Cold Caps Users Past and Present, to Save Hair
Comments
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Hey ladies, really bad news my best friend of 25 years was diagnosed on Monday with Luekemia. I was wondering any of you know if the caps will work A C V treatment, we live in separate states and I just found out they have given her 3 doses already. Is it too late for the caps?
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Makingway: I wrote on the chemocare website. Easy to do. Let's all encourage them to update their website!
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Makingway: I just sent them a note too! I wonder what will happen?
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I too sent my thoughts and comments.
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Thank you so much Howard,soccergirl and LMflynn!!!! Now maybe we can bring them into the 21st century of medicine LOL
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Done makingway!
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NMoss: So sorry to hear about your friend. Wish I knew but I'm thinking that using the caps at any point is beneficial as they help your hair grow faster so even if she starts losing it, it should come back much Thoughts and prayers out to her.
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Can someone remind me the brand name of the hair colour product everyone was using? I know you guys found something safe - i just don't remember. thanks!
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I am using the Clairol Beautiful Collection...they have an advanced gray cover up line and a regular line. I have used both. They are both free of ammonia and peroxide. I get it at Sally's.
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Thanks Arlene!!
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I just sent them a note also...
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Thanks Ang7
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Makingway- I just sent them a note.
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Thank you Tiki
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Hello Everyone,
Good News! Penguin Cold Caps are having good publicity because of their success rate! Seen on TV in Minnesota and other States across the USA. More to come! I'll keep you informed and put the links on here. More and more oncologists are getting behind the PENGUIN COLD CAPS and THE PENGUIN COLD CAP THERAPY SYSTEM of use.
I'll keep you's posted! visit the penguin cold therapy users association. You can find the link on the www.penguincoldcaps.com website. It is helpful to us all.
Have A Nice Day!
Geralyn
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Thanks Arlene I sent my set off to her. I feel awful for her, she has pneumonia , Harada disease and get AC daily. I am beside myself for her.
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Does anybody know anythng about hair ovation? The products are targeted towards people who had chemo.
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Thanks, LivCar, I agree. I wish they would do more studies or at least surveys so we knew what to expect. I was told I would lose 30 percent of my hair and it was more like 95%. I did get frost bite the first time and do wonder if that may have something to do with it but I do believe it was the Taxol. I am grateful that I had hair until after the final treatment. That's 4 months for me that I would have had to deal with wigs but I could have been prepared better. I had to rush out and get the topper and I am going wig shopping today because it is evident that is no longer enough.
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Soccergirl: Never heard of those products but I'll sure be googling them. I'm always looking for new products but finding organic ones is tough.
One of the biggest challenges right now is getting rid of all the plastics with the BPA. I've pretty much disposed of all my tupperware (if it wasn't scratched or stained, I kept it because scratches and stains indicate potential BPA's being released. Look around, everything seems to be plastic right now. We get bottled water and it comes in plastic now (it used to be in glass). Mayo, mustard, (I'm going back to glass). Even our mason jars (the lids) have BPA...but if you order the BPA free lids, those have a chemical that is potentially worse for you than the BPA. It is tough and perhaps I am over-reacting but I don't want this back again!
Codysjudy: One big benefit if you do lose your hair is that with the caps most had their hair start growing back during chemo. I never lost all of mine but it got pretty thin but because of the caps, I never got any bald spots and as it fell out new quickly replaced the old. Keep using the caps even after chemo to stimulate the growth.
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The BPA thing has been hard for me too. I do buy a few things in plastic when it can't be avoided, but I try not to. I have had trouble buying tomatoes not in cans....I finally found Pomi tomatoes in cartons and then we moved out of state and I have not found them here anywhere yet. I am Italian....I need my tomatoes! I invested in stainless waterbottles and we have several of them. I fill them a lot and take them with us. We just bought a house and I plan on getting a water filtration system too as there is crap in water too and I won't drink water from a plastic bottle. It is definately a huge effort to avoid BPA but I believe it is worth it.
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Maria: I have a BPA free water bottle but it is plastic so not sure what else might be hiding in there. I'm going for the stainless also. Problem is the stainless are a tad heavier when out jogging and I need my water. We do have the filters on our faucets but when I got this mess and hubby was hospitalized during the same time (with 2 big bouts of gall bladder which they finally removed), we both decided the well water in our small town in NV might not be the best but in retrospect, it might have been better than the city water we now have back in Florida....you can smell the chlorine. I'm with you on the tomatoes since hubby is Italian and I cook with lots of tomatoes too and when I make sauce, I make a lot and thus need the mason jars. Bought a brita pitcher last year and guessing it is full of BPA. I do have one of the Keurig coffee pots which states BPA free. The word is getting out and more and more BPA free products are coming on the market. I need to pick up a supply of the Pomi tomatoes.
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Maria - thanks for the hair colour info.
How's everyone feeling post chemo? i still have achy hands and feet (the bottoms of them feel bruised by the end of the day), my neck is very sore and stiff and my energy level is still pretty low.
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Hi LivCar: I'm nearly 5 months PFC (19 weeks Monday) and still feeling the "tireds" but did only finish RADS end of August. I know it takes months and many times nearly a year to get back to normal. I have 2-3 nights a week where I can't sleep all night. Working towards getting my running back but that is proving more difficult than I had expected. I have a half marathon that I want to do end of November which if I do it, I will be walking the majority of the distance. I don't have any aches but am told the Arimidex will surely bring them soon enough.
Keep the faith, your arches and pains will subside. You'll just wake up one morning and realize, wow they are gone. The legs that felt like they weighed hundreds of pounds was the worst for me and that seemed to last forever but it too goes away.
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Brita has BPA? Is BPA only a problem if it is heated? What do you guys use for Make up and skin products?
Liv Car I am 23 days out. Each day I feel a little stronger. I start radiation next week and hope I do ok. I am not working right now and just concentrating on healing. The psychological effects are the hardest for me.
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soccergirl: I'm not sure if the Britas have BPA in the plastic or not but it didn't say BPA free when I bought mine but I bet they make them now BPA free. I know the heating is a big issue with the BPA but scratches, etc. release the BPAs - at least that is what I've been told so I'm just going the extra step and trying to avoid them as much as possible and it is difficult.
I bought some organic make up at CVS - they seem to have lots of organic items. Mascara isn't the greatest and I've pretty much given up on mascara.
Radiation was really easy for me. I did have to quit wearing bras because they really irritated the skin so I just picked up some camisoles which were nice and comfy - hated going back to bras but quit wearing the under wires. You are so right in that the psychological part is the worst!
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Arlene: Did you work out during radiation? It is scary to have to go through something like this and my family, excuding my wonderful husband, do not get it.
The caps have been a great distraction. I started using a higher quality conditioner( Paul Mitchel Keratin) and I am not shedding as much. The comb glides through my hair with this prodcut. Also, I am taking iron now too. Will see what happens next?
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Soccergirl: I walked a lot during rads because you need to keep your rbcs up and the exercise really does help. I never got the major tireds that they talk about with rads and I attribute it to the walking every night. I also hiked when I could! You will do just fine and no, as hard as our husbands try, they nor anyone not going through this can understand. AND when you have hair and don't look sick, it is even harder for them to understand. I think the loss of hair makes you look sick and I'm so HAPPY I didn't deal with that! You will do just great. Curious, is the Paul Mitchell organic?
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soccergirl - the psychological effects are most definitely the worst. Worse than chemo itself. There isn't a minute of any day that i'm not worried something will happen to me and my kids will be left behind. I'm hoping that's a normal feeling at this point and not some weird kind of foreshadowing. Your mind can really mess with you ...
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Liv Car: I make myself write health affirmations, meditate and do yoga to reprogram the dark thoughts. It is so scary! You will be ok!! I don't have children, so I can't imagine how terrible the anxiety you must feel. The affirmations and listening to my relaxation cd does help me. My goal from having this cancer is to force me to be more zen. I have a long way to go, but will get there!
The hardest part is life goes on for other people and unless they are in the club, they don't understand. I am slowly regaining my footing in my former cancer life and it is hard not to feel a little left behind. Cancer stops you dead in your tracks.
We will all heal from this experience. Other survivors become more aware and appreciative of their lives and we will join them soon. At some point will have a good perspective about having this disease and gain wisdom from the suffering it imposes on us.
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Arlene: the Paul Mitchel line is not organic but does not contain estrogen binding ingredients. I think Frank should recommend cold water rinse every day with a good conditioner to the ends of the hair daily. I think I shed more hair on the 3rd and 4th round because I had more tangles because of dryness. Also, the cold water rinses off the toxins on the scalp and it so much easier to get a comg through hair with conditioner( on the end) than without. Now that I have better conditioner, my hair is perking up. I had a trim today which felt amazing and so funny at the same time. I should be bald.
I plan to keep my workouts up but am curious if I will be able to pick up the pace? I wish I was done with the treatment.
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