Cold Caps Users Past and Present, to Save Hair
Comments
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Nancy,
The curliness is from post-chemo regrowth, and is temporary. (Not everybody gets the curls, but the majority of women seem to get some kind of temporary change: curly to straight, straight/wavy to curly, comes in grey, comes in a different color...all kinds of things!) I have two friends, one two years ahead of me and the other one year ahead of me. They each lost their hair doing TCx4@3, it regrew super-curly, and now has returned to their normal pre-chemo texture.
Julia: which station had the story on aromase inhibitors? I thought Femara was standard post-menopause, based solely on the experiences of my post-menopausal BC friends.
I realized this morning in a couple of weeks I'll be one year PFC! I meet with my surgeon tomorrow, routine followup. I'm starting to be calmer about these checkups.
Susan
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I inquired about the Cold Caps at my treatment facility. They have an ongoing study there. I was told the caps would cost $500 per month plus the cost of dry ice. Then, you have to bring the cap to the infusion center the day before treatment because they do not have enough freezer storage space. However, because my chemo regimen included AC, the study coordinator stated the caps would likely not work well. So, I was dissuaded from using them. The nurses at the infusion center tell me the results have been mixed, with a fair amount of people still losing hair. I say, if you have the time and money, why not try it.
I am nearly halfway through DD Taxol and still have my hair (although, it's thinned a lot). It probably won't last another week or two. But, I am thankful that I didn't shave it right away.
Best of luck to everyone who is using them.0 -
Hi everyone,
Well I am one week after my 4th infusion of TCH and still have my hair, albeit I can feel a few strands shedding on my arms sometimes. I still have the fear I will wake up and find it all on the satin pillowcase but so far so good. It was great to walk outside in the wind and rain yesterday and feel my hair moving in the wind. The nurses say nothing to me nor ask me anything about it. Since I am the first one doing it at a rather large infusion clinic I think they are just ignoring me as some of them had told me initially it wouldn't work. I have greyish/black roots which are about 2 inches long so I guess that means that the hair is growing while I am having chemo?? They had several products at beauty supply to paint on the roots and I got one that is like a large ink marker. Has anyone tried those while on chemo?
More bothersome is the fatigue, 10 days post chemo would like to just stay in bed as I feel achy and don't want to move. I am now anemic and trying to eat more foods high in iron. Hopefully will not need a blood transfusion. Ideas welcommed on how to combat the fatigue.
Congrats to all those who got through this. Your words of encouragement have really helped. I am not sure they will recommend radiation but hearing your experience has made me less fearful of it.
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Serenity: I too am anemic now..keep taking the iron. From what my doc said it will take some time before iron can recover so keep eating iron rich foods too. As far as fatigue - I was really tired in the 2-3 weeks following chemo - more than I was during chemo. I mostly noticed it in my legs....the burning tired thighs and just some lack of energy. It is much better now and I am almost 5 weeks out. As far as fighting fatigue, I really think exercising has helped me a ton. The days I am off from exercise, I have less energy. It was like this all through chemo too. Keep moving if you can - even just walking can help.
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Hey ladies~
I am a year out from chemo and still anemic.
Still taking iron. I was anemic after having twins 14 years ago, so it did not surprise me.
I also have fatigue a year out and I do not know if it is due to the anemia or the 4 kids.
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Hi ladies; I will be starting my chemo soon, not sure exactly when but i think in the next few weeks or so; meeting with my med onco this week then i will know for sure. I am just curious to know how the PCC work, and how do i get hold of them? I am told that my chemo will be the "lighter" version not the aggressive one but i am still scared of the thought of losing my hair! I have 2 young kids (4.5 & 3) and I am scared of the thought of not being there fully for them.
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Snoopy: I just PM you the information. Read as much of this thread as you can...you will learn a lot. Ask any questions....we all don't mind!
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Hi Snoopy,
Welcome, although sorry you had to join us in this way. Look up "Penquin Cold Caps" on the internet--just google the name and you will see all about it, including a video of how its done. After seeing it come back here with any questions and we will try to help you. You can also call the Penquin people and discuss it with them, or do both.
Keep Positive ,keep smiling and keep laughing!!!
Nancy
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To sebm9,
What I was trying to say earlier is that I know people who got the curly hair and did not have chemo, they just had Cancer. They didn't loose their hair, it just changed from straight to curly. I was wondering if this phenomenon is due to Cancer and not to chemo.
Nancy
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Welcome Snoopy:
Happily sad to see you here but you'll find a nice group of friendly, healthy(meant helpful but healthy is good too) people. I'm using the ElastoGel caps which aren't quite as good as the PCCs but easier to use and much less money. I won't recommend either but you can research both and make your decision. With the EG's I changed them every 20 minutes and use a lot of velcro to keep them tight.
Just finished #4 and I still have hair, thin, but hair and no wigs or scarfs. The top and bangs looked pretty normal but I don't wear it down but back in a low poney tail...ways to thin.
We've been told to stay away from the Advanced Caps since the rumor is they use old caps versus new ones. Mine were brand spanking new. I do use pretty much the same protocol as with the PCCs. Good luck and welcome.
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NEWS: My onc dropped me to 4 versus 6 TCH SO today was my last chemo and I'm back on Herceptin; 2 down, 15 to go. I was nervous about dropping the last 2 treatments but she assured me she felt there would be no difference in my results especially since my tumor was so small. So very soon, I'll start the marking for my Radiation which begins in a month. Long day today since the Herceptin was 90 minutes, Taxotere 60 minutes and Carboplatin 30 minutes plus the premeds 30 minutes. With all that and blood draw and doctor appt, long day and then stopping every 20 minutes to change caps on the way home (we live 65 miles from the center), long, long day!
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CONGRATULATIONS ARLENEA!!!! Woo hoo!
keeppositive: I see, I misunderstood. Thanks for clarifying.
Snoopy73: I just PM'd you. I'm guessing you'll do Taxotere Cytoxan (TC), and the success rate for PCCs with that chemo regimen is outstanding! We'll talk you through it, you aren't alone. You caught your cancer early, and you and your kids are going to have a long life together. Maybe they'll be able to help with the caps in some way, and have a positive truly helpful role in your treatment.
I had my scheduled surgical followup today. My surgeon had a new NP, and as she examined me and we discussed my case, she kept giving me That Look. That "let me discretely check the chart to be sure she went through chemo because she has a very full head of long hair" look. Then she said "Is there something different with your hair?" I started to answer "Yes it's a little curlier than before..." then I realized what she meant. So I told her about PCCs -- she'd never heard of them -- and she wrote down everything I gave her: the website, links to current studies, links to scalp mets info on PubMed, our discussions here. She was jumping up and down, made me feel great.
We will always be the ones coaching each other through this, but it'll make such a difference once this is established in the nursing and medical community.
Susan
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Congrats Arlene! That's great!!! Ya hoo!!!! I am so happy for you. No more caps either which is nice. Now we can both say PFC and wait for shedding to stop.
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Congrats Arlene!! I think you asked if i finished with the elastogels, I did, I have a huge bald spot on the top of my head due to the caps not fitting right and not enough dry ice on the first chemo session but when all is said and done I am so glad I used cold caps to keep what little hair I have left. I am 5 weeks out from final chemo and shedding this morning seems lighter then in the last few weeks. My bald spot from my first chemo has not yet filled in, which by now I would have hoped it would have. I have to wear hats all the time till my spot fills in. On to radiation!!!!
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Thanks Ladies: My plan is to continue with the caps daily for a few weeks to keep stimulating the growth.
All the nurses, new and old, were coming it to see how I'm doing with the caps. One nurse said I am the first one out of 33 ladies who has had success - that amazes me.
Hoping the shedding isn't too bad.
LeeAnn: Sorry about the bad spot but you have more than you started with and that should begin coming back in soon too.
Off for my Neulasta shot now and get talking about the prelims for Rads.
Arlene
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Arlene, I am so happy for you that you are done!!!! I have had 3 tx of taxotere and carboplatin and pray that my doc will say only 1 more to go but I think he still wants me to do 6.
Is there anyone out there who has had problems with their expanders getting infected during chemo?
Chris
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Thank you ladies for all the info; I will do my research and will keep you posted with any questions. Thanks you, much appreciated.
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mdg..... Thank you for all of the information! Chemo has been postponed to next Thursday so I have some more time to get prepared. Did you use Nioxin for washing your hair? My hair is normally oily so I am worried about only washing it once a week but I'm desperate to keep it! I will check my deodorant to make sure that it doesn't have aluminum.
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Sheila,
Toms makes a deoderant that is aluminum free that you can get at any drug store. The only problem is that there is no antiperspirant that I have found that is aluminum free. Don't worry about your hair getting oily as the chemo will dry it out. Mine started out oily for a few weeks and now it is dry. There are many great paraben and sulfite free shampoos out there. I found one at Sally's Beauty Supply. I also use a great leave in conditioner that is expensive but very good. You can go to Seachi.com to order. Also, get a very wide tooth comb that they also have at Sally's. You will do just fine....good luck!
Chris
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Had my second treatment of taxetore and cytoxan last week with PCC. Does anybody know what to expect in terms of shedding etc.? I mean, when and how much? So far so good except I lost hair above my ears. Thanks
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Does anybody know what to expect in terms of new growth with taxetore and cytoxan with PCC? How long does it take, and what kind of growth to expect? I am scheduled for 4 treatments, have completed two. this is surely the longest 3 months of my life!!! thanks Hadle
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Hi ladies,
I had my 3rd TCHx4 last friday. I do not get any side effects until Saturday night, do you have the same experience?
For anemia, I'm taking "Floradix" Floravital Iron+Herbs, it is a liquid formula, easily absorbed, non-constipating, yeast+gluten- free. It's being working for me, every week my hemoglobin it's higher.
I'm using the PCC, and still have a lot of hair. I had notice that it' being growing. I am the first one using the caps at the clinic, nobody says anything about my hair. My doc were not that happy when I told him about the caps, so I guess they don't want anybody to know.0 -
Hi all - new to the forum and first post. I did neoadjuvant treatment with gemcitabine/carboplatin and lost some hair, noticeable only to me. Now I am facing treatment #2 of 4 taxotere/cytoxan on 6/9 and am using the PCC trying to hang onto what is left. Started noticing the all-too-familiar "shed" on day 19 after treatment 1. Some questions for those of you who have gone before:
- is your hair supposed to be clean or dirty on treatment day?
- how detrimental is gently washing your hair more than once a week? 3 days is about the max for me and I am working and need to be presentable
- is rinsing/wetting hair each day ok or considered taboo?
- is there benefit to wearing the PCC in between treatments? What is recommended?
- why exactly is a haircut bad for the follicles if the hairdresser is aware and is gentle?
Thanks in advance for your input and advice!
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Hadle: I did TC x 4 and did ok. I got done on 5/4 and still look normal to family and friends as far as hair goes. I am shedding a lot now....seems like more than during chemo. I don't know anymore!! I posted photos shortly after I got done with chemo if you look back in the thread in early May you will see the photos.
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Sheila: You might find that your hair only feels oily during the first week or two after the first chemo. The very drying effects quickly take over, and it balances out the lack of washing. For shampoo and conditioner (I did use conditioner throughout), I used Trader Joe's Nourish Spa shampoo/cond. Lots of botanicals, smells great, inexpensive, works wonderfully.
For deodorant, I think I tried everything. I finally tried Trader Joe's unscented deodorant, chemical free, but it has microscopic cotton fibers in it -- really absorbs perspiration! And I really give it a workout, being very active -- work and play hard. None of it works as well as the aluminum deodorants, but I finally found one that worked for me. You might need to check around but it's worth it.
Taniak: Your hair should be unwashed for 2 days prior to each chemo. Rinsing daily in cool/tepid water is just fine; try to keep the washes down if you can. The agitation really pulls the hair and it is trying desperately to hang on. The haircut can shock the follicles; if you have long hair and trim the ends you might get away with it, but don't do anything severe. Frank recommends wearing the caps between treatments -- he began advising this after I'd used them, so I'm not sure the exact recommendation but I know some folks here can jump in on that point.
Hope this helps!
Susan
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Hi Taniak, The recommendation is for 3x a week for 2 hrs each between chemos. It helps the hair to grow. I did it and my hair grew alot during chemo. I also lost very little hair, but it got very dry and curly. Don't worry about oily hair, it wont be after a couple of treatments. Wash 1x a week in cool water, organic shampoo and conditioner only. You can shower in warm water and keep your head out of it. Then turn water to cool(not very cold) and wash your hair. Don't scrub or rub the shampoo in, just mix with a little water and pour over your hair and smoothe it on with your hands. Rinse using a cup or a small plastic container. Repeat a few times. Gently pat excess water off and air dry a bit. Then put non chemical leave-in conditioner on and gently comb with only a wide tooth comb. Start at top and hold hair at base and gently comb out and tangles. You may use a hair dryer that has a cool setting. No brushes-I did use foam rubber curlers-very gently and dryed on cool setting. No great styling, but not bald!!! You can wet with cool water daily, but no shampoo. No color til at least 2 months after chemo and then only with non chemical products. No cutting till them either, but can gently trim a little after 1 month past chemo. Some have trimmed ends after a few treatments. Hope this is helpful.
Keep Positive!
Nancy
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Susan and Nancy:
Good stuff again. Since I just finished chemo, this is good to hear again as I'm anxious to get back to normal and trim as I can barely see with these long bangs but don't want to pin them back and stress the roots. I'll continue on the gentle path for months and keep up using the cold caps a few times a week for a month or so.
Thanks Ladies you have been great during all of this.
Rads in a month.
Arlene
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Congrats Arlene! I trimmed my bangs several times PFC (a little at a time) and didn't have a problem. Actually my bangs were my thickest area and stayed that way. Of course it's not technically recommended til you stop shedding, so depends on if you want to take a little risk. For me, it was worth it! Lucky
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Congrats on being finished with chemo Arlene. I can hardly wait to be saying that!
Right now I'm waiting for the first tx shed. I'm at day 16, so far just stress shedding. I have to wash on Friday hopefully it'd not too bad.
I had to speak with a nurse over the phone at my oncs office today, the very skeptical one who is anti-caps and asked if I would be using them at every treatment. She actually asked how my hair was doing. I said the hair on my scalp was hanging in there, but my body hair is on a mass exodus. Her response - "really?" I get the impression she wants them to fail..... I so want to prove her wrong!0 -
Hi Lucky and DebRox:
DebRox: You'll do just fine...not shedding after #1 is amazing to me. I lost a gallon baggie full of hair after the first treatment. Trust me, you'll prove those nurses wrong. So surprised to hear nurses have that attitude...they should be on your side and cheering for you.
My bangs haven't lost much hair but I think I'll hold on and not even trim them yet...but hubby is getting tired of seeing them so long. Oh well!
I'll see if in a few weeks I can tuck behind my ear.Arlene
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Arlene: just to clarify, I'm not past first treatment yet, I'm at day 16. Still a few more days to go.
I do have very fine hair, so hopefully I don't shed as much as you. If I lost a gallon baggie full, I'd have no hair left.0
