Cold Caps Users Past and Present, to Save Hair
Comments
-
Hello, Misstic.
What is the name of the cold cap your using, if you don't mind me asking.
I wonder if the difference for the cap time has something to do with the infusion time.
My total Taxol infusion lasts about 3 hours. And your infusion is only 1 hour, but 10 minutes does
seem kinda quick.
But, sorry I do not know for sure. Heck, I have only used them 3 times, so I am VERY far
from being an expert..lol
I wanted to let you know that I had a few mishaps the first time I used the caps.
The first one was, I was supposed to be using the caps at -22 degrees F, but I wasn't.
I was using them at about -15 degrees F. This wasn't just 1 or 2 caps, it was pretty much all of them.
I know it isn't a big difference, but I had no idea what impact this would cause, if any.
Also, after my infusion I was supposed to keep the caps on for 4 hours. Well, I was SO tired from the Benedryl
when I got home, I only kept them on for 3 hours.
Thank God everything seems to be working out in spite of the above.
I wish you luck!
0 -
I just had my last chemo treatment and am proud to say I have a full head of hair!!
also Lynda - I had a similar problem as you on my first infusion - caps didn't get cold enough for pretty much the entire day.
0 -
eloqui- CONGRATS on your last chemo and that you still have hair! It gives all of us hope! Can you tell us how much you would estimate you lost overall?
Congrats again!
0 -
CONGRATULATIONS, eloqui!!!!!!!!!!!!!!!!
Great to hear your finished. I am sure it wasn't an easy road.
Thanks so much for taking the time to let us know about the hair too.
Stay healthy and well :-)
0 -
Congrats Eloqui, I was very concerned about the temps of the caps that first day. Did you do anything different the next three times?
I really need to make sure this doesn't happen again.
0 -
misstic
Taxol is easier on the hair. Try following the protocol we use for taking care of your hair. Use the straps and maybe suggest the nurses lower the temperature. I'm doing taxol 12 x weekly, as well. I was advised to wear the caps four hours post chemo. Then again, a new system is being tested here in the States and it does not have the strict guidelines we follow. Good luck and let us know how you are doing along the way.
0 -
DaniellaD - Liquid silica is more easily absorbed and used by our bodies than powdered forms. I found and posted a clinical study done with it that showed how effective it was, but I have no idea how far back on this thread that study would be. Sorry
misstic - I was told to have my Penguin Cold caps at - 32º C, which is about -28º F. If your's are not that cold, you might ask if you can bring dry ice to get them colder.
Good luck to everyone capping.
0 -
SueBe - my first time the first 3 caps were not quite cold enough. I now pack the caps closer to 4 hours before infusion. I also get 90 lbs of ice...because I wear all 8 caps twice...so need to re freeze. My fiancé puts the ones that need to be reapplied first on the bottom surrounded by the dry ice.
I am happy to report...caps were below the -32C...throughout my last 2 treatments!
0 -
Thank you!! I would say I lost about 40 percent of my hair. It sounds like a lot but I am so glad I cold capped and think it was completely worth it. Originally it was extremely thick, so now it is thinner but no bald patches. Nobody notices the difference except for me. I feel like i had a ton of shedding which freaked me out all through chemo. Maybe the thicker your hair is the more falls out . They say the older hair follicles fall out and the younger ones in the shedding cycle stay. Anyway I was able to work full time, be a bridesmaid in a wedding, go to the gym, etc through chemo without people knowing about the cancer treatments. Also now I don't have to wait months for my hair to grow back.
Regarding caps not getting cold enough, we eventually had to put them in freezer bags because they wouldn't get to the recommended temp while in the provided boxes. I used 100 lb of dry ice pellets, distributed in layers inside of plastic bags which worked very well. Just make sure to check that they aren't too cold 20 minutes or so in advance to give yourself time to warm them up if needed.
Post chemo, did anyone try things for hair growth? how long did you wait to begin? I may try Nioxin and latisse.
0 -
Daniella D, for the velcro not sticking try wiping the fuzzy surface of the cold cap with rubbing alcohol and letting dry. Worked for us! Good luck
0 -
Good Morning Cold cap sisters! DaniellaD starts her chemo today- I'm a believer in positive thinking. May I ask that we take a moment to send her a healing thought, prayer or good energy her way...she has a long day ahead of her.
May your day be as smooth as possible Daniella! We are thinking of you...
0 -
Good luck in your Taxol tx Daniella! It's a scary day, but you'll soon find you're groove and it will be over. You will feel so much better. In regards to chemo: think..."the enemy of my enemy is my friend." I can't wait for my second AC treatment next week. Really. Good luck to you today. Drink water! Lots!
Hugs.
0 -
I'm starting my first chemo (TC) & cold cap today. Wish me luck.
0 -
good luck HockeyCat!!! And good luck Daniella!!!
0 -
Good luck to HockeyCat and Daniella!
(((Hugs))) and "warm" thoughts! :-)
0 -
lyndawerner, thank you for you testimony and advices. If I understand correctly, you are still in treatment. So after you first misuse, your hair still stay strong on your head. Great news! It gives me hope.
DaniellaD, I read that your first chemo session is today. My thoughts are towards you.
Hortense, I think the caps the hospital put on my head are around -24°C. The problem was, first, I was in a hot flash when I started to wear it (I was in a middle of the cortisone IV). Second, there were no straps to hold it against the scalp.I put a pic of the cap for understanding.
0 -
HockeyCat- I didn't realize you were starting today as well! sending healing wishes to you too!
All the best!!!!
0 -
Good luck ladies with your first chemo and cold caps routine!!!
0 -
Misstic - those are very different than the Penguin Cold Caps...
Our are like Gel Helmuts..
It look like you can buy velcro straps an use around head. I bought these to use with the penguin cold caps....but you dont need material to attach it to....
http://www.amazon.com/gp/product/B00006IC2R/ref=oh_aui_detailpage_o06_s02?ie=UTF8&psc=1
0 -
daniellaD--Thanks for your suggestions. are those sprays ok to use? I just don't want to have come all this way and use a product that takes all my hair off!!
mdg--I know! I cannot believe it and now I'm trying to decide on which surgery to have. I am so confused and nervous. My surgeon is great and tells me either one will be fine and that there is no wrong answer. However, I just don't want to have to go throughout his again. I understand that if the cancer comes back somewhere else. But they did see another spot on an mri that disappeared with chemo, so with that being in another area of the breast, I'm a bit nervous that may comes back in so many years---IF it was cancer. they weren't sure. Didn't biopsy it b/c I had just gone through mri's and biopsy for the original tumors. Any advice would be great!! And I do wear a loose barrette in my hair. I'm so nervous to use a headband!
0 -
Ciaogina - I had to get a mastectomy because I had 4cm of DCIS (no invasive BC going into surgery)....and my breast was extremely small....so would have been deformed with a lumpectomy. Since I had to get a mastectomy on one side and would have needed plastic surgery on the other breast to match...I opted for bilateral mastectomy. Plus I had hoped I could get pregnant in a yr so didnt want to worry about not getting mammograms during pregnancy/breastfeeding.... That all went down the drain when the final pathology reported .6cm of IDC.....chemo and no pregnancy for me.
That being said, a study that just came out today stated women who get a lumpectomy and get treated with Chemo/Radiation have just about the same overall survival rate to women who opt for mastectomies....the difference is negligible. So it really becomes a personal choice.
I had tiny itty bitty boobies.....so was not attached to them. I will come out with a lot nicer breasts (i hope) when all is done. That is...if my scars fade....which I am told they will. I will say I was in a lot of pain immediately after my BMX surgery....but was back at work in 2 weeks.
Another decision for me was Radiation....I work....and could not be bothered with daily or even weekly Radiation Sessions.
There isnt a right or wrong answer....it is what you are comfortable with.
0 -
Thank you ladies! I just finished the infusions. 4 more hours here for the cold caps. The first cap was so cold and it was hard... But It got better and tolerable later. PCC therapist is very nice and a great teacher. My husband is learning how to put on the caps!
Beautiful weather outside. I'm enjoying the view.
0 -
Hi, ciaogina :-)
When I finish chemo, I plan on having a double mastectomy. My Mom had breast cancer 3 different times in both breasts.
First, they did a lumpectomy, then a mastectomy. Then, low and behold the cancer came back in her other breast. I definitely do not want to go through all that. I also do not want my family to have to deal with that.
It would be so much easier to just go with the lumpectomy, but I keep reminding myself this is a better choice for the long run.
And, hopefully, I will have a lot less worry down the road because of it. Only time will tell.
I wish you luck in making the right decision for you.
It is a tough one! I have gone back and fourth in my head about it at least 1 thousand times.
PS. Like Jennliza, I am not attached to my boobies..Not at all! Kinda looking forward to having nice perky ones..LOL
0 -
Beautiful view HockeyCat!!
It sounds like things went well for you today...That is awesome and I am happy for you :-)
I hope it continues.
0 -
I hope all went well with the new cold cappers today! Sending "warm and tropical" thoughts your way:)0 -
Daniella and HockeyCat, I was thinking of you both today and hoping all went well and that you are now comfortably resting after a long (and cold!) day. Remember to stay very hydrated and move around as much as you are able to, that will really help flush everything out of your system. I look forward to hearing how you are doing, here's wishing you minimal side effects
Eloqui - congratulations, you are pfc!!! Awesome!!!
0 -
mdg, thank you for sending us warm thoughts. I used panty liners to cover my ears and forehead as our therapist suggested. It worked! We are on our own next round, so we need to cut more liners to fit to my hairlines and ears. Thank you so much for sharing those tips.
hope49, thank you for thinking of us this day. I was very nervous last night and couldn't sleep. But once I got through the first one, I feel more confident that I can get through the rest of the treatments. I haven't had any side effects except for dry mouth. I don't have metal taste in my month yet. I'm drinking lots of water today. Hope I get to sleep well tonight.
0 -
Dear Cappies,
I was low after the steroids wore off, tummy troubles. Finally feeling better here on day nine post treatment number one. I am interested in the earlier posted question about cap temp. Second cycle of capping, towards the end of my day, caps were not as cold. I know we are told to replace them in the boxes and cycle through the ice chests, but has anyone just kept them in sturdy freezer bags, the two gallon size? Would like to keep that temp consistent.
Also pleased to hear about those who requested having herceptin as the last drug infused. I was wondering about that and will ask my MO this week about getting that switched out. I am getting taxotere, herceptin, perjeta.
Not a cap question, but did any get told they had neutropenia? Hoping mine will not delay treatments.
Thanks for all the good questions, answers, discussion. You women rock!
Jeni
0 -
ciogina-Here's the link to the study
Hockeycat-That's a nice facility in Santa Monica, with a great view! Been there several times helping women with the cold caps until the new PCC rep came onboard, hired her own helpers to ensure she could keep track of her commissions. I've been told by 3 different cold cap users that they have been forced to use the Rep's helpers or they don't get the caps! Such a shame that the Penguin company let this happen.
0 -
makingway - I like that facility. One room with the freezers had a view of building, but other two have a nice view. I had no idea about what PCC rep did! She didn't force me to use her helpers though. But I didn't know where else to find someone to help us on the first day...
0
