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sweetjam View Drop Down
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    Posted: Feb 03 2014 at 11:46am
I'm not sure where this goes and I tried to search for it but nothing came up.  Has any one tried a penguin cap?  It is for preventing hair loss.  I know of one gal who used it but she had ovarian cancer first and then had the breast removed.  It is expensive but for some reason I'm more concerned about hair loss then loosing my breast.  I don't want someone to look at me and know I'm sick.

Thanks!
DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cathieroh Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2014 at 12:02pm
Hi Sweetjam--I don't have any personal knowledge of cold caps, but when I asked my onc about them she told me she had on patient use it and she kept her hair during chemo, but once the chemo was over her hair did fall out. I know that the breastcancer.org site has a thread committed to the topic and there are a lot of posts there from users who have had success with them.
11/07 DCIS lft breast; lumpectomy & rads then 5 yrs Femara.8/13 dx TNBC age 62 StageI gradeII 6mm single focus no nodes. BRCA neg lft mast with DIEP flap recon. 4 rounds Taxotere/Cytoxan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2014 at 7:48pm
The hair loss did not make me look sick at all as I used a wig. Most people would not have known I was in chemo. I looked pretty good! Until I lost my eyebrows and eyelashes.   Not everyone loses them but I did. You can put eyebrow pencil that helps the brows - I used eyeliner which helped the lashes.   I really don't think I looked sick at all. I put on makeup every day and tried to feel as normal as possible! I have never heard of the penguin cap.   
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2014 at 9:00pm
Hi Sweetjam,
 
If you Google Penguin Cold Cap you will find lots of information on them.
 
The only person I saw use the Cold Cap had a sad ending.  About 18 months ago a lady was getting chemo for breast cancer.  Her 2 daughters, husband and son were in the chemo suite the day she had her first treatment.   It took all of them to read the instructions, change the cap at certain intervals, etc.  Truly they were in the way so much the nurses had a problem attending to the patient.   Three days after this first treatment she became very constipated.  Her husband gave her an enema which ruptured her intestines.  She became septic and died a few days later in the hospital.   It still makes me sad when I think about this situation.
 
Dear Sweetjam,
Please do not let your pride get in the way of your full recovery.   From your posts it sounds as though you have a very treatable Stage and Grade of cancer. 
 
I volunteer in my oncologists clinic.  I see ladies who find wigs as near like their own hair, style and color as possible.   They then have their hair dresser trim or tweak the wig, if needed.  They go through chemo with nobody knowing it unless they want them to.  They become very adapt with their makeup also. 
 
God Bless,
Lillie
 
 
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetjam Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2014 at 9:55am
Thank you Lillie.  I'm not sure it is pride as much as my privacy.  This is something I am holding on to fiercely through this process.  I am an open book usually telling every thing about me.  I feel like controlling who knows and who doesn't know is the ONLY thing I can control right now.  I can not even control my Doctors appointments.  Mayo is changing those and not telling me.  Every change or appointment sends me into a tailspin.  I am just so tired of this whole thing and it hasn't even started.
DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 4:20pm
 i completely understand the need to control something.   my cancer center didn't offer penguin caps - i did ask! - so i made a plan for the hair and stuck to it.  and i kept my long braids even though a lot of people said i should donate them.   and now i love my short hair!  whodathunk!?   Smile 

good luck if you do go with the caps, i read up on them quite a bit at the time and it is an intense regimen.   i ended up being passed out for the rounds of taxol the minute the benadryl hit, and i was out cold for the next 6 hours solid, so i'm not sure i'd have taken kindly to being roused as often as the caps would have demanded!   LOL


Edited by nancykind - Feb 05 2014 at 4:20pm
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DArnold Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2014 at 9:17pm
I truly admire all of you that have lost your hair during chemo your are such BEAUTIFUL women.  I however, wasn't that brave I did use the Penguin Cold Caps.  First of all, I will say the owner of this company is truly an amazing man.  So sweet, so helpful and kept me calm in my already frantic state.  
As far as the ice caps are concern they are very cumbersome to use and I nicknamed my helpers my "chemo pit crew" anyone who ever watches nascar racing knows what I am referring to.  The well time working as a team is required!  The hardest part of this whole process is keeping the caps at the correct temperature which requires you to haul in the caps in a cooler on dry ice.  Keeping the correct temperature of the caps in CRUCIAL for keeping your hair.  Failure to do so will cause you to still lose your hair.  I had dose dense ACT so my chemo regimen was pretty intense.  With that being said I did lose quiet a bit of hair I contribute that to me not being able to keep ALL the caps at the correct temperature.  However, I did NOT go BALD.  I had enough hair that I was able to get hair extensions soon after chemo.  While hair extensions have their own issues I did avoid having to wear a wig in the heat of the FL summer and I was able to go swimming etc.  So while in the company's eyes I was considered a failure the fact that I had still had hair and was able to get married in an outside beach wedding  with long hair (extensions) and without a wig blowing off I definitely wouldn't consider it a failure.  

If you decide to use them I do wish you luck!

Diagnosed 6/2010 - 8mm triple negative stage 1A no lymph nodes involved. Lumpectomy clear margins, ACT dense dose followed by 36 rads. Crazy tumor markers but scans remain clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kats Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2014 at 10:47am
Dear Sweetjam, 

I totally understand this need for privacy and control.  I was diagnosed mid January, and like you I'm normally an open, chatty person, but right now I only want a very close "inner" circle of friends and family to know about my breast cancer and therapies, and I've already had a massive row with my father when he decided to share my bad news with his side of the family against my explicit instructions.  These relatives then all started spamming me with well-wishing emails, a waste of my energy and time having to reply to them all and thank them, and now the pity party has started. Horrible.  I am so cross. 

I met with the Breast Care Nurse today in anticipation of my chemo starting on March 26th, and she offered me the latest cold cap treatment available here in Switzerland, in fact, all the nurses are only just  getting trained on it tomorrow and Saturday.  I'm in two minds now - she seemed convinced that it will prevent hair loss to a large degree, but it also extends each session of chemo by 2-2.5 hours (head has to be cooled for at least one hour before chemo starts, and for an hour after), and as I have kids to get home for at lunchtime, it's not really feasible.  Plus, there's no guarantee that all this extra faffing about and time investment will really yield the desired result.  On the other hand, I'd also rather not have other people realise that I'm sick - and the wig that has been reserved for me is actually much nicer than my natural hair. LOL  Sure, they'll notice!  

Dilemma, dilemma.... 

All the best to you! 

Kats 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bklyn_tigerlily Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 7:01am
Hi: I did ask my onc about using a Penguin Cold cap and she recommended that I not do it.  My cancer center had the option of participating in a clinical trial with cold caps, and they opted not to because there is a small chance that those who use cold caps can have metastasis in the scalp.  Why go through all of the chemo and then have metastasis in the scalp because you wanted to save your hair?  Also, the cold caps don't work for everyone. 

I am going through chemo now, and am pretty much bald.  Sure, I really miss my hair, but I would not risk having metastasis on my scalp to keep my hair!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 12:02pm
Sweetjam.  I consider myself pretty vain - never leave house w/out make-up, etc.  However, this has humbled me and I don't really care if I've lost my hair.  It will grow back!  I have a lovely human hair wig to wear when I go out and want to be normal looking.  I wear caps to the gym every morning, where everyone knows I'm going through chemo and are very supportive - so I don't care.  My onc will not consider cold caps but has allowed me to use cyro booties & gloves to hopefully save my nails and help prevent neuropathy.  (I've lost one big toenail and maybe losing the other one from the A/C alone).  The cap sounds like a whole lotta trouble to me:-), with inconclusive results. 
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetjam Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 12:09pm
I opted out of doing the cold caps. Partially because of the added stress and hassle of doing it. I have chemo treatment #5 Monday blah and have shaved what little I had left of my hair. I have also gotten a lovely wig but have only worn it 2 times. I just go bald.   

I'm impressed you still going to the gym. About all I'm managing is walking the dog. I would probably feel a whole lot better if I went. I'm lazy *sigh*
DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2014 at 12:15pm
I had heard that you loose your hair in clumps about 2 weeks after starting A/C, so the day before that 2 week period, I had the stylist where I bought my wig give me a buzz cut, and I left wearing my new wig.  It was the most empowering thing I've done for myself on this journey.  It felt good to be in charge of losing my hair when I wanted to.  The alternative of loosing it in clumps in the shower had the feel of a bad Lifetime movie to me:-). 
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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