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 06:04PM

Posted on: Jun 14, 2009 06:04PM

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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Jul 6, 2009 06:59PM - edited Jul 6, 2009 07:02PM by gmp300

Hello Lori,  Iam so excited that you are trying the cold caps.  Frank is great and a real support.  Iam using them and I start my 3rd tx of taxatere and cytoxin on this Thursday and I still have all of my hair.  It works really well with that chemo!  I did loose strands during my 3rd week of each tx but not much and you can't tell.

I feel as though we are a secret society as one of the gals put it!  I have tried to share with others but I think they are skeptical.  I was too until I talked to a doctor here in Michigan who has been studying them and doing trials for 3 yrs.  She is also giving me advice.  I also talk to Candy and Nikole who I met on this site who are using them also with sucess.  Frank can give you others who will help you with support.

The doctor here in Michigan is submitting papers to try to get it FDA approved so they can do a national trial!  Then more hospitals and clinics will have them .  Alot of doctors have not researched them either and are skeptical. 

Anyways if you have any questions or want to talk then PM me and I would be happy to share!  I plan on spreading the word more after I finish all 4 tx and I can say for sure it works.  But so far it is and I have no bald spots and Iam 42 days out of 1st tx and 19 out from my 2nd.  If you are doing it o your own I would be happy to give you some tips!  Good Luck-Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 6, 2009 08:13PM - edited Jul 6, 2009 08:15PM by NewportLori

Hi Geri:  It's so good to hear of your success with the caps as you are also on the TC regimen.  Frank mentioned the Michigan trials.  He also sent me the names and telephone numbers of 6 other women who are using or have used them.  I'll send you a PM with my contact info and perhaps we can chat sometime.  I'd be interested in hearing how many caps it takes to get you through each infusion.  I just found out today that my chemo appointments will be 4-5 hours long -- oh brother!  If each caps lasts only 20 minutes, that's going to be a lot of caps to rent and haul around.  Do your infusions last that long?

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
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Jul 6, 2009 09:04PM gmp300 wrote:

Hi Lori,

Yes Iam sorry to say that Iam there for chemo 4-5 hours.  Iam not being infused the whiole time!  I did get your PM and I will try to call you.  there is so much to go over!  Iam so excited for you!  One thing about doing the cold caps is that you are very busy during infusions that you forget what your really there for!  LOL.  I will talk to you soon!  Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 7, 2009 09:47AM lissak wrote:

Where can you purchase the cold cap?

Life isn't about waitng for the storm to pass, It's about learning to dance in the rain.
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Jul 7, 2009 11:33AM gmp300 wrote:

lissak--Hello!  Just google  Penguin Cold Caps and go to their web site and you can get all the information there and email them.  You will probably hear from Frank the inventor of the caps and he will help you with all of that information.  If you have any more questions I'd be happy to help you.  Good Luck-Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 9, 2009 04:21AM Can-D wrote:

Lori- I am sorry that you had to join our group but we welcome you and will be there for you.  Geri is having great success on her TC regime and Im sure you will too!  I dont know if your dosages are the same and the dosage does matter.  Unfortunately, I was on a regime with a dosage where I have not been as successful.  Thanks to Frank though, I do not have any bald spots, except one small one where I shoved the rag too far into the cap due to the cold; I do have substantial thinning but not enough to wear a wig or head covering.  I am on a split regime, FEC-T, and have completed the FEC and one Taxotere.  I am hoping now that the harshest is complete I will have more success.  My hair was very thick and almost to my waist when I started and I dont think this was a benefit.  I cut it to my shoulders after tx #2 and it has been much more manageable.  If you want to talk just PM me and I will give you my contact info if Frank nor Geri hasn't already.  Best wishes, Candy

p.s. I read your bio and in regard to the genetic testing, I agree that you if deformations in your BRCA genes that a bilateral mastectomy is a good idea, well according to the studies I have read. I don't have my results but it will definitely impact my future course of treatment.  Its sux that your insurance won't pay. Luckly mine did and it wasn't as expensive as I though it would be. The lab used was MYRIAD GENETIC LABORATORY (not yelling just copied and pasted) and they tested for both breast and ovarian.  The lab billed $3120 but my insurance paid $2964 pursuant to their contractly allowed amount.  Just an FYI

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 25, 2009 11:12PM - edited Jul 25, 2009 11:16PM by NewportLori

Update:  I had my first chemo (TC) yesterday and used the cold caps.  Another woman who lives near me whom I met via this website helped me put them on.  Since I haven't asked her permission to post about it, I'll just say, she is a true Godsend and is fortunately a stickler for details.

Due to e-mail and telephone problems in the UK, we weren't able to pick them up from Anaheim until the mornging of the chemo. They weren't pre-cooled in a freezer so we had to rely on dry ice in picnic coolers to get them cold.  It was hard to get uniform coldness with this method.  We were fortunate that we had a laser digital thermostat that tested a specific place you pointed it so my new frend could pick the best caps.  Usually the top was cold enough, but not always the sides and back.  I could tell that area in front and above my ears and the lower scalpline were getting much less cooling. I could lose hair there 

My next cycle is in 3 weeks and, since they will be precooled in my home freezer, hopefully we will get more uniform coldness.

Frank was extremely helpful as was Joyce in Florida.  If it weren't for my cold cap friend, they and other women I spoke to who have used them, I would not have been able to try this hopeful method.

I'll keep everyone posted.  Also, good thing is that I haven't had any bad SE from chemo.  So far, so good!  I get a neulasta shot on Monday and am hoping to avoid bone pain.

Dx 5/28/2009, IDC, 5cm, Stage IIIB, Grade 2, 3/4 nodes, ER+/PR-, HER2-
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Jul 26, 2009 08:24PM gmp300 wrote:

Hello Lori--Iam glad to hear that you are trying the cold caps. I read some of your posts and I hope you have the timing right . I put mine on 20 minutes for the first 2 and the 3rd one for 10 minutes then start the infusion and keep the 3rd one on for another 20 minutes and then change them every 30 minutes after that. I hope all went well it get's easier with every tx.
If you have any questions I would be happy to help. My 4th tx is on Thursday. I still have all of my hair. Iam thrilled. I get some strands that come out when I comb it but it doesn't seem any more than normal. Good Luck and let me know how you are doing Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 27, 2009 12:34PM dreaming wrote:

Not all treatments make hair fall, but when it will it will, hair are dead cells, and with chemo and radiation to the head there are no more cells, later hair will grow after treatment and usually looks and feels great, it is new hair.

In my hospital I had women that prefer not to have treatments than loose their hair.

I

After the mastectomy a second diferent cancer was found: Invasive Ductal Carcinoma, C.F.M.: Dx 7/7/1991, ILC, Right, 1cm, Stage IA, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Jul 27, 2009 02:05PM socallisa wrote:

I just want to add that the only person I know who used this 15 years ago, had a recurrance..

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

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