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 07:04PM

Posted on: Jun 14, 2009 07:04PM

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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Nov 26, 2012 11:19PM ndmk wrote:

Hi everyone...survived my first chemo session exactly one week ago.  All I can say is the first 5 minutes of the first 3 caps were brutal.  I was in so much pain despite taking extra strength tylenol an hour before the first cap.  Any tips? Perhaps my hair is thinner than I thought. 

Anyhow, it turns out that the chemo started closer to 20 minutes into the cold caps because there was problems with the IV.  I really am hoping that my hair will be okay.  It would be such a shame for all that pain and time to go to waste.  Trying to stay positive.  Anyone hear of other users that didn't start at the 10 minute mark?

Also, the cap didn't cover about 3 inches from the nape of my neck and up.  Eeeeek! I was so bummed but figured that its better for the hair to be lost there than in the front.  I tried to contact Geralyn for the extra strips but they are completely out! 

Loafer-  How is your hair holding up?  Hoping it all turns out okay for all of us!



Surgery 8/30/2012 Lumpectomy: Left Chemotherapy 11/20/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 27, 2012 02:20AM Tlym wrote:

Finished chemo #2 today. Infusion center is undergoing a remodel and they had us packed in like sardines. A couple of nurses were being rude about us needing more space to do caps, but we gave it right back to them. After all, the reason I switched from Stanford to UCSF was because they are doing a cold caps study and have freezers for me to use and a staff that is supposed to be more accommodating! They actually had the nerve to tell us to go to the ground floor lobby to finish post-chemo icing because the space they have designated for that in the 5th floor infusion center is closed off. And how did they expect my helper to go up and down every 20 minutes to get the cap on my head in time for a 30 minute change? This is definitely not what I had signed up for! Thankfully my best friend has no problem being assertive and told them we would not budge and they gave in and let us stay in my tight little spot for the remainder of the day. Aside from that, icing went well and I am thrilled to be half way done! Was particularly encouraged when my MO saw my hair and said it looked beautiful! I pouted a bit about all the shedding I've been experiencing, and she said ladies who are not doing cold caps are either bald from chemo or have shaved their heads by day 24 (today for me). That really helped put things in perspective, and I will take shedding and thinner hair over no hair any day!

Ndmk-I had quite a bit of shedding last week. Last night I decided I needed more straps, but with no time to sew, I found these at Walmart and tried them today. They are narrower than those supplied by Penguin, but we used them to fit the cap closer to the nape of the neck and they worked just fine. http://www.walmart.com/ip/Velcro-Stretch-Strap-Black-2pk/17190454

BRCA2 Dx 7/3/2012, IDC, <1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 9/5/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 11/2/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 27, 2012 02:08PM - edited Nov 27, 2012 02:43PM by Hortense

ndmk - I'm so sorry you had such a rough time at the start. Did you take two Tylenol, or just one? I would take two about 20 - 30 minutes before the first cap. The first few minutes are certainly hard as the caps are startlingly cold and it takes a few minutes for the scalp to numb enough that they become bearable. I found that after those first few minutes the rest was handleable.

Not sure exactly what you described timing-wise. The ten minute mark for starting chemo comes after having worn two earlier cold caps for 20 minutes each, which would have cooled your scalp down for a total of 40 minutes. Chemo is then usually started 10 minutes into the third cap, so that in fact the chemo medicine begins to enter the blood stream after the scalp has been cold cap cooled for a total of 50 minutes. If chemo starts a bit later that's fine because the scalp has already been cooled to the correct temperature. The important thing is for the head to have been cooled long enough and according to protocol.

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 27, 2012 02:16PM btrflynaia wrote:

Has  anyone used thes in the Denver area?

Dx 9/25/2012, IDC, <1cm, Grade 2, ER+/PR+, HER2- Dx 11/9/2012, IDC, 1cm, Stage IIA, Grade 1, 1/10 nodes, ER+/PR+, HER2- Dx 11/9/2012, DCIS, <1cm, Stage IIA, 1/10 nodes, ER+/PR+, HER2- Surgery 11/9/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 27, 2012 02:52PM - edited Nov 27, 2012 02:53PM by Hortense

btrflynaia - I believe I have seen women from Denver posting here. Hopefully some will drop by. Meanwhile, go to www.rapunzelproject.com for information about keeping hair during chemo. It's a very reputable site. It's a non-profit dedicated to helping woman keep their hair that also donates freezers to hospitals and breast centers for women to keep their cold caps in during their treatemnts. My hospital in NY has one from them.

Do you know what type of chemo you might have? Cold Caps seem to work very well for T/C (Taxotere/Cytoxane), which I had, and not quite as well for ACT, although there are women on here who have had succeess with them during ACT.

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RE: Total head coverage -  My helper put some of Penguin's gel eyebrow bands just below the cold caps to cover scalp areas the caps did not reach. I have a big head and would have lost a wide band of hair below the cold caps if she had not done so.

I highly recommend that people use the brow bands like that, as the cold caps do not always entirely cover every person's head. She said she had used them that way on a number of women, so it seems others were finding the cold caps did not come down quite far enough either.

 
Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 27, 2012 03:06PM schoolmom wrote:

I also use headbands that they sent me with the caps.  A box of 4 with the 8 caps.  It wraps along nape of neck and up over the ears covering the temple hair line area.  I then put the 2 black straps over to tighten and the gold across the top of my head and under my chin....as per PCC protocal.  I just finished #2 and have started shedding but have a full head of hair.  Going to change my avatar pic to yesterdays pics cause I can not figure how to copy pics in messages.

saved my hair with cold caps with oncotype 21 Dx 9/12/2012, IDC, Left, 1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 9/28/2012 Lumpectomy: Left Surgery 9/28/2012 Lymph node removal: Left, Sentinel Chemotherapy 11/5/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/28/2013 3DCRT: Breast Hormonal Therapy 3/21/2013 Arimidex (anastrozole) Dx 11/6/2017, IDC, Left, Stage IV, metastasized to bone/liver Targeted Therapy 12/1/2017 Ibrance (palbociclib) Targeted Therapy 12/1/2017 Hormonal Therapy Arimidex (anastrozole), Femara (letrozole)
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Nov 27, 2012 03:46PM btrflynaia wrote:

I actually will find out my oncotype on Thursday.  Depending on the score will determine chemo.  I don't think it would be ACT.  It would most likely be only rounds of chemo.  Just trying to do research.  I'm hoping that my score is low.  Chemo scares the crap out of me!  I admit to being vain about my hair.  But, also secondary side effects.  

Dx 9/25/2012, IDC, <1cm, Grade 2, ER+/PR+, HER2- Dx 11/9/2012, IDC, 1cm, Stage IIA, Grade 1, 1/10 nodes, ER+/PR+, HER2- Dx 11/9/2012, DCIS, <1cm, Stage IIA, 1/10 nodes, ER+/PR+, HER2- Surgery 11/9/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 27, 2012 05:40PM - edited Nov 27, 2012 10:56PM by Hortense

Good luck on your score! Hope you have good news. It's smart of you to do research ahead of time. It's much better to be armed with information so that you can better understand what is being told to you than being completely in the dark. My onco score was 19, on the high side of low or the low side of intermediate depending on who I spoke to, either way the agreement was I needed chemo.

Chemo, if you need it is no fun, but it's also not as bad as I had thought it would be. So much can be done to control nausea that I actually didn't have any afterwards, and that is what I had worried the most about. 

Cold Cap user - kept my hair Dx 1/24/2012, IDC, 1cm, Stage II, Grade 2, 2/2 nodes, ER+/PR+, HER2- Surgery 2/29/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 5/8/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/24/2012 Breast Hormonal Therapy 10/16/2012 Arimidex (anastrozole)
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Nov 27, 2012 07:56PM schoolmom wrote:

I agree that it has not been as bad as I imagined.  The cold caps was a wonderful thing to find!  My score was 21 which was low intermediate and 12% chance of recurrance....which was too high for me so I went with the 4 rounds of TC.  I am halfway through !!!!

saved my hair with cold caps with oncotype 21 Dx 9/12/2012, IDC, Left, 1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 9/28/2012 Lumpectomy: Left Surgery 9/28/2012 Lymph node removal: Left, Sentinel Chemotherapy 11/5/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/28/2013 3DCRT: Breast Hormonal Therapy 3/21/2013 Arimidex (anastrozole) Dx 11/6/2017, IDC, Left, Stage IV, metastasized to bone/liver Targeted Therapy 12/1/2017 Ibrance (palbociclib) Targeted Therapy 12/1/2017 Hormonal Therapy Arimidex (anastrozole), Femara (letrozole)
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Nov 27, 2012 10:15PM mdg wrote:

Just want to offer encouragement to all still going through chemo.  There were times I would wash my hair and watch it shed and I would just cry.  I wa sso worried I would lose my hair.  I stressed a lot through all of it and freaked about my hair.  At the end of it all, I still had hair.  It was thinner but I had a full head of hair and looked "normal" to others.  Please have faith....you will get through this.  Cold caps work!!!

Maria Visit my BC Blog at breastcancerwontdefineme.blogs... Dx 12/13/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/23/2010 Lumpectomy: Right Surgery 1/27/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 3/3/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 5/19/2011 Surgery 6/22/2011 Reconstruction (left); Reconstruction (right) Surgery 12/10/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction

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