Cold Caps Users Past and Present, to Save Hair
Comments
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Hi, I just got the caps! The ones I got are all white and look small. I thought they were blue on one side and white on the other. I'm going to try them and see how they fit. I'm starting to walk the same path you all have been thru, regarding the cold caps. It is extremely nerve wrecking! I just want everything I can do to be ready and perfect, don't want it to fail because of something I did wrong. I know there will be obstacles that won't make it go as expected, as I've read on your stories and you have done good. Please, any advice is welcomed. I just want this first chemo to be over and learn that it's not as bad as it seems. Love and blessings to all my sisters.
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SweetMom - Do your practice run in advance. Communicate with the nurses. And know that many of us have had times when things did not go as planned according to the protocol. This thread has countless accounts of mini disasters that we survived without any cataclysmic results.
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I went in for my 3rd round of AC today and my MO was very surprised to see my head of hair! It was a first in her medical career- she even said I might make a believer out of her yet! :-) I am still shedding but hopefully putting the big freeze on my head today will help, lol.
You are welcome sweetmom- glad I could help! There is a small set of instructions inside the plastic clam shell the thermometer comes in- make sure your hubby looks it over and calibrates it if necessary. I was more worried about finding the coolers at this time of year but my local Lowes still had a bunch(they were filthy and in storage at the store since its winter but hey that's ok!). My mom's friend has a business making organic soaps and lotions Morning Song Gardens and this is what I use that has no parabens, sulfates, or junk: http://www.morningsonggardens.com/Fragrance-Free-... I agree with WW - make sure you do your practice run! And I choose to premedicate myself against the "cold headache" but that is just me. Also, I use this leave in conditioner - I think Daye used it too. http://www.kenra.com/ProductDetails.aspx?ID=25
Good luck with your radiation Daye and congrats again on how the caps worked for you- it is encouraging to see your success.:-)
If anyone would like the spreadsheet for changing caps just message me and I will send it to you. Of course, you will need to adjust it based on the schedule you receive from PCC.
Hugs!
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Hi everyone,
Hope all current cappers are doing fantastic! Keep it up.
Been a little down lately- that post chemo depression- they always warn you about. But am trying to work my way back. I can only imagine how much worse it would be to feel this way and trying to regrow hair. I am very thankful for that.
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Hello everyone,
My mother and I are preparing to get the items we'll need for her appointment next week Thursday. We've had to reschedule a couple of times. We had no idea that you needed so many items for this.
Is anyone willing to sale their thermometer? If so, please send me a message.
Thank you.
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Hi, my treatment starts next Thursday. I want to use the Cold Caps. Do you really need two Igloo Containers and Dry Ice in both containers? The supplies sound very expensive. It is all about keeping your hair or not keeping it. I just want to know how to keep cost down when assembling the items on the list from the cold cap distributor.
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Thanks jc and deepcreek. I am thinking radiation won't be too bad! These last few months has gone by so quickly!
jcarolh- You do really need to the two igloo cube coolers (with wheels!). The cheapest coolers we found were at Academy Sports ($25). You could maybe fit the caps and ice in two other large coolers with wheels, but they fit perfectly in the cubes. I also got all of my dry ice for free, so call around to a few places and let them know why you need the dry ice.
Good luck!
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jcarolh - The igloo coolers are also at Walmart and Lowes sells similar ones. They are very heavy once they're packed with the ice and the caps and it would take two men to lift the cooler if it was all packed in one. Dry ice evaporates and the cooler should have minimal air space. It is recommended that the pellets or broken ice be used to pack the empty sections of the cooler. One challenge is getting the caps to the correct temperature and you want to avoid too much evaporation. My dry ice distributor charged me full fare the first time until he learned why I was buying it and then he sold it to me at half price. I never requested the discount but I certainly appreciate it. Dry ice is somewhere around $1-$1.50 a pound and I normally buy 120 lbs.
I purchased most of my supplies online as I live in a rural area. This required payment of shipping fees. Between the cap supplies and all the other stuff I purchased to prevent and manage other chemo SEs, I've spent over 3k. Had I purchased everything in stores, particularly discount stores, I could have saved a lot. My biggest mistake was buying moleskin from a vendor on Amazon and accidentally paying over $20 to ship $2 worth of moleskin. That was my mistake. I purchased my thermometer at Sears and overpaid for that too as I've seen others on here get theirs for a lot less. As you're a week out from your first infusion, you may want to hit the stores to see what you can buy there. After that, I would recommend that anything you are having shipped get sent 2 day rather than ground shipping. The weather in the East is unbelievably sucky and shipments are getting delayed when trucks aren't moving. Finally, if you scroll back several months, you'll find information about how one woman was able to get some of the cost of her caps reimbursed by insurance although they are not normally covered.
tmb - I hope your mood lightens soon. I've heard a lot about post treatment depression. Is it from the chemo or the fact that all the excitement over months of treatment has come to an abrupt halt and all the feelings of grief finally set in? Maybe both. I agree with you. For me, keeping my hair is all about reducing the psychological trauma.
My hair update - The enormous amount of shedding I experienced from day 18 - 30 has greatly reduced to something far more manageable. I'm on day 36 and if it continues as it is now I will be fine. If I have another huge shed like I did before I will be in trouble. I saw the wig lady who is holding my reservation yesterday. I did not like her reaction at all. She commented about how thick my hair used to be and just stared at me with a mortified look. Stare all you want but I still have hair and if you did not know me before you would not have that stupid look on your face!
Does anyone know anything about nails? I've taken all the precautions to protect my nails and so far they're fine. When do we normally start to see signs of finger and toe nail damage?
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WW- and don't forget you will be growing new hair too!
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I went to the Look Good Feel Better on Saturday and there was only one other woman, who was just about to start chemo (ACT I think). So there wasn't any awkwardness, though her doctor had told her the cold caps wouldn't work when she asked. Maybe my head of hair inspired her to push harder. It was fun and I got some nice makeup--a Chanel lipstick!
Deepcreek: I have tons of family in Cleveland and know of the Gathering Place. You should definitely check it out, it sounds like a really good resource.
WW: I've still got the handfuls of shedding hair too. I'm so glad your shedding tapered off.
Mine is so bushy that it looks kind of full still, but I can feel the cool breeze on my scalp.
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Almost ready for tomorrow, actually here it's already Thursday. My appointment is today at 10am. I have one question, might be silly but my brain is getting frozen ahead of time. Do we start counting the cap minutes from the moment the cap is placed on top of the head or until the cap has been fully set on the head. I know its only two or three minutes but I always worry about those little details. I'm trying to set up a document to get the times ready. They also do the pre meds which on my report says to be administered 30 mins prior to chemo, over 15 mins. There is 3 meds to be done over 15 mins and one over 5 mins. Do they put all the premeds at once or they do each one separate? I hope someone is awake at this time and can help me. Thank you all for your support.
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hi sweetmom
I can't help with the freezing times as I am in the uk using a different type of cold cap called the paxman.
I happen to be awake as I had chemo yesterday and having the steroid effects but wanted to tell you that the pre meds are usually done separately making the time accumulative.
Sending warm wishes and good luck for today. Just remember the first 10 minutes of cold cap are the worse and then it's bearable.
Warm thoughts
Lilly x
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sweet mom, good luck with the caps. I didn't use a document because you can't predict when you will start. I just used a digital cooking timer and cell phone timer. It varied when I started the timer.
Warrior, forget the wig lady. She just wanted to sell you a wig. Lots of people have thin hair. My nails are fine and I did nothing to protect them.
New cappers, I really stressed about how to move the coolers. I had 3 milk crates I used to make stairs. Two women were able to easily move the full coolers in and out of my SUV by lifting it to the first crate then the double stacked crate then into the car. Reverse process to take out of the car. Sometimes only one person moved it. My coolers probably weighed 75 lbs. Strong men can be handy but not essential.
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sweetmom-Start the time once the cap has been secured on your head. The premeds take anywhere between 30-60 minutes. If you haven't had the caps on your head for 50 minutes have the nurse wait before beginning the chemo drugs. They can just continue with a saline drip until you've had the caps on your head for 50 minutes.
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Lilly- Thank you, I did a try out with the caps frozen at -34, it was coooold, but I was able to bear it. I guess all these years of putting bags with ice on my head when a headache strikes. I too had the steroid pills tonight and can't go to sleep.
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M1970-Thank you, I got the timer and cell phone ready.
Makingway- The schedule they sent me says to keep the first two caps for 20 mins. each. Maybe it varies by person. Thank you for the advice. I'll keep the saline drip in mind.
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Good luck new cappers! Don't stress about the minute details. Just get that cap on 30 minutes before the chemo starts and keep it on for 4 hours after. Don't forget to have your helper knead the caps every 10 minutes so the cold flows to all your follicles. And keep it as tight around your head and ears as you can since that is the area most of us lose hair. Also, we had to get more dry ice the 2nd and 3rd time. Its not an exact science. A bit of trial and error we found.
For those of you color hounds - I am now 3 months PFC. I shed more after chemo, but no one else notices it (or so they say). Whatever. I have a full head of hair. My hairdresser "highlighted" my hair yesterday with no adverse effects. YAY! We took it very gentle and slow. I usually hilite blonde and all over glaze the roots to a nice golden blonde. Since blonde is high on the peroxide scale, we decided to hilite with a golden brown instead (to lift my roots from their mousy brown color) which is really low on the peroxide scale. It is subtle, but makes a difference. We did not use heat. I just let it sit for longer than I would have if I sat under the dryer. I let her wash/condition with my organic shampoo. I asked her not to wash the scalp as normal. She "shmooshed" it (her words) instead. I combed it out. Had some hairs coming out so decided not to blow dry it. I feel like I am on my way back!
TMB - I had a bad week last week. It just hits I think. Hang in there and keep doing whatever it is you do to make you feel positive when you are feeling down. For me, its exercise, eating right, and when I'm really down, escaping into someone else's reality via House of Cards, Parenthood, or some other Netflix series!
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sweetmom, makingway meant having the caps on for a total of 50 minutes before starting chemo, not that you keep one cap on for 50 minutes. I think everyone is instructed to wear the first 2 caps for 20 minutes each - probably because when you first put them on your head is warm and the caps warm up more quickly. Then 10 minutes into the third cap you can start the actual chemo drip. There was a white board in the cold cap chemo room (we had a medical freezer at my facility, so no hauling of dry ice). My helpers wrote down the times of each cap change, the time the chemo drip could start, the time it actually started, the time we could get out of there, etc. It was helpful to me to be able to look at the whiteboard and see the progress of the day. Good Luck to you and all the other cappers!
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sweetmom-I think you misunderstood my instruction on the time recommended for wearing the pre-cooling caps. You don't wear 1 cap for 50 minutes. The total time considered as 'pre-cooling' is 50 minutes. This is prior to the actual chemo drugs(those that cause hair loss) being administered. The first pre-cooling cap is changed after 20 minutes. The second pre-cooling cap is also changed after 20 minutes.The 3rd cap begins the new timing of the 30 minute interval. But, after wearing this 3rd cap for 10 minutes is the time to start the actual chemotherapy drugs. If you're due for a cap change and they haven't started the chemotherapy yet, have them wait until you've changed the cap, so your scalp will be at the optimum (coldest)temperature.
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I am scheduled for my first treatment on Tuesday! I am so nervous! I will be using cold caps, again more nerves, any tips for what to take? Any tips to get through the treatment?
Anyone know if I can hold my hair in a clip?
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2 boys mom- Here is what I took every time: electric blanket, thermometer(extra batteries, just in case), timer (or cell phone timer), mole skin, panty liners, Advil, Ativan, snacks, towels to wipe down the caps, gloves for both helpers, a big water bottle (the cups at my center were small) That is all I can think of...
I would loosely pull my hair back with a hair tie so it was out of the way of the chin strap
Good luck!! I'm sure Tuesday will go well!
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I'm seriously considering a clinical trial using the DigniCap. Anyone have any experience with it?
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First chemo done! It was a breeze, and the nurse was wonderful, she worked everything out for us and was very supportive about the cold caps. She said she'll be rooting for me. There was several errors which I hope wont affect the success. First, cap #2 was too cold and took past 8 minutes from the first cap to get it ready. I had to have cap #1 for 28 mins. We did a test at home and had agreed to take it out 10 mins earlier, but my stubborn dh did not think it was necessary. Grrrrr😡. Next,it was cap #3 everything was good, hit the 10 minutes mark and the nurse started the chemo, but me being under the effects of all this medication ( blame the meds) and having my hands and feet on ice. Well, I could not read the instructions and all of a sudden asked my husband if he had the cap ready? He says you don't need it, and I'm like yes I do. So he takes a new one out if the cooler and starts warming it up. All worried. He changes this new cap and we proceeded with the chemo meds. Later the nurse took my hands off the ice for 5 minutes. I was able to read the schedule and realized what we did wrong. And to think that this was exactly what I was worried about, Oh well, we can't go back to fix it. And now just praying for the best. Right now, I'm home chilling my head. Three more caps to go. Love to all and thank you for your support and great advice. Oh! One more thing, how do you do it to eat while wearing the caps? I can't even open my mouth. Maybe it's too tight My hubby is going to reshape my head!
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Sweetmom, don't worry, many of us had glitches along the way and it all turned out fine. I wasn't able to eat with the caps on either. In the beginning, they put the caps on so tight that I couldn't even drink water from a straw. Glad you have the first one behind you - almost.
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susiem, we had a poster on here for a while who participated in the Dignicap trial a few months back. mc in nc is her user name- or something close to that. You might want to pm her and ask about it or search for her old posts. I imagine the trial is free, so why not go for it?
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I know NY hospital's breast center is taking part in the Dignicaps trial. You might call to ask how it's going and what the cost is. I would hope that it is free.
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Hi jc254 and Hortense,
I'm talking with the folks at UCSF about their clinical trial. I saw the same San Francisco Chronicle article that another poster mentioned and reached out to UCSF immediately. The clinical trial permits a limited number of TX protocols and the one my current onc suggested (AC-T) is not one of them. From what I understand, I (or rather my insurance co) will pay the normal tx costs and the DigniCap is free. Right now I'm trying to understand if AC-T improves my odds against recurrence enough to sway me away from the clinical trial. Thanks all. I can tell that this is going to be a fabulous resource to get me through tx.
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2 boys mom- Good Luck, you will do great! Bring an electric blanket.
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marley2. Thanks so much! I already can't stand the grease on my hair. Today is the last day I can wash before treatment. So nervous and anxiety is through the roof!
About how many treatments did it take to get rid of most of the greasy feeling??
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Sweetmom - Congratulations!
2.boys mom - It will take a few weeks for the greasy feeling to leave your hair. I wish to emphasize that the extra oil in your hair, under normal circumstances, does a lot for shine and overall appearance. I have long thick hair and prior to BC I only washed my hair 2xs a week. Fewer washes made my hair look shiny and much better overall than frequent washes that made my hair look dry. You'll see. Lots of women continue with the infrequent washes even long after chemo. Also, I workout a lot. I run half marathons. My hair was never dirty.
SusieM - Good luck. My priorities are cancer free, overall health, quality of life and then cosmetics.
Hair update - Day 38 with very little shedding. That's 8 days of radically reduced shedding. I hope it doesn't pick up again. A day without shedding is a day with sunshine!
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