members were all amazed that I still have my long hair, knowing that I have been through chemo recently. so I got to "spread the word" also. I really wish all women could be informed about the caps, to know that they do have options. I heard about it from a sister of a friend, and then learned all about the caps from this site. Certiainly not my medical team!
I am feeling great on the pain pills this Am and feeling even more like "me". This is a tough journey through which we are all going, but I really think it helps to have our hair, and our privacy.
Hang in there, girls who are going through the capping procedure right now. It will be over before you know it, and is so worth it.0 -
great news shipsgirl and glad you're feeling a little more like yourself again. hang in there!
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Leslievilla - I use liquid silica in the form of Biosil which I get on Amazon. You simply put five drops into a bit of juice each am and pm. Liquid silica has been clinically proven to help thicken hair growth and the diameter of the hair strands. It is more easily absorbed than capsule silica.
I can tell you that my hair salon is amazed by how well my hair is growing and is now recommending BioSil to other ladies. I also take Biotin and Iron to support hair growth.
During chemo I took Vitamin B and also L-Glutamin to help prevent neuropathy.
Be sure to ice your nails to protect them.
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Leslie, I hope Friday went well and you're doing well today.
As I may have mentioned I have bangs which are so hard to tame without heat styling! It's been rough. I'm 2 weeks from my final chemo and wanted to share that for the past few weeks I have washed my bangs only almost daily. I put my hair in a shower cap but leave my bangs out. I use the hand held shower on cold water and wash them, then blow dry on cold with a round brush. I haven't seen any more shedding in my bang area-in fact I have trimmed them 3 times during treatment.
I'm not saying we should all wash daily, but Geralyn did tell me I could wash every 2-3 days on non-chemo weeks. I have been going every 2 days with no additional shedding. I think someone on here said it best when she said to pay attention to your hair and be as gentle as you can based on how it is doing. When I was shedding like crazy after treatment #2 I hardly washed my hair at all. (By the way I think it should be called "sliding". My hair just slides off a little more than normal. Haha!)
On chemo week I'm very strict about not washing all week. I don't think we should all start washing more often, I just thought it has been an interesting experiment with my bangs that I would share.
Also, I've had no takers in the Bay Area for my supplies, so I'm happy to ship all but the coolers if anyone can use them. Please see my post on 5/20.
Hope you all have a great weekend !0 -
I have an electric blanket that someone might need to go along with SuzieQ's supplies.
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How is everyone doing today?
Sunday is often the stressful hair washing day for many of us (I just finished mine), so I am sending out healing thoughts for minimal shedding to all.0 -
You're right sciencegirl. Sunday is stressful hair washing day for me. Haven't done it yet today. Although I must say I'm feeling much more confident that the caps are working. My 3rd of 4 TC's is coming up on Thursday this week. So far, I've only noticed shedding when I comb my hair. It's definitely more shedding than normal, but not alarming. I'd estimate that I still have 95% of my hair at this point. I'm still bracing myself for the big shed that so many of you have experienced. Hope everyone is able to enjoy this holiday weekend.
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My hair has suddenly started shedding more. This morning it is quite a lot - and I haven't washed it yet today. But I have very thick hair and I have to say that even I can't feel that it's thinner. It certainly doesn't look thinner.
I have one more AC treatment before I switch to T. I believe that the T treatment is a little less challenging so I hope I can make it through.
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JC and shipsgirl- you are both right in the phase where maximum shedding can happen. For me, that was the worst time (about month after starting chemo- in the weeks after the second infusion). But it slowed down after that and my coverage was okay in the end. The shedding was even, and just the older hairs I guess.
Hang in there, take care of yourselves, rest and please think positive thoughts - all the way through to your follicles. Good luck!!!!0 -
I just found out about the cold caps this past Thursday from my radiation oncologist (2nd opinion). I had the caps expressed shipped bc my first treatment starts this Weds. I am so overwhelmed by all the instructions ... Seems like a lot to ask of my friends. The other thing that worries me is that my hair is curly and frizzy. Since we cant cut our hair, use products, including a blow dryer, hair tie, hat, etc. I am concerned that my natural hair will make me feel worse than wearing a wig with all the heat and humidity of the summer months??
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Sciencegal - thanks for the cheerleading. Long day indeed, but worth it of course. #4 is this Thurs; I seem to dread them more and more each time. 2 more after this one. Hope the hair stays in tact. Definitely thinner; today was hair wash day...they always get me down. I try to remember it puffs up once dry, but boy do i miss my thick locks. Wish this stuff was done already. Glad to hear you are doing so well!!!!
Shipsgirl - sorry to hear you had more shedding, but the good news is no one can tell, as you said. Keep it up!
tmb - way to go on getting the first one done. That is the most stressful one, since you don't know what to expect. I found #2 to go way smoother since you know what you are doing at that point.
Hortense - did you take Biosil during chemo? They didn't tell me yes or no, just said they didn't know anything about it. I took a few pills, then decided not to as I sure don't want to spoil the impact of the chemo. it is something i am thinking of taking once done.
Loistree - I have thick curly hair; not so thick now, but still covering my head. I found that my hair got used to the change in regimen. The beginning - it felt like straw and so gross to the touch, but after a while, it softened and the frizz actually isn't that bad. I use product all over except the roots, which helps to tame it. I use leave in conditioner just on hair wash days. On days when i am not thrilled with how it looks, i put it in a loose ponytail and it is fine. I keep telling myself bad hair is better than no hair. Good luck and let us know how it goes! PM me if you need specific curly hair advice. I find that you have to take the instructions with a grain of salt when you have curly hair because they are more geared to straight hair. Curly hair has it's own mind!
curly0 -
Hi Loistree,
Welcome to this thread and to usng coldcaps. There are lots of experienced girls here who can help you, as they helped me through my journey.
You may have bad hair days, but those are temporary and better than no hair days. It is hard to picture now, as you are starting out, but chemo will be over before you know it and you will be looking back- with hair!
The scalp changes and the bad hair days are different than you might expect. Maybe not so bad. My hair really did not get oily. when I didnt want to brush it between shampoos, I did wear a silky "kerchief" scarf a few times to work, tied loosely. That did not seem to hurt anything.
It is a lot to ask friends but people want to help us and dont know what to do. This is so much better than flowers- it is a big wonderful tangible thing they can do for you. Let them do it!
I would advise practicing once before you freeze the caps. It is important to learn how to put them on, avoiding the velcro.
Just follow the instructions and you will be okay! Those printed instructions became our bible during the first few "penguin parties".
GOOD luck. We are here, if you have specific questions.0 -
Curly,
So you did use products on your hair? If I use some anti-frizz product, I should be ok.0 -
Welcome Loistree. I'm currently using the caps and I am about six weeks ahead of you. There are also several other women on this forum currently using the caps as well as many who are past their cap days but generously stick around to offer tips and encouragement. This forum has been a huge help to me. Keep the questions coming- we want to help.
One thing to remember is to take some kind of pain reliever about an hour before your first cap. The first cap is very cold, but stick with it because it gets better in about 5 minutes and then your scalp is numb. I take an ativan (I asked my oncologist for a prescription) and two aleve. Others have taken different pain relief combinations and I'm sure they will chime in.
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Loistree, just make sure the products you use are parabin and sulphate free, similar to the shampoo/conditioner you use. Then you should be fine. Also make sure you change your deoderant to a non-aluminum deoderant asap. I actually read through most of this board prior to starting chemo to make sure i knew as much as i could. Also ask your PCC rep any questions you have to make sure you follow their guidelines as much as you can.
I will tell you one thing. I hear they have been telling curly haired ladies to comb their hair prior to washing. I would highly recommend you DON'T do that. Again, i have very curly hair. I would guess doing that would make you lose way more. Those of us with curly hair know we can't comb through with a regular comb when the hair is dry or you will break healthy hair (that isn't subject to chemo). I only comb through when it is wet. On wash days, i do a full comb through...and am not thrilled with the shed. On non wash days, i comb through with my fingers and where there are tangles, I use a wide tooth pic to get through the tangles. I wet that hair and I use a detangler to help get through them. I have never had tangles the way i do now, but it's all part of the new regimen. Just be gentle. I also will tell you, as soon as you see a tangle, try to get it out as it will recruit other good hair and simply tangle even more.
good luck!
curly0 -
My update after 3 TC and PCC - definitely more shedding than I hoped but it seems as though it only lasts about 2 or 3 days then tapers off. I am shampooing only 2 times a week and I can see hair growth in that my roots are about 3/4 inch long - the time I would be at my hair dresser getting an overall touch up but will avoid until this is over. I think I heard about 6 months post-chemo. Yikes I hope I can last that long. I had a hiccup with coldcaps last chemo in that most weren't chilled to the proper temp only got to -20 below...I hope that isn't the cause of this latest shed. Anyway, people who see me have no idea I'm going through chemo. My hair looks healthy and I do too. For that I am grateful.
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curley123 - My onc would not let me take silica during chemo, so I started right after it ended. It's easy, just five drops in a quarter cup of juice to mask its flavor - which I find sort of fishy when I have tasted it. I use strong flavored juices like pomegranate, cherry, currant or mango. I drink it down then add water to the glass to be sure none is left behind and use it to take my morning vitamins and meds.
I went to a large cocktail party last night and so many people remarked about how thick and healthy my hair was, most had no idea I had finished chemo ten months ago. I just kept remembering going to the same party last year, not long after my second chemo, and feeling so tired and conscious of how ashen and drawn I looked. It is really nice to feel well and healthy again and to look more like myself. I even dared to wear a new pair of fabulous 4" bright blue heels - I could never have done that last year!
Here's to all of us returning to health!
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Loistree, welcome. AmyQ, I'm thrilled that you are "only" shedding after your big concerns with the cap temps. That is fabulous news. Hortense, we all look forward to wearing 4" bright blue shoes again (metaphorically speaking). Yay for you!!!
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Leslie,
Penguin recommended that I wear the caps for 4 hours post treatment. My center said two seems to be enough. I am doing two and I have had my third weekly taxol and carboplatin treatment of 12 last thursday So far, so good. Fingers crossed.0 -
Debwarrior, if I may ask...
How long is the total time of your infusion? I'm starting the caps in a week and have also been instructed to leave them on for four hours post treatment.
So glad things are going well so far.
Kay
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Hortense- awesome about the heels! those sound killer. There is a cool thread "retail therapy" about purchases like that which make us feel good again and like we are "back out there" living our lives again- both during and after chemo - your heels definitely count!
Hang in there girls, it is such a hassle and so scary going through the cap regimens and the "big sheds" but we have over 100,000 hairs on our heads, as i was told on this board, so we can lose quite a few without it being noticeable.
I have the day off after my exchange surgery and will do another big hair wash this AM- I am still being gentle/careful three months out from chemo - but washing the hair once again in a regular warm shower, it really is great. I only see a couple of hairs in the strainer at this point.
I get to see an old friend this afternoon and I doubt he will have any idea what I have been through, most do not.
That's the goal!0 -
Had my first round of chemo and cold cap on Friday. Cold cap wan't bad at all but got very i'll on Sunday and after the nuelasta shot I was in bed all day still having a terrible time this mornign head hurts so bad can't sit up ugg i don't know If i'm going to make it though another one
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Hi Leslie,
I am so sorry you are feeling so bad after your first round of chemo. You WILL make it through, and your hair is beautiful and worth saving.
I had horrible migraines from the Zofran. This is the mainstay anti-nausea drug. headaches are a big side effect for many. I switched to compazine, taking it round the clock for the week post-chemo and had no nausea or headaches on that.
I still got the IV Zofran with my chemo infusion because it worked so well, then would wake up the next morning with a headache, and take tylenol for that and switch over to the compazine.
As far as I know these side effects are all from the chemo, not the cold caps. I found the whole capping process a good distraction from dwelling on the nasty drugs going into me.
I sure hope you can find the meds that manage your symptoms and can feel better soon! The first two rounds are bad while you are figuring everything out, it gets better once you have the chemo/medication regimen worked out.0 -
Leslie, I did not have Neulasta shots, but I've read that others who did were told to take Claritin (an over-the-counter allergy med) to help with pain caused by Neulasta. I think if you do a search on this site you can find out how much and when to take Claritin, or maybe a fellow cold-capper can chime in. For headaches I got permission from my oncologist to take Excedrin, which is the only thing that works for me. I think aspirin (contained in Excedrin) is generally a no-no on chemo, so do ask before taking it. I actually had very few headaches during chemo - fewer than normal, for some reason.
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Leslie - found this on another board regarding Claritin, and since I don't know how to link to a particular post, I copied and pasted the relevant part:
"FOR THOSE GETTING A NEULASTA SHOT AFTER YOUR ROUND OF CHEMO:
You may want to try taking regular 24 hour Claritin to help with the bone pain that may accompany the Neulasta shot. There is an ongoing clinical trial evaluating Claritin to prevent the bone pain. Here is the link: (clinicaltrials.gov/ct2/show/NC...)
According to the clinical trial, one takes the Claritin (10 mg) once a day for 7 days beginning the day of the Neulasta treatment.
I had my first Neulasta shot with my 3rd round of Cytoxan/Taxotere and took the Claritin. I did not experience any bone pain. The Claritin doesn't help everyone but it is worth a try since from my understanding the bone pain may be intense. Just remember to ask your onco about trying the Claritin before you take it."
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I did not take Claritin on my first chemo and the bone pain was horrible! After that I took it and the pain was much, much less....I just had a lot of aches. I would definately take Claratin!
I also wore the caps for 4 hours after chemo. It's not fun but worth it to have a full head of hair! Hang in there newbies! The caps work!
My hair is frizzy and wavy but it does not get tangled easily. I used some of Aveda's Be Curly on my hair when I air dried it. I just avoided getting anything on my roots/scalp. I also combed my hair with a wide tooth comb before washing it because it was not really tangled.
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Dr visit in prep for chemo #4. She appeared to be unimpressed by my still-present locks, but she's a bit of a cold fish so it's hard to tell. She didn't mention it until I did, but then she did ask some questions. She said that it would be difficult if a lot of people were cold capping because the chemo centre is fully booked every day. I didn't go into the idea of getting a freezer for caps etc etc.
She did seem interested that my dry ice supplier is giving me a very generous discount because my caps are for chemo. That seemed to warm her up a bit and her parting comment was that I'm a trail blazer. That was encouraging.
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