Cold Caps Users Past and Present, to Save Hair
Comments
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I live in the Nashville area and will be getting treatment at Vanderbilt Breast Center so if there are any would be helpers out there I would be so grateful if you would get in touch with me...
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5 more days, I'm terrified!!!! Did any of you do the in between cold caps during the week? I'm do scared,I just want it to work.
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Hbb, I hope you have great results some lose hair whilst having chemo and others after. you will have most of your hair and it's better than none. I lost 60% of my hair and was very upset and wanted to give up. I'm glad I didn't as my hair started growing again 4 wks after last chemo. You can wear light hats to hide thining and patches, don't be too hard on yourself and go with the flow. As with all the treatment we have you can't change what is happening.
The only advice I have is, if you can stand it wear them as much as you can on the day.0 -
Ali, what regimen were you on? Did you wear the caps before, during, and four hours after your treatment? 60% seems like a lot to lose.
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I'm in England and used the machine so it was 30mins before chemo, whilst I was having FEC ( 5 ) or Taxotere(only 0ne bad SE) then 2 hrs after. First time I had it it was on for a lot longer due to complications with chemo.
I think I should have had it on a lot longer but that is all the time the nurses would give you.
I have heard from people that it hasn't worked well with the machine and they give up. Also it made me feel sick, very cold and very painfull. I think the caps work better and have better results.0 -
thank you so much for the clarification. I used to the caps half an hour before all during and for 4 hours . they were cooled with dry ice to negative 32 degrees celsius. I am hoping for the best.
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I think the caps have better results for sure, you will do better than me.
I have a short bob now and no patches even though it is very thin.0 -
hbb - I did not wear the caps in between treatments - didn't feel great, so I sure as heck wasn't going to push myself to do anything more! I know some women do. I'm not that motivated, LOL! I can't wait for you to get past the next couple days and your 2nd treatment so you can see - YES - you will keep your hair!!!! One question for you - you said wore the caps 30 min before chemo started - you are supposed to wear them 50 min before chemo starts. Just making sure you do that the next time...50 mins of pre-cooling required. Wishing you all the best!!!0
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I did not use caps in between as they belonged to my med onc office and I could not take them home at all.
I wish I were closer to Nashville...I would help in a heartbeat!!! My sister is the only family member (besides my DH) that helped me. The rest were all friends. I had more offers than I had chemos. People were very supportive......let your friends know. I am sure they will want to help. When people asked me how they could help I said I needed someone to go to chemo with me and DH. Everyone volunteered and took a day off work to go with us. I am very blessed....and thankful.
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To those who ask about wearing cold caps inbetween treatments: I took two caps home after my first session with the idea that I would use them inbetween, however I simply could not make myself use them. They are cold, really cold, and I just could not physically face putting them on - couldn't bring myself to even touch them, or look at them, is what I mean. I was very happy to return them when I went in for my second treatment and haven't bothered to bring any home since. I just use the caps on chemo day (three treatments so far).
I should add that my feelings about using the caps at home may be different than other people's. That's because during my first cold cap session my well meaning helper used them at 38º C which was way too cold, and I think caused me to have considerable swelling across my forehead and the whole top of my head which resulted in a week of unnecessary head discomfort and two spots of frost bite. Both frostbite spots peeled and flaked eventually and are a bit bald, though I can cover them with the rest of my hair.
I thought 38º C was too cold when she mentioned the temperature the caps were at, but as she had helped other ladies with cold caps before I assumed she knew more than I did. Also, by the time she told me their temp, I was flying high from pre-meds. Had I been "sober" I probably would have questioned it instead of nodding OK and wondering quietly about it. Afterwards, I checked with Geralyn who confirmed that I should have been at 32ºC, so that is where the caps have been in the following two treatments and I have had no more discomfort, swelling or frostbite.
Moral: read your protocol beforehand (I did), inform your helpers about it so they know it (I didn't)- and BRING IT WITH YOU for everyone's reference (I should have). I stupidly forgot to bring mine in my rush to pack up and go, so I blame myself for what happened that first time as I could have prevented it easily.
On the good side, I still have a head of hair, even though it has thinned over all quite a bit through shedding. I'd rather have thinner hair than be bald. But, I'll be damned if I put a cold cap on between treatments.
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hbb, I used the caps in between the first and second chemo, and not after that. As other ladies have stated, I just didn't want to look at them. I kept most of my hair, and had very little shedding. I am 4 months PFC, and no one would know that I underwent chemotherapy. I did a 5k yesterday for BC research, and the other survivors assumed that I had had BC years ago because my hair is so long! LOL You will do fine, and before you know it, you will be posting on here and helping those who come after you.
cwsterling, I wonder if it makes sense for you to start a new thread, asking for help with the cold caps? That might draw attention to your request. I know that if I was close I would absolutely help you, and I have to think that most of us who used the caps would love to help.
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LOL Hortense, I so agree with your post. Even though I am THRILLED to have my hair and THRILLED cold caps did that for me, no way was I gonna put myself through any other discomfort while already suffering miserable chemo side effects between treatments. No way!
On the subject of frostbite, this last treatment I did not put the moleskin close enough to my hair line in one small area near my temple. The area did suffer frostbite (I couldn't feel it!) - so have your helper check your skin very closely between cap changes and make sure you get close enough to your hair line! I kept it farther away b/c on prior sessions I had the worst time getting the moleskin off of my forehead without pulling out some scalp hair. Yikes!
I am now almost 2 weeks post and still have a small brown area on the area of skin that was frostbitten. I do not know if it will ever become normal skin color again - looks like an old burn scar. Thankfully, it can be covered by hair or makeup. Just a warning to others though to be very careful - frostbite CAN happen.
hbb - wish I lived closer, too. Just too far away for me to even make a day trip feasible.
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Thanks everybody for your encouragement. These last couple days before tx2 are sooooo nerve wracking! I know that once I get past this and see that I have not lost my hair the following treatments will be no problem mentally. The shedding just started, random hairs on my clothes all day but only here and there. Still terrifying though!!!!!!
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Hi,
Could you tell me how you got through the 4 Taxols? I finished the AC on Friday, but I am nauseous just thinking about putting on the caps for the long day of Taxol. Did you do anything for pain relief? I find the caps much colder now that my hair has thinned. The second cap was almost unbearable this last time. Has anyone out there used a thin cap on top of the hair while your hair was thin?
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renee - it really shouldn't hurt. Ok, the first two are REALLY cold and uncomfortable, but not painful. I would email or call Geralyn and ask if you could raise the temperature of your caps now that your hair is thinner.
Many women take Tylenol or Ativan prior to treatments, but I did not find it necessary.
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I mailed my caps back on Saturday. Afterwards DH and I high-fived each other. Mission accomplished!!! What a great feeling!
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Way to go Dance!! What a wonderful feeling it is 0
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That's awesome dance. I can't wait to be in your shoes!
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@reneerodin-I always recommend to the women whom I help with the caps to take a pain reliever at least 1 hour prior to wearing the caps. You want to ensure that it will be in your system by the time you put on your first cap. It helps to take the edge off. You can take it when leaving the house. Some of the pain relievers that have been used are:
Tylenol, Ibuprofen, Vicodin, Percoset.
Ativan is NOT a pain reliever, although it does help with nausea.I will post this on the cold cap website which I have designed for users to find all pertinent information and to simplify the entire process. http://www.penguincoldcap.net/
@dancetrancer-Yipee Ky Ya!!! You made it! Do you remember how vastly different you felt at the beginning of this?
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makingway, I took an Alieve about half an hour before the first cap and it lasted all day. That is great that you designed a place for new users!
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My pre meds included Tylenol and they told me not to take extra so check with the chemo staff before your appt.
Three more says till D Day. Today is wash day and I'm so scared. I know I'll keep my hair it's just so terrifying!!
Question for those tch users. Did you all stop your period immediately and did it return?0 -
Congrats dance.......so happy for you. I am six weeks pfc and I feel great physically.
I am still shedding which is discouraging. I am taking iron, silica and biotin. I hope it stops soon. I lost the most after the last tx.
Experts out there what about eyelashes and brows? I lost some, have some large holes in the brows, but I also think I see new growth as I am in the mirror constantly.....lol....
Will they completely fall out?0 -
My periods stopped after third chemo and nothing since. ( 7weeks since last chemo) I lost all brows and lashes after second chemo and now growing back.
I was in terrible pain with cold cap but never got frost bite, was told not to take pain killers as the were watching you while having chemo.0 -
Oh yes, I surely do remember makingway! I was petrified!!! So all you newbies...take heart...it's normal to be petrified and scared as you go along...it gets better and then you'll see you saved your hair and will be doing the HIGH 5 HAIR DANCE just like me!
hbb, I replied about the period on the TCH thread. I'm washing today, too...here's to minimal shedding for both of us!
Don't be surprised if you notice more today - the last wash before my 2nd TCH is when I noticed my shedding start. Better to be mentally prepared! leveled - my most recent wash (after my 4th TCH) I do believe I lost the most, too, of all my washes. We'll see what happens today. Even if I lose a bunch, I am WAY ahead of the game compared to no hair at all. Staying positive!
Thanks all for all of the congrats!
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Dance,I survived the wash, physically and emotionally (lol) with minimal shedding. I'm starting to feel a little bit more confident. Now if I can just make it past tx2 I will be over the hump!!
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Well ladies, the day has finally come when I can say the following: I am 5 months PFC and I've finally stopped shedding!!! Woo HOO!
I started shedding around day 20 after first chemo, (Nov 29, 2011) and didn't stop until recently. So in all, that's 6 months of shedding. Heaven knows that there were many times when I thought it would all fall out. I had some very dark days of worry, panic and TEARS as I had big sheds after each chemo and constant shedding throughout. I have fine textured hair and it's thick (was). Some say that those who start with thick hair, lose more. I think I've lost 1/3 to 1/2 of my hair. It seems shocking to realize that. My hair is very thin in comparison to what it was in the beginning, but as I notice other women in public, I see women with less/thinner hair than I have. I guess its all relative to what you are used to. No one can tell I've had chemo.
I cut and colored my hair 2 weeks ago with a semi permanent color, with no ill effect. My hair stylist noted that the hair along the sides of my head and around my face is the most thin. I have new hair growing in all over my head, and its funny to see me in a pony tail with the fringe sticking out everywhere. I have an area along the nape of my neck where i lost hair on the first chemo. I don't think it was covered by the cold caps. Regrowth started during chemo and its growing in very fuzzy/curly. It's about 2.5 inches long now.
All in all, I'm very grateful and happy that I had the option to use cold caps. I won't sugar coat things and tell you it was easy (it wasn't impossible, but it was challenging at times) but I will tell you it was WORTH IT! This is how I viewed the extra work: Basically, for wearing the cold caps for approximately 32 hours (I had TC x 4), and keeping a modified wash/hair care routine for 6 months, I avoided baldness from chemo. I know the other ladies in my chemo group (who are now just feeling confident to go without their wigs and have about .5 inch hair growth) all have said hair loss has been the hardest thing about getting through chemo.
Thank you to the cold cap veterans who talked me down when I was having bad days of fear and worry. Everyone said, "Don't worry, you will have hair in the end" That didn't seem like much solace during my panic (LOL), but they were right. I have hair in the end. Just know that if you are reading this and you are shedding heavily, I feel ya sister. I know your fear and worry. You think that you will be the one for whom it doesn't work, and you will end up bald. Or you will end up with hair so thin that you will need a wig. I've noticed the new hair growth is giving my thinner hair some lift at the roots, so my hair is looking thicker lately. Also, getting rid of the gray made it appear fuller.
I'm sending out my love and support to everyone currently going through the process. I can hardly believe I can say I'm done, that I've stopped shedding, but I have! Hooray!! I think its important that women understand that while they will have hair in the end, it won't be like the head of hair they started with. I didn't really understand that going in. It's not bad, its just different (thinner with all this new shorter hair growing in all over my scalp). It's a mystery who will shed more or who sheds less. It's very worrisome if you are one of the ones who sheds a lot. I'm here to tell you that you will make it to the end, and you will be grateful, SO GRATEFUL, for the hair you end up with. I AM!
Keep on keeping on Ladies!
xoxo,
LisaEdited to add photo (last weekend at my 30th HS reunion)
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Yay hbb!!! I survived my wash, too! Had less shedding than my last wash, so I'm psyched!!! Will be so happy for you to get "over the hump"!!
lisa! Thank you so much for your very inspiring post! Woo-hoo!!!! So happy for you to be done shedding!!! Awesome, awesome! All the hard work is definitely worth it to me, too!
Just now saw the pic you added - you and your hair, of course, look fantastic!!! Huge congrats!
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It's probably from the steroids. I had it really bad after round 1. I got a prescription for topical clindamycin( Cleocin T ). And it cleared right up. No pimples after round 2!
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Lisa you look fantastic! Can't believe you lost 1/3 to 1/2 of your hair, doesn't look like you have lost a single hair.
Leveled, My brows and lashes thinned A LOT, but I never lost them.
Hbb, I'm a TCH user. My period didn't come back, but they had actually stopped 4 months before chemo. Try posting your question on the TCH thread.
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What a great and inspiring story Leesa. especially the part about thinking you are the one person it won't work for; that thought definitely crosses my mind. I can't say enough how much this site and you women have helped me already and I'm not even at TX2 yet!
Thank you!
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