Topic: Cold Caps Users Past and Present, to Save Hair

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Jun 14, 2009 04:04PM

Posted on: Jun 14, 2009 04:04PM

Can-D wrote:

Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair.  I am on FEC100 X3 followed by Taxotere X3.  My dosage unfortunately is not a guaranteed success.  I am 40 days out from my first treatment and will have my third June 17.  So far I have thinned but have not required a wig.  I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there.  All in all, I am pleased to still have a good covering.  If you are using or have used the Cold Caps, I would love to hear your experience.  Take care, Candy

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jun 18, 2009 03:03PM NatureGrrl wrote:

Hi, all... I'm going to interject something I learned about nail loss yesterday... not to jump in to other conversations but this might help someone...  I don't know if this will apply to Taxotere but since it's in the same family as Taxol it might...

I just finished my 4th A/C and start on Taxol in 3 weeks.  I mentioned that I noticed about a week ago my nails has stopped growing, and would they fall out?  The NP I saw said not likely, but to start immediately on 100mg of B6, twice a day, to help prevent that.  So it might be worth mentioning to your dr.to see if it would help with you.

She's an NP that doesn't recommend options like that unless there's empirical proof that it'll help and the science major in me appreciates that and appreciates her input.  Not that I don't consider other options, I can lean both ways, but I appreciate strong science.

Carol
Carol, living out loud! fire-of-our-hope.blogspot.com/ Dx 4/2009, IDC, Stage IIA, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Jun 18, 2009 03:22PM gmp300 wrote:

Naturegrrl--Thanks for the info.   I asked my onc if I could take B-6 ( I read it on this site).  He said ok. either B6 or B-12.  I don't know the difference between them and I bought B12.  Is that ok for the nails or is B6 better?  I just started to read all the threads on Natural Girls.  it is very interesting.   Maybe I should switch to B6 if that's what everyone is taking.  Anyways thanks for sharing and have a great day--Geri
Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 19, 2009 03:53AM NatureGrrl wrote:

I don't  know what the difference between B6 and 12 would be -- they're different vitamins, obviously, but if your oncologist said either one, then that's probably fine, I'm sure.

I'm just going with the B6 because my NP recommended it.  She was empahtic about the dose, too.  Anything to lessen chemo side effects of any kind!  So much is going on that I can't control -- will take any measures I can to keep some of this stuff as normal as possible!

I've been careful about what I do take because I know some of the OTC things will interfere with chemo (I'm on no large doses of antioxidents, for example) (and no more tofu!  I'm one of the crazy people who enjoys tofu... but I guess I'm off that for life?!).  Depends on the chemo, I guess, but I don't want to do anything that will cause problems, so I clear everything -- even my herbal teas -- through the NP or oncologist (and truthfully, my NP is more knowledgable about some of the details, not that I don't trust my oncologist -- I've seen what he does for mom and I have a great respect for him).  Anyway, that's my approach.

If it makes you feel better to switch, I would... it's not that expensive compared to everything else! :)  Just make sure to get the 100 mg tablets!

Best of luck!

Carol

Carol, living out loud! fire-of-our-hope.blogspot.com/ Dx 4/2009, IDC, Stage IIA, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Jun 19, 2009 05:31AM gmp300 wrote:

NatureGrrl-It is getting so confusing on what to eat or take anymore.  And alot depends on what kind of bc you have.  Things we thought were good were bad and things I thought were bad are good!   Like tofu?  I never ate it but it always sounded healthy for you, whats up with that?   I'd like to make and add some positve changes to my diet but it is hard to tell anymore what is right for each individual!  Right now while on chemo I was told to only take a multi vitamin only.  No PLUS anything added while on chemo.  My onc did say B-6 or 12 was ok too.  But Iam going to double check on the B-12 and make sure I heard him right.  Aso no Green tea while on chemo.  The inventor of the cold caps told me that and also no caffeine or sugar.  That knocks out my pepsi and coffee!  Also no deodarant with aluminium it it.  ( which is in most of them).  I have been trying to drink decaf tea but now I wonder about the herbal teas!!!  It is almost impossible to try to do anything right anymore.  Iam going to try my best and have things  in moderation.  If I want coffee, I will drink 1 cup instead of 1 pot!  That's all I can do until I get more educated on all of this stuff!  I guess I have some learning to do!  Until I finish with chemo I will try to stay away from what is bad but my onc really has no diet restriction while on chemo except for the vitamins etc.  They actually want you to eat anything to keep your weight up.  they don't want you to loose weight.  I was hoping I had chemo that makes you loose weight not gain!!!!

Thanks again for the information it is really interesting to learn all of this.  I've always ate what I want.  I eat pretty healthy but I have my downfalls Like good Italian bread and butter,Saunders hot fudge cream puffs with butter pecan ice cream w/extra fudge!  Lucky for me I don't eat them all the time.  I cook alot with olive oil and hardly ever fry foods.  Lots of fruits and vegetables etc.  I've always ate good foods but if I could add or take away something to keep this BC at bay Iam more than willing to try!  Thanks again and have a great day!!!--Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 23, 2009 09:21AM Can-D wrote:

Hi All! 

NatureGirl-Thanks, I too will talk w/ my onc about the vitamins. 

Geri-I hope your second treatment has not been worse than your first.  You are half way done with your chemo!!! 

Bless all and I will keep you all in my thoughts.

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jun 23, 2009 02:31PM gmp300 wrote:

Hello Can-D!!   How are you doing?  I've been thinking about you and wondering if you've started the taxotere yet?  I hope you have so you can be closer to being done!!  I just had my 2nd tx last Thursday.  It pretty much went the same as #1.  I did have a reaction during infusion Lower back pain) because they start me to fast so they slow it down and give me saline with it.  Yeah!  More fluids with it, that's fine with me.  In fact I asked if I can get saline with it all the time. (it dilutes it) and the nurse said if you want it.  so I might ask for it for #3 just to get more fluids in me.  It's getting harder to keep up with the drinking!!  That's why I think the SE of tx #2 was a little worse than #1.  Not to bad but I was more tired and I did get that funky taste in my mouth for the first time, but I didn't eat ice , popsicles and drink as much water either so who knows for sure if that is why.   But day 4 and 5 were my tired days and today is day 6 and I feel great.  So it hasn't been to bad.  Just to reassure for your change to taxotere.  But then again everybody is diffferent!

How is your hair?  I still have mine.  I only wash it once a week but my hair is dry so it doesn't really look bad.  I just let it hang.  Sometimes I use a scrunchy to tie it back loosly.  Iam loosing strands but no clumps!!  Actually it slowed down but will probably start shedding again in another week.  I just hope that by the time I'm done you still can't tell.  It really is amazing to still have our hair at this point.  It seems that everyone else has lost their's by now.  Even though we have to take extra care right now with it it will be worth it in the end when we don't have to try to grow it out!!  Or deal with wigs etc.  I hope yours is still hanging on and let me know how you are doing.  I could use the support.  Last week I woke up every morning and looked at my pillow and said "Thank you God for letting me keep my hair!"  I still do! 

I hope things are going good for you.  Keep in touch and I'll be praying for you too.  Take Care--Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 23, 2009 03:14PM Can-D wrote:

Geri- I drank my 8 liters the day I had my #3 tx, but haven't been able to drink much water or liquids since then.  Just the thought of drinking water makes me ill feeling. I start Taxotere on #4 and because taxotere is mostly eliminated through faeces and only minimally through urine, I'm not too concerned about all those fliuds as long as I drink enough for my liver to make bile and my bowels are functioning...tmi I know, sorry. 

My hair is still hanging in there, but thin. I notice it as does people close to me, but most that didn't know me before can't tell. I do have one bald spot about the size of a nickle right in top of my head in my bang area. I brush hair over it and its not noticable. I think I gave myself frostbite there the first time cuz I had a scab there initially. 

I'm so glad to hear that you are feeling great today and having success with the cold caps. Take care.

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jun 23, 2009 03:49PM gmp300 wrote:

Can-D--Looks like we are criss crossing on these threads!!  I just posted you on May Chemo!  Next time Iam going to just call you!!  What is our time difference?

Iam glad to know that taxotere is eliminated  thru feces!!  Iam so glad!!  Sounds crazy but I had a hard time drinking all that water for 5 days.  I know it helped with the SE but this round it was harder to drink.  Now I will make sure to take a laxitive every day!!  I noticed that the BM smells different after chemo.  It's awful  (TMI)  Now I know why!

I lost hair on my hair line around my ear and side burn because my temples were to cold and I stuffed a tissue under the cap on my temple,  Oops I pushed it to far!!  My scalp also peeled on top and is sensitive, Iam sure from frost burn.  That was the coldest part for me.

Iam glad your doing ok and still have your hair.  Even if it is thin it will be so much easier to grow out after chemo compared to what some of the ladies go thru.  They say that it is worse than loosing your hair.  Some take a very long time!!  We are very fortunate!  Take Care--Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jun 23, 2009 04:57PM Can-D wrote:

Geri-I am in the Central Time zone.  I too gave myself a little frost bite the first time and my part got red, then flaky and itchy.  I had one small scab in my bang area that did result in a small bald spot.  You are so right about ending this journey with some hair is better than no hair.  At least that's what I tell myself to get through.  Take care, Candy
FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jul 6, 2009 04:00PM - edited Jul 6, 2009 04:04PM by NewportLori

Hello Can-D and BC sisters.  I came across info on the Penguin Cold Caps on the Internet and  asked everyone on my Tx team if they had heard of them -- none had.  My onc and surgeon have agreed that neoadjuvant therapy would be beneficial in my case and my onc is prescribing 6 cycles of TC.  The US telephone number for the company that makes the caps is in Orange County, CA where I live, so I left a message last week.  To my surprise, Frank Fronda, the inventor, called me from the UK yesterday evening (it was the wee hours of the AM for him).  Their US warehouse is less than 30 minutes from me. 

Chemo should begin in a week or so. Because I am single and live alone, I am going to try to find another local woman who needs a helper to put them on and change them during chemo.  I appreciate reading about the experience of other women on this thread.  If it works for most of us, perhaps we can get the word out and get the FDA to take action.

Best wishes to all of you.

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-

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