Cold Caps Users Past and Present, to Save Hair
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DebRoxs, hello you, pm me if youd like, im working with/for Frank Fronda now, i used the caps as well,
Chey
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DebRox: Some of us are also using the ElastoGels and I'm doing great with them as are others. The EGs we purchase outright (mine were around $450). I went for a test today and the when the technician found out I was on chemo, she was amazed/astounded to see I had hair. She had never heard of the cold caps so I gave her the lowdown.
Just wanted you to know there are several options available.
Good luck to you, Arlene
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DebRox - we took 2 coolers with ice. Was very easy. Best part is that they wanted us out of the way and gave us a private room! The day was made much easier by using the caps. I didn't have time to think about the drugs!
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LMFlynn - thanks for the reply. i'm DD 4 AC, then 4 taxol. i hope i have the same luck as you!. This dirty hair will definitely take some getting used to!
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They also gave me a private room each time...
I don't know if it was because people might ask questions?
We had a large cooler and some people thought we had a very large lunch...
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We also have a private room which is really nice and I have no complaints. Bigger tv and private bathroom. We only use one cooler and it works just fine but I only have 5 caps since the EGs cool back down really quickly.
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Hi everyone,
Just checking in, geeking up for the chair tomorrow, #3 out of #4, can't wait to say"only one more".
For those of you on TCX6, my onc said that new studies show that 6 rounds have no more benefit than 4 rounds, I also read on this thread someone who had 6 rounds to shrink her tumor before surgery found her tumor had stopped responding afer the 4th round which to me confirms the new study. Anyway research this yourself and if you find this to be true I would fight for only 4 rounds, i feel alot of us are being over chemo'd.
Sending good thoughts to eveyone in the chair this week.
Congratulations Maria for being done tomorrow, I am so looking forward to that in 3 weeks :}
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For the gals using the elastogels...no one is having thinning? My university says they have not seen anyone successful with the elastogels?! I wonder why.
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Good luck with #3 LeeAnn. Almost there. I was chatting via PM with another lady here and we were saying the same thing about being over-chemo'd. My #3 is next week and I'll be addressing this new study with my oncologist especially since my heart isn't liking chemo and I have those darn heart palpitations that I now find out may never go away and they are from the chemo and not the Herceptin..
I'll look for a link for the study.
Thanks so much for bringing this up and I'm so excited for you.
Arlene
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GeeWiz: I'm using the EGs and definitely have had thinning(I also started with VERY thick hair) but they are sure working and I'm the only one who notices that I've lost hair. No loss on the top though. Strange that your University isn't seeing success but you have to follow the strict protocol.
I was very depressed after TX#1 and thought it was over but stuck with it and it is working. There are several of us here using them and who still have hair.
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geewhiz,
Those of us who are using the elastogels are using the penguin protocol, my hair has thinned a lot but I still have hair, I have had two sheddings and have two more to go, I think I will make it. Everyone has shedding whether you use penguins or elasto's. Penguins have a better history and are more researched.
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What does it mean to be doing the penguin protocol and using the elastogels? They are made by different folks. I had a little thinning with the penguins, right around the ears, not really noticeable though.
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I need elastogel help.
Summer of 2010, I had fabulous hair preservation success with PCC's and TC. During that same time, a dear friend also went through 4 rounds of TC, though not with cold caps. Her hair has finally come back to a length she finds acceptable. Thing is, she now needs to undergo 4 rounds of dose dense adriamycin and cytoxan. She chatted with Frank, but just can't afford to rent PCC's. So she bought 5 secondhand elastogels online to resell when she's done.
This will be her third round of chemo. I have mentored PCC's to several other successful users by now, and appointed myself her cold cap commando. Since she's doing adriamycin, I secretly wish she had PCC's. But...gotta work with what we've got. I hope there are others out there who have had success with adriamycin and elastogels. Any tips would be greatly appreciated!
Back when I was cold capping, there were only 18 pages on this thread. Today there are 101!
Do elastogel users wet the hair before application, really? And it appears we're supposed to apply some extra hair covering. Anyone know what this is? I'm going to try to devise a strap system with...maybe ace wraps to try to get them tighter on the head, the crown especially seems loose. She's balking at keeping the cap changes going for four hours after the infusion-the directions seem to think only 45 minutes is necessary-but I'm going to persuade her.
...And, today I had lunch with a different friend who is using PCC's for 18-yes, EIGHTEEN-weekly cycles of carboplatin and taxol. She's completed 9 cycles and was saying that she thinks her hair might actually be thicker and healthier than when she started, due to the fact that previously she washed it daily, and now only washes once a week. (And yes, she has lost other body hair.) Neat, eh?!
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DebRox
I'm 4 1/2 months out of Chemo and my hair is felling back to normal. About 3 weeks ago I started blow drying it again on the hot setting and even flat ironed it a few times now. Trying to get the courage up to color it, but might wait through the summer. I'll post a pic of my hair now tomorrow compared to my profile pic which was a month before starting chemo.
It's just started to feel dirty again after 2 days without washing. Through chemo I could go 5 days and it didn't get oily, just a little itchy. I've been going every 2 days now instead of every 4. You will learn to love not washing your hair every day or even every other day. Getting ready is so much faster without all of the hair styling! You hair will adjust and won't get that oily dirty feeling.
I'm so happy I did the caps. I spent a ton of money and it was quite challenging on chemo days with the coolers and getting dry ice, but I would do it all over again to have my hair. I went on a Cruise 2 weeks ago and it was awesome to have my hair and feel like I was "normal" like everyone else. With the wind blowing hard on the pool deck I doubt a wig would have stayed on.
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ordinarymammal,
I am using the elastogels, first she has to make sure her caps are in good shape, I follow the penguin protocol. I wear them an hour before the infusion starts and change them out every 20-25 ( elasto's don't seem to stay as cold for as long) minutes and wear them for 4 hours after infusion, because my hair is really thick, on my second treatment I wet my hair down in the back where it is the thickest, then you cover your hair with a plastic cap and then the elastogel cap. I took ace bandages and put velcro on them, I made about 4 of them and use them to get a secure tight fit. Also she will need 5 or 6 of them, I think elasto people say you only need two, there is no way 2 is enough.
You can PM if you have any more questions
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Ditto LeeAnn!
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yes, but please remember AC is the most toxic out there, its the Red Devil, i know of only 1 lady on this site who used elasto, on AC and taxol,and they did not stand up, 16 times 8 hours a day in dry ice, she lost her hair.. elasto caps wear out fast, if you get them, I would not buy them used. Frank has his protocols according to your infusion times,and the amount of the drugs going through,how fast your drip will be, what drugs, it is very calculated. elasto gels try to follow these calculations, if it works, im all for it to save your hair!! and money, But If you are on AC alone,or AC and Taxol, i would not trust elasto gels, unless there is no other choice.
ordinarymammel, the important thing with the AC is the temp and making sure you keep it consistent, i would start at the 30 30 20 then chemo, just like you and i did back then. i would do some kind of straps, Velcro i would go two around the entire hairline, one on top of the other and one under the chin up over the ears on top of the head, with the elasto caps and AC it is so important to keep it snug and at that perfect temp. i would push her to 6 to 7 hours.from what i have heard the elasto warm faster?you can maybe change every 20,22 mins you know the routine,hehe, how thick is her hair? depending ,.-32 Celsius maybe, i so hope this works for her, she has been through enough, keep those fluids going while being infused, i never left the chemo office till i stopped peeing red. kinda freaky. Im glad she has you!!
Chey
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Hi Everyone:
I find it interesting about the 4TC versus 6TC. By TC I am assuming you mean Taxotere and Carboplatin, Which is what I had 6 of plus Herceptin(therefore TCH). I noticed that up until #4 the side effects got a little worse each time, but nothing that harsh. However, with #5 and #6, the SE's got much worse and I'm wondereing if it isn't because it was too much? I am 13 days out from #6 and the lousy taste in my mouth is the worst its been and it doesn't let up for a minute--ICH!!! and the neuropothy is very strong pins and needles all day and night in my toes and varying degrees in my fingers.
As far as oily hair---I used to have it and years ago a beautician/stylist told me that the more often you wash your hair, the more it stimultes the production of oils. She said to try washing once or twice a week whenever possible. I have done this for years and the oiliness has been controlled ever since. In the summer time, I have to wash a little more frequently, because of sweating more. Now my hair is very dry, from the chemo, which has made my skin dry too.
I really need to get a cut or trim, because it looks horrendous at this point. The back is curling up ,but very straggerly, the bangs are just a long stringy mess, and there is no style whatsoever.Forget about the color!!
How soon can I get a cut or trim? How do I instruct the stylist to do it? No pulling, no combing, except with a wide tooth comb and no products other than my shampoo and maybe my leave-in conditioner. Also no styling brush and no hair dryer. It almost seems not worth the effort and the cost! Well I'll keep laughing and smiling.
Keep Positive!
Nancy
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Maria~ Good luck today!!! Your last one! Let us know how you (& your hair) are doing!
I'm no expert but did a lot of research through my company when deciding on chemo and believe the TC studies are taxotere and cyclophosamide....TCx4was studied against ACx4originally...and how the protocol was approved....and some oncologist wanted to know if 6 was better...so the future studies were TCx6 and also against TAC ...I haven't been able to find any of the results on line....but am in full agreement that we are over treated per se.... And I guess I understand why...better to over treat than the opposite
With TCH, all the studies are x6....and the "C" is carboplatin. Haven't seen any studies that they are doing against TCHx4....
Still waiting on a cut and color....my hair still seems to shed too much ...but have been using blow dryer and curling iron....no styling products...but it feels normal and I'm so thrilled I have my hair!0 -
Hi everyone. My name is Chris and I am 14 days out from my first treatment of Taxotere and Carboplatin. I am using the PCC's and am just starting to see lots of shedding around my hair line. Can anyone tell me how long this will last and if this is normal? My hair is very strong at the crown but I am concerned about the amount of shedding at the hair line especially around the ears and neck. Maybe we did not get the caps down low enough.
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quill, the shedding is normal, you will shed through out your chemo, everyday, it is very common to lose most the hair around your ears, i think most of did, it is a hard spot to keep it cool enough. make sure your caps are low enough in front, they need to be down tight around the entire hair line, are you using two straps? one on top of the other! if no clumps buy the 21 first day, your there
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Cheyenna. Thank you for your insight. This is all so new to me as I have just recently been diagnosed. I had terrible side effects of the first treatment and wound up in the hospital for 3 days! If I can keep my hair, it will be one thing I can feel good about thru all this....I will let you know how it goes over the next 7 days of shedding!!!
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My onc gave me choices on chemo regimes between tc & ac + taxol. I have still not decided and am finding it very hard to decide after reading the SE on all. But, if the cold caps work better for one then the other that would really help me make my decision. Please let me know any opinions from you all & also what the penguin cold caps people say has the best results. I am really struggling with this & almost to the point of just no chemo at all.
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Hi everyone. I'm posting for my brother and sister-in-law. My sister-in-law is being treated at MD Anderson and is due for another round of chemo to begin. She's so happy to have some hair growing back and really wants to try cold caps to see if they will work for her. My brother is trying to arrange this for her but had some questions that I was hoping that someone could answer. Does it matter what chemo regime she is on? Is there a best place to obtain them? He said her treatment sessions will be about 90 minutes long- how many times would she need to replace the cold cap during that time? Thank you so much. I'll try to read back through the thread and learn more in the meantime. edited to add: does it matter how much hair she currently has? It's about 2 inches long.
Kelly
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Another weekly shampooing (brrrr) and minimal shedding. No more than I'd have lost with normal every few day shampooing. Keep hanging on hair and EG's keep doing your thing!
Tara: Wow, I'm amazed your oncologist gave you a choice. I didn't know anything and just went with what she told me was standard protocol for a Triple Positive which is TCH. Good luck on the decision making and welcome.
Arlene
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Arlene,
When is your next treatment? I think you are right behind me. Had chemo #3 today, I am still shedding from chemo #2. I can't believe how much i am shedding on top and sides where i thought that was the coldest. In the back where it is the thickest and I thought stayed the warmest is not shedding as much. Every time a shed this heavy it puts me in a funk. If my next two sheds are this much I will be sporting a mullet
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LeeAnn: My next session (#3) is next Thursday. Oddly, I haven't lost any hair near my ears or the base of my neck. I seem to have lost it where it was the thickest (in the back) and it is pretty thin but I'm still hopeful.
Sorry but I have to laugh at the mullet comment.
Are you having 4 treatments or 6?
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tara, its a very hard choice, i will tell you the pcc, work best with TC.... AC, the A in the AC is very powerful chemo,....One ONC offered me TC taxotare/cytoxin x 4, and the other opinion offered AC x 4 and taxol, Please dont make a call on the best that will save your hair, PM me if you would like to know why i went with what i did...
Chey
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I AM DONE AND HAVE HAIR! OK ladies...had my last TC treatment today and I won't have to ice fingers, toes, mouth or head ANYMORE! If you can't tell, I am very excited about that. I have my hair. I know I could still shed some in the next several weeks, but it will be OK. My BFF came for my last chemo and she had not seen me since before chemo. She said I look just like myself and she could not tell....what a good feeling. I will try to post a photo this weekend after my next wash so you can see me with a PFC hair update. Hang in there ladies. The caps DO WORK and you will have hair.
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