Cold Caps Users Past and Present, to Save Hair
Comments
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Julia mentions the rotten mouth taste. In my Tips table I list a product that was FANTASTIC at eradicating that effect. It is SmartMouth, a special 2 solution product you can get at CVS type pharmacies. For 10 bucks, it is a good bet.
PM me for "Tips Table:stay well during Chemo" material, anytime!
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motherofpat - I am seconding the molepad, advil/ibuprofen/ and electric blanet -- they are critcal for making the discomfort of the cold cap experience very mild.
Colleen
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THANKS TO ALL OF YOU!
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Hi, I'm the patient that motherofpatient is writing about. I was just wondering what chemo regimen every one is on. I'm currently scheduled to receive Taxotere/Carboplatin/Herceptin every three weeks for 6 cycles. I've read that Taxotere has a 3-6% chance of permanent hair loss so I'm wondering how well the caps are going to work. Please spell out your drug names so I know which drug your getting since many start with the same letter.
Thanks
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Welcome Steph! Glad you made your way to our little group. I'm HER2+ as well and I received 4 cycles of Taxotere/Cytoxan along with Herceptin that I will be getting to finish out the year. There is definitely incidence of permanent hair loss with Taxotere but not sure how high the chances are and what the circumstances are for those that that unfortunately happened to (how high a dose, other health conditions).
As far as the women go on this thread, and there have been quite a few of us, the caps work great with Taxotere. I think there is a 90+ success rate with Taxotere/Cytoxan, Taxotere/Carbo, and Taxol (I have no scientific proof of that 90% success rate but that's what the PCC folks are saying these days). Of course you will lose some hair but for most people on these regimens it is not noticeable to others.
Good luck and please come back and let us know how you're doing.
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Hi everyone,
I am getting a little on edge as the time approaches to start on Jan 6th. I only have my husband to help me and I'm pretty sure he won't be able to handle it alone. He isn't great under pressure and he is very overwhelmed with my situation. I wish I could find some medical(maybe oncology)student or a nursing student who would be willing to help, even for a few hours. I've gotten an electric blanket and a mirror so far. I've located some of the hair products, but haven't gotten them yet, same for some of other items to ease side effects. I am feeling panicked about not having help and am worried we won't get it right.
If I order the Sea Chi hair conditioner on line and the thermometer from amazon how long does it take for them to send the stuff?
Did anyone have a full body scan or PET scan to be sure there was no cancer anywhere else? I am so scared they missed something.
to mtri1111: where do you get such a pillow? How big?
I am rambling, because there seem to be so many details to handle and I'm worried I will forget something.
If anyone has a suggestion about a volunteer to help me with the caps, PLEASE let me know.
I didn't get a haircut as Drim and others advised not to.
Again Happpy Holidays to all Good Health and keep positive!
Nancy
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To Steph42:
I am starting around same time as you for TCH every 3 weeks for 6x(Taxotere/Carboplatin and Herceptin), then Herceptin alone for 1 year. I will also have 7 weeks 5x a week of radiation-I'm not sure when that fits in--after chemo or after Herceptin is done?? What city are you in? I am in New York.
My best wishes to you for an easy time with little or no side effects and a sure thing of keeping your hair! Keep us posted as to how you are doing. I will try to do it too.
Nancy
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Hi Stephanie! I am on the same regimen as you--- today is day 17 for me---- I have had one tch --two herceptin--#2 tch on wednesday----so far I am shedding more the last three days--mostly from the nape of the neck--the caps are hard to reach there--so make them as tight as you can--at the neck line---my fingers are crossed--I wish you the best of luck!!!
Sharon
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Hi Nancy It is only my fiancee and me--we do just fine---I have tch too--the neck pillows you can find at bed bath and beyond--I think walmart carries them too---I bought my themometer from sears--don't forget the electric blanket it will keep you nice and warm----Just take things one day at a time---you have lots of support here! Best of luck--you and your Husband will do great!!
Sharon
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Steph42 -
Welcome! I have just completed the Taxotere, Carboplatin, Herceptin 6 cycles every 3 weeks. You will find it referred to as TCH. I'm a week and a half out of my last treatment and my hair is still with me. From what I've read here, many women on TCH do well with the caps. I've noticed a lot more shedding after this last cycle, but hoping with no more chemo to go in me it will calm down soon. From looking at me you would never know I shed so much hair. I asked a few friends who hadn't seen me in a while to give me their honest opinion about my hair and they said they could not tell at all, just some dark roots growing. ha.
keeppositive:
I had a helper the first time to show my friends how to do the caps and he did it all by himself. It can be done. You just have to be able to hold the cap for your husband. Secure the chin strap first as tight as you can stand it, then loosen it at the very end so it's not uncomfortable. It will help hold the cap in place while putting it on. Then you hold the top with one hand, or even the sides with both hands so he can do the velcro in front and back. Don't be afraid to re-adjust. The first few times will be challenging, but after that it becomes routine. If your infusion center has a nurses stool on wheels, it helps for applying the cap so your husband will be able to get to all sides of you. We did that and then I got back in the comfy chair after.
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michcon - congratulations on being done!!! YAY!! You probably will have shedding for a little while longer (a few more weeks) but you probably won't notice too much if any of a change in your hair. Eventually the shedding stops and you go back to normal (or in my case even better than normal shedding). I remember being surprised at how long it took. I was thinking maybe a month after last chemo but it was closer to 2 months. Good advice on the stool. That's exactly what I did so that my helpers had full access to me. Nancy is going to the same place I did so there will be a stool for her.
Sharon - it sounds like you are all settled in to your routine. I hope you are feeling well and have minimal side effects!
Nancy - you can also get a thermometer at Sears or auto supply place. Just make sure it goes down low enough. If you order it from Amazon they can ship overnight if you pay for it so for sure you can get it in time. You're lucky that you will have the freezer so you're not going to have as much of an issue with inconsistent temperatures and severe freezing of the caps, but still - make sure you wipe the frost off those caps. You will have a big table to work on and the whole freezer thing will make it a lot easier on your husband.
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Michon- Congrats on being done!! yay!!!
Keeppositive- you can totally do it with just one person! my mom and i do them alone each week with no problem! your husband will be relieved to have something to do and check and take care of, my husband came the first week and could not handle the chemo thing at all! so we sent him to work each week and my mom and i go ourselves, but your husband will be very greatful to be in charge of something it really helps and you get so used to it you will be pros! its all so overwhelmed at first but you really see after the first time that it all works out! i was a mess the first week but really it becomes part of your routine! you will be great! hang in there!
Steph and Motherofpatient- you both remind me of me and my mom, we are on week 11 of weekly taxol and herceptin this week and next week to go and we are done! my mom is my helper, just the two of us each week! you will do great! and about the barretts i got the ones from walgreens or any drug store really, they are just the straight plastic barret with the prong clasp they dont pull and are perfect for your hair looking normal!! hang in there once you get started you will be fine!
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keeppositive--First, after doing the cold caps (4 TX @ 3 weeks) and reading all these threads, I am convinced that there is "tolerance" in the cold cap protocol. You will NOT lose your hair if one cap stays on over 30 minutes because a nurse needed to take some vital signs; you will NOT lose your hair if a cap is a couple degrees off; and you will NOT lose your hair if you have to readjust a cap after you put it on. As many have said, you will find that having a task for your husband to do is a wonderful thing.
My husband was Helper #1 and then I had someone else for Helper#2 for each of my treatments. Helper #2 did help schlep the coolers and helped me get out of bed into a chair for the cap exchange (BTW-most facilities have you in lounge chairs, not beds); but mainly the helper #2 provided comic relief and conversation while my husband worked the caps. The first 3-4 caps will be stressful -- after that, it starts to get boring.
You can do it!
Colleen
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Michon~ Congrats on being done!! YAY! It feels so good to turn that corner. What a great time to be finished, right before the New Year. You'll be able to step into 2011 putting this behind you. Welcome to our "New Normal"!
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Way to go michcon!
I have been cheering for you the whole way...
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Drim, Ang7, jpmercy, GAgirl01:
Thank you all for your support! Everyone else on this discussion board too. I would have never made it through without all of you. The advice, the support and encouragement have been better than any my friends or family could offer.
Now, on to Radiation! But, thank goodness, no more cold caps!
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I'm so impressed! Michon - congrats!! What a great gift for 2011!
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Michon - belated congratulations for finishing chemo. Radiation is so much easier.
Colleen
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Congrats on your finale of that part of your tx MICHON!!
I lot scared today--day 18 I have already lost 60 some hair upon waking up==I know 100 a day is the normal--should I feel as terrified as I am right now????? Yesterday--I did not count but it was numerous?????
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Sashaz3: You will be OK. I have really thick hair and a big head and I think I lost more hair than almost anyone on this board (maybe 1/2), but my oncologist still thought I had plenty of hair to declare it a success and recommended the caps to someone else in my town. I just finished four rounds of taxotere and cytoxin on Wed--yeah! Virtually all my loss is from underneath (not visible) where things didn't get as cold; my hair is much thinner but not to the point that I look like a cancer patient. Your hair may not look as beautiful as usual, with the dryness, no styling, root growth etc, but hey, it's hair! It is a scary time; I know; I've been stressed out throughout, but 60 hairs is a tiny, tiny amount relative to how many you have. If you're like many women on the board, the thinning may not even be noticeable at all by the end of your treatments. Hope this helps. Cindy aka Lucky60
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Thanks for all the congrats!
I just had to share something funny. I went for my Radiation Simulation today and they lay you down and make a mold with some chemicals that smell so wonderful with my chemo nose. Anyway, they said it would feel warm, well, it was almost hot and I started freaking out that I was laying my head of hair in something hot for too long! It felt like a heating pad on my head. I asked the girl if I could sit up and told her I'm not supposed to even blow dry my hair with heat and laying in heat can't be good. I spent too much time and effort to risk losing hair now! Of course they thought I was a nut.
Do you know how many nurses don't know about cold caps? Amazing. Saw 3 today in Radiation and only one of them had heard of it because of another patient. And I was at a hospital that has freezers and does the caps! So nutty to me that word is not out about them. I make it a mission to tell as many people as I can.
Also, is Frank tracking our progress at all? Seems to me he should have a survey for us to fill out when done or something....
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sashaz3 - I didn't count, but I'm sure I lost more than 100 hairs per day! Like Lucky60, I had thick hair and it thinned alot. But only I and close family members knew how much it thinned, other people just didn't notice. Chemo is rough on the overall quality of the hair. I started chemo (last July) with hair past my shoulders and now have collar-length hair to blend the areas the that thinned. In another few months, I think it will look almost like it did when I was diagnosed last May.
Colleen
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Sharon~ (sashaz3) I'm with you (in the anxiety phase...AGAIN) -- I am also feeling icky from SEs of #3 last Thursday...so mentally not in a great place. Few days after were great -- even ran on Christmas Day... but today is not good so giving myself a stay in bed day.
I'm afraid one of my helpers was not good with the temperatures.. and been shedding a lot and in "countdown" mode again. I'm finding hairs everywhere and I have thin hair .. so when wet already looks much thinner.... but noone else seems to think that it looks much different....hoping they can hold out through this time and ONE MORE! Still trying to have faith and know all of you have had such success!!!!!
Day 46
- know you are all sick of me counting.....can't believe I only have one left... 0 -
Thanks for some positive feedback----it's just a bad mental day--already fearing tx two--knowing there will be four more--I did so good after tx one--feel so strong now--I hope I can hold on to it--don't want to lose my inner strength----
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sashaz3~ We can do it!!! Thanks for your message -- will find my inner strength too.
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OK, a new detour in this arduous journey for my daughter - cellulitis in the affected breast. Anyone had this? How it it resove itself for you? Thanks much and love to all of you trail blazers. Penguinistas - I love that!
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Need your help once again - I have spent 3 hours trying to find the right Sea Chi leave in conditioner but canonly find it for curly hair. What is the exact name of the product recommended on this site? Thanks
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Hi everyone, I have been following these posts as I prepared for Chemo. I started TC on Dec. 15 with cold caps. I think everything went well with the caps. I had both of my daughters as well as my significant other helping. They did say that the edges of the caps, especially the thin parts at the nape of the neck were warm when they took them off, so I am thinking I may lose hair there.
I am feeling well right now but anxious about "shedding" I was so happy to read the last several posts that included numbers of hairs shed. I thought I was the only one who was counting hairs after each shampoo! It is encouraging to read about the positive experiences of everyone, especially when I start to panic about the number of hairs I am losing. Anybody know how many hairs there are on the average head?
To the inquiry about cellulitus. I also had it in the affected breast. I was on antibiotics for 10 days and the infection cleared. They did postpone the start of chemo until the infection was gone and I was finished with the antibiotics. I have had no additional problems with it.
I got the list of tips from mtri1111 and have been following them closely. The electric blanket was a real help, also used the neck pillow. We also adopted a suggestion of another cap user and purchased digital refrigetor/freezer thermometers. We put one sensor between two caps in the cooler and then mount the digital display on the outside of the cooler. When the caps reach about -45C we move the dry ice out of direct contact with them and they hold at that temperature until my helpers take them out and get them to the final temperture for fitting to my head.
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Kathy119,
I am also doing TC and have had 2 sessions so far. I am day 25 now from the first treatment session and have done 32 cold caps (16 each treatment session). I have not had any hair loss to date so things are going well. I have 2 treatment sessions left. My husband is the sole helper that I have and does a great job. We put the caps on ice the night before the chemo session and by the time we get to the infusion they have to be taken out 1/2 hour prior and they are frozen solid. He can then work them down to -32 degrees slowly. A digitial thermometer is very helpful as is the electric blanket. The neck roll is beneficial as it provides some comfort and also acts to provide compression at the nape area which is difficult to get compression.
It is normal to get some shedding. Don't let that discourage you. It does not mean that the caps are not working and in fact is expected
J
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MotherofPatient: Here is a link to the SeaChi site, Go to Products--Hair Care and look for Leave On Moisturizing Treatment & Hair Growth Formula:
AND, I just got an email with a coupon code for 45% off until Jan 4 2011:
"Enter coupon code word HAPPY2011 (one word) when you check out of the shopping cart"
--hopefully it will work for you! I don't think you are supposed to get the conditioner on the roots during treatment though. I just added water and used it dilutely on the ends if you need to, to be able to comb through.
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