Cold Caps Users Past and Present, to Save Hair
Comments
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Avoid Advance Cold Caps - they are terrible and cost my daughter al ot of her hair. Got up to +38 in no time.
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Hi everyone ~ 13 weeks PFC TODAY!.... Mdg~ what a great experience for you! I think we all shock our doctors and nurses...when you think about how few have seen the cold caps work we are still paving the way!
For all using something other than PCCs~ Sorry for the stress and some bad experiences.... everyone and every thing with the PenguinCold Caps was very positive. I think they may be more involved and more of a financial commitment, but everyone that used them on this site seemed to have a positive experience and outcome. The research and history in Europe also made me feel more comfortable and have more faith in the outcome.
I'm glad there are choices, but also want those choices to work and continue to grow the usage for women every where. This site has always been so positive and encouraging and it makes me sad to see all the negative comments and bad experiences.
Wish everyone the best and huge success with any cap.0 -
Hi everyone ~ 13 weeks PFC TODAY!.... Mdg~ what a great experience for you! I think we all shock our doctors and nurses...when you think about how few have seen the cold caps work we are still paving the way!
For all using something other than PCCs~ Sorry for the stress and some bad experiences.... everyone and every thing with the PenguinCold Caps was very positive. I think they may be more involved and more of a financial commitment, but everyone that used them on this site seemed to have a positive experience and outcome. The research and history in Europe also made me feel more comfortable and have more faith in the outcome.
I'm glad there are choices, but also want those choices to work and continue to grow the usage for women every where. This site has always been so positive and encouraging and it makes me sad to see all the negative comments and bad experiences.
Wish everyone the best and huge success with any cap.0 -
Hi Ladies Thanks for the words of encouragement, but the shedding is getting worse. How many days post TX are you wearing your caps? Should I do it daily?
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Hi Nmoss - can you share what the shedding is like? Are you brushing/combing? When you are shedding, how many are coming out at a time. Where is it coming from...
We have all gone through this super-stressful period. Hang in there...what day are you at?
And since you asked, I did not do any caps in between, but I know others have and have felt it was a successful part of the process!
Annie
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Hi Annie, today I used a wide to comb and about 30-40 hairs came out at once. This was the most that ever came out. I am still shedding also. I wore the caps 2 hrs for 2 days post TX. The hair is coming from the back where I have allot of it. Nothing from the font or sides. I am Day 4 post TX 2, Day 25 post TX # 1. My scalp is tingling also. I have allot of hair so it's not noticeable I am just wondering if I should even continue. Thank You
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Nmoss - Hang in there...you are still in the prime shed time. Since you have a lot of hair and it is long, I wonder if you had a lot of hair cover in the back - from the front hair that rested on the back, possibly creating more insulation and warmth. You may just lose the back hair a bit. I had this, due to a large head and caps not fitting. I still think that I have not lost any on the top of my head or the front. It sounds like all is well on the top and side - which is the hair you really want to keep!
STICK WITH IT...IT IS WORKING!!! The hair you lose in the back will not be noticeable.
YOU ARE DOING GREAT. REALLY!!!
Annie
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NMoss: I started my noticeable shed on day 21 after first treatment which was the day of my second treatment. The worst for me were days 24-28 after my first treatment. It still continues to shed (I started chemo on 3/2) but it has gotten a bit less. Still more than I was shedding before day 21. Hang in there. I just don't comb it much at all.....I gently pull it back loosly and get creative with a loose headband, hair rubberband or clip it up gently. Hats work well for some days if you can go casual......Hang in there.....I know how you feel girl! Just remember - we are the only ones that see what really comes out. When I went to my chemo the other day and met with my med onc before she said "Have you even lost any hair???". That made my week...... Hugs!!
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Hi Ladies thanks fr the encouragement. I am going to stick it out. It is just so scary. Along with 4 days of continuous bone pain, I honestly do no know which way is up. I will stay trying to rid eout the storm.
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Hi all:
Mine is continuing to shed too and a LOT and I wish it was only 30-40 hairs. Last night hubby and I talked about a wig but he says you have no bald spots so until that happens, lets just keep moving forward. I do think the days I use the caps in between is the worst for fall out so I think I will discontinue using the caps in between and see what happens. I'm not even 21 days post first chemo so needless to say, I''m really nervous. I am only Day 18.
NMoss - my oncologist said to take Advil and Prevacid (or something similar to Prevacid) the days right after the chemo for all the bone pain. I suffered horribly with it after Chemo #1 and I'll sure do it for the next TX and see if it works.
I see the cardiologist today for the heart palpitations and the way it is going now, I'll probably have to stop the Herceptin.
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Arlene: I had horrible body aches and then the bone pain hit on day 6 post first chemo. On the second chemo I took Aleve and Claritin starting the day after chemo and took it for 5-6 days and had NO pain and aches. I just had chemo 3 Wed and am trying the same thing. We will see if it works again this round. Good luck! I hope you have no bone pain!
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Thanks Maria. I also had the horrible heartburn so that is why the oncologist suggested taking the Advil (or Aleve) with Prevacid because the Advil is so hard on your stomach.
Fortunately, I had no SEs from the Neulasta.
Thanks for your cold cap information too!
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i see you're in detroit. what hospital were you at? i'm in windsor - i'm the first here. thanks for the response. keep me posted!!
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I'm starting in 1 week. AC then taxol. Every 2 weeks. anyone else on this treatment? Would love any and all cap advice as i prep. i understand no heat, no styling, no hats, etc. Would love comments!! tx all ...reading your posts is a big help.0
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Livcar: I had surgery at U of M and am doing chemo at Beaumont. Are you getting treated in the US or Canada? I know a lot of patients get treated over here from Windsor. We are neighbors...hey neighbor!
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Hi Arlene I am sorry to hear about your H and your shedding. But it's 30-40 hairs at a time . Twice today plus the hundreds of randoms I am leaving elsewhere. I am not touching my hair period. Loose pontytail, no comb nothing until this shedding subsides a bit.
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Hey NMoss: Mine seems to be the worst in the evening. I am just keeping mine in a loose scrunchy and nothing thus far today but we'll see what it does tonight. I'm trying not to comb it either. Today at the doctor, you wouldn't even know I was going through Chemo but again I'm at Day 18 after Chemo #1 so a LONG way to go but I'm trying to keep positive.
Saw the cardiologist today and he says he thinks these are just PVCs from the chemo and maybe not even from the Herceptin. He released me to have another Herceptin and will track me closely. I'll have a halter monitor next week for 24 hours and then another Echo Cardiogram. He doesn't think the every 3 months that the Cancer Center does is enough. I'm good with being careful. He really thinks all this will go away once Chemo is over.
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i'm getting treated in Windsor. i had to convince them to let me use the caps. I start next week. Wish me luck!
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LivCar - Good luck next week! BTW, I am on TCH. You may want to go back some pages to understand the experience of AC and Taxol. Or, try to search for it through the "search" button.
Annie
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Arlene and nmoss,
Hang in there, my hair started shedding about day 14 after first chemo till day 20 super bad, i would just touch my hair and it would come right out complete with bald spot on top and I am still hanging in there. I figure even if i loose half my hair i will still be ok. You can get pretty creative with clip in extensions and 3/4 falls, also for my bald spot they have a colored powder that you sprinkle on and you can't even tell I have it. I was hoping for less of a shed but was expecting it cause the caps did not get cold enough the first treatment. I am 2 days out from second treatment, caps were cold enough so hoping this shedding is way less. Every day I wake up with hair I am gratefull, I do have a wig back up though, that's how scarey the first shed was.
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Thanks Leeann: Makes me feel better. I went for a walk/jog today and had my hair pulled back loosely in a scrunchy with a cap on and really worried about that but it seems ok. I'll have to look into the extensions/falls as I am pretty sure if this keeps up that I'll need something (if I don't shave it first).
Sounds like everyone is having the first and second round issues.
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I just finished my last chemo today and am wearing the last Penguin Cold Cap at home. I've worn 139 caps and it's been worth it! I have found the Penguin Cold Caps very effective and so grateful for them!
And so thankful for so many of you giving great advice on hair care and tips and wonderful words of encouragement. Thank you!0 -
nmoss100: hang in there. For PCCs, Frank says if you reach 21 with hair still, they are working, so I imagine that is probably true also with EGs. You WILL shed hair, and it has its own cycle, but unless you get to the point where you need a wig, keep up with the treatments and the protocol. You're right to just baby your hair -- it's really trying to hang on, and any time it is manipulated can pull it.
For bone pain, my nurses (and I) swore by Claritin, not other regular pain relievers.
Howard: woo hooo! YOU DID IT!!! Time for the penguinista graduation! I'm so happy for you!!!
Best,
Susan
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HAPPY HAPPY DANCE FOR YOU, HOWARD!!! So excited that you are done, done done! Enjoy the day...hugs all around!
Annie
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congrats Howard!!! What a milestone--!!
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Congrats Howard!! Good job!! I am a few weeks behind you.
Just a "shed" update....I washed today and much less shedding....what a relief. Hang in there girls...the caps are working for me. They will work for you too...have faith, baby your hair and appreciate the hair you have not matter what it looks like (gray roots, dark roots, thinner, whatever). I can tell you each day when I go to the gym and am on the elliptical for an hour I have plenty of time to look around at people's hair (Yes, I am obsessed with hair right now - LOL!). For every woman that has beautiful, thick hair I see several with worse hair than me and they are not going through chemo. Seriously look around at people's hair...some have worse "non-chemo hair" than we do with "chemo hair". I know at the gym people don't care so much about their hair, but I can tell you I see some pretty bad hair and am greatful for what I have!!!
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HOORAY AND CONGRATS HOWARD! What a wonderful feeling.
Ladies, what do you do with your hair when you work out. It is so hard protecting it. I lost a TON more hair this morning but still no bald spots. I've lost more hair in the past week than most people have and that is scary but I'm staying positive. Still no loss on the top on sides.
Have a great weekend everyone and again CONGRATS Howard!
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Congratulations, Dana!!! You did it!!!!
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Thank you for the many well wishes. I'm babying my hair and probably won't highlight it til Christmas. Will have plenty of dark roots by then, but that's ok! Really appreciate your kind responses and such good advice on this thread. My doctor was really pleased about my hair and said since I was the first to try PCCs, "you're the leader of the parade and more are following." Made me so happy.
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I gently pull my hair back in a rubberband when I workout. I also put in a cloth headband to keep it in place since the roots look bad. At this point I rarely wear my hair down....it's usually in a headband, pulled back or clipped up since styling is so limited.
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