Cold Caps Users Past and Present, to Save Hair
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jcarolh - I am currently using elastogel caps through chemo cold caps and they are wonderful people. Came to my local small town hospital and helped through the whole first treatment. They brought me the dry ice from the city since it is not sold here locally for my second and now my third tx tomorrow. They supply everything that u need. Call and text me to see how I am doing. I have shed quite a bit but the rep Julie looked at me today and said I am doing great. I have some thinning on my crown but I still have hair. That is one thing that keeps me feeling like I'm ok with all the craziness associated with this.
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New to all this--starting TCH next week. This forum is great to read! I'm thinking about elasto-gel caps because they seem easier to put on and take off but...I'm really nervous that they won't work as well as PCC. Are there more folks out there who have used, or are using, elasto-gel? Or does anyone have some information on them, good or bad? Any help is so appreciated!
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My wife had her first cycle last week and we are using elasto-gel caps. Unfortunately, her treatment is TAC x 6 which I read has poor success with cold capping. Right now we are just waiting on whether she start losing hair on week 2 which is next Thursday. Regardless of what happen I will post and give an update.
For those who are interested in our process here it is.
5 elastogel caps switch every 30 mins. Started 30 minutes before infusion and continued 4 hours after
Used kids Easton base ball belt as a strap to keep the edge tight.
Used 60 quart Coleman extreme with 60 lbs of dry ice blocks from local grocery store. Lined the bottom and the top with blocks and put pieces inside the caps as we'll. Make sure not to put too much weight on the caps and avoid squeezing it as it would be frozen hard and will be hard to put on if misshapen.
Used moleskin cut outs to protect ears and forehead.
Drink lots of water before and after.
Avoid washing hair until the 4th day.
If there are current or past users with same treatment please let us know how cold caps worked out.
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Thank you pam5cher for all this info. It's really helpful to me as I start this process. You're changing the elasto-caps every 30 minutes--are they still cold after 30 mins? I'm wondering if I should change the caps more often and if that will give better results? Please continue to post! I will also post updates once I start chemo next week.
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My wife said they are but I will try and shorten it to 25 in her next cycle. We also put a towel to cover it up to keep the cold in. She also got a big headache after. Putting the caps on is very easy but you will definitely need help. When we switch caps my wife takes it out and then I slide in a new one. My wife then put the belt strap around the cap while I get the used one back in the cooler. She then uses the towel in her head to pull on the cap so that it fits snugly while I press all round to make sure it is in contact with her hair. One more thing is to make sure to wet your hair and scalp at the beginning before you put the first one.
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pam5cher - I didn't use Elasto-gels, but one suggestion I have would be to use the Penguin Cold Caps protocol. That is, use the first two caps for only 20 minutes each, and don't start chemo until 10 minutes into the third cap. The reason for that is that when you first start capping the head is very warm and the caps warm up quickly. By 10 minutes into the third cap (at the 50 minute mark) the head is cold enough to start the "shock" of the chemo.
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Excellent advice PatinMN !
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With my elastoGels I did
15 minute cap
15 minute cap
Switch to 3rd cap
Start infusion
Then changed each cap between 20-30 minutes depending on how they looked and felt. It was June and July in Atlanta though!
The first cycle though the caps they lasted closer to the 30 minutes. On the second and third time through them after they had been refrozen we cycled through closer to 20-25 minutes.
After drip was done I asked them to completely run the saline. I kept them on for 6 hours after the chemo drugs stopped. I also asked them to run the cytoxan slower. First time they did it over 30 minutes and It was better then next 3 times after they slowed it to an hour.
I did Taxotere and Cytoxan and each lasted an hour. I did not have any premeds, only an Aloxi push. So my total time in caps was about 8 1/2 -9 hours. I did wear them home. We even stopped at Subway, changed them in the lot and then went in an ordered lunch!
I would suggest with the Elastos that if you have A in your cocktail that you do more frequent changes and also do 6 hours after, just based on my experience and that of people I have talked to that used the EGs.
I had 6 caps in my rotation. I don't know how much dry ice we had. The cooler was outfitted with plastic inserts to slide the block ice into on the sides and top. Like the plastic card board like stuff. That way you slide the ice between the board and the side of the cooler and you don't have to move it or worry about touching it when you are getting a cap or putting one back.
It is more imoortant to get ice on top than in the bottom of the cooler. You also need some plastic shopping bags with ice tied in them to put inside the caps when you put them back in the cooler. This way they get cold from inside and out. The pellets work great for this.
After you use your caps let them defrost and dry out before you referee for next time. Make sure to put them on some kind of form, even crumpled up paper, so they hold shape because the gel will shift and form ridges. If one gets a bad ridge, you can microwave it briefly and knead it around to even it back out. It's just better to keep them in shape!
Hope that helps some!
Happy weekend all! I am going for a haircut! My "troll hair" new growth is out of control!
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4sewwhat, this is great information and really helpful for me as I start this process. I'll follow your tips and hope that I keep at least some of my hair! When you say that you had them completely run the saline, I assume you mean emptying the bag as a sort of "flush"? Sorry for sounding dense--this is just all new. Thanks for taking the time to post for newbies like me!
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Exactly! I had read to have them run the full bag of saline to keep things moving and for hydration. It only takes about 15 minutes and counts towards the after chemo hours. My helpers packed everything up while it finished, then we changed a cap and headed for the car!
I also chilled my hands and feet and sucked ice too. As soon as they started the cytoplasm my voice got foggy. I called it my phone sex voice! I didn't get mouth sores, but my throat and mouth got really funky that cycle. Thrush like. That got considerably better when I asked them to slow the drip next time. I also figured that if it didn't hit my throat as hard, it wasn't hitting my hair as hard either! I also found lemon drops helped a ton. Kept the film from forming.
I hesitate to send you to my pathetic blog! It was put together very quickly for a girl getting ready to start capping, so she could see the videos. It needs help, but time is short! There are pics there that I took the morning of each chemo. There is also a video showing a cap change.
Like pam5cher said too, wet your hair first. I took a spray bottle with very diluted leave in conditioner. Then put on a shower cap. The disposable thin clear kind. You can get them at Sally's for a few bucks a dozen.
I used a pick on my hair and just slicked it back and put the cap on. Very sexy, to go with the voice!!
I used wax paper to make templates of my forehead and ears. Then each night before a treatment I cut moleskin and out in a ziplock so they were ready. I used the thick skin for my forehead and the thinner stuff for the ears.
I didn't get any nausea but I had asked my onc for Scopalamine patches. I would out one on the morning of chemo and took it off 3 days later. It may have been all in my head, but if it worked, I'm ok with that!!
I also read about Metanx (vitaric-b is the generic). It is used for diabetic neuropathy but they are using it for chemo patients too. I asked my onc for a script. He had to look it up, but then wrote the script! It is a fat soluble form of B vitamins, which are some of what protects the sheathing on the nerves. My insurance doesn't cover it because it is vitamins, but with the discount program at Walgreens it is about $42 a month, I think. I figured it was only for a few months, so if it helped.........
Trying to think of anything else. Fortunately it is a distant memory! It will be soon for all of you getting ready to start too!
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Kazzy, if you decide to use the caps, I'm in the Chicago area and am happy to let you use my coolers and share my experience. I sent you a PM as well. Leslie
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Hi everyone, just wanted to update everyone on my progress so far. I started TC with the dignicap trial 3/10. By day 13 I noticed some body hair coming out, but my (head) hair was fine until day 17. Day 17 I woke up with quite a bit of hair on my pillow, and when I washed my hair that day a lot of hair came out. Day 18 (today) had a considerable amount of shedding as well. I'm hoping the major shedding will stop soon!
I wanted to ask--did everyone lose all of their body hair, and if so at what point did that happen?
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Kazzy I am in Chicago too and have a thermometer and electric blanket you can use.
My body hair started going around day 14 but head shedding started at day 21.
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Just reporting in after hair washing. I had a lot of hair come out and still shedding today, day 18. My part in the front didn't do as well as in the middle and back, but the shedding is consistent all over (I guess that's a good thing); so you can't tell I lost hair except that it's thinner to me. I am hoping the shedding slows way down because I am going to be extremely worried if it keeps this pace!
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Diem - I have little to no body hair except for one or two here or there. My brows and lashes have thinned. I have not shaved, waxed or plucked since chemo started. I shed heavily (and I do mean heavily) days 18-30. Since then, it has been a little bit each day but nothing to freak me out. I am a couple weeks PFC and unless something changes my big shed was early on. It is likely that the next week will be rather stressful for you and then it will settle down. I remember that period well. I was out of my mind. Have faith. I don't recall anyone on here doing TC and not having a reasonable degree of success.
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WW - thank you for the info. I have followed your wonderful posts since you started, and I love your candor and all of the information and photos. It has helped me tremendously. I hope I am having the "big shed" like you did and that it slows down!!
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anmore - It was the sharing and support from the other one big shedders that got me through this. LOL
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Thanks WW for the foreshadowing--day 19 now and still shedding quite a bit in the morning but already better than yesterday
I'll hang tight for the next two weeks!0 -
Hello all,
I am using elasto-gel caps and they work find. I'm almost fiinish with my treatment and I still have hair. I cut about 5-6 inches off a few weeks ago because of the thinning but now I don't think I really had to do that but it's okay it will grow back. I had a big shed about a month into treatment and after that it hasn't been much shedding but I take the big shed due to I miss wearing the caps on a treatment. I think if I hadn't miss wearing the caps for 1 treatment I wouldn't shed so much. You will need to keep the plastic pieces in the caps to keep the shape. I think I attached the pic correctly, but this was taken last week on my vacation. I wear a head band because that's where my hair thinned out the most. Hope this help for the ladies who are thinking about using the elasto gel caps. Also my hair is twisted up and is not free flowing and when it's not in twist my hair looks thicker. My hair was very thick to beginning with. I hope this helps.
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Just checking in with all of you. I still have no decision on the spot on my pet/ct scans from end of January. Aetna refused a followup ct in 6 wks so we have to wait until may. it was 9mm and radiologist and onc said it was too small to biopsy. he gave me a round of antibiotics and it is wait and see. i did send off for a complete review of all my records, surgery, tests etc etc by aetna and best doctors. within 2-3 weeks they will look at all my scan and pathology samples and give me a second opinion. it is free and just involved signing release forms so i decided to go with it.
had a great spring break. walked 3 miles around the grand canyon, another mile or 2 in sedona and moctesumas castle. even walked the bridge over to juarez and back. all is good for now. hope all is well for you ladies.
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Akevia - Lookin' good!
SchoolMom - Welcome back.
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Thank you Warrior Woman!!! :-)
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Akevia you look fabulous! You have done very well. And, your daughter is adorable.
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Thank you Hortense!! :-)
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Beautiful, Akevia!!
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Thank you summer70!! :-)
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I haven't posted in 10 days, kids were on spring break, I've been busy entertaining them.
Akevia-I’m happy for you, your hair looks great.
Schoolmom-Glad to see you here, hope everything comes out good for you.
WarriorWoman-How is your shedding going?
My update: I started shedding on day 10th after first chemo. It was light shedding but on day18th, it started getting heavier, from losing around 300 hairs a day (Now,I call this light shedding), it went to almost 800. I've mentioned before that I do count the hairs that fall in the sink after I comb. I keep track of morning comb and night comb, as well as after shower comb on hair wash days. My count does not include the hairs left over in my car, at the stores and everywhere I go. I don't like estimating, so, counting helps me be aware if it's getting worst or better. Day 18th was a hair wash day, and after I combed my hair and counted almost 500 hairs falling just in one combing, I knew the big shedding had started. The worst days have been days 25 and 29, both were hair wash days. I counted more than 1200 hairs on each of those days. But day 22 (850 hairs) was not less worse, that’s the day I ended with a big bald spot on the right side, about 1 inch wide starting above my ear at the temple along the hairline. Three days later another bald spot on the left side at the top of the temple, this is only the size of a nickel. Lately I also noticed above the left ear another bald spot. These bald spots are not just hair thinning, it is bald, no hairs there. The good thing is that after day 29, shedding has reduced to around +/- 300 hairs daily. I have my third chemo on Thursday, hoping everything goes well. I haven’t had a problem with the caps being too cold, probably because of all the hair I had. I’m afraid with all this hair loss, I’ll feel that "brain freeze" feeling I’ve heard about. At the end, with all the hair loss and bald spots which I’m able to cover with the hair from the top of my head, I still have hair. We have around 100,000 hairs, based on my numbers I've lost around 11% as of today. Praying that nothing changes and the shedding gets lesser.
I've got to the conclusion that the reason for the bald spots is due to the black elastic band was placed too tight right at the edge of the cap. This is the area of the cap that goes along the hairline, therefore the elastic band is pushing the gel away from this area. I tried to fix the left side, but couldn't fix the right side because I had the IV on the right hand. I even moved the needle and the machine started beeping. So I left that side alone. Will have to work on that on the last two chemos.
I'll post a picture tomorrow, to show that even with all these big numbers, hair still looks decent. I pray that it doesn't change.
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Thanks sweetmom!!! :-)
Let me share what I've started to do daily but especially on chemo days. After I wet me hair I use Nutri-ox thinning hair system or Nioxin thinning hair system. I started this 2 weeks ago and the shedding has went wayyyyyy down. Last week was very minimal and this morning when I wet my hair is normally when most shedding happens when hair is wet. I had maybe 20 shed hairs.
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Akevia - your hair looks beautiful!
Sweetmom - I'm impressed you were able to count all those hairs. Love the math and the 11% figure - great way to be able to objectify it and help others who are losing lots of hair feel comforted!
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Sweetmom - Did you get extra gel straps to go under the black elastic bands? I used them an I think they helped as my hairline seems to be OK.
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