Cold Caps Users Past and Present, to Save Hair
Comments
-
DanceTrance - I had frostbite that turned my forehead light brown in a narrow strip along the top after my first session. I too wondered if the coloration was permanent, but discovered that as it dried out and peeled off my normal skin was underneath. I think it took about two weeks, maybe three. My forehead looks fine now.
The frostbite spots I got on the top of my head were far more serious. They actually turned black, or close to it. They took about six weeks to dry out and start to flake off in big pieces, and were stiff and itchy. It looked like gross big, half inch dandruff. The front spot has pretty much finished peeling, taking hair along with the old skin, the back one is still crusty so must have been worse than I thought. I can cover both with hair if I brush it over them.
Again, this should not have happened if I had been careful to follow protocol and told my helper what the temperature should have been before we started. She was trying to be helpful and had the caps far too cold. She has been spot on every time since then. I know she feels badly, but it was also my fault for not being careful.
As far as taking off the moleskin with minimal damage, my helper has the most wonderful wipes made to take off adhesive bandages. She carefully uses them along the edge to push them back gently and they peel off easily. I doubt I have lost a hair.
0 -
HBB- my period came back 3 months after my last infusion. It has been pretty regular since.
0 -
LeesaAnn - you look pretty! Hair looks great! No signs of chemo looking at your photo. I also shed for several months....I felt the same way. I am now a year and a month post chemo and my hair is super thick. My hair stylist had to thin it out! LOL! The hair I lost at the bang area, over ears and nape of neck is long now....my bangs that grew back are now past my nose. Hair is super healthy and it still does not get greasy. I only wash it 2-3 times a week and I exercise daily...SO thankful for cold caps!!!
As far as periods...I did TCx4 and was having a period during my first chemo in March of 2011. My period never came back since then.....I started tamoxifen in June of 2011. Still no period. I am 46 but was premenopausal before my DX.
0 -
I did TCH and period did not come back.
I was 44 at time of diagnosis. Just took a blood test and gyn. said "You are all done with that."
Did have hot flashes etc. right after chemo.
Congrats to all you ladies who are finishing, have finished etc.
0 -
I had regular periods pre-chemo, nothing since. My bloodwork also shows menopause. I'm glad, since my tumor was ER+.
Lisa, that was a great write-up, thanks so much for the realistic assessment! I absolutely agree that the hair post-chemo will not be the same, but you will have hair. I shed mostly after my first tx, and not much after, and afterwards realized that I must have lost my "sideburns", because I look like Elvis now, with two inch sideburns! LOL The hair that I shed is growing back quickly, and it looks like I have a halo of frizzy hair around my head. I don't think that my hair has ever felt this thick at the roots. No one would ever know that I'd had chemo just a few short months ago.
0 -
Two more days till tx2, almost there! You guys have me so much more calm, lol!!!!!!
I too had the brown frost bite that I could scrape off with a little lotion on my finger tips. Will be extra careful to have better coverage Friday.
Hortense, what removal wipes did you use? Removing the mole skin was absolutely awful.0 -
Hortense - you are spot on about the frostbite! I am two weeks post frostbite on my temple area, and when I washed my face this morning, part of it peeled off like dry skin, revealing nice new skin underneath. YAY!!!! So it looks like even if it happens to you, if it isn't too severe, you can recover from it with scars!
So sorry to hear the other ones on your head were more severe. I think both of us sharing our stories is critical to others preventing the same thing happening to them! In my case - get that moleskin close to your hair, and have your helper check your forhead skin!!! In your case - make sure your helper is checking the caps for the proper temp!!! Learn from our mistakes, newbies!!!
Could you post the name of the wipes she uses to remove moleskin easily? (for the benefit of others. I'm DONE!)
0 -
I used mini-pads underneath the moleskin to help protect my forehead from the adhesive. Also, to prevent frost bite, make sure your helpers wipe the inside of the cap just prior to placing it on your head.
0 -
Can anyone tell me how long the infusions take? I need to have the info to order the PCC and the MD was kind of vague about the time it took. I will be starting AC X4 every 2 weeks, then taxol X12 weekly on July 18 th.
0 -
Call your infusion center directly, they can give you exact times.
0 -
I just finished my four AC treatments on Friday. The A takes about 10 minutes and the C takes around a half an hour. I usually have to wait about half an hour for the pharmacy. My premeds werer oral so they didn't take very long. I think the taxol treatments are around an hour weekly.
0 -
cwsterling, I called my onc's office and told them I needed exact times for the caps.
0 -
@cwsterling and others wondering about infision times. I never understood why this question is even asked by the Penguin cold cap company...The amount of time required to wear the caps is always the same i.e., 50 mintues prior to chemotherapy, during chemo, and 4 hours afterward.
0 -
Hi ladies! Congrats to all of us strong, brave women! I am 11 1/2 weeks post chemo. It has been 2 weeks and 3 washes with no shedding. Still I hoild my breath each time I wash. I would guesstimate I lost close to 50% of my hair. I lost the most beginning with my last tx and the 9 weeks following tx. It is very scary because you are convinced it will never stop. It does! My hair is too thin to wear down because it looks scraggly and you can see right through it. It looks very full when up in a clip, which works because I am a cop and have to wear it up anyway. I will be coloring my hair on Monday!! I am also looking forward to a little trim, about 2 inches. That will take it up to my shoulders. The ends are so fried. I haven't had a cut or color since October 2011! When can I blow dry and maybe use a round brush for lift? I am not used to the flat wash-and-wear look. i think the brush and dryer could help a lot.
My period stopped after the first AC. It hasn't come back but they say it may. I'll be starting tamoxifen next week. Just finished radiation 3 days ago with very little side effects. My boobs still look symmetrical.
0 -
Bunbunsmom,
So glad the shedding finally stopped. I am 6weeks pfc and shedding like crazy. I have lost more post chemo than prior I hope it stops soon. It's getting rather scary. Do you have new hair growth as well? How did the lashes and brows fair?0 -
bunbun, You can blow it with the cool setting, but not sure when you should use the warm setting.
Leveled, I also lost more hair post chemo than during, but it will stop. A lot of women started taking iron and silica to help stop the shedding.
0 -
OK LADIES,I NEED YOUR HELP!!! Today was TX 2, and the shedding is in full effect. I have coarse curly hair and I feel like the hairs that are shedding are tangling other good hairs causing more hair to come out(or i'm totally paranoid!) How soon/often post chemo did you at least rinse and comb your hair with water only? I want to do it tomorrow but i'm scared and yet i'm scared not to. Help!!
0 -
hbb- I have curly hair too. I had to rinse my hair in cold water with conditioner on the ends and comb it gently to get the tangles out every day. If you don't comb the hair every day, the old hair gets stuck!
0 -
soccergirl did you do it even the days right after chemo? Did you rinse completely or just wet bottoms until wash day? I'm terrified either way!
0 -
Don't panic! I did do it every day except infusion days. I knew that my hair type would no do well with the protocol. I rinsed my whole head in cold water and used Regis Pure Moisture Conditioner and used a wide tooth comb to detangle the hair. I used Sea Chi Leave in Condioner and Aveda Be Curly for products. I aired dryed and was very gentle with my hair. I would have never been able to comb my hair without conditioner, so I modifed the instructions.
Now that I am 8 months out, I think I lost about 30% of my hair. I had long hair but the chemo was so drying I chopped it to my collarbone . It has filled in nicely and looks pretty again! You will get through it! You will keep your hair. I used clip on extensions once my hair stopped shedding. I highly recommend them.
Good luck! You will get through it with your hair!
0 -
Has anyone used the Nioxin line and cold caps?
0 -
Ok all......six weeks pfc....shedding like crazy, just washed today and ugh....so much came out. What is everyone's experience, how long will this continue? I have read some posts from five weeks to five months. Anything else I can do besides iron, biotin and silica. Also have exchange surgery on the 12th of July can I continue to take biotin and silica, onc office said not sure since they are not FDA approved, I hate to stop taking them now.
Lisa0 -
Soccergirl, I rinsed carefully and combed out this am and used Kenra's spray on conditioner at the ends(away from the roots) to make it easier. Actually it was less eventful than I thought shed wise and I definitely think it was the right decision to make so thank you for the support!
Are there any other curly headed people on here that can share their various techniques please? I feel like they should give protocols based on hair type but they don't!!
0 -
I called the infusion center and they gave me exact times. Thanks. Maybe they need to know how long it takes to determine how many caps you will need?
0 -
cwsterling, That may be why. I know that I used a freezer (donated to my facility by rapunzelproject) so I had to have 14 caps, because you cannot reuse a cap within the session. Dry ice users get less caps, because dry ice will refreeze them much faster. They don't like to send more caps than necessary.
Did you ever find anyone in your area to help you on infusion days?
0 -
@ cwsterling, Laura5 and others. Time is not a factor when determining how many caps you will receive. The Penguin company determines this based on the method that you will use to cool them. You will receive either 14 caps if you have a freezer available to use, or they will send you 8 caps if you are using dry ice and coolers.
0 -
I think this is what my helper uses to get off the moleskin. I found it on Amazon. It costs $7.59.
Uni-Solve Adhesive Remover - Wipes
0 -
soltantio, sebm9 swam every day during treatment. She also has a great write up on using the caps. PM her.
You should not cut your hair though, the weight keeps the roots strong. The roots are what you have to protect.
0 -
I just washed my hair post TX 2 and I am traumatized. the amount of hair I lost was staggering. It felt like I could pull it all out, which of course I was trying to avoid. I guess I have not really had any true shedding until now if that's what shedding is. Was that normal???
0 -
Had Lumpectomy and 32 nodes removed, got results today " complete response"
0
