Cold Caps Users Past and Present, to Save Hair
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BB and LeslieinVa- it's so nice to hear positive news and know that you are finding yourselves back to normal. There's a light at the end of the tunnel!
Hopefull2- it's so true about the before pics. I see what I look like now and it's simply shocking. Hoping that once I feel better and my hair recovers that I can put some effort in the makeup and regain a little of what I was and be thankful. I'm 3 months behind you on the chemo so I have a ways to go. Time enough to research new makeup.
Summer2016- Interesting to read that you get funny looks from strangers. When I go to the grocery store, I try to just smile in general and try not to make eye contact with people - so afraid I will see someone I know. If I smile, maybe people will think I look this way on purpose, lol! I did run into someone at the library and she didn't recognize me at first, but then, bless her heart, she and I spoke for probably 10 minutes and her face never revealed any thought about my appearance. But I do look so very different - my face, well there's just more of it now with less hair and general puffiness. My eyes look tired and old. Physical Therapy - regarding the neuropathy, do you have the option to go to a physical therapist? I go for my arm and she really helped me yesterday with the swelling in my legs, arms and torso. She gave me exercises to do at home and is ordering me compression hose and sleeve. She also listens to me and understands me - much better than the oncologist. So it's like mental health, too.
Bruinvol - lol about putting the caps in the guest room and closing the door! So funny. Hate them! I get an eye twitch the day before chemo from anxiety. Almost done, though.
I just read that when the eye lashes fall out, that is the cause of watering eyes. I will mention it to the chemo nurse tomorrow and point out my swollen legs (hope my blood pressure is okay) and watch her shrug.
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GoKale4320----I had PT after my mastectomy, however MO has mentioned a med for my neuropathy if it does not resolve. Will ask at my survival plan appointment if PT would be something she would think would help!
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When it was time to color my hair, I found a salon that used organic, non ammonia, vegetable based dye and it turned out really well! It was the first step in feeling normal again. I think the brand they used was Kevin Murphy.
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Pamela, My hair is a little better after the color. It is still thin and troll like, but much shinier. I broke the rules, but we will see if I will pay for it! I do feel better without the grey.
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Thanks bluegirlred for the exercise response.
Fastgirl---I'm going to try the Aveda product.
I read that coconut oil is supposed to tame hair that's frizzy. Has anyone tried this?
I'm very thankful for our community. Everyone is so helpful!!
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hi all!! This is my first post, so not even sure if I'm doing it right. I'm starting TC next week and going to try penguin cold caps. Very nervous about the greasy grey look though. Has anyone tried using hats or scarves when they go out? I know penguin doesn't recommend it, but I was thinking of trying it (of course waiting until after chemo hadn't flushed out of my system. Days later? A week?). I've seen some cute loose/lightweight scarves that look like they've might not be very hot...(called Tichels)
Thanks so much!!
Have a blessed Thursday everyone
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Does anyone know when the shedding starts and stops? I am Day 22 of AC/T chemotherapy. My Penguin Cold Cap rep is not the most helpful or positive. thank you
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I was on AC/T and my hair started shedding day 22 of AC. So soon I expect.
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Cincymom - I am 5 weeks PFC and still shedding, I have very little hair left, at least with what I had the day I finished 4 months of chemo. I have taken to wearing cotton bandanas to cover the top of my head when I'm out. Also I ordered paisley bandana headcovers from Uptown Girl (made from bandanas) and I ordered some bandana scarves from Chemo Fashion Scarf (both on Amazon) but I liked the Uptown Girl better. I don't know if it is bad, now that it is hotter it is probably more of a problem. I might have to call Penguin and get the reps suggestion when I have lost so much hair.
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Question for you ladies who had chemo before surgery.
My hair is very thin now and I only comb it once a day. Sometimes I wear bandanas when I go outside because of the thinness of my hair. Surgery is in one week; how am I going to be able to comb my hair, right now I need two hands to carefully comb my hair. I don't like anyone touching it. My husband had never brushed and certainly not carefully combed anyone's hair. If I had trained him 5 months ago, he could get it, but I can't train him on my hair now. Any suggestions? I will have a friend who is taking care of my child after school, but I don't think I can wait until 4:00 pm to have her comb my hair.
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hi everyone! It always takes me a week to post after chemo even the thought makes me nauseous!!
I had another ER visit as they can't seem to get me to not throw up after every AC. The good news is I only have one more AC. Trying not to get anxious for next week.
I laughed about locking up the cold caps I do the same thing I can't even look at them!! I have lost probably 20% of my hair so far it feels thin to me but probably others would not notice.
Please tell me you all felt better after the T started. Once a week for 12 weeks so I see the light at the end of the tunnel just gotta make it through next week!!
💪🏻💪🏻 stay strong ❤️mj
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I washed my newly highlighted hair a couple of days ago. No shedding, no breakage, YAY!!! Again my last chemo was 2/10/2017 just highlighted last week
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Cincymom, I never wore hats but I did wear cloth headbands. You can use the brush-on hair color to cover the grey. You also might find that your hair won't get as greasy as it normally does. I used to wash my hair every other day but since chemo and cold caps, I no longer have to wash it that often.
Good luck! I had TC chemo and the caps worked great for me
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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.
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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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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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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
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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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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!
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Does it matter Ibuprofen or Tylenol? I heard you take Tylenol with AC and Ibuprofen with Taxol (or vise versa)?
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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!
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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
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Tylenol never really worked for me for pain so I usually go with ibuprofen.
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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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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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go kale and fastgirl congrats on finishing!! So proud of you
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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.
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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.
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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.
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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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