Cold Caps Users Past and Present, to Save Hair
Comments
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I would love to speak with someone who was/is being treated at UCSF about how to manage the four hours post chemo -specifically getting home and keeping the caps cold enough. I have about an hour drive. I start TCx4 on Friday. I'm very nervous but hopeful!
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Momof4Girls,
Sent you a private message earlier with my number. Let's talk. Julia
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MOMof4: I drive 90 minutes home from chemo and the dry ice I pick up lasts through chemo and well after the 4 hours. It is so doable.
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Hi - did not do a wig here. Thought about it. There were many days that I thought I would need one in the future. So far, so good, at 7 weeks PFC!
On a somewhat unrelated thought, a cute everyday hat helps wonders for dirty hair or working out! I found two cute, casual ones at REI. I think I have become a hat girl!
Have a great day everyone...
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Annie I too sport a super cute hat by the end of the wash cycle.....I actually love it! It's rather stylish....oh and hides my roots too (bonus!!!).
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One more question for all of you...How long do you wear the cold caps after your infusion? I've heard different things and don't have a schedule from Frank yet. I've heard anywhere from one to four hours. I"ll probably err on the conservative side but thought I would just ask.
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friends
did anyone do CC with DD AC? looking through this thread, I see lots of mention of TC, PFC but not adriamycin. do they not work with AC? ... I think that's what I am going to get.
thks
brca1babe
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i've been told 4 hours after infusion.
Re: Wig - I'm just tired of hiding out with my bad hair. I have a few weddings to attend. Even if i styled my hair for one night ... the massive grey roots and the constant shedding would have me uneasy all night. maybe it's just me! i'd like to look like my old self.
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Just chiming in,
I am 6 weeks PFC and still shedding like crazy, I have to wear a hat all the time because of two huge bald spots right on top. I also have a 3/4 fall I wear under my hat on special occasions to make my hair look thicker. I also have a wig for back up. I see new growth on my bald spots but not enough to cover it yet, Can't wait for that. I am still grateful I have hair. I will probably end up cutting it short in a few months to make it look thicker. I also will sedate myself on my next hair washing (tomorrow) as a lose a lot at that time.
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the msc website fo cold caps doesn't seem to be working.
anyone have the phone number?
or an email address so I can order them?
thks
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What is a cold cap? I just got a port put in today. scared to death about what's coming.
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Southampton: It is a way to keep your hair by wearing frozen caps before, during and after chemo. I finished my 4 cycles of taxotere and cytoxan on 5/4 and still have my hair. It is thinner but looks normal to my family/friends. It stresses me out to see it thin but I still have a full head of hair. Google Penguin Cold Caps and you will find the website. The caps do work.....
I too was petrified of chemo...I did much better than I imagined. Some people handle it pretty well and it also depends on what type of chemo you get. How many cycles and what kind? If you are interested in cold caps you need to get it set up before chemo and have them shipped to you. It does take some work and planning but it was worth it to me.
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Hi momof4girls (are you by any chance the person I've been emailing directly with?) I have coached another woman who is at UCSF, she emailed tonight and is doing great -- one more TC to go. The staff there know the caps and system well, and she's been able to stay there to do the four hours post-infusion, and another time she brought some of the caps home with her to finish the night (then returned them immediately).
Feel free to PM me if you'd like her contact info, she's happy to help others at UCSF.
Best,
Susan
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Momof4girls: wear the PCCs 4 hours after the infusion has stopped.
Susan
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yes, that's me. I did email the other woman at UCSF. Thank you so much! I am now trying to get coverage for my kids so I can stay at the hospital for the four hours after. It seems a lot easier than trying to get dry ice.
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Mom - i wish I could help you by watching your kids! I am here in Minneapolis...
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I am applying the elastogel cold caps to my friend who has her 4th (and last) infusion of dose dense AC tomorrow. She has kept her hair so far. Because the infusions are every 2 weeks, we believe she has gone through only 2 sheds. So, we remain cautiously optimistic.
I wanted her to do penguin cold caps but instead she bought 5 used elastogels on Ebay. During premeds we do two 20-minute cap changes, start the adriamycin ten minutes into a third 20-minute cap, and then do 25-minute cap changes for the rest of the adriamycin push, through the hour of cytoxan, and then at least 4 hours afterwards.
We are a very mobile operation. Went out for sandwiches after the first infusion, and did the cap changes in her car.
Another woman who is using penguin cold caps every week for 18 weeks (!) in Santa Cruz developed a relationship with a family-owned dry ice distributor in Watsonville. They are now rooting wholeheartedly for all our local cold caps users, and giving us an astounding price on our dry ice.
My eyelashes came back unacceptably stubby. I'm going to investigate generic Latisse.
Have you hugged your cold capper today???0 -
Hi Grace,
Thanks for the update! My fingers are crossed for your friend and continued success. My helper was on the phone last night, helping a new helper. They are real heroes in all this! Great news about the dry ice distributor in Watsonville! That's way cool (no pun intended!).
xo
Susan
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Morning all:
I tell you, I think I preferred the drive home and stopping every 20 minutes to change the caps than sitting for another 4 hours at the Center. Our drive home went quickly, believe it or not, and when you get home you only have 2-1/2 hours left in the comfort of your own home. But, we are all different and what works for one isn't the best for the next.
Good luck!
Arlene
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brca1babe- i'm on 4 DD AC and 4 DD TAxol. Just finished my 4 AC and starting TAxol next week. I've lost a lot of hair, but only noticable to me.
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Hey MDG, the shedding subsided by 50% but it is still coming out. I washed today and lost allot but I think by next week all will calm down. Still no one can tell but me , I had allot of hair! had being the operative word.
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NMoss...glad it is settling down. That's great news.
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Hi All:
As for hats...I love them and wear them all the time, so when my hair looks like crap, I just wear a hat and since I have always worn them, no one thinks anything of it. I think they look better than a wig, unless you have a really good wig.
Best wishes to all of you doing chemo, and congrats to those who have finished!!
By the way, I have done 13, tomorrow will be #14 out of 30 radiation treatments and so far, so good. A little redness and a little swelling, but no pain, and no problems. No fatigue so far.
Keep Positive-Keep Smiling and Laugh Alot!!!
Nancy
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How are all of you wearing hats? i have too many loose hairs constantly falling out. i have to wear it up in a little clip or the hair is EVERYWHERE!!
For those curious about wigs, i bought one for $600. My husband was shocked when he saw it. it's almost identical to my pre-chemo hair. I'm very self conscious , and i have to admit, you could never tell it's a wig.
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I might be getting ready for a hat as mine is really scraggley. I do wear a ball cap a lot especially when it is so windy.
Ladies: I'm 11 days post #4 chemo and dealing with the yucky stomach. Nothing wants to stay in it but when I "go", I only go a little and often. What to do for this? I haven't had a normal meal in nearly a week because of it.
Thanks, Arlene
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Hey Arlene, Sounds like the chemo is getting to you in several ways. Since food doesn't taste like food, go for whatever you can get down. Listen to your cravings. For me it was salty things like a McDonalds or pizza. If you think it sounds good- go for it. Any food is better than no food and you'll be back into nutritional things soon enough. I'm thinking the "going" is #1. My guess is that you have a bladder infection. You should get a culture and check it out. (of course it's a Friday) If it's #2, you need stool softeners and Senna (the recommended natural laxative). Best of luck over the weekend.
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Hey Arlene sounds awful, I feel for you! Try rice its binds you natually and I did get bladder infections after TX 3 & 4 never had them until chemo
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Arlene: don't know if this will help. I took prilosec to help with weird stomach, which helped, the once a day kind for 14 days. I didn't take all 14 days. I was able to eat cottage cheese, whole wheat toast and watermelon. Or i would eat bran buds with banana. They were easy on my stomach. In addition, I took miralax everynight until issues were resolved.
Hope this helps. I know how hard it is.0 -
My sister tangled her hair using Kiehl's shampoo Sunflower 'color perserved' shampoo!!
First she used the Kiehl's sunflower color preserving recovery pak conditioner and then she thought the conditioner felt to 'heavy' so she used a little bit of the Kielh's shampoo (Sunflower color preserved shampoo) AFTER the conditioner. The shampoo put her hair in tangles. Is there a detangler she can use? Also, what is the best shampoo, or conditioner, for the future? Thanks for the rescue.
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momof4girls Are you going to UCSF the night before to put your cold caps in their freezer? If you do, they are very cold, So you can just put the 7 you will need in a cooler with a little dry ice. (That will cover the 4 hour post treatment).
Put the first one on at the infusion center, so you only need to keep seven cold. You will have to stop on the road to change your cap, maybe twice. You can also stay in the UCSF Infusion Center lobby for awhile and change caps (thereby using their freezer as long a possible).
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