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All TopicsForum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Cap Users Past and Present, to Save Hair

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

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

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

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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Posts 18361 - 18385 (18,385 total)

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Apr 21, 2017 05:24AM Mquara wrote:

Does the shedding ever stop???? I am 3 days PSC so 2 of 4 rounds of tc done with Dignicap. I have so much hair coming out I am probably at the 40% mark now and have bald spots if I part wrong and on one side. I am being so careful but if the shedding continues through the next weeks until I hit treatment three I'll have little hair left come last treatment. If it stops or slows down now I'll be ok.

Diagnosis 2/3/2017, IDC, Right, 4cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery Type 2/22/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Dx 2/3/2017, IDC, Right, 4cm, Stage IIB, Grade 3, 2/3 nodes, ER+/PR+, HER2- Surgery 2/22/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
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Apr 21, 2017 06:32AM lovesgreenthings wrote:

AGlimomom,

With AC, shedding usually starts around day 21 so expect that. I just finished my 4th DD AC last week - have lost about 10% of my hair so far which I think is pretty good for AC. Taxol x 12 coming up so who knows how that will go, but impressed so far with Penguin Cold Caps. Since the Taxol will be smaller doses over a longer period maybe less shedding. I have seen some of the ladies with DD Taxol report heavier shedding during this but I am sure other factors played into it. Anyway, good luck with your caps!!


Anne

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Apr 21, 2017 12:08PM GoKale4320 wrote:

I am pleased to report that my last round of chemo was yesterday. The cold caps are halfway to Texas right now!

My question today is: how soon after chemo did you start using ointment on the thin areas to get the hair growing back faster? What did you find that worked well? I have read on here about castor oil, peppermint oil, and my sister reminded me about a salt scrub. Anything else?

Summer 2016- Hurray on the successful wash after the highlighting. This is great information so I can see how long I should wait.

CinceyMom - One thing I do everyday to help with the greasy hair and styling is use corn starch in my hair. I apply it gently with my fingers and it absorbs the grease. I wear baseball caps because of the possibiilty of sunburn or if it is windy. I also have a wide brimmed straw hat for when it is hot - does not work well in the wind, though.

MJPow - darn that nausea! Not sure what the laws are in your state, but what about medical marijuana? Tell the doc no more mickey mouse medicine. Time to get serious. lol! (Hope I did not offend anyone)



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Apr 21, 2017 12:37PM - edited Apr 21, 2017 01:16PM by Elastogelgirl

gokale- I made the mistake of putting too much argan oil in my hair for regrowth. It highlighted the bald! Took three washings and a bathtub dunk in warm water to get it out. I think not a good idea to cause a need to re-re-re-wash..

Hi all,

I'm a month post chemo. I have not been losing much hair aside from the argan oil disaster I caused. I lost most of my hair post AC. I started going very bald on top about two weeks after my first Dose Dense taxol. Hair started falling in large snarls all day long for about three weeks straight. My first Dose dense taxol was the worst for side effects! On day two, after first DDTaxol, my hands and feet were on fire swollen and hurting. I used rx diclofenac anti inflammatory cream on the hands toes, it helped. Even the carpet hurt my feet.

I think that first of 4DD taxol round caused me to go thru all my hair shedding early. I attribute my 'almost' no shedding PFC to these circumstances. I have very little hair but I'm still getting away with toppik and hats. Great news for me! with all my hot flashes the hats just make me so hot. At four weeks PFC I'm seeing soft grayish baby hair coming in. Cold caps are working for regrowth! If you can, really try to Keep your hands and feet on ice for taxol! I still have some annoying neuropathy!

had my neo-adjuvant surgery yesterday!,,(neo adjuvant-cancer surgery after chemo instead of before). Had my breast and nodal cancer suregery, and a boob lift, and port removal all at once at Stanford. all went well. I had a lumpectomy bilateral breast lift and 10 axilla nodes removed. Pain level and discomfort not bad at all. No drains at all! I think (hope) I saved a lot of nodes with my neo-adjuvant choice. Surgeons were initially talking about 20 plus node removal plus nipple removal last November. I ran the other way! Landed me the chemo first option! no difference in neo-adjuvant outcome we learned. Advantages We got to feel the chemo shrinking my large palpable almond sized nodes down to small peas! I also got to ski all winter thru chemo because I had no surgery to keep me from bounceing boobs and using my nodal arm. Very nice to get to see the chemo working like it did.

Stanfords surgeon Dr Amanda Wheeler so far as I can see is a super talented specialist in breast suregery. I interviewed three surgeons! two wanted to remove my nipple and take all the nodes. I kept nipple and a lot of my nodes. I don't have my pathology back yet so not confirmed. Wish me luck for clear margins

I had a Savi Scout instead of a surgical guide wire! Savi scout Can be put in weeks before surgery can do it in your pre surgery mammography and sonogram weeks before hand. Not much pain or discomfort with it. And that surgiacal wire would have been aweful for the waiting hour(s)in pre-op prior to suregery. Ask about savi scout!

Hugs


Hugs Elastogelgirl Dx 11/4/2016, IDC, Right, 1cm, Stage IIIA, Grade 2, ER+/PR+, HER2- Chemotherapy 11/30/2016 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery 4/20/2017 Lumpectomy: Right; Lymph node removal: Right Hormonal Therapy 7/1/2017 Liquid tamoxifen (Soltamox), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2017 01:03PM ykh wrote:

Hi Ladies, I am starting my first AC/T treatment next week with Penguin cold capping . Do you recommend to take Tylenol or Ibuprofen before the cold capping? Thanks

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Apr 21, 2017 01:18PM Leslienva wrote:

ykh, I would definitely take several Ibprofen's before cold capping! My first time using the cold caps, I thought I was going to scream because they were so cold on my head. But after several minutes, I got used to the cold, and was able to continue with them without any problem. You just need to get through those first five to 10 minutes!

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Apr 21, 2017 01:56PM ykh wrote:

Does it matter Ibuprofen or Tylenol? I heard you take Tylenol with AC and Ibuprofen with Taxol (or vise versa)?

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Apr 21, 2017 02:04PM - edited Apr 21, 2017 02:16PM by Summer2016

Mquara----Hi. I used Dignicap for my 4 rounds of TC. I had shedding about 19 to 20 days after 1st chemo. I had shedding all the way to 1 month PFC. I had extremely thick hair before chemo. After, I have about 50% of my hair left and darn happy to have it! 2 months PFC I had my hair trimmed and highlighted and after this wash...No Shedding :) The bald spots (top of head and temples) all have peach fuzz and are filling in nicely. Now if my brows and lashes would return....

Hope this is a help. Wishing you the best of luck!

Dx 8/14/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/13/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 12/8/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 21, 2017 02:13PM BBwithBC45 wrote:

Ykh, I was taking Ibuprofen because I didn't want to burden my liver with Tylenol in addition to Taxol. I also took Xanax before cold capping. My premeds had Benadryl, so between all these drugs I was sleepy and numbed to the cold.

Good luck!

BB



Saved my hair with cold caps. Dx 1/4/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/12/2015 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/17/2015, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 2/2/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Targeted Therapy 3/3/2015 Herceptin (trastuzumab) Chemotherapy 3/3/2015 Taxol (paclitaxel) Surgery 6/1/2015 Reconstruction (left): Tissue expander placement Hormonal Therapy 6/8/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/30/2015 Reconstruction (left): Silicone implant Surgery 3/8/2016 Reconstruction (left): Silicone implant Surgery 6/6/2016 Prophylactic ovary removal; Reconstruction (left): Fat grafting Surgery 10/10/2016 Reconstruction (left): Fat grafting
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Apr 21, 2017 02:23PM Leslienva wrote:

Tylenol never really worked for me for pain so I usually go with ibuprofen.

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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Apr 21, 2017 05:21PM - edited Apr 21, 2017 05:29PM by MJPow

My hair is hanging in there Wednesday will be AC #4 I know they say no braids but it keeps my hair from tangling.

My hair definitely has a different feel and I'm hoping it stays for my 12 taxol 🙂

Gokale- medical marijuana is legal here my friend took me to get edible chocolate it tasted like I was chewing on pot smoke so yucky lol but it did help alleviate some of the nausea! Just one more of this AC!!! Ugh so excited to be past it!

Ykh- I tried the ibuprofen before and it wasn't strong enough for me. But many seem to have luck with just the OTC. Meds. I take a pain pill and Ativan hopefully you will fly through it with ibuprofen





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Apr 21, 2017 05:23PM Fastgirl wrote:

GoKale--Congratulations on finishing!!!! I too finished today--can't wait to take the box to UPS!

Re ibuprofen versus Tylenol--my MO said to use Tylenol instead of ibuprofen, so since I know Tylenol is so bad for liver, I just haven't done either...

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Apr 21, 2017 05:30PM MJPow wrote:

go kale and fastgirl congrats on finishing!! So proud of you

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Apr 21, 2017 05:31PM Hanging_in_there wrote:

I am reporting back on my hair. Here is my post on March 14, the day after my final chemo. DD AC + DD Taxol -which has lots of pictures until March 14. New Pics are from April 21, 2017

https://community.breastcancer.org/forum/6/topics/...

I'm still losing hair daily. I am almost 6 weeks post final chemo (6 weeks minus 3 days). These are pictures 144 days after chemo started 11/28/2016. I think I'm down to 10% of my hair. I'm hoping the loss stops soon, I don't have that much more to lose. I bought Toppik and have used it a couple of times. If I had to go somewhere nice I would use it. Lately I have been wearing a bandana (or sun hat) when I go out.

Also my hair is in such rough shape, it has no shine, it looks crumpled all the time. I wash once a week with Acure and comb once a day. I also use a kids detangling spray everyday before I comb. I need this because my hair gets so tangled when I keep it down all day and then sleep on it. I tried Acure conditioner (the one for healing hair), but it took so long to rinse it out --- like ridiculously long, that I stopped using it after 2 weeks. Now I just use hair detangler.


Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Radiation Therapy Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Apr 21, 2017 08:51PM Hanging_in_there wrote:

I guess there is a difference of opinion on pain relievers. My MO specifically limited the amount of Ibuprofen during chemo, but not Tylenol, which I thought was worthless.

Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Radiation Therapy Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Apr 21, 2017 09:18PM PatinMN wrote:

Hanging in There, if the pics you posted above are current, you sure look like you have a lot more than 10 percent of your hair left! Hope your shedding ends soon. Are you using satin pillowcases? I still use them 4-1/2 years later. They might help with your tangling issues if you're not already using them

MJPow, looking good! Cold caps work really well on weekly taxol alone, anecdotally much better than with dose dense taxol, so hopefully your good results will continue.

Dx 7/13/2012, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2+ Surgery 8/1/2012 Lumpectomy: Left Targeted Therapy 9/20/2012 Herceptin (trastuzumab) Chemotherapy 9/20/2012 Taxol (paclitaxel) Radiation Therapy 1/8/2013 Breast Hormonal Therapy 4/1/2013
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Apr 21, 2017 10:12PM GoKale4320 wrote:

Fastgirl - Ya-hoo! on the big finish of chemo. Get those caps outta there!

MJPow - lovely pic! Not only does your hair look nice, you also look vibrant - not run down.

Hanging-In - You look great! That 10% looks pretty darn good. As far as you being able to comb your hair after your surgery - maybe the nurses at the hospital can give you some tips. They must encounter similar questions all the time. As far as you losing hair daily still, do you think you're losing less and less?

I bought some castor oil with rosemary to rub onto my head. I am going to try it tonight. I hope it smells okay. I found it at a natural products store, Garners Natural Life. I like that place; I am quite frank about what I need and why and the gals that work there are so nice and helpful. They are so young, yet professional.


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Apr 22, 2017 07:50AM Fastgirl wrote:

MJPow--Wow, your hair looks great!!! Will be sending you good wishes throughout the next round with Taxol.

Hangingin--I know that photos can be deceiving, but I agree with GoKale--it looks like you still have lots of hair! I'm sure it is relative to where you started, but I think my hair was medium at best when I started this process, so it looks like you still have a good head of hair. Maybe a style consult would be helpful? I purchased a wig as my Plan B when I first started. The shop is attached to a hair salon, so some of the stylists are knowledgeable of working with women who have lost their hair through chemo or other reasons. If you could find a similar situation, it might help you feel better about what you have, going out, etc. Thinking of you!!

Elastogelgirl -- so happy to hear that your surgery is behind you and that it was a better process than you originally thought. So sorry to hear that you've had so many SE's, but here's to all that new growth you are having!

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Apr 22, 2017 12:19PM Hanging_in_there wrote:

ykh. Agree if you can get thru the first 10 min you get used to it. I tried Tylenol but got no relief. The best thing was Ativan for anxiety. In my case I got more anxious the longer I had chemo. I was much more anxious for the third chemo than the first. Probably because I knew what to expect. Cold caps weight a lot. Rest your head back on the lazy boy lounger chemo chair. Sometimes I got a real bed at the chemo center and that was even better. Your neck is really going to hurt from the weight



Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Radiation Therapy Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Apr 22, 2017 01:06PM Hanging_in_there wrote:

PatinMN, GoKale4320, and FastGirl,

Thanks for the comments on my hair. It may sound like I'm fishing for compliments but what I am doing is recording what my hair loss has been like for what I understand is the worst chemo regimen they can give anyone.

I had dose dense A/C every 2 weeks for 4 times, followed by dose dense Taxol every 2 weeks for 4 times.

I used Penguin Caps knowing it was a gamble. I started out with VERY think wavy hair, and I think I would not have any hair today had I had thin hair to begin with. So hopefully others will not lose so much of their hair and for this long. Still waiting for shedding to stop. I have surgery on Wed. April 26 and would like the shedding to stop in the next week or two. I don't think I have any new hair growth yet, besides a little at the top of my forehead, which I understand comes in first.

I'll post before and now pics on this post for comparison.

before chemo Nov 2016 studio pic

almost 6 weeks PFC.

Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Radiation Therapy Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Apr 22, 2017 11:41PM Leslienva wrote:

Hangingin, from what I can tell, no one is going to know you're been through chemo. I think your hair looks pretty darn good for all the chemo you've had. I know to you it's different, but I'm not even seeing thinning. You're a real success story for AC+T!

Saved my hair with Penguin Cold Caps! Dx 8/1/2014, IDC, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/3/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/12/2015 Aromasin (exemestane)
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22 hours ago Moderators wrote:

Hi all,

Thought you might be interested in this new research news story!

FDA Approves Marketing of Paxman Scalp Cooling System in United States
April 20, 2017

The Paxman Scalp Cooling System has received FDA clearance. Read more...

To send a Private Message to the Mods: community.breastcancer.org/mem...
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9 hours ago ykh wrote:

MJPow and Hangingin,

How did/do you wash your hair? Penguin recommends to dilute a capful of shampoo in a bowl of tepid water and pour it over your head. I am not sure if I Iike this method. Also, do you use a conditioner? My hair is curly and can be tangled easily.

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3 hours ago GoKale4320 wrote:

Almost all of my hair that falls out has a white bulb at the end. So this morning, I wondered if this meant these strands would never regrow so I googled it. I can't find anything that is from a reputable source - but it sounds like the hair will regrow if the bulb comes out - will just take a while. So the bulb is not the root and the root is still there. Can anyone comment on this?

Hanging In - I did not mean to diminish your concern. At 6 weeks post chemo, I believe your hair looks great. I read that it takes 8 weeks to get all the drugs out of the body so maybe your shedding will end soon. Best wishes to you on your upcoming surgery.

Elastogelgirl - no drain? Amazing! I had a drain for 2 weeks after a lumpectomy. So glad your surgery went well.

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2 hours ago lovesgreenthings wrote:

Moderators, thank you for posting this!! Glad the FDA is seeing the light about preserving head hair for chemo patients. Yea!!

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