Cold Caps Users Past and Present, to Save Hair
Comments
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Rhonda
How are you feeling? Ok, I'm tring to google for dry icd locally. Wating for a call back. I also have to get coolers and the thermometer, moleskin. Did you lose your eyebrows or eye lashes? Should I use Latisse? Will ask my Dr. for permission. Which shampoo did you get?
Thx so much
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Hi Shasha...My MO didn't approve the Latisse during chemo but others do so worth asking. I went ahead and got the prescription anyway from my PS and plan on starting it as soon as I finish treatment. Most of the ladies said they kept brows and lashes until after - then they lost them or they thinned regardless of Latisse - but that they came back quickly. To be honest if I start to see a lot of thinning on my brows, I probably will use it before I finish...not for the lashes though as my eyes did get a bit irritated after my first round and I don't want to stir things up in that area unnecessarily. If you do use it the recommedation is to not use the brush that comes with it as it's wasteful and to use a regular small eyeliner brush instead. Hope this helps!
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Hope
Thank you very much. I'm spending more time on the cold caps then anything else today. Went to work for time first time since surgery 1/22/13.
How are you feeling?
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I know what you mean - once my chemo was scheduled, I only had a couple of days to pull it all together which included flying in a wonderful woman from MN to train us and help the first day...but it all worked out. I feel really well, my biggest complaint is the lack of taste - everything tastes so salty and yet salty things are all I want to eat. I feel lucky in terms of SEs as I know it can be much worse...I've had 2 of my 4 Cytoxin/Taxotere treatments and so am halfway there! Feel free to PM me if you have any more questions while you are getting things going. I'm still kind of a newbie, but we're all here to help!
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Hope49 - I know what you mean about the salty taste yet still wanting to eat salty things. It's really bizarre.
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I am starting TCH/6 next week and have decided to use the cold caps. Although my doctor's office has a freezer for the caps she isn't keen that I use them. When I asked her why - she said I could get metastasis of the scalp and since the hair would eventually grow back why bother. She then said if I really wanted to use the caps go ahead but the nurses weren't there to help me with them. I think she just thought they were too much bother. Then when I found that it was less than a 1% chance of haiving scalp metastasis I decided to try and save my hair. Will keep you posted on how it goes.
I am at MD Anderson this week getting a second opinion on my treatment.
Diagnosis - invasive lobular carcinoma - stage 2b -- triple positive.0 -
Good luck, Kate! You are right about the data, and there is a lot on this board that backs it up. There's a much higher risk of other issues caused by the chemo itself that the Drs often don't mention, yet they are quick to focus on the scalp issue. Not well informed in my opinion. It's a shame that your center has the freezers right there and there's no support...but just having that advantage will be a big help to you in the process. You can show them how well it can work! Post any questions to the group and someone will be able to provide more info so you can feel this is the right decision for you and know what steps to take to be successful.
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Shasta,
I'm feeling like normal and today is 13 days from my last treatment. My taste buds are off a little, but that does not stop me from eating. I try to walk every day as far as I feel I can which really helps me to feel better as well. My DH is my helper with the caps and he has done a great job. We bought our ice chests at Walmart and they had the exact size for only $25. I also bought Dr. schools moleskin there, but I think you can get that at any drug store. My DH cut it to fit on my forehead and sides. I also used it on my ears. My hair is in the middle of my back so I got a wig cap (nylon stocking) to put over my head so my hair won't get tangled in the Velcro strapes. I bought Nourish Shampoo that I got at Trader Joes and Kenra spray in detangler/conditioner. I don't wash my hair very often, maybe ever 5 days. I shed a lot anyway so I haven't noticed anything unusual yet. Oh, I almost forgot. Hydrate yourself at all times. I try to drink at least 2 liters of water a day and especially before, during, and right after chemo.0 -
Kates, I find it very aggravating that a facility with a freezer is so ill informed and negative about using cold caps. Don't let them get you down
Rhonda, Did Frank ok using the nylon stocking? My helpers just pre-velcroed the tabs (tightened once the cap was on) and I sort of held my hair in place while they placed the cap on my head.
Shasha, Did you see my post on the size and voltage of the freezer?
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Laura,
No, I don't think Frank knows about it, but I received that info from the UCSF study. I spoke with Geralyn ( cold cap rep) and she thought it would be fine. Time will tell.0 -
Laura
Yes but the center had looked into it with another patient and decided against it
I'm going to use dry ice. Just having trouble finding a supplier, I'm sure I will. I started
late in the day. Thx0 -
PCC hair care instructions say no caffeine. This probably has to do with what your liver is busy doing. Not sure for how long they want you to stick with this - I'm assuming it's the 4-6 months PFC they recommend for everything else.
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Shasha-
I used this website and found a dry ice distributor right in my area, fortunately. It was cheaper than getting it from Publix - which is another potential source if you have Publix in your area (a grocery store chain).
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We don't have publix around here but maybe I'll go to the a & p and ask if they can get it for me I'll check out your site thx
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Dancetrancer
Your link was very helpful. I found a source. Not the cheapest but at least I can get the ice and now get the the other items. One thing off my list. They were very nice and when I said I needed it for medical reasons they knew it was cold caps and what I needed. I have to see if its worth the extra not to pick it up. But I found it. Thx so much0 -
You are so welcome Shasha - YAY!!!
I picked mine up the night before and stored it in the coolers overnight. We got 100# instead of 80#, b/c the first time when we got 80#, the caps were starting to get a bit warm near the end of cold cap changes. No prob's with 100#.
The beauty of getting it the night before is less stress on chemo day. Plus, you can get your caps on ice easily 3 hours before infusion time, as instructed. This is very helpful if you have an early morning infusion time.
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I got my dry ice from HEB grocery store here in Houston . The first 3 treatments the supplier found out why I was using the dry ice and did not charge the store so I got it for free. The last treatment I paid $109 ( I think my supplier guy was on vacation) Anyway, it is worth asking and letting them know why you need it...
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Dancetrancer
I'll call the ice man tomorrow and see if he can do Sunday delivery or early morning Monday. He was so nice about accommodating my needs. He told me the delivery is for 100 lbs, so it's good to know that wasn't a problem for you. I'm sending my husband out this weekend for the coolers. Any advice??? and the thermometer?
My apt for chemo is for 11am. I hope I can work out all the logistics. They told me to bring a blanket & food & reading material. I have my I pad and my sister will come with me.
We're bracing for a winter storm and I just re scheduled my trip to Fla and ocean for Sunday. I did get permission from my bs to swim. ;0
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Shasha10-There are detailed instruction on my webpage for packing cooler, haircare etc. Check it out. I hope it helps! http://penguincoldcap.net/
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Hope49 - great suggestion about not putting back the used, warmer caps back in the freezer with the fresh ones! Brilliant actually. I bet that contributed to my caps not being warm enough last time. Thank you so much.My chemo day #2 ( of 4XTC) is next week - Today is day 17 from first treatment - and just started shedding. Nothing major. So pleased so far! But wondering if it is still to come.....
What day did others begin to experience shedding?
And is everyone taking Sillica? I have not started yet - got the ok from the onc. Does it really help?
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Shasha - I purchased two Igloo Ice Cube wheeled coolers (60 Qt) from Walmart. Not every walmart carries the specific kind that works best for organizing the caps - I searched Walmart online to find places that had them, then called to make sure they had the specific type since I had already made one trip to another Walmart, and they didn't have them!
We purchased 10 slabs of ice (Penguin will tell you the dimensions), then hubby took a hammer to 2 slabs (in a bag), crushing them slightly. He left the crushed ice in 2 bags and fit those in and around the remainder of the caps/slabs of ice. Some people get all the ice crushed in bags, but I found it easier to keep 8 of them as slabs (less mess, easier to move around). The dry ice company wrapped each 10# slab in paper, which made it easier to maneuver them around when getting the caps in/out. Don't forget thick gloves!!! Never touch dry ice or the super cold caps with your bare hands.
Another tip - make little numbers to put in the cooler boxes so you can keep straight the order in which you are using the caps (so the ones you first use have time to get cold before you need them a 2nd time). My husband cut out pieces of cardboard and wrote numbers 1 - 8 on them for each cap. Really helped him keep track of which one to use next, etc., etc.
I bought my infrared thermometer at Sears. It needs to be one that reads in Celcius and goes really low - at least as low as minus 40, if I recall. When you take the temp, it will vary around the cap. Massage the cap to distribute the coolness and make it malleable enough to put on. Some of them are rock hard when you pull them out, esp. early in the day! You need to allow time for them to soften up before you can massage them.
DH did a great job with the temps of the caps. He looked at the first one about 20 minutes before I was to start. Kneeded it, got it to the right temp - then stuck it back in the cooler. It stayed about the same temp by the time it is ready for application. He payed attention as to how long it took to warm up to the correct temp so he knew when to pull the next one out and prep it.
A timer with a bell is essential, as well as layers of warm clothes and a nice warm electric blanket. Walmart sells a nice little electric throw for around $10.
If you are icing fingers and toes and mouth during Taxotere, you will find that to be the most difficult part, IMO. The caps are much more tolerable, although very cold at first. Treat yourself to some hot chocolate after the Taxotere freeze.
Last, but not least, remember it is all worth it! The day can be long and stressful, but the cap experience actually helps pass the time quickly and gives you a sense of "control" - at least it did for me. And not having to deal with the emotions related to hair loss is such a great boon when you have plenty of other emotional cancer crap to deal with to begin with.
Best wishes!
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Dancetrancer what a helpful email for the new gals just joining us. Good luck to you all!
You GO girls!!!!
I have my final chemo and cap use on Feb 20- coming in to the home stretch. my hair is still here! Messy but here!
I wish all the new girls minimal shedding and low stress on "penguin party day".
Since my penguin "pit crew" is all girls we bring a magazine that has a big picture of Brad Pitt on the back as eye candy, and prop it on the end of my bed. It helps us and the nurses find it hilarious. Tiaras have been worn at some of these "events" and we bring snacks. Good ones.
We figure being lighthearted helps us all get through the day.
Keep up the positive attitutdes- the most important thing is you are attacking the tumor and thwarting the most awful side effect- hair loss!
It is great to take control.0 -
Dance trance
Thanks so much for all the info did you do bands I your eyebrows? Is that necessary? Will I lose eyebrows eyelashes? What happens to fingernails?
Again thx so much
Science gal
Congrats on getting this far.0 -
Hi ecarol...for me the shedding started around day 24 but it's very individual...I had a couple of heavier days but it seems to be slowing down a bit now and I'm focused on not touching it if I don't have to. It looks so stringy but overall, it's in tact. I brushed around on the carpet by my mirror this morning and it was probably a good handful of hair, but that's been for the whole week and is probably not that much more than I would have cleaned out of my brush every week...we're just a lot more conscious of every strand that falls. So if you do start shedding and keep shedding, don't panic...everyone on the boards goes through it - I know becuase I am reading every page from the start...and there are all happy endings.
Shasha - I didn't do the brows the band is way too painful for me. I asked around and most of the ladies said they didn't lose brows until after and for many it was just thinning not total loss. All said they grew back very quickly. I did get a prescription for Latisse which I am waiting to use until after but if I start trending toward total loss I will start using it even tho my MO didn't approve it until after. Same story with the lashes...they seem to fall out more afterward and then I've heard they may come and go for months so Latisse will help that, too. As for the nails, I've heard stories of peeling and falling off...so I am icing fingers and toes during the Taxotere (although I think I did it backwards and still seem okay) and then following a protocol of painting them a dark color day of tx (something with the drug interacting with light) and then take off the dark polish the day after and paint a coat of Sally Hansens Hard as nails once a day for 7 days, refreshing the 7th day and so on till the next cycle. Seems to be working well as my nails are strong and growing...
sciencegal, you are almost done! I'll look forward to your PFC posts to see how things work out with additional shedding, hair care, etc...for more tips!
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Hope49
I'm starting on Feb 25th with TCH. Taxotere, Carboplatin, Herceptin, 6 cycles every 3 weeks for 18 weeks. Herceptin first cycle day 1,8,15
Organized the ice delivery for the day before, so I'll be organized. My sister just returned from Fla 6 weeks vac. ( she wanted to return for my surgery but I told her, I'd need her more for the chemo/ caps.) Still need to get the shampoo.
Question: Will I need my sister to some home with me after and for how long. What will I need when I get home? Especally the first time. My husband doesn't get home till 8:30 ususally. But will if I need him.
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Shasha, you'll need to keep capping 4 hours after your treatment...I don't think the Herceptin counts so if that's your last drug then whatever totals 4 hours after the TC portion of your cocktail...someone correct me if I'm wrong. So if like me you aren't allowed to stay at the center that late, you'll roll up your whole kit and team and head home for the remaining time..same supplies and routine. My home is more than 30 minutes from the center so the first time we had to stop 2 times on the way home to change caps, cold snowing, etc...the next time, we made my mother-in-laws house our stop and just stayed there until we were done. My tx time is 12:30 so it ends up being a long day as we don't finish capping until around 8:00 so my sister just sleeps over since we are all wiped out! I'd recommend getting some sandwiches the day before so once you do get home there's food ready to go for dinner...one less thing to worry about.
As far as needing someone there once you finish capping, I think you will be fine on your own if needed...expect to be tired and cold and just ready for some much needed rest. If you are prone to nausea be sure to take the medicine proactively...I don't need it, but have heard it's best to stay ahead of this if you are at all worried.
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Hope49
Thx so much, big help. I told my sister to cancel her tennis game for the first session. Need to work out the logistics. They told me to show up at 11am. I know they will go over everything, but I want to be prepared. My husband just ordered the coolers and thermometer and we have lots of ski gloves for handling the ice. I live 10 minutes away from the center and my sister 3 minutes from me, so that's not a problem. Snowed in today from the storm. So dwelling on the chemo again. This was so helpful thx again0 -
I had a lot of fun with the nail polish during chemo. Pretty much wore it continuously - starting with a base coat of Hard as Nails and following with two coats of dark polish. I'm now 9 weeks PFC and have decided that fun polish is part of me. I'm famous (infamous?) for turquoise and dark green! And - no nail problems:-)
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I wear a permanent French nail gel. Not sure if I should attempt any changes now. If my nails change I may go dark. Like the idea of turquoise. It's considered good luck
(even with nails?) 0 -
I did not ice hands and did not get neuropathy or have nails blacken. My onc said that depends on your dosage, number of treatments, and health leading up to treatment. Women with diabetes have a higher propensity for neuropathy. It was enough for me to wear the cold caps. Good luck Shasha!!
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