Cold Caps Users Past and Present, to Save Hair

Meow0369

help I'm freaking out!! 15 days out from 1 st chemo taxotere/ carboplatin and I'm having MAJOR shedding! Scared to comb out my hair bc tons come out!! I'm using Arctic cold caps and just came across that I wasn't doing it 100% right bc I was feeling alittle sick that day. Now I feel like a jackass. I just pray I have a second chance to hold on to what I do have or can slow down the shedding for my next dose.

I knw everyone situation is different but I read that even other cappers still lose quite a bit of hair. This is not how I wanted to start this battle

viktoryak

Meow,

What did you do wrong? I used ACC and we had some improvement to their instructions..- less time before changing. -15 min.Not 20 for sure.

Runner70

meow, what do you think you did wrong? I didn't use Arctic the company but the company I went with used the same caps. I started shedding at day 23. At this point it's kind of a wait and see kind of thing but I hope it's just normal shedding. Fingers crossed for you

mdg

For scalp flaking, I think some gals used apple cider vinegar. I hope someone can post details for you. I didn't have that issue but if you search in the thread using key words you will find some comments on using apple cider vinegar.

Positivepower11

I had: have dandruff tried Apple cider vinegar / did not really resolve issue but I figured at this stage I have no choice, better to keep hair with dandruff than risk hair . Am going to figured out solution later post cold capping

Runner70

I got my hair highlighted today and that single handedly made me look like me again! Most of my hair that fell out was the top layer and that was the layer with my highlights. I was left with a reddish brown color that has never seen the light of day. It was just not very summery. So my hair survived the day and my stylist said I lost a normal amount when she washed and combed it. 6 weeks ago during my first cut after chemo, quite a bit came out and she had to switch combs. I hope I'm getting toward the end of my hair falling out. I told my dr it was still falling out and she was surprised, but I'm her first patient to have success with cold capping so it's hard to explain why hair falls out this far out. Now I just want all my hair back. I keep telling myself I really need to be grateful for the hair I kept. I'm not starting over bald like so many are.

Has anyone kept up with the Shannon Dougherty drama? I'm unclear what stage she is but it sounds like she had lymph node involvement. Anyway, she's quoted as saying she's going to be dead in 5 years. I wish she would stop saying stuff like that publicly. She could scare people unnecessarily who are newly diagnosed. I feel bad for her. I'm glad I'm not famous. She made a big deal about shaving her head. It made me wonder if anyone told her about cold capping. She could be on this message board somewhere.For her sake, I hope she is.

Meow13

Runner sounds good. I always feel better after the hair dresser. I'm sure your hair will stop shedding. I lost at least 50% of my hair when I went thru menopause. It was evenly falling out but very upsetting. It stopped and started getting thicker even after taking arimidex.

I hope Shannon gets support too. Cancer, chemo, recurrence is really scary. I personally panicked when diagnosed and shook like a leaf at the idea of mastectomy and chemo as treatment. I was also worried AI drugs would cause joint pain and hair loss. Then the thought of dying of this disease and leaving my family. So glad I found the support on BCO.

Kechla

I will be starting TC in 2 1/2 weeks. Need to decide quick on cold capping. For those going through it now or are done, what advice would you give? Mostly, I just want to ensure I don't lose my hair permanently from the taxotere. My hair is not thick now. If it weren't for the permanent risk, I'd probably skip it.

Poll - which capswork best?

Any tips for just starting?

Anything you'd do differently?

Does anyone know the true risk (%) of permanent hair loss for 4 rounds of TC (taxotere)?

phaila

Runner- I would say that you truly are a success story and I'm VERY happy for you!!! Have you started runnin again??

And screw your friends. You know I was flooded with support in the diagnosis stage. After treatment started they all disappeared, including my best friend. I heard from her 2 times since my first lumpectomy. One was because another friend told her I was in the hospital after chemo the next was because I saw her at a kids bday party. So she only came because if someone else told her then she couldn't pretend she didn't know. F her.

Positivepower11

Runner : glad to see your success, Congratulations . kechla Tc has great results I did 4 rounds of T  before Ac and hardly lost any hair  .

Ac Round 2 and particularly Round 3 have seen an increase in shedding . Last chemo Tuesday, hoping no 4 is kinder and hair starts regrowth soon . Ladies with Ac what proportion of hair were you left with after round 4 ?, did you have done random days of big sheds after 8-10 days ? How about Pfc how quickly did the regrowth come in ?

Meow0369

For some reason that day which I wasn't feeling right , stressed out bc it was first infusion , went by myself ( husband ) works 12 hr nights. I watched turtorial several times , read manual and still was putting back in cardboard in caps which didn't allow for them to get cold enough. I had a hard time using radar gun too. The numbers kept fluctuating. Towards the end I did however change them every 12 min bc they didn't feel cold enough.

Do you have any advice also on the restocking of them too?

Positivepower11

Meow as far as I know no one has tried to cold cap on their own you need a helper/ friend/ someone else . I guess you could numerically restock and label but most important is to get someone to help you with this,

Runner70

meow- yes you really need someone to help you. It's overwhelming for you to do by yourself. The temperature thing is a big deal and that might be what happened. Once I got home from chemo, I could do the last 4 hours of capping by myself since I wasn't tethered to an IV but I can't imagine trying to do it alone at the infusion center without a mirror in front of me.

Runner70

kechka- absolute, complete permanent alopecia is around 1-2% but a lot of stuff like menopausal and hereditary factors are also involved. A higher percentage report hair that has thinned and not recovered to what they had before. The vast majority get all their hair back.

Phaila- I started running again a week ago. I took more time off than I planned because it's too damn hot here right now!

Kechla

thanks runner. Lots of numbers out there that are much higher. Your explanation makes sense. What brand of caps did you use

Meow0369

Runner70 and Positviepower11, where I live I'm the first to bring cold capping. I do have a nurse to assist me only if she's not busy w other patients. She did help a lot so I do plan on taking a mirror next time. My dr is wanting to look into getting the Dingi Caps machine there but it doesn't help me right now. I don't have family or a lot of friends where I live.

My mother who is also twice BC survivor (we are both BRACA 1)comes in to help w my 3 kids. And she is physically limit too. I'm kinda on my own.Grateful for this site w you ladies.

Do you ladies use conditioner? Artic C says to use organic detangler but I have knots and afraid to comb after shower bc of pulling. I also know not to brush knots while wet bc that causes breakage. They recommend to comb several times a day. Is that harsh on hair ? What do you do for your hair?

Angiel

positivepower....I did 4 AC and lost about 30% of my hair and then did 11 Taxol treatments in which I lost another 5-10%. I think my biggest loss came between AC 3 and 4. I did notice new growth starting during the taxol treatments but I did continue to have some big sheds PFC. Not sure if residual from the AC or the combo of treatments.

Bab.... I also used a spray bottle mixed half and half with water & apple cider vinegar to try and clear up the white flakes I experienced. I would spray it on and work it it through my scalp and leave on for the day until my next shower. Yes, I smelled like a pickle but it helped.

Kechla....I used Penguin Cold Caps and was very happy with the results especially given the harsh chemo regimen I went through.

JCS28

Kechla -- I had GREAT success with Penguin Cold Caps and definitely recommend them. I also had a woman in town who taught me and my mom how to do it so we were ready to go on the first day. I think that helped a lot. And I was lucky to have a freezer at my center. I'm glad to answer any questions!

meg2016

Positivepow… I am right there with you, my last chemo AC is Tuesday. I didn't lose much on the T either. Shedding has been a lot on AC and I'm also wondering how much more I will lose and how long before I start to see new growth. At least we are almost done!! High five to that!! I will be ready to ship these cold caps back.

Positivepower11

Meg2016 - we really are right there together, tomorrow Tuesday is my last chemo as well. High five and Yoo- hoo to that. Cant wait to get it done. Also cant figure out why the increased shedding happens all of a sudden on a random day and then stops on its own. Lets keep posting to see how we are getting on.

Angiel thanks for the response is reassuring I've decided the worst is behind me.

mdg

Ketchla - I believe the stats for permanent hair loss from taxotere are grossly under estimated. I personally know 4 people with permanent hair loss after taxotere. Not trying to scare you or anyone. It has just been really hard to see friends go through this. Most have had significant thinning and you can see there scalp through the thin hair. One has male pattern baldness and her hair won't grow past a few inches. All had chemo 5 years ago or longer and their hair never returned to anything close to normal. I know caps are not the choice for everyone, and that's OK. We all have to make decisions that are right for us. I hope whatever you decide you are happy with the decision you make. I personally used PCC's and was very happy with them. The do have more consistent good results than other caps out there. Best of luck!

Kechla

Thank you mdg. There is so much conflicting information. It's overwhelming. I also have Reynaud's in my hands, so not sure how that would be affected.

viktoryak

Runner and Phaila, on the friends topic...

I am reading this great book called " Anticancer" and here is a passage from this book

"Suddenly I had the feeling that there was a club of the living and I was getting the message that I wasn't a member. I began to feel frightened that I was in a category apart, a category of people defined primarily by their disease. I was afraid of becoming invisible. Afraid of no longer existing, even before dying. Perhaps I was going to die soon, but I still wanted to live fully up to the end"

I was yesterday at the party with group of old friends and this is exactly how I felt. I came home crying.

sarahrae

viktoryak~

that is still in my top 5 books! love it and rec it so hard. I am familiar with that passage and the feeling, but I just cant imagine you being left out, you seem like such a light!!! you bring such joy and life force to this discussion board ~ hang in there, it may mean that you find a new, even more supportive group of friends!

keep doing you, you're awesome. check out mark nepo's book if you haven't~ a little more personal, raw, and beautiful.

Runner70

I have that book too! I know that same feeling you described. It's lonely being there.

viktoryak

sarahrae, thank you . but it's exactly the point. I was always the one who made parties, theme parties and the one to made people dance, play games etc.. And now I changed...no parties...( just don't feel like it) and not a clown anymore... So ( not all friends) but many just kind of no more inviting me, no more coming over.. Like even the guys we traveled with for years, yesterday said they don't want to plan with us travel bcs I already had to cancel long planed trip with them because I was diagnosed and had to go trough chemo....They were fast to find new friends to hanging out with...

Anyway, just sharing with you ladies. Its just been emotional weekend for me with my best friends getting her cancer back and me feeling that distance from my non cancerous friends.....

Thank you all for your support!💋

On the positive note,first time in 15 weeks I used blow dryer on cold to try to style my hair!

Positivepower11

Ladies just my thoughts this is a good wake up call, those who don't stand by you in tough times are not really friends and one should not invest any more time with them. Its better to know that sooner rather than later and invest in those who stand by us in the hour of need.

Meow0369

revent, I'm glad to hear that your doing well with Artic Caps. I have them as well and my first time using them wasn't the best bc of my error. Just was such a stressful day. To hear that your doing well gives me hope w them. I'll do better my next infusion this week.

Meow13

Hi meow, I hope your next attempts work. Sorry you don't have anyone to help you. I have heard of paxman that sound easier that are "plugged" in to automatically maintain temperature.

I'm trying it if I have to do chemo in the future. P. S. Did you have alot of nausea and throwing up on chemo?

Meow0369

Hi meow, Thankyou I sure hope I can do better for my 2nd infusion this week. That's great that you don't need chemo. It was a surprise to me too. I was first stage 0 then after surgeries went to stage 1b. Nodes clear doing it to "clean house".

No I did not get sick just alittle queasy but took zofran as needed. I had bad stomach acid tho so gonna take Prilosec couple days before. What stage are you?