Cold Caps Users Past and Present, to Save Hair
Comments
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I was under the impression that 6 months is the standard but that shedding time is also a factor for determining when hair care can return to normal. Can anyone clarify?
BTW, My caps arrived today. I start chemo on Tuesday. Earlier this week they were stuck in Ohio for 3 days due to bad weather. I was freaking out. I will do my dress rehearsal this weekend.
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Six months PFC is the length of time recommended by Penguin Cold Caps to color hair. However, many women (including myself) have gone against that advice and color sooner because the roots and/or the grey are getting out of control. At a minimum, you should wait until the shedding stops post chemo. For some women, that's immediately and for others it can be several months (mine lasted 4 months). Having said that, I nervously colored at 3 months post chemo because I was going to a wedding. The shedding had slowed down but not completely stopped. My hairdresser used demipermanent color that she applied without heat. It worked well and it didn't seem to make any difference to my hair. I was more concerned about the heat from the dryer than I was about the hair dye itself. I'll get the name of the product next time I see her. I have brown hair and unfortunately don't have any suggestions for blondes. Good luck on Tuesday.
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I would agree with the shedding warning. My hair had a lot of breakage/shedding at 2-3 weeks but then stopped and I really didn't have any post chemo shedding so I thought 3 months was fine for me.
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From my understanding - highlighting - lifting the color to go blonde - is much more damaging to the hair than coloring - depositing a color. This is why I waited the full 6 months to add blonde highlights.
Daye - perhaps consulting with your hair stylist would help. He/she may be able to make a suggestion that is less damaging to the hair.
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I'm a light blonde and shed for 16 weeks. I waited about five months to do anything other than trim my hair a bit myself, until I couldn't stand it any more. My hairdresser decided it would be best to just give me a glaze to cover my roots and unify them with the rest of my hair rather than lift color from the roots with highlights, as my hair was dry looking and breaking a lot. That and a good cut made a big difference. The following month she lightened my roots a bit and also glazed again. The month after that we put in highlights and treated my hair normally from that point onwards. It looked healthy, glossy and not a soul would ever have been able to guess what I had been through not long before.
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Dress rehearsals are a great way to identify new questions. And so here is one more....
In the event the nurses screw up the schedule, (and I can see them doing this) and are not ready to start my infusion at 10 minutes into the 3rd cap, is it better to wait until 10 minutes into cap #4 or let them start 20 minutes into cap #3? I need to be prepared to combat their evil attempts to sabatoge my efforts.
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you should wait to have them start taxotrre 10 min into a cap.....exactly. that is when the skull is coldest. I had to add a cap one time when they were too busy at the center. When the drugs finish dripping the nurse has to come change it. I think I had 6 different bags and I was always asking which drug was next. Remember they have benedryl and other per chemo drugs they will start before the cyt/tax starts.
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Thanks Schoolmom - This is an important point. In other words, I should be 10 minutes into cap 3,4,5,6 etc. whenever a drug is started. If I am 20 minutes into a cap when they want to start a new drug, should I change it and wait 10 minutes into the next to start or wait 20 minutes to finish a cap and start the next? I've put so much effort (and money) into this I do not want to mess it up over a technicality.
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thanks for everyone's advice! I will wait and see when my hair stops shedding and talk to my hairdresser about some options.
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the big hair loss drug is taxotere. Get on penguin cold caps website and review procedure. They should have sent u a detailed email. I guestimated when to start the caps based on pre chemo drugs and how long each took. You only need to be 10 min into the cap when taxotere drip starts. Then you just keep changing caps every 20 min. Until you finish drugs . Remember you will continue caps for me it was 4 hours after final drug.
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Thanks again Schoolmom. My protocol specifies changing the caps every 30 minutes with the first two prechemo caps being on for 20 minutes each.
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Good luck today WW! Can't wait to hear how it your day was.
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Thinking of you today WW!You will do great! My experience with chemo so far is all the uncertainty and fear of the unkown is much worse than reality. I have no doubt you will kick ass!
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Coolers packed and I'm set to go. Thank you everybody!
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Go Warrior Woman!!!
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I am about at the same point with round 2 as I was in round 1 when I started freaking out. Not quite 3 weeks out from the infusion and I am shedding like crazy. It seems to be on the opposite side this time but last time was under my part and this time, not! I don't know how all of you ladies estimate how much you lost but I've lost a lot. Thank goodness I had so much to start with. My scap is hurting again... it is a strange feeling, isn't it?I keep telling myself that my hair will still be here after 6 rounds but on days like today, it is hard to imagine what my hair will be like after 4 more rounds.
Not looking for advise; just looking to vent and be scared with those I know understand how nerve racking this can be.
There was day during this round where I was just singing and dancing in my car on my commute home, having an awesome time, and I thought "THANK GOD FOR COLD CAPS!". Everyone says it is just hair but it isn't really about hair at all. That day while I was having such a good, NORMAL time in my car, I realized what cold caps really save us from.... feeling sick and looking sick. Don't get me wrong, there are days I feel sick and there are days I feel tired, but for those days I feel normal (and there are actually quite a few of them) , I get to act normal, get treated normal, and just enjoy my good day. Perhaps if I had lost my hair and who knows, I still might, I would learn to accept being bald and I could still have my 'normal' days. BUT, WHAT A BLESSING! that there is something out there that can help with that!
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OneTexasDay
For me I didn't want to advertise to the general public, or my client's that I had cancer and was being treated for it. CC helped me protect my privacy in this way. I too have a huge head of hair but did salvage about 1/3 of it. Enough so no one knew I lost it from chemo. Now that's its growing out - I have about 3 inches of new growth since my last infusion on 7/2/13 my hair is looking fuller.
It's very distressing to see hair lost but if you are careful with the CC application and changing, you should have good success. Someone I know who has breast cancer and went through numerous different chemo's warned me I will loose my eyelashes and eyebrows, but after 7 weeks of chemo ending I didn't - but on the 8th week post-chemo they disappeared. What a shock. I wore fake eyelashes until my new ones started growing again. Then I had Minkey's applied by a professional and although expensive they lasted a good 4 to 6 weeks which got me through the worse part.
I do think you eventually stop shedding even during chemo. It's hard for me to remember exactly. Good luck to you.
Amy
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Amy,I still have my lashes but love to arm myself with information in case my situation changes. I was under the impression you had to have some lashes for the false eyelashes to adhere to but I haver used them before so perhaps I have gotten bad info. Are the Minkys different?
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OneTexasDay: False eyelashes do not need a base of lashes to adhere to, just your eye lid. False lashes only last a day or two which got me through the event I was managing. Minkys need a small amount of lash to glue to. Minkys are human hair individually glued onto each real lash. When I first went in to inquire about Minkys she didn't think I had enough lash but after fiddling around she was able to make them work. What a huge difference it made. I went in for one fill which is much less expensive than the original. Expect to pay about $300 at a premier salon but I bet you can find them cheaper at other places. Good luck
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Good luck WW!! We are all behind you- I found this board so supportive during my treatments so feel free to vent, rant, or laugh- we're here no matter what you need.
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Treatment # 1 is over and I feel surprisingly OK...very awake from the steroids. I'll see how I do with the SEs over the next few days.
Question: The center I go to has only a few private rooms and obviously the very sick patients have priority. I am scheduling for off hours to secure a room for myself. Has anyone tried to do the cold capping while sitting in the line of infusion chairs with a bunch of other patients? We have two coolers, 4 bags of "stuff" and my two helpers. I don't want to be in anyone's way. I could return to Penn where they have greater resources for chemo but it is a long haul and I don't want to inconvenience my helpers more than I already am. Any thoughts?
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WW, glad your're finished with #1. Hope the capping went well. I had a private room for my first treatment, but the room was very small and it was hard for the nurses to manuveur with my helpers and all the stuff. I had the rest of my treatments in one of the regular chairs and that worked better. We just tried to be considerate and keep our footprint as small as possible. Are you able to get home from your current facility in 1/2 hour? If so, that's a big reason not to change centers. Otherwise, you'll be stuck at Penn until finishing with the caps or will need to change caps on the way home.
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i was 5 minutes from home at my center. There were no rooms and I was the first cold capper. We always took the back corner which was where they had a counter with blankets. Worked great. I got some questions and strange looks but no big deal.
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My center is about 5-10 minutes from my house and we were able to get a private room. It was a little crowded, but I have 1 helper and that helped the nurses maneuver. I never sat in the public area, so I can't speak to that, but out situation worked fine.
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Hi Everyone,
This is my first post on here and I appreciate all you ladies who have already been through or are going through what I am about to start. I was diagnosed with triple negative, stage 2a, breast cancer last month and chemo starts on 1/21. Has anyone here done my chemo regimen with the cold caps? I will be on a biweekly schedule of 4x AC and 4x Taxol. My PCC's should arrive today and I am really nervous and praying they work! Any advice or tips would be greatly appreciated. Thank you!
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Welcome Deepcreek - You will read many many posts here from women who have saved most of their hair with cold caps. I started yesterday with my first infusion. If my experience is like most, I can expect to shed hair beginning in a couple of weeks, begin to freak out as my hair continues to shed, go to great lengths to try and protect it, and in the end be very happy that I never needed a wig as my new hair continues to grow in. With that said, if your chemo start date is next week you must go into overdrive NOW and get your supplies. Here is the link for the company most of us have used: http://www.penguincoldcaps.com/ Have all your supplies shipped overnight or 2 day. If you are late getting supplies talk with your MO about postponing chemo for another week. I had a week to get organized and it was a full time job but I made the deadline.
JC, SchoolMom, TMB - Good points! If I were to go to Penn for my chemo I would have to change my caps 3 or 4 times on the drive home. Surely I would be stuck in traffic on 95. I could wave to the passersby. I will try to stay local and work with the nurses. Some are positive about this but the main Nurse Ratched is another story. She won't allow more than one person to be with me in the main chair area at a time as my concerns are only "cosmetic". I should bring her one of the oncology journal articles that speaks to the importance of psychological and emotional well being. I don't want to get on her bad side or she'll claim she cannot find a vein and force me to get a port.
The timing was a bit off as I anticipated. The taxotere started about 15 minutes into cap #4 rather than 10 minutes into # 3. I am hoping this won't make a difference. Otherwise, things went as well as can be hoped for. I am going to get tee shirts for my wonderful helpers. The Mad Cappers! Catchy, huh?
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My center doesn't have any private rooms (at least not that I know of!), so we try to get a corner spot as well so there is more room. I'm sure we are pretty entertaining for all of the other patients to watch!
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Welcome Deepcreek - I don't have experience with your type of cancer but I can tell you a little about cold caps. I was fortunate in that my clinic had a biomedical freezer to store the caps. However, I still encountered problems when once the freezer broke and another time, for whatever reason, someone removed all the caps from the freezer and left them on the floor. Needless to say they would have been worthless that day, however a very sharp heads-up nurse called me the day before I was scheduled to come in, suggesting I bring in dry ice just in case the caps weren't cold enough by the time I arrived the next morning.
Fortunately they had enough time to refreeze and I went forward with using them. I guess my best advice to you is to let your nurses and onc know you are going the cc route and that you hope they support you. If you have enough helpers with you, you shouldn't rely on your infusion nurses. They have a lot to do already so be as kind and thoughtful as you can regarding their time.
Regarding your helpers, I would hire the local rep, if there is one, to do a practice session before you begin. You will learn so much from them. Jot notes if you have to but installation and replacement of the caps is critical to your success. I hired the local person for 1 full treatment and 1/2 of another treatment. The rest of the time my son helped me. I lost about 1/2 to maybe as much as 2/3 of my hair, but I have a huge thick head of hair so people had no idea what I was going through.
Be gentle with your hair, no hair dryers, no hair coloring, cool water for shampooing and towel dry your hair. I think a dryer is okay if the air is kept cool. It's been suggested silk pillow cases to avoid stress on your hair when sleeping. I purchased them and used for a while but don't really know how much they helped.
You will learn that you should have your caps in place about 40 minutes before the first dose of chemo so your scalp gets good and cold. I never had headaches from them but just in case, have a pain killer with you and perhaps take a dose for preventative measures.
Good luck to you. I personally think they're well worth every penny including the time and hassle. Yes they are a hassle! I do believe my oncologist's office has changed their sceptical thinking on the caps after seeing my success.
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Daye - That's my back-up plan. An aisle seat!
I was told that everyone was talking about me yesterday. The comments were mostly positive or inquisitive. I do not want to upset any of the other patients who have lost hair because they either did not know about the caps or could not afford them. I am hoping something good comes out of this otherwise sucky experience. If I have reasonable success, I want to get a freezer donated and I will donate my supplies and perhaps talk to the hospital's foundation about helping women who cannot afford the caps. That is one good thing I can try to do.
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My infusion center was a large room but they had a freezer so they put me in the chair closest to the freezer which was on the end. People just gave me such odd looks....not many questions. I think they thought I had brain cancer and was getting some treatment to my head or something.
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