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Old 07-19-2014, 12:43 PM   #1
valleygirl
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Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
Questions about penquin cold caps

Have any of you used the cold caps? Did they work? Why do you need so many? They're very expensive. Why can't you order one set and keep reusing them?
Thanks for all your help, Denise
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Old 07-19-2014, 01:30 PM   #2
valleygirl
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Posts: 140
Re: Questions about penquin cold caps

also women that have had chemo a second time, how well did your hair grow back?
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Old 07-19-2014, 01:59 PM   #3
yanyan
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Re: Questions about penquin cold caps

Never had cold caps because of concern that chemo can't reach scalp. Lost my hair 2nd time on abraxane. Last abraxane done some time in May. Hair is about half an inch long now. My hair grows slow but it had no problem coming out the 2nd time.
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 07-20-2014, 07:48 AM   #4
Jaimieh
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Join Date: Mar 2009
Posts: 126
Re: Questions about penquin cold caps

Valley girl there is another brand dynacap or something similar that is sold thru amazon. If you get a chance check out breast cancer.org about the caps.

I didn't hope that route because it seems very unsuccessful for AC . So I am bald for a second time.

BTW, I am currently in Dagsboro and we come down frequently. .
__________________
Diag. 12/24/08-
IDC 1.3 er-/pr- HER2+
Grade 3 0/2 lymph nodes
no angiolympathic invasion

Bi-Lat. Mast. 1/8/09
Exchange scheduled for 6/17/09
Lost implants due to unknown reason :(

Hip Flap 1/26/2010 in NOLA :) LOVE EM'

TCH x6 (6 done and I am hoping to never do it again )

Well so much for never...
Local recurrence May 25,2014 is left over breast tissue.
April 2 , 2014 lumpectomy
April 28, 2014- June 9, 2014 start AC x 4
Taxol x12
Perjeta x 6
Herceptin x 18
And 33 rads just for fun. NOT!!!
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Old 07-21-2014, 06:09 AM   #5
Lauriesh
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Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Questions about penquin cold caps

I wouldn't use cold caps for the same reason that yayan said. I have seen women with scalp mets and was afraid that using them could increase the risk.
I had taxotere the second time around and after 3 1/2 years, I still have to wear a wig or hat because it is so thin on top. But, that is not usual. Many women who have lost their hair two or three times have it grow back normally.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 07-21-2014, 10:21 AM   #6
'lizbeth
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Re: Questions about penquin cold caps

I searched and found this site about chemo cold caps:

http://www.chemocoldcaps.com/

If I had the choice today I would choose scalp cooling for early stage breast cancer. Scalp mets are rare.

I used ice on the hands and feet during chemo to help with the neuropathy. I believe it minimized the side effects of the taxane.

Last edited by 'lizbeth; 07-21-2014 at 10:21 AM.. Reason: added link
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Old 07-21-2014, 03:44 PM   #7
valleygirl
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Location: Millsboro, Delaware
Posts: 140
Re: Questions about penquin cold caps

Thanks for all the info. I meet with my new doctor on Wednesday and plan to talk to her about using the cold cap.
Jaimieh, you're just in the next town from me. I live in Millsboro, small world. We'll have to get together
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