Cold Caps Users Past and Present, to Save Hair
Comments
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Brax - did you have to have your dry ice shipped? Oh boy, I have no idea and lots of learning to do. I'm afraid to ask what the air shipping would be...eeeks...I really gotta get on this tomorrow! Hope my onc's nurse calls me back before it is too late to get this done in time. How long did fedx ground take to ship?
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dancetrancer...I pick up my dry ice. My shipping although it was only four weeks ago, I can't remember exactly but somewhere between $40 - 60 something? You really do need to work fast because I want to say my caps were shipped out on a Thursday (possibly a Friday) from Michigan and I received them on a Tuesday. My treatment was supposed to start that Wednesday, but was then delayed till Friday. But, before anything can ship there is lots you have to do. The rep will send you a detailed letter of everything she needs you to do you will have to act quick because the main office is in London and Geralyn (the rep) needs their approval before shipping and I don't know what their time is compared to ours. Also, the day I contacted Geralyn and said it's sooner than later she had unexpected orders and not enought caps to go around which is why they almost had to ship them from California.
It is a lot to do, but it is definitely doable You might have to make adjustment with start date for shipping time though. If you decide to move forward, the support you will get from the people on this thread is priceless.
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Well I guess I will call again early in the morning - but all I got today was a voicemail. Is there some way I can get through to someone more efficiently?
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I will send you a PM.
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Regarding getting herceptin- my clinic accomodated my request to give it to me last so I did not have to wear the caps as long. I would not think it would make any difference if you got it at beginning or end. Rigid thinking by some, so sad!
I just got my hair cut again for the second time since chemo. It has been 6 months PFC and I have little fuzzy 2 inch bangs where the caps did not touch along my hairline. Everyone says how great my hair looks, thick in decent condition, shoulder length. I am so glad I did caps. Hang in there everyone
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brax,You really need to contact someone higher up about the Herceptin. I think most oncs give it last anyway. Mine did. That nurse sounds like a bully. She likes to flaunt her power. If it was me, I would go elsewhere. I would not put up with an uncooperative staff. You need support and good feelings from your center.0
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Brax, I would really consider going somewhere else to get your treatments. That is very inconsiderate of them to be so rigid when you are trying to do something that is important to you. It's like they want to inconvenience you in order to use the caps. Are there other infusion centers in your area? I would also let your onc know you don't appreciate being treated this way when they are getting thousands of dollars for every treatment you receive.
It has been 80 degrees here in MI for the last few days (unheard of in March!). I have continued to wear my hair down (as I do everyday) since I was told that we should not be pulling our hair back in ponytails in order not to pull/stress our hair. Well in this heat, it is unbearable. My poor neck and back are sweating. The bright side is at least I have hair. But I am so happy I did most of my chemo in the winter. Wouldn't know what to do if I used the caps in the summer. I wouldn't even know what to wear. I usually layer up and wear sweats when I go to treatments in order to stay warm during the caps.
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Brax, what's the issue with the Herceptin and timing??? I tried to look back through old posts but couldn't figure it out. I need to know what I need to discuss with my onc regarding this (IF he even approves this).
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Congrats to you Susan! You are always so upbeat and a big source of help and support.
Brax, my hairdressers tell me the same thing. Fine hair but lots of it. That's why I switched to the thick hair regimen.
I am looking forward to my hair starting to fill in and to be at a time when I can cut it. It is scraggly on the ends. I have started putting it back with a little clip so not so noticeable. Luckily it is still full in front. Just thinned throughout mainly. For those who are done with chemo, did you wait a full three months to cut your hair? Geralyn reccomended that as cutting would waken the roots and said not to do it too soon. I know this was discussed, I'll have to look back a bit. She also said just a haircolor with no ammonia or peroxide would be fine.
My surgeon was so impressed with my head of hair after chemo that she has asked for brochures and wants to raise money for a freezer! I'm so glad women will not be kept in the dark any longer at my hospital.
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dancetrancer, The caps schedule is usually 50 min. before chemo, during chemo, and 4 hours after. Usually the T is given first, then the C, and H is given last. Since H is not chemo, you can start counting your 4 hours of post cap time as soon as you are done getting C. In other words, you can include the time you are getting H in your post cap time. Brax's nurse is being a #$*#^, and telling her that they will not give her H last. This will make Brax have to wear the caps much longer than she should have to.
Don't let her bully you brax!
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Marie3, That is awesome that your surgeon wants to spread the word about the caps, and wants to get a freezer! Did you know that Rapunzel will donate a freezer?
I didn't know about the 3 month rule on getting my hair cut. OOPS! I got mine trimmed after about a month with no ill effects, thank goodness.
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Laura, thank you for the explanation. I'm a complete newbie on the chemo/cold cap side. Brax, have you asked your doc about the order of the infusion? If he/she concurs to doing Herceptin last, and writes it that way as an order, the nurse has no choice but to follow his/her orders.
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Hi Ladies: I completed my second treatment with the machine. All was going well until right near the end of the chemo, I happened to look at the machine and it was off. I freaked!!!! I took the batteries out and exchanged them wit fresh...still nothing. I took the batteries out again and redid them...still nothing. I'm panicking now!! Finally, on the 4th try, after a deep breath, it started working again. I figure I lost at least 20 minutes during this debacle. I called Geralyn...she said that the cap should have stayed cold for that time and that I'll be alright. I don't now. I pray that this does not have a major impact. Other than that, all was well. I'm sitting at home relaxing now. One of the nurses (bless her heart) ran to Walgreens and picked me up some regular batteries to keep for backup. She wouldn't tell me how much they cost so I'm gonna get her something nice and give her some money too as she did not have to do that.
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tc, that nurse is a sweetheart! I love good nurses, they make all the difference in the world.
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In regards to the order of the herceptin and all...I happen to chat with my sister today. She is a chemo infusion nurse at an NCI in Michigan. She said that NCI's have a particular protocol they have to follow. SHe said it may not be up to the nurse to decide. I understand completely about cold caps because I used them and I would be mad too but she may not have a choice. Apparently the NCI's are held to a much different standard than other cancer centers. FYI. I know it doesn't help solve your problem though....
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That may be it, my center has the NCI designation. But you know why couldn't someone say, we are an NCI and that means...instead they say something to the effect that they are following the protocol from ... which I take to mean that the other hospitals are not. Almost like we're doing it right and everyone else is wrong. How could someone accept that as an answer. Maybe I'm getting carried away but I wanted to say okay, so all these hospitals are putting these patients in jeopardy for doing herceptin last. I never asked what the protocol was I asked if there was a medical reason why I could not receive the Herceptin last. Hmmm, I wonder if NCI's have problems with icing hands and feet and chewing it. When the shift changed some comments were being made and the ice got the blame for my BP going up. I was also asked why I was icing my hands and feet. I'm hoping it doesn't come up again.
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TC, glad to hear everything will be okay and what a sweet nurse!
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Thanks Brax & dancetrancer.
Brax, I would definitely keep questioning the reason for not doing Herceptin last. I am not a Dr. but it does not make any sense to me. The nurses looked at me funny too when I brought in my gallon jug of water. I asked the nurse if there is something WRONG with drinking water and she was like, "Oh no, it's just that most people don't do it". Well, I am doing it. And you continue on with your icing too until someone gives you a clear documented reason why you should not. I sucked on ice cubes this time due to your comments. The nurses didn't even notice.
Oh I did have a lady stop by my little cube (I am a little separate from the regular chemo room) to ask me about cold caps. I told her that they were working great so far for me. She had a pamphlet. The word is definitely spreading.
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My doc approved me trying the cold caps this morning - wahoo! I have my order in, just waiting for the shipping to be arranged. I'm so excited to try this. It gives me some hope and control over a situation that has been very out of my control. I'm sure you all can relate. Even if it doesn't work for me, at least I will have known I tried. I have very fine hair that is thin, and I already shed A LOT. So I don't know if I'm a good candidate or not, but we'll see!
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P.S. Is there anything I can be doing NOW, before chemo starts, to help my hair? Oh and I read the brochure from cold caps, and saw several shampoo recommendations...what do you all recommend?
Unfortunately I just had my hair dyed and cut on 3/17/12. The good thing is the dye was just a clear glaze - PM Shine by Paul Mitchell. I called my stylist, and she said it is very gentle and has very little ammonia in it and no peroxide. So odds are the damage is minimal. Plus Geralyn said if I start late next week it will almost be the 2 week post mark, so that helps.
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I received my cold caps today.
So nervous about receiving chemo, but the strange thing is I am excited about receiving my cold caps....Is this how everyone else felt? Crappy having this disease, but I almost feel like I am arming myself and I am already looking forward to the end of the day for treatment #4 when I still have my hair and moving forward with my life. 0 -
DeesDaughter,
You are right on about the caps and how they make you feel. You are a pioneer, you will tackle this disease with everything you can, and you will come out stronger and empowered by the experience. It's crappy that you have to have breast cancer, but you'll get through this and still be yourself, but stronger. You go girl!
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Julia, Thanks for the encouragement!
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Dance and Dees, you are so right! That is definitely how I felt. When I found out about the caps, it changed my outlook. It was the first time I felt hope since my dx. Finally, I had control over something! And instead of worrying about chemo, I focused my worry on something positive, the caps!
Dance, I had my hair highlighted only about a week or two before using the caps. I had not even heard of the caps at that time. I used DermOrganic shampoo and conditioner as per recommendations by others. I too, was so scared, afraid they wouldn't work for me. I had great success with them, using the med. thick hair protocol. They will work for you too.
Good for you tc9876! It is sad the the nurses seem to know so little about the small things (not to mention cold caps) that we have read on here to help us get through. Maybe I am naive, but I would think they would want to learn all of the ways they can help their patients.
I have to say that I have had several comments from the nurses (even the nay-sayer) and my onc as well, about how well I seemed to do and what a positive outlook I had throughout treatment. I always tell them it is because of the caps. I never had to look at myself and see the constant reminder of cancer - having no hair.
Julia, I feel stronger too
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Thank you Laura! I so appreciate the encouragement and advise on the shampoo. Googling it now. And congrats Dees! I am supposed to get mine Tuesday, and I'm excited, too! Thank goodness we have something to lift our spirits. That is not too much to ask after the h*ll of bc!0
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dancetrancer: if you send me your email I'll send you my writeup. Yes, there are some important things to do now to help your hair survive:
- don't color/perm/chemically treat your hair at this point. Also, don't give it a severe cut in any way (a trim of the ends is fine).
Important: STOP using deodorant with aluminum. When the aluminum is absorbed in the bloodstreem through the skin, it creates a binding agent at the root of the hair follicle and can actually trap chemo there, damaging the follicle.
- Stop drinking caffeine and alcohol -- begin getting your liver in shape for massive detoxing.
- HYDRATE hydrate hydrate -- again, to help clear your liver.
- Exercise! It will be your biggest friend in battling chemo and cancer, and in detoxing. Chemo is active in your system only while it is infusing; the minute the IV is turned off, the chemo is just a waste product and your goal is to get it out of your body as quickly as you can.
- Rest! Know you are doing everything to manage all of your side effects. You will be on a bland diet for a while, so eat all those spicy things you'll be missing for a while.
Best,
Susan
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Susan, I sent you a PM. Thank you!!
Thank you so much for explaining the aluminum in deodorant thing. I wondered why they asked that on the form. I mean, I know some people suspect there may be some relation of it to bc, but I couldn't for the life of me understand what it had to do with keeping my hair on my head. I will switch back to Tom's of Maine and just be semi-stinky for the next 4 months. I used it while on rads and while it works, it's definitely not as effective as antiperspirant. LOL
Well, ok, I'll give up the few drinks I have on the weekends, but wow giving up my morning coffee is rough. I am going to try to switch completely to green tea. I know that has caffeine, but it also has amazing anti-inflammatory effects, so I would hope the two would balance each other out??? Maybe???
Exercise is my friend - love to hear that advice and will definitely keep it up!
I think I will go out for thai food tonight!!!
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Susan, thank you also fo the summary. That was helpful to me as well. I had already given up on regular antiperspirant after I had the surgery as I didn't want those chemicals slowing down the healing of the SNB. It's a bonus to hear that I am helping my hair as well. I use the Thai Crystal. It works fairly well. I just can't forget to put it on immediately after my shower.
I do drink quite a bit of water and I was taking milk thistle before I started chemo (stopped at advice of integrative Dr. when I started) to get my liver in tip top shape.
Coffee and alcohol has never been for me anyway so that wasn't a problem.
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Guess what everyone? Herceptin last! So happy about that. No issues with my icing this time either. I'm glad I am icing I have not had any taste changes and it seems like lots of people have. I don't know if we are on different chemos or maybe I'm not far into it enough for taste to be affected.
No problems with caps at all, seems like we are becoming seasoned professionals. Oh, maybe I shouldn't say we as I just sit there. I got so tired sitting in the chair from the premeds and had a hard time dozing off knowing that in a couple of minutes it would be time for a cap change, I thought about TC and how great is must be to wear one cap throughout the entire infusion. But believe me, no complaints on my end.
This morning I sat and ran my fingers under my hair and there were a couple of strands on my fingers. Yesterday, there were none. It really was nothing that I am alarmed about and from reading this thread I know some people shed heavy and still have success.
One nurse commented on my hair, I was so surprised!
One more thing, I have to shave stubble on my legs. When does that usually stop?
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Awesome brax!!!!
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