Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi Ciaoginag- I understand how you feel and I chose Penguin Cold Caps. I had 8 dose dense treatments of the hardest chemo over 4 months and now am 3 weeks PFC and I still have my hair! Here is link to a news story a local station did on my story:
0 -
Ciaoginag - I had cytoxan & taxotere x 4 and it almost always results in 100% baldness. With this chemo regime, cc users report about a 20-50% hair loss. If you scroll back through the thread you can look for the outcomes for others with your regime. I continued to exercise and sweat everyday. I don't think it was a problem. I used Penguin CC because most of the women on here reported favorable results. Other brands seem to have positive results too. Perhaps others will chime in with experiences more similar to yours.
0 -
thanks. I am seriously now considering doing Penguin CC. I'm not getting cytoxin, but carboplatin. It can't hurt to try. I may look awful but the long term may be better than waiting for my hair to grow in. I'll see how long it lasts. I figure I can always cut it & get a wig if I change my mind, but I can't lose my hair and then change my mind & start the caps!!!! Where in NJ are you? North or South? I'm in Medford.
0 -
Ciao - Several ladies on here had TCH and still kept there hair. I have wavy hair that gets frizzy. You can see on my blog what it looks like air dried and blow dried as I have photos of before and after. I usually style my hair with Moroccan Oil and a special gel and then blow dry it. When doing cold caps mostly air dried it and put some organic gel on the longer parts. I also wore it pulled back in a low, loose pony tail a lot. As far as gray, I had it too. Not fun, but a bad hair day is far better than a no hair day any day! I would part my hair and cover the gray at the part with Colormark. I would then pull it back in a loose, low ponytail and then put in a thin, elastic hairband to hold the hair in place....this way the hair would not move and the gray would not be exposed elsewhere. Sometimes I wore the same ponytail and then put on a cute lightweight hat. Worked great for me. My hair does not tangle easy so I did not have issues with lots of tangles or knots in hair. I did use some conditioner on the length of my hair just so it would not tangle and I did fine. The decision is tough like all the decisions we make along the way with BC. I am very happy I used cold caps. My life moved on quick after I was done with treatment and I did not have to wait a year to have non cancer looking hair. I am personally happy with my decision. Having hair allowed me to go out and do normal things and not have the whole world know that I had cancer. I ran into people while I was in treatment and they never knew I was sick or getting chemo unless I chose to tell them. That was empowering during a time in which I felt powerless. I was able to spare my young son (age 4) from learning too young what cancer and chemo meant. He is 7 and still does not know what I went through. I will tell him when the time is right. For now he only knows me as "mom" that is healthy and active. He never saw "sick mommy". If you choose to use the caps....you will find support, advice and friendship here all the way through and after. Good luck!0 -
Ciaoginag - I am in Frenchtown, Northern NJ. I know Medford. My surgery is at HUP. I did chemo locally with dry ice and coolers. HUP will accommodate with private rooms and according to the Rapunzel Project, The Cancer Institute at Robert Wood Johnson, Hamilton – Hamilton, NJ, has the biometric freezer.
0 -
Hey ladies! I finished my final AC wed! Now I have a 3 week break til I start taxotere!
0 -
Dlove72 - enjoy the break! How did your hair hold up during AC?
0 -
Anyone know about using he caps with Perjerta?
I'm at the hospital helping a new user and she thinks yes? I hadn't heard that.
Any info ASAP would be great!
0 -
PatiMN- thank you! I need the break. And for AC so far, pretty well. My doctor and nurses were all shocked. Still nervous to see what taxotere will bring. But I heard that it's easier than ac.!
0 -
The Lady Gray - I don't think there's a definitive answer on Perjeta. One person here said she used her Perjeta infusion as part of her post-chemo 4 hours, but another thought Perjeta did induce hair loss. Hopefully one of those people will chime in soon!
Dlove72 - so glad to hear you've had success so far!
0 -
thanks PatiMN- hopefully it's all good.! Can't wait to be done with
0 -
My eye lashes and eye brows were so full, more then before. But now 5 months post chemo they seem to be thinning to less then before. My hair is still holding up well after cold cap, but I did have a huge bald spot on the whole back after 2nd session, and nothing could hide it, except a beanie. It grew back pretty fast, and blended with my other hair within about 3 months. I'm glad I used the cold caps! I'm taking biosilk and biotene for my hair, which seem to be working well. I dyed my hair after about 3 months with an ammonia free hair dye.
Warrior Woman, I would wait on the laser hair removal because I thought the same thing as you. I was growing peach fuzz on my nose, cheeks and neck, but I waxed it once, then tweezed the regrowth and it stayed gone. Btw....i'm a huge fan of laser, I've been doing it for years before the cancer, but It wasn't needed in this particular case.
0 -
Salina - Thanks! I am glad to be complaining about hair removal! Just a thought on the brows... My brows were thinning from age prior to chemo and I had my hairstylist dye my brows when she did my hair. It made a huge difference because it brought out all the fine light hairs that I didn't even know I had. My brows are gradually coming back in and I will be happy when the bald spots on my lashes finally disappear.
0 -
Hi everyone! I'm 17 days out of chemo #1. I've had very little shedding so far, and tmi, my pubic hair has been falling out for about 3 days. No real hair loss anywhere else. What the heck is that all about??? Is that a good sign, cap-wise, or is it still too soon to know anything?
Ladygrey - I'm getting perjeta with tch. I can't tell you much about my hair yet, being only 17 days out. Knock on wood, I have little to no shedding at this point. I'm praying it stays that way.
I was told by my oncologist that perjeta CAN cause hair loss in the same way chemo does, the rates are just lower. Not insignificantly lower in my opinion, I've read it can be as high as 60% in some cases.
What I've done to counteract a chance of issues with perjeta is to add the perjeta infusion to my cap wearing time as though it were part of chemo. It adds an extra 90 minutes of cap time for me, but my head's already frozen and it doesn't hurt to use the caps.
I saw an oncologist in denver who has had fantastic success with tch + p and cold caps with her patients!
0 -
warrior woman--thanks. HUP is great. I'm at Cooper.
I forgot I am using perjeta as well. I am starting Friday & am wondering if I should really go through all this. I seriously am going to look like I have a rat's nest on my head w/long grey roots. I should have gotten a hair cut at least, not to mention my hair dyed but that wouldnt help much 3 months from now anyway. If I am experiencing bald spots then I am going to say forget it. Guess I have to give it a chance & see how my hair reacts. I am preparing by having a wig ready if I do change my mind. Why is there so much hair kids after?
0 -
hi ladies. I'm not sure I'm having success. I'm on DD ACT and at day 24, 2 treatments in. I am shedding something fierce. Can't touch my head without hairs coming out. Still not noticeable to others. I have full head of hair but I don't think it will last. I've made my husband swear to tell me if I reach a point where it's ridiculous to hold on as the thinness or spots are so significant.
Taking clothes on or off seems to bring rash of loose strays from nowhere! Nt sure if there is a shave in my future this week. I'm scheduled for #3 Wednesday but May not need them at this rate!
Preparing for plan b. Trying to decide if I could possible go without a wig or how I'll feel in one.
Regardless I am feeling good today and smiling. I have made it through two with few side effects and for that I am grateful.
Enjoy the long holiday weekend everyone!
0 -
ACT is by far harder on your hair than TC. But most of mine stayed in. I always had enough that I could wear clip in extensions. And people said at least you didn't lose your hair! Mine was really good up until I started the taxol part. I think maybe if I had worn them more during the week it would have helped some. My hair actually started regrowing during the last two months of taxol.
0 -
Thanks, lbrewer. I think I'm emotionally preparing for the cold caps not working. I have four + days before infusion #3 and sense I'll know by then whether to continue or not. I'm glad I've tried but the amount of hair with any touch of my head is pretty significant. At this point, I feel I've done all I can to save hair and it's out of my control at this point. So we wait and try to find the bright side of things.
0 -
Kazzy - I did TC and not ACT so my experience is different. I did reach a point PFC where my hair was so thin that I had to wear it up and move it around to avoid showing my scalp. Essentially it looked like I had several parts that extended further down than they should have from the top of my head. I was not happy. A couple times my husband used a color marker to color my scalp. The good news is this horrid stage lasted weeks...not months. My new growth is hiding all my scalp from showing. I too was prepared with skull caps that I will now use for running in the winter time as I do not need them. Some women on here doing ACT did go with the wigs and that may happen. I just wanted you to know my experience with regrowth and how much of a difference it makes in filling in the bald spots.
0 -
hi everyone...
Question for a friend, she started on TCH and after her first treatment had a horrible reaction to the meds. Well they switched her chemo meds and now is on Abraxane weekly. She is cold capping but has had more shedding this week. Has anyone been on this regime and know anything about it and when she should hopefully stop shedding so much. She is so nervous that she will have no hair. She has 9 more treatments to go.
WW...how long did you shed for?
Thanks for any insight you all may have.
0 -
Lisa - I'm still shedding 2 mos. PFC and it seems most people to stop around 4 mos. It is very minimal. My BIG shed was day 18-30.
0 -
Abraxane is the same as taxol, but mixed with a different solvent (don't know if that's the right word) which doesn't cause the allergic reactions that taxol does. I had 12 weekly taxol and hardly shed any hair at all. I think your friend should do fine. Her current shedding may still be from the TCH - the 3weekly dose is harder on hair than the weekly dose.
0 -
mdg--I've read your blog so many times!! Thank you for your positive attitude and helpful advice. I too have young kids (two girls, 9 &6). They are very aware of my breast cancer and while I told them I may lose my hair this is one way I am hoping to not have to let them see me lose my hair. I start this Friday and am very nervous about the whole thing. I will check the board periodically to see what others have to say as well. Your hair looks great!!! Trying to stay positive.
0 -
I'm on TCHP (Taxotere, Carboplatin, Herceptin and Perjeta) and I had #4 of 6 doses last week. I got them to do the monoclonal antibodies after the cytotoxic agents to lessen the cold cap time; my tumor and enlarged lymph nodes have all diminished to the point where my MO says he can't feel them.
My shedding after the first round picked up a lot around day 18-21. After round 2 and 3 I had a lot of shedding a few days afterwards. This cycle the shedding seems less.
I lost a lot of hair over my ears and around the nape of my neck. I noticed that the gel is not as thick in the cold caps in this portion of the caps which makes me wonder if it is a design flaw or if perhaps the "brow bands" should be a standard part if the package. I also have a weird thin patch in an area by my regular part where the hair had gone gray sooner. Not sure what the difference was.
My hair is thinner over all and I have to wear it differently and can't style it as much but unless I tell them, folks don't know Im going though chemo. Even folks that do know me are amazed at how well I look. Keeping your hair does help retain a sense of wellness and it really shifts the experience of going through cancer treatment to be a more private affair .
Other adjustments I have done to my infusions to try to contain the cold cap wearing time include getting my blood work and MO visit the day before and then nudging the nurses to push the pharmacy to get the drug order filled more quickly. Otherwise I would be waiting 2-1/2-3 hours and it was hard to know when to start with cap changes.
I am using the BioOrganic shampoo and wash about once a week. I use a styling cream when it is wet and let it air dry for a little control.
At the very least I will have a head start on a full head of hair post chemo and I will have protected my follicles from the potential 3-6% chance of developing permanent alopecia quoted by the drug manufacturer and elsewhere. I can't wait to start growing my hair instead of treading water during this uniquely weird chemo time.
-Ann
P.S. - those worried about their gray showing should appreciate that your hair doesn't grow a lot during chemo. It does some but more slowly so the gray roots are a bit less of an issue.
0 -
Hi all! Well today is day 21 for me and I still have complete coverage although I've been shedding quite a bit the last few days. What I'm worried about is the itching. My scalp has really started itching and I'm worried that it means that I'm going to lose my hair?? It could just be dry too since I'm not using conditioner but I'm pretty worried. Is this normal? Any suggestions?
0 -
Missyjean - I'm in the same boat. While I've had a lot of shedding only one area above/in front of ear looks bare and I'm at day 26 on AC. The itch on the scalp is driving me crazy! I want to scratch and scrub so badly. I actually thought it might be build up from not shampooing often and when I do, it's very gently touches to the scalp.
Would welcome feedback from past users.
Glad to hear you have complete coverage still. Good news.
0 -
kazzy - you might be getting cradle cap - build up on the scalp. I had little white flakes and itching. I mixed a tiny amount of apple cider vinegar (oh maybe a tsp only?) into my shampoo/water mixture when I washed - really helped me.
0 -
Any past users ever heard of Jason's thin to thick shampoo? I was told it helps with hair loss. Any input would be great! I am four weeks PFC and do not want to do anything to mess up my hard work!!
It seems like I am losing more now than ever!! Is this normal?
Thanks!
0 -
kazzy and missy, we're all very close in treatment schedules. I'm at day 20 today. I've noticed serious dryness and believe it to be cradle cap. If I scratch it at all it comes off in huge flakes, WAY larger than a dandruff flake. The itching makes me nuts, and then scares me because I think it means my hair is about to fall out. I have also started shedding today. I've been watching carefully the last few weeks and have had very minimal shedding, but today it's kicked into high gear. I'm just trying to stay calm. I have my eyebrows and shaved my legs this morning. I am losing pubic hair though. For like 5 days now. It will just come right out if pulled at all. I don't know why there and nowhere else, totally confusing to me.
0 -
Hang in there, cappers! The itching and tingly scalp are normal and nearly all of us experienced them at some point. Remember that non cappers generally lose all their hair between days 14-21, so if you make it that far, the caps are working. As for the flaking scalp, I also had that issue - large thick flakes. I took the advice to add a bit of apple cider vinegar to my shampoo/water mixture and after a couple of weeks, it was not a problem. I used about 1/2 capful of organic ACV with each shampoo. I did lose hair over my ears and at the nape of my neck, but it started growing back during treatment and is now almost 6" long and likes to curl while the rest of my hair is straight. Stay calm, we all went through the panic stage where we were sure we were going to shed out and be the person the caps didn't work for. I remember The Lady Grey telling me at that time, 'You are not a special snowflake. The caps will work because they work.' I kept that as my mantra and each day tried to focus on what was left on my head vs. what I was losing. I know it's hard to believe at this time, but it really will be over before you know it and the shedding will eventually stop and you'll have a lot better starting point for growing back your hair than losing it all...I'm sending you all positive thoughts!
0
