Cold Caps Users Past and Present, to Save Hair
Comments
-
Curly, how are you these days?
0 -
AmyQ - I think she was joking about scalp mets, a lot of us do on here, because they are highly unlikely to occur. Breast cancer mets are well studied and show up in known areas, the scalp is not one of them.
I took part in a non-clinical cold caps trial at my center which has had more than 40 women use cold caps. Basically those on T/C do well and those on ACT do less well as it's a very harsh regime.
I had four rounds of T/C and while I had a lot of shedding and my hair thinned out about 30% overall, I did keep it which was such a good feeling. I had lots to start with and some of the loss was self-caused because I stupidly lightened my roots six days before starting chemo. Increadibly dumb in hindsight, Sigh. Lots of breakage about two to four months later at the point between my lightened hair and natural hair so residual chemo reacted with the freshly bleached hair.
Right now, I have a huge crop of new hair filling in all over my head. It started growing not long after chemo ended and is about 4 - 5 inches long. It stuck up in silly tufts like a cowlick for a while until it got long enough to lie down. People do not believe me when I tell them I have gone through chemo as I do not look like their image of a cancer patient - no wig, no turban, no bald head or short hair. I just love that!
Best of luck! Stick with it and you will be fine.
0 -
My onc told me the chemo drugs for breast cancer do not go to the brain so he had no problem with mets. I am 4 mos PFC and hair is filling in. I am thrilled I found this group that lead me to cold caps.
0 -
Ships girl - thanks for checking in. Feeling pretty good...managed to paint my front and back doors and did some gardening in front and back. That felt good, but did tire me out. Have been doing well overall. Hair is definitely much thinner, especially in the back, like everyone else experiences. My sweet boys tell me it looks normal and I don't think most people can tell. I am super grateful to still have my hair, but honestly it is starting to get me down a little. Had a little pity party yesterday. Took my kids to the park to enjoy the nice weather and just watched everyone go about their normal lives and just felt that sad feeling....why do I have to go through this while everyone else just has a normal life. I just want my life back. I have managed to stay pretty positive most days, but sometimes the sadness creeps in. How are you doing?
Curly0 -
Yes...I was being sarcastic about the scalp mets!
0 -
mdg, I must have read your blog 20 times before starting chemo/cold caps! Thank you! I had a big shed after treatment #2 that was freaky but you'd never know I lost any looking at my head. Have i mentioned how much I love Colormark??
Treatment #3 of 4 coming up in 2 weeks...0 -
SusieQ - glad it helped. I also LOVED Colormark. Could not live without it....dark hair with gray roots....YUCK!
0 -
Not been on this thread for a while but wanted to say my hair is growing thick and fast. The only trouble is I have to style it everyday as I had so many bald patches. So happy I had cold cap now but at the time I didn't. I've had 4 hair trims and still my hair is shoulder length.
Good luck to all0 -
Hi Curly, I get it about the sadness.
A friend sent me this (I have no idea to upload the beautiful image that came with it): "Whatever is happening in your life, don't pre-occupy yourself with the question WHY? But rather ponder more on to WHERE these events will be bringing you. Know you are being led to somewhere beautiful, beyond your present harsh reality. Once you get to the WHERE, then you'll know the WHY. Trust the process" -unknown
She intended it as encouragement (and indeed it was) but for me, it was also a wake-up call. I had been going down the "why me" road. I saw that life isn't easy for anyone, and challenges come in different forms. Mine (ours) just took this form. But there is strength and grace to be gained through adversity. It helped me return to taking it one step at a time. I hope it helps you too.
All that being said, I'm about to start #2 (tomorrow) and we'll see! My MO is giving me more anti-naus meds and also Atavin to help relax me. I plan to talk with my helpers and see if I can hand over control of timing etc to them and hopefully that will make it easier to handle.
No sign of hair loss yet. It's day 14 so it's early
0 -
Curly, we all have thoughts like that. Sometimes I feel as though prior to my diagnosis, I used to see so many women with their caps and scarves and realize they were going through chemo. And now that I am in that place, I feel I don't see anyone. But the other day when I was at the ball park with my son, I looked around and thought "Again! No one else is going through this. But then I thought, perhaps they are and looking at me with the same thought because I still have my hair and do not look like a cancer patient" Even my own family forgets at times because as they say "I look normal!" And pity parties are part of our norm right now.
Having said all of that, I go in next Wednesday for my 4th and final treatment. I am so excited to put this part behind me. I would say that I still have 90% of my hair. I haven't lost any on the nape of my neck or around my ears. It has thinned some. However, I've come to the conclusion that I am losing the same amount of hair as the normal person, it's just not growing right now so I am not replacing what I've lost. However, not having to shave with this warmer weather is a bonus. I figure that's my reward for having to endure the chemo.
0 -
Hi everyone, just checking in. I'm 14 days out from my first chemo and struggling to remain calm about the hair situation. I keep obsessing- Will the caps work?- Should I go buy a wig just in case? Every little itch in my head has me convinced that it's about to fall out. I guess I will know in about a week. I just keep repeating a phrase used by someone on this forum (can't remember who). "You are not a special snowflake".
0 -
jc254 - I know that many say you have to wait until day 21, but I had a lot of people tell me with our chemo day 14 is the telling point. So when I still had my hair on day 14, I took a small sigh of relief. They will work if you were diligent about the timing and temperature! Keep the faith (easier said than done) but many of us have been there with the same doubt and we came out successful!
0 -
It is so difficult when the shedding does start. I know as the treatments came and went I thought I would have no hair at the end. It thinned a lot for me but I have hair and 3 months pcc it continues to grow and fill in. I accepted that my thick soft hair is gone for now but I have normal looking hair to my coworkers who have no idea why I took 4 months medical leave. Stay positive. We support each other.
0 -
jc254 I'm with you! I'm on day 28 but the stress gets a little lower as time goes on. I was happy to hit milestones like day 14 and day 21. The shedding is a little freaky this week but I keep trying to focus on what's on my head rather than what's not. Or I think of a dog or cat that sheds like crazy but always has a full coat! I also found comfort reading this board and finding pretty much no one who declared the caps a complete failure for her. Keep the faith and I'll try to do the same.
. We will get there!
Jlow - so cool you're almost done with chemo!!!0 -
Hi Curly, I hear you- I think we all wonder "why" sometimes, and no one knows. But sometimes I am so overwhelmed with happiness that I am still here (and lymph nodes were clean after chemo) that I cry from that. It is just an emaotional roller coaster we are all on and it is okay, normal to be up and down.
I also wanted to say that now two months PFC i am still treating my hair gently and I have a tissue expander and a port for my continuing herceptin, but aside from those things that no one needs to know about if I dont tell them, life is indeed pretty normal. Back to the crazy pace, except for eating better, taking daily turmeric capsues, and getting more sleep- good things that have come out of this experience!
And yes - to the day 14-ish girls, around day 21 I thought I would lose all my hair too - major heartbreaking sheds- but I didnt and it honestly looks pretty normal now. I am just thrilled with the cold caps. Try not to let the stress overwhelm you, it will be okay.0 -
Thank you to all of you lovely ladies who posted words of support to me. I am so grateful for this thread. I am day 36 today and still with hair. I do miss my thick, lovely hair but I know it looks fine to everyone else. Today is a hair wash day, which I am dreading, as it seems to shed more on those days. I haven't figured out the shed pattern other than that. Had another fair sized shed the other day, which added to the sadness. Does anyone's head itch? Some days...ugh...too much itch!
But today is a spring concert for one son and I will focus on that. The other son is home sick and we got to play together as a result, and I am getting good at appreciating those lovely moments instead of dwelling on sad thoughts. I have used my hair dryer on cool to fluff up my hair and that helps, both in how it looks and in feeling like I am styling my hair similar to how I would pre chemo. No one knows what I am going through, other than close friends and family and I really like that...thanks to pcc's.
Yesterday I went to check out hair extensions. They have to order in product to match my hair, so I will pick those up next week, which I am hoping will make me feel better. Don't think I realized how thick my hair was until now.
Ships girl - good luck today. Hope this round is easier for you. I go for #3 of 6 next Thursday.
Xo
Curly0 -
Here is the cold caps story (part of it) featured on The Doctors show today!
0 -
Thanks for the reminder...Ijust set TIVO! Don't want to miss it.
0 -
curly123 - (((hugs))) so sorry you sometimes feel low. Have courage, your hair will stay. Part of the reason it looks thinner simply is because you are not able to clean it as effectively as you used to and it clings together even though you may not realize it. I had many lowish moments when I looked at my formerly luxuriant hair and saw it looking limp, thinner and a general mess. Basically it was dirty even after an extra gentle cold water shampoo.
Believe me that when your chemo is over and you are allowed to wash more normally you will discover to your delight that you actually have a lot more hair than you thought you did. I did some research and about two weeks to a month after my last chemo I used Nioxin shampoo and conditioner #4 for chemically treated thinning hair and it did an amazing job. I used cold water and treated my hair gently, but worked my fingers through it gingerly at the base to help clean my scalp thoroughly. My hair looked so much better, thicker and healthier after that one shampoo and was back to feeling and looking normal after the second one a few days later.
As for shedding after the first chemo - 14 days may be too early to see any. I just looked at my notes and saw that I didn't notice any hair falling out more than normal until the 18th - 20th days. It became heavier right after my second chemo session on the 21st day, with the heaviest shedding being just before my third chemo three weeks later. I was nervous until it hit me that it was just "shedding" uniformly, probably not more than 200 hairs a day out of the 100,000 on my head. It was not coming out in handfuls leaving bald spots as people who were not using cold caps had experienced. I began to relax because I realized the cold caps were working and my hair would be staying
sciencegirl - How much Tumeric are you taking? I had heard it was good for us, but didn't know much more. I would appreciate whatever you could tell us. Thanx!
0 -
Thank you hortense. I know we all go through the ups and downs, which is why it is so helpful to talk to you guys who get it. Was hoping my big shed around #2 was THE big shed....ugh....does everyone have a big shed around #3? Also, is there any reason you can't use the shampoo you mention during all of this? You are exactly right about the yucky hair sticking to each other...the texture is gross. Everyday I remind myself I have hair and that most people still don't know and that is a very good thing. Feels like forever and I have only been through 2 rounds so far.
Dancetrancer - I just read your bio. How awful for you re mixed up and missed diagnosis! Truly awful. I feel nervous as I have pain/discomfort on my 'good' side, which shows negative for any issues. That is what they told me years ago on the bad side, so needless to say, I don't trust them and am stressing right now about whether something else is going on that they haven't caught. I have called my dr a few times now, so to ease my mind, she has booked me another ultrasound next week. Lets see what happens. You really do have to be your own advocate. We are just numbers to them.
Curly0 -
Just watched the video clips from "The Doctors" and was happy to see Tricia Byrnes telling her story. Back in 2011, I watched her video clip on www.rapunzelproject.org when I was getting ready to start using cold caps. I was so nervous and so scared. I decided to email her, and she gave me her number. When I called she gave me many tips and such hope.
I encourage all newbies to check out the videos on Rapunzel's website. They are very encouraging.
Thank you Dance, for posting the link!
0 -
Hello everyone may I join in? I'm being forced into a chemo crash course of sorts and I'm worried about hair loss. It appears I'll have 4 doses of TC which came as quite a surprise. Pre-surgery docs saw no node involvement and a tumor of about 1.5 cm. But I have lobular carcinoma and that sucker never shows up right on scans. So, here I am.
Thank you all for sharing. I'm calling the rep in the Atlanta area tomorrow. Anyone here doing PCC's in Georgia? Is the rep helpful? Has anyone done the cold mittens/socks to protect nail beds?
And Hortense I'll just throw my .02 in about Tumeric. I saw a nutritionist last week and I took in all my supplements. I showed that I was taking 1 tumeric capsule a day (about 400mg) and was told that was great - but it would be better if I took two AND added the spice form occasionally to my food. I'm average height and weight with no known food allergies.
Kay0 -
Curly - thanks for the empathy - it was a rough, rough time for me with all that misdiagnosis crap and then different medical opinions on chemo or no chemo...ugggh. Glad all those tough decisions are behind me and hope it stays that way! Hope all turns out fine with your US. I totally agree we have to be our own advocates. Completely!
Welcome Kay! I did PCC's in Alabama, but my rep was from Michigan if I recall correctly. I just used regular ice in baggies (in little $1 store coolers for each extremity to manage leaks) for my nails.
0 -
Welcome Kay! I did caps in MI but now I live in Chicago. Where are you in Georgia? Glad you found our group! I did TCx4 and I had hair after! You can do this!
0 -
Thanks for posting the link to the Doctor's program. I wasn't able to watch it on TV because of the news coverage on the 8,000 acre fire burning in Camarillo, CA. The oncologist Dr. Piro did an excellent job explaining how the caps work! I'll bet the Penguin company will be bombarded with calls! I hope they will take this opportunity to invest in a Marketing and Operations managment team.
I've updated information and changed the address of my website http://penguincoldcap.wix.com/help
I've included information for 4 of the cold cap manufacture'rs, a supply list and hair care. Dry ice and how to pack the coolers coming soon!
0 -
Welcome Kay! I had 6 rounds of TCH and kept my hair. Just follow the protocol and you will keep yours too.
Makingway, Love your new website! It would be great if you put that link in your signature.
0 -
Makingway - the website looks great! If you need any more pictures, let me know. If you want to put a link to my blog feel free. I hope others find out about this before chemo.....I am glad I did!
0 -
Thank you all so much for the welcome -
mdg - I'm in the Atlanta area and just put in a call to the rep - hoping to hear back soon.
dancetrance - your hair in your avi looks great! so encouraging
laura - i will make sure i follow the protocol and keep my fingers crossed!
0 -
Hello,
I am trying to get a bit of a crash course in cold caps before my chemo. I am scheduled for 4 rounds of TC. Located in NJ and am going to the Cancer Institute of NJ at Hamilton.
I have 2 questions and I am hoping you wonderful ladies can help.
has anyone used Advance Cold Cap Services ?
I am Afican American and am due for a touch up relaxer about 2 weeks before chemo. I would like to keep the appt (I have a shower to go to and it may be the last thing I loook "good" for, so to speak), have the treatment and get a few inches taken off- right now my hair is past shoulder length and I was going to get cut between chin and shoulder. Does anyone think 2 weeks is not enough time between the chemicals and the chemo? I get my roots straightened every 3 months (4 times a year) so I am not very rough on my hair.
0 -
Happy Spring Morning! Yesterday was Chemo #2 and it couldn't have been more different from #1. My brother was there to help because it had been too much for my mother the first time. He just had it all handled. Between the two of them they had it down, I didn't have to watch the clock or worry at all.
Plus I had Atavin as someone recommended (I'm sorry, I don't remember who gave me the great advice to get relaxed), and I also had Emend for the nausea. We sailed through infusion, came home and set up the home version, ordered pizza and relaxed. I didn't puke once!!! I was just very very tired and couldn't wait to go to bed and sleep.
This morning feels fine too. I know the rough days are still to come, but I'm not nearly as worried about those as I was about infusion and cap day.
New side effect though. My bladder capacity seems diminished suddenly and my "urgency" warning sign less strong. I woke up in the night to go and have suddenly become one of those people on the commercials who "trickle" a little. Never happened in my life until this morning. Has this happened to anyone else?
Wishing you all a good day.... and Go Canucks
0
