Cold Caps Users Past and Present, to Save Hair
Comments
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I'm 19 days into my AC -T treatment had my second treatment this past Thursday . I'm shedding and pretty thin over my right ear. The shedding picked up today, and beginning I panic .... How many of you ladies were on my protocol that had success, when did u shed and how much... So maybe I can stop obsessing .... A lot... My wonderful fiancée has been cold capping me. My hair is down to my waist... So a lot of panic her
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Hi Tripper. I too am on AC-T (dose dense AC) and am just a couple of days ahead of you. I'm 22 days in - treatment #2 was 8 days ago. I haven't shed anymore than normal until today. I lost maybe 60 hairs after my shower & shampoo this morning. I think we all respond a little differently but I remember reading through the pages of past posts that for people on our treatment plan, we are doing well if we have hair between the 21 to 30 day mark. Meaning "well" if we are shedding and not losing clumps of hair. I believe the shedding will slow down a bit towards the end of the AC treatment from what I've read. I met with my surgeons yesterday to talk about mastectomy & reconstruction and both said they couldn't even tell from my hair that I was receiving chemo. They went on to say that in their past experience dealing with PCC users, those that haven't lost a lot of hair prior to day 21 tend to do well & finish chemo with most of their hair. Totally made my day! So stay positive - you are almost there! And remember, obsessing & stressing about your hair can make things worse. Just comb once a day & try and forget about it. I remember reading about a past user on this forum with AC-T who finished with 20-30% of her hair. She blamed a lot of her shedding on the fact that she was so constantly worried about her shedding & loss of hair. She still considered the caps a success but wished she hadn't obsessed so much over her hair as it was shedding. Stay positive. You've got this!
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My shedding finally decreased. It was excessive days 18 and on for about 10 days. I start round 3 next Wed., so in 6 days! I have thinned enough on the top to see my scalp so I did purchase Toppix! Best thing ever! I love it.
I have found that if I loosely braid my hair I can stop running my fingers through it. I had to do something or I was going to drive myself nuts! I add a little scarf to make it sassy and I can get through work and the day without touching it. I bought tiny rubber bands and braid my hair down as far as possible. It has gotten damaged from the chemo and will need a good cut at the end of all of this anyway.
My thinning area is def. being made worse by the grays. The toppix helps cover some of the graying too!
I have that tight pony tail pain, itching, tingling, etc too. It was associated with my first major shed. After that, I just randomly get it sometimes. I don't necessarily relate it to shedding now. I do get it in the thin area, it gets tender to touch. Makes me wonder if hair is growing in?????????
I will attach pics to show how much it has thinned ( you can really tell while it's down) and how I've braided it to get through the days.
Hope you all are well. BTW that PCC was defintely black and blue but that stupid dress was white and gold!
Okay so the last one isn't me, but I couldn't resist!
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As promised, checking in after yesterday's first adventure with cold capping. It was definitely a circus! Made the long chemo day go by quicker, had some curious onlookers from time to time too.
When we walked in with the coolers, my husband was joking that it just our lunch. I'm not sure how the nurses were annoyed, I think they did a pretty good job of not showing it bugged them, but I don't think anyone was particularly cheering for me. My nurse navigator did stop by however and she did a little cheering me on.
I had some tense moments the day before chemo actually, when we went to pick up the dry ice. I had found a small local company about 10 minutes from my house. I had called them the week before my chemo, they did not return my call - this should have been my first clue. I went by their place the next day, and it was closed. However, I called again and the owner picked up the phone so I told him that I needed dry ice for 12 weeks, every week, I told him what it was for - he had actually heard of cold caps. I thought I made it clear that I needed a reliable supply. We made an appointment that I would come at 2 pm on Monday to pick up the ice. We went there, the place was unlocked, but there was nobody there! We waited outside in the car for half an hour, we called twice, no answer. So we ended up going to a different company, much further away, thankfully they were still open - unfortunately so far from us, and more expensive. The morning of the chemo, guess who calls me - the guy who wasn't there on Monday. He had the nerve to tell me that I should have called him on Monday morning and reminded him about our appointment! Because he is shorthanded and he himself had to deliver 5000 pounds of ice. I get it, 5000 is more important than my 100 pounds, but don't make it my problem! OK, rant over.
So, the morning of my chemo we packed up the coolers 3 hours ahead and went on the road. Things got a little delayed at the chemo center, so by the time I got to use my first cap, it was much colder than it should. We did take it out about 10 minutes before I thought I was going to have to put it on my head, we used a laser thermometer, in fact, we had two and one of them didn't show any temperature - I guess it was too cold! So my poor husband went down on the floor and started kneading the cap. And it was crazy like that all day - too cold, almost right, a little too warm, etc. I'm not sure I had the caps on my head full 50 minutes before Taxol started. I'm not sure the caps were snug against my entire scalp - my husband was saying that when they were so frozen they were much bulkier and more difficult to put on, than when we practiced from the freezer. I think they were quite snug against my hairline, but not positive (wouldn't that be something - I'll have hair on my hairline, but be bald in the middle, like Capuchin monk?). Hopefully next week will go easier.
I guess I'll have to be patient and we'll see how successful we were in 2-3 weeks when the rest of my body hair will start falling out. I hope I'm not that snowflake who is not successful. :-)
Also, I cannot wait to wash my hair! I have whined before that my hair gets very, very greasy very quickly. Last time I washed it dutifully on Saturday, as it was 3 days before my chemo. Right now it is so greasy it hurts! I think I have a colony of cooties that are chemo resistant at this point. I cannot wait for Friday, I think I'll be so excited to wash it, I'll get up at 5 am! I really hope that the chemo will dry my hair up as you promised.
Hugs to all,
BB
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Tripper - I had dose dense ACT protocol that started May 1st last year, ending In August. Caps worked!
It was stressful as once I started shedding, I never really noticed a significant slowing, even through Taxol and 8-9 weeks following. If the "hair balls" were smaller, I attributed it to having far less to lose loss seemed proportionate. I had thinning above ears early on. Toward the end I had a very thin spot on the top that I was quite self conscious of, but covered by folding a scarf into a wide headband. This lasted maybe 4 weeks as new growth filled in quickly.
When shedding stopped, the hair was so thin and scraggly that I opted for a short cut, though far longer than s pixie
So while I wasn't comfortable keeping the length, which wasn't my primary goal, I never came close to needing a wig and strangers couldn't tell I was a cancer patient undergoing chemo Success in my book!
I had all the strange sensations on the scalp, fears the caps were too cold/warm/ill fitting and daily freak outs many of you are experiencing. Try hard to focus on the hair covering you do have. After day 25, I was counting the days I would have been bald. It was reassuring when I was getting to weeks!
Thinking of you all and wishing you peace and strength You can do it!
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Question for everyone: Does new hair come in while still on chemo or only after all treatments are done? Does the type of treatment make a difference with hair regrowth? Just wondering how long I'll have to hide the thin spots. Thanks all!
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thank you Kazzy, today I just put a scarf around it and allowed the braid to hang down to the side, this has stopped my obsessive running my fingers thru my hair to see if I'm shedding, and I must admit it is kinda cute to wear it like this. Tomorrow is day 21 after my first chemo, and when I put in perspective I still have most of my hair. And am very happy with that, 2 more AC so I'm half way there with hair, so I'm blessed3rd round next Thursday. I think as long as I baby it now I will make it.
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Mlmomma, my hair continued to grow in length while I was on chemo, but I didn't notice new hair growing in until after chemo was over
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I had another major shedding including a hair ball on Day 33. That scared me as I thought the major shedding was done. I'm continuing to treat it gently. Combing it softly once a day and leaving it alone. I also bought Toppik because I had thinning and a bald spot near the top after that shedding. I was very pleased with the immediate result. Today is Day 35, and the shedding was light. Questions: Do you use Toppik daily or only as needed? Do you feel tingling when you apply it or is that only because it was my first time using? In addition to covering the bald spots, does it help new growth appear? Thanks.
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BB, good luck, hope all goes well
MiMomma, I think there's no growth, but some users report growth?
Angiel, so good to know you are doing good
GUESS WHAT!?
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Congrats, CurlyG!
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that pic above shows me w/ my clip ins under (black hair where I lost most...my thin whispy dk blonde is all that's left...about 10%
but again, I'm not bald...gonna do my long pixie tomorrow...my 3 inches of hair that held on will b all I keep & weird since I cant style & it's naturally curly so won't look a full 3 inches 
oh well...I'm just happy to be done0 -
CurlyG - CONGRATS, so happy for you
you look great. I'm right behind you .... next Thursday is my last treatment!! Yay for us! Best of luck. ♡ Kim 0 -
Curly G - Congrats! You look great! I like the sign too - very creative. Also noticed the BC symbol on your nails - nice
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hey curlyg, just finishing my last 3:20 of cold capping after last chemo today. I feel like I need a good cry now that this is over. Will be finally defrosting these caps after seven months in the cold freezer at the med ctr.
I'm done. DONE!
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Way to go, CurlyG!! Please be sure to post pics of the new do so we can see how gorgeous you are!
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Wow, you too Gatomal!? Congratulations doesn't seem big enough for such an important day. I'm sending both of you, and anyone else who finished today, a standing ovation for a job well done.
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Congrats, ladies! H U G E milestone on your journey.
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So happy to be seeing all you ladies done! Good shooting! Total day brightener!
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thanks ladies! Just took off the very last cap!!! Golden paws, almost there!
MiMomma, I'll post a timeline of pics including the new short do...I'm nervous always had really long hair
Gatomal, CONGRATS! It feels great & yes...I cried in the elevator leaving the hospital w/ hubby...so happy & emotional..
Dakjo...here are the nails up close....
I AM STRONGER THAN CANCER!
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congrats everyone! Gatomal- I've been watching and praying for you all these months. You're amazing. Every time I read one of your posts, I had to say to myself, "and she's doing this whole pregnant with twins!" And then you gave birth and kept going. A true inspiration. God bless you and your family. Of course blessings and prayers to all my sisters in caps!
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CurlyG
Congrats!!!! You look happy and healthy!
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Way to go Curly! So happy for you! What an emotional day. Looking forward to seeing a pic of your new do tomorrow - you will look gorgeous!
Congratulations Gatomal! 7 months!! Wow! You are an inspiration. I'm so glad you put your treatment length in that particular post. I've experienced some doubts lately about my ability to continue through with this over the next 5 months and to read your post when I did, well, it really helps. Thank you for that.
And Goldenpaws, I hope Thursday gets here real soon for you! How great to be one away from done!
One questions for you who are just getting done -- when does your port come out? I absolutely hate mine. I burns & stings almost all the time. The doctor said my bra strap is irritating the inner stitch that holds it in place. Anyway, because it is so irritated, I can only sleep on my back at night which equals very little sleep for me. And it's just not my bra, it's literally every cami and workout top I own - anything with a skinny strap. It's just in such a bad spot for me. Ugh.
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Congratulations all!!!!
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What a great way to start the day, to read how many have completed this journey. Also, congrats to those almost done. You have endured and come out on top. Best wishes to all of you!!!!!! I look forward to the day and I promise there will be tears of joy!!
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I am just getting my treatment options and I am considering using the cold cap. My oncologist is recommending 4 treatments. What should I expect as far as the worst in using the cold caps? Would someone feel comfortable letting me call and ask you questions? I am a little worried on if I can handle it and long term side effects. I am 40 with 4 kids under 10 and want to try this so it is not so hard on me or my kids.
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Love the nails CurlyG! I'm choking up just reading about everyone choking up. So so happy for you.
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Angie- my port was place on the wrong side - the side I had my lumpectomy and radiation. After radiation the tissue tughtened around it and now I'm even more uncomfortable. Not to mention the bra straps and my baby basically hanging off it like it's a door hook. I have six mioths of herceptin left but am having my port removed March 23rd. I think everyone is different and most wait until a after treatment is complete or longer. But mine is painful and annoying and super noticeable. So its coming out.
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I got my port out ASAP when I was done! Congrats Curly! Great to see that some are doing well with AC!!!
All of you girls are amazing and continue to inspire me every single day. Prayers and hugs to all!
By the way - it was 4 years ago this week that I started chemo. I can't believe it. So much has gone on in that time....life is good. Just get over this first year and things get better....I PROMISE!
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Huge congrats mdg!!!!
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