Cold Caps Users Past and Present, to Save Hair
Comments
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Tiki I answered your PM. Hang in there.....
Leann56. Thank you for all your info... This is worth sharing, I think. Ihave been mixing 2 colors of the 'beautiful collection' hair color..red and brown. The dye has eventual turned into a bright burgundy in patches on my hair. Leann56 who is a hair professional told me that tends to happen when u mix browns and reds and the heat from head can make color brighter. Sooo not a big deal and I can color over it. But learn from me and don't mix the colors : )
Mdg u look beautiful! Thank you for sharing. Best of luck on your move.
Ralston...your kind words lift my spirit. You are the sweetest. I will be thinking of you tomorrow. You and your hubby are a great team... You are making this look easy. I wish I had all your research and knowledge before I started!
Re the Latisse I used the generic purchased on the Internet from the link mtri111 provided. I still use it a few times a week. My brows and lashes grew in full. I used it throuought treatment. I am not sure if it is ok to post links on the board. If you do a search for generic Latisse it should come up.0 -
morning ladies, thanks for all the advice, encouragement, highs, and lows. One thing that seems to stand out with all of your posts is that you will not loose all your hair. Some will loose more than others, and that could be genetic, or situational we may never know. Another thing to keep in mind is that if you are doing the caps and are on this board you care about yourself and you're future. You choose life! So many women I meet that have had or are fighting BC don't even know what their diagnosis is, or take any supplements or eat healthy or exercise. All the things that help fight BC. So ladies when you are having a bad day remind yourselves you are doing everything to beat Cancer. I know all hate to say the "c" word and I choose to believe that I don't have it anymore but am doing everything I can do to keep it that way.
An acquaintance from my shop whom I've known over the years in several circles came in and I didn't even recognize her. She looked familiar but couldn't place her until we started talking. She looked as though she was in the throws of chemo and radiation. her head was shaved and she did not look well. I asked here when she has started chemo and she said she hadn't, I was confused. Then I told her i was doing chemo for BC. She said she had had BC and only did radiation and tamoxifen. That was 10 years ago. Then it dawned on me, called a friend and found out she has brain cancer. All of our worst nightmares, her bc had a recurrence. I cried, thinking oh my god, this could be me. But then I reminded myself I"M DOING CHEMO! so the choice to do chemo and take care of yourself can win many battles in the fight of BC. Plus if you are here on the forum I suspect you are more of a fighter than most. Don't beat yourself up, stand strong with a lot of hair or just a few, you are all beautiful warriors and will win you'r fight against BC
hugs
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Dexxy, good reminder.....to all of us.
Tiki, I used Latisse for a week or so, PS wrote me script....but honestly...it all became too much and I stopped...they grew back really quickly on their own....just emotionally I can't define the day or week...you realize you aren't shedding or worrying as much....I used cold...yes cold water for 5 months.... Then even when shedding slowed I had become conditioned :-)...and kept it up....today I still turn down the heat to rinse and wash my hair....
Its the doubt that freaks us out....fear... I hate that bugger emotion!.....but especially with TC the results are pretty consistently successful with the PCCs, and AC sisters...I know how hard that can be on hair...but many many have success.....have faith Tiki, you will make it through ...new normal for awhile with thinner hair....but once the shedding slows/stops...you will be so happy and wonder what all the fear was for ....
Maria by the way....you look awesome!!! Lisa0 -
Dexxy - Thanks for the reminder. Most of the time we beat ourselves up so much we forget to count our blessings and see the positive, so Thank you for reminding us! I went to see an old family friend on friday, she hadnt seen me since i started chemo etc, she was amazed on how i looked with my hair and all, she said i looked good. Altho my hair is extremely short at the abck and long infornt, and i had a head band on, she sadi i looked good. That really made me feel good, and Thank God for the Cold Caps, i am so glad i use them.
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Sashette, thank you for the information. I already using silica.
Dexxy, thanks for your encouraging words.
Lisa, I think, I'm not going to get Latisse, since everybody is saying eyebrows will grow back in couples of weeks. Thank you for your advice.
Snoopy you are right, I have received so many blessing and I will keep praying, God always listen.
I feel much better, I just need to be patience.
Tiki0 -
Hi there ladies. i know there are quiet viewers to this site. Some of you are like me ... we haven't had as much success with PCC as the others. While i'm happy i used them, my hair is too thin to go out in public. I'm sure i'll feel a lot better in a few weeks. I thought i'd reach out to those that are having a hard time. If you PM me i can share my story, photos, etc. Just thought i'd throw it out there. I'm so happy for the girls that walk out of this with lots of hair. Good for you!!
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I did not lose brows or lashes until after chemo. I lost lashes about 8 weeks pfc. When they started thinning I started the latisse. My lashes are super thick and almost as long as my very long lashes pre chemo. My brows thinned a lot and once they began to grow they were filled in quickly. I prayed I would not lose lashes and brows but it happened anyway. Thank god for good make up. Lots of eyeliner helped when lashes were gone. My pfc shedding was way worse than my shedding during chemo and it really scared me that I was going to lose all of my hair. I still wash only once a week and sometimes once every 5 days. I air dry my hair too. I finally stopped combing it because too much comes out. I just clip it up most days and leave it alone. I am 13 weeks pfc and I think the shedding may finally be lightening up a little but I also stopped combing it so I dont really know for sure.
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Tiki- my eyebrows and eyelashes thinned A LOT a few weeks PFC but new hairs started growing in immediately. I did not use Latisse. About the time I was ready to order it, the new growth started and mine have grown back on their own. Eyelashes as thick as ever!
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Howard, in how many weeks did you have your eyebrows and lashes back?
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Tiki: Like you, and many women, the PFC shedding can continue for a long time. I felt like I lost more hair PFC than during treatments, and it surprised me. I was an early user of PCCs and didn't really know what to expect; I had it in my head the shedding would stop about 3 weeks PFC. However, after talking through this with other women for the last year, I now see that the PFC shedding lasts for quite a while -- several months -- and is normal. The biotin and silica suggestions are excellent.
It is also totally normal for many women to lose their eyebrows temporarily several weeks PFC. It can heighten the anxiety, to be sure! Mine came back naturally, and quickly and full, after about 2 weeks and I did not lose Latisse. Really, it was a very, very short time. I used a little eyebrow pencil for a couple of weeks and it was fine.
Everyone is different, do what is comfortable for you. Continue to follow the PCC hair care protocol until the shedding stops -- it may take several months (as it did in my case) but continue to baby your poor, stressed hair follicles! And boy, when your hair starts growing back, it can ROAR back! I lost at the nape, above one ear, and a little along the hairline (my widow's peak) and wow --first, tight kinky ringlets everywhere. Then longer ringlets. I now have big thick waves, almost to my ear in front, but they have a mind of their own. The hair I lost overall also has extreme body. If I pull it in a pony tail, it looks like a curly bouffant, but mostly the big curls won't stay still and go wherever they want. It's quite fun, actually...I call it my Medusa look! It's temporary, every day I can see my regular hair "look" more and more.
We're here for you, we've been through it, you aren't alone! The most important thing is, you've made it through chemo and you can concentrate on continuing to detox and on regaining your strength and stamina.
Best,
Susan
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I know how frustrating it must be to keep your hair after 4 months and then 2 months after treatment losing more and maybe having to wear a wig for 1 month. Please Former PFC’s correct me if I am wrong: My treatment will last 5 months. I have always though: “well, one month without a wig is worth it”, “if I’m able to finish 4DD AC with a little bit of hair I’m happy”, and “I would love to make it until Fall, then welcome a cozy fashionable knitted cap”.
Perhaps I am dreaming and I will be too sad when the top of my head thins so much that I will have to wear a headband to cover it and I will think it was worthless all this effort to keep it. Doesn’t make us feel good to know that even if we are losing hair after treatment at least we have kept it for a longer time and we are not going to start from zero? (because definitely the new hairs are so “strongly glued” to my scalp that I can’t see myself going bald). I don’t want to be afraid for the next 7 months!!! I want to concentrate in my recovery and better ways to improve my quality of life. Please take in consideration that it is Day 28 for me, I still have a lot of hair (but also I have already a snack bag full with thick and long hair), and my second treatment will be low dose Taxol that has less SE's post treatment, but maybe Sashette is right I make this process to sound soooo easy that I am in denial ;-)0 -
Ralston - you're not in denial. You'll be ok with AC - i was. It was my DD Taxol that had me shedding so much. That said, it's a daily, agonizing process watching your hair fall and wondering what will happen. The good news is that it will TOTALLY distract you from the chemo! Take one day at a time. Literally. i would go to bed at night and say "i wasn't bald, my kids weren't scared, i got thru today just fine".
Ladies - i'm 2 weeks PFC. I have large flakes coming off the top of my head. As they're lifting, they're taking hair with them. Anyone else have this??? Did you do anything that helped? Any advice would be appreciated.
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Hi everyone,
Regarding Latisse. I was using it on eyebrowns and eyelashes. But then my eyes started watering all the time, probably due to taxotere. My opthomoloigst said not to use latisse on the eye lashes with all the tearing going on. So I have lost most of my eyelashes. I am now 5 weeks PFC. but eyebrows and hair are still there YAY! . My hair is a lot thinner now and is shedding some but I still have it and my son who has autism never knew I was going thru chemo. I went to Yosemite last week and although I am still anemic and it was difficult to hike, I did it anyway. Felt good to have hair blowing in wind!!
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LivCar- Frank told me to take silica compound. I got it yesterday from a health food store, here they have two different brands I got the one with more miligrams. I am in my 7 PFC, I hope not too late for silica. I still have like 50% of the hair.
Love,
Tiki0 -
Thanks Tiki. I've been taking silica for about a week now. Hope that's the solution. Did you just leave the flakes alone? What did Frank tell you to do about them? Are yours lifting with hair too?
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i've lost track of the women using Dignicaps ... how are you guys doing? How about the other cold cap system, Pax-something. Is anyone using this?
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Frances is using Pax, I'm still using Dignicaps
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dexxy - are you happy with Dignicaps? I'm going to try to get my hospital here in Canada to run a trial. Do you know how others are doing with it?
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Liv Car
I had really bad flakes after my first infusion and did some research to find out what foods cure dandruff and dry scalp. Adding Zinc and Omega 3s were mentioned as natural ways to cure a dry scalp. I put two taplespoons of Wheat Germ ( high in Zinc, iron and Vitamin
and two tablesppons of ground Flaxseed ( high in omega 3) to my morning and afternoon smoothies. My dandruff and dry scalp has cleared up. Also, I have increased my intake of of walnuts and eggs. My scalp stayed healthy for my second infusion.I know that idea of certain foods can be disgusting right now but oysters are super high in Zinc too. I actually have weird cravings with the steriods so oysters have been on the menu for me.
Maybe this will help.
Diana
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Buenos tardes,
I had lots of flaking after my first infusion; it was the drying effects of the chemo, but no hair came out. It flaked between my 1st and 2nd hair washes, then ended completely. I think it varies for people (what doesn't!?! smile...) but I advise new users to be aware that it might happen.
The other kind of flaking can be due to the intense cold reaching the scalp more quickly, esp. for those with thin hair, or later in treatment if there has been heavy shedding, or for those women going through longer chemos and/or DD chemos, which are much harsher on the hair, gut, and liver.
For those going through the AC and/or DD treatments: you are some of the bravest women I know! Although we are measuring our success by how much hair is on our head, the success is really in battling the SEs of chemo. Chemo does tremendous damage to our follicles, and all of these scalp cooling systems will help protect from permanent damage or loss. The taxanes have the risk of permanent hair loss (the pharma co is pretty good at keeping that one quiet), and it's important to protect yourself long-term. The cold will also stimulate new hair growth more quickly.
I'm glad these systems are under study, and I hope they can quantify a little better the success rates of the systems when used with different chemo cocktails. When I was researching whether to use the caps, there had been European studies showing the success was quite high with TC, but not as strong with ACT.
Weird cravings: I craved apples all the time, and salty things like pretzels. Luckily, I didn't develop any food aversions, and as a foodie I spent so much time turning my bland diet into something wonderful, that I created some new dishes which have remained staples in my current diet. I completely decaffeinated during my first chemo (talk about a headache after the first infusion!) and haven't missed it at all.
In June 2010 I was able to meet Frank in person when he visited the Bay Area; he hosted a gathering of the then-group of past and present PCC users in the area. He'd need a banquet hall to do that, now. But he had just had a woman who started chemo, lost her hair, then found out about caps. She used caps for her 2nd+ chemos, and finished chemotherapy with 2" of hair on her head. We were in awe! I think that's around the time he began recommending that people could wear the caps from the freezer between treatments to help stimulate hair growth.
Btw, I had a nutritional scan today in advance of an acupuncture appointment tomorrow. I was really surprised: I eat whole grains, lean chicken or meat when I have it but otherwise fish, and 7-8 servings of fresh fruit/vegetables every day. But the cellular scan showed that I am barely in the acceptable range nutritionally, meaning my body is not processing all of the nutrients properly. The doctor was as surprised as I was. I'll let you know what my acupuncturist advises. I participated in a vitamin clinical trial a few years ago, and had a nutritional panel done at that time. I'll have to get it out and compare, to see what changed in the years -- maybe it will provide clues as to the cancer or my metabolism.
Y'all rock!
Susan
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LivCar- I never had flakes, but reading what soccergirl said it might be because I being using flaxseed for over 5 years daily. I buy organic flaxseed and grind it in a coffee grinder only enough for 2or 3 days. When you do it like this it has more nutrients.
Susan, thank you for all the info. I am the one that talked to you back in April, before I stated my treatment. And my husband talked to your husband also. This friday I' ll be 8 PFC. My treatment went well, only few SE, but no neuropathy, no nail changes, no headaches. My dr. said he was surprise on how well I did. But I was really weak for a week. Nauseas for 3 days. I got Emend and I think that make the difference. On my 1st treatment I was very dizzy, oh! And I gain 12 pounds because of water retention, I still have few to loose.
Love,
Susan0 -
soccergirl - thanks for the tip - i'll try it right away. What's strange is that i've lost sooo much hair, but my nails have never been stronger and longer!
PCC should be monitoring all of us - our diets, our success, our problems, etc. It will help for future women. All this good information is only available to those that follow the forum.
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I had my first infusion yesterday, and it didn't go too well. From the second I put on the first cold cap, the cold headache gave me sudden and really awful nausea. It would abate a bit as the cap cooled, but happened each time I put a new cap on (this sarted before they even began the chemo infusion. I have pretty much been laid up in bed since then with horrible nausea, and am seriously considering discontinuing the caps. Really dont want to add to my side effects, and if I have to choose between nausea and baldness I'd rather choose baldness. I know I'll have some nauseau anyway, but don't want to make it worse. Did anyone else have this experience, and what did you do?
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Tiki, you asked how long until eyelashes and eyebrows were back. Sorry just now responding. I've been out of town. They were growing in as some were falling out. An eyebrow pencil to fill in the gaps worked great and no one noticed. I avoided mascara while eyelashes were thin and made eyeliner a little thicker. Within two weeks a new row of eyelashes sprouted and are almost full length now. Did not use Latisse. Had terrible tearing post-chemo and dr. Gave medicine for that but it did not help. Time helped. After about two months the tearing stopped.
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Istreett: I am so sorry to hear about your nausea and headache when applying the caps. I did not experience this feeling, but wonder if nerves can cause the nausea. The first treatment is very stressful. I found that I felt very weird after this tx for a few days - kind of like an out of body experience. I did not experience that feeling the following treatments.
What I did to avoid the headache was take a painkiller 1/2 hour before starting the caps and I would take another one half way through treatment. I sincerely hope someone else can possibly chime in here to help you. I hope you feel better soon.
Howard: Thanks for the info on brows. Mine are falling out and have been since tx3 and havent resumed growing yet. I am 3 weeks PFC. I hope they start growing soon. For some reason eyelashes still hanging in. I am afraid to use mascara, I don't know how fragile they are.
I am now on the lookout daily for new growth to fill my thinning scalp. It can't come soon enough. Thanks again everyone for taking time to assist us all at various stages of our journey. This thread helps us all get through these anxious times.
Debby
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LivCar - just saw your message. In regards to the DigniCap, would i still have chosen it? Yes, I think they need to alter somethings but that's what trials are for. The women I know who used these caps that were super successful did have much shorter hair than I. Above the shoulders and layers. Whats strange is how much new hair has come in where I had lost it. Now granted it baby fine and blond, but my mom was laughing said it looked like peach fuzz. I've also had very little hair loss between #2 and #3 (tomorrow). But then I think that is because I lost so much in those first few weeks. We shall see what happens. With Digicap, I'm in the first group of 20 women in the US to be using this machine. So as said they need to work some stuff out but it has super potential, and would be easily available in any hospital
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I am freaking out. I was bit by a dog on my morninig hike and had to go to the ER. There I was given a Tetanus Shot and antibiotics. I have been doing very well in regards to shedding and feeling good (day 27) but am scared these new drugs will screw things up. Has anyone else had to take antibiotics?Lstreet : I take a pain killer and a Klonopin before I begin the process. I am very happily medicated through the whole infusion!Diana0
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I think you'll be fine other than you may be slow to heal. Watch you're wound keep it clean and if you see any reddness call the Dr. Did you go to the same hospital where you are getting you're treatments?
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just thought I'd share ladies - thinking of all of you here's a new video that will make you smile and cry all at the same time. Its uplifting
http://www.cmt.com/videos/martina-mcbride/682633/im-gonna-love-you-through-it.jhtml
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soccergirl - a dog bite???!!!! What a day!!
lstreet - i had the same feelings of nausea. In fact, i couldn't even look at the caps in between treatments because it made me sick. When i switched from ativan before treatment to tylenol, i felt MUCH better. So - tylenol about an hour before, lots of water during(mixed with a bit of cranberry juice and a splash of ginger ale) and a heated blanket to get rid of the chills. There was no way around the first 5 mins of those caps, but each one got better. I also would try to go to the washroom right after the cap went on. The focus on getting there and back without falling over helped pass the time during the coldest period. I had 8 treatments. Not sure how many you have but focus on how few times in your life you'll have to do this. Good luck!
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