Cold Caps Users Past and Present, to Save Hair
Comments
-
Do you have to send Penguin Cold Caps money before they will actually talk to you and tell you all of the details? What hair products did you all use during treatment? I have natural curl in my hair but it is not pretty with out some help with heat. Could you all wear any types of hats or loose ponytails during treatment? I just have so many questions, thank you so much for sharing your knowledge!
0 -
I do not have curly hair so I will leave that to others here, but any heat during and for a period after chemo is a no/no
I think it is important to understand that the caps keep you from having to start over with no hair but you should be prepared to have to 'just deal with it' for a bit.
My thick, straight hair is now not so thick, is very dry.and has breakage and I can't do much about it since no teasing (yes I am from Texas 
) and no devices that use heat.That being said, those who know me are amazed at how good I look and those who don't have no idea I have been in chemo.... I am guessing they are just wondering why I didn't bother to fix my hair that day.
Now, THAT BEING SAID, for me it was totally, TOTTALY worth it! Good luck with whatever you decide
Stephanie
0 -
I still have to get Herceptin infused every 3 weeks until EOY (damn Her2+!!!!!)
Any thoughts from past cappers on how Herceptin affected your hair and regrowth?
Thanks!
0 -
Texas. congratulations. I love "I'm finished" posts. It takes some time to fully recover physically from chemo but keeping your hair helps enormously with the emotional recovery. You get to skip the "when will my hair grow back" stage which I imagine is pretty darn depressing.
3time, Penguin has distributors in the United States and you can certainly speak to one of them before ordering. Geralyn was my rep, she's very nice and a former cold cap user herself. I will try to find her phone number. If you use cold caps, you have to be prepared for some bad hair days- but remember, a bad hair day is better than a no hair day!
0 -
Congrats Texas!
WW, you look amazing - I don't see any difference between the before/after! And I loved your video!
0 -
3 time - my hair is wavy/frizzy on it's own and I usually blow dry it straight. I had to let it go through/after chemo and just let it do what it wanted to do. It was not so pretty, but better than being bald. I did wear loose pony tails and a few cute hats. I also wore some headbands. I am sure you have already checked out my blog by now....if not, I have photos on there. I also worked with Geralyn. I even met her in person. She is super nice and she will answer your questions. You can do this!!!
0 -
Congratulations Texas-wishing you the best.
0 -
3time,
Geralyn at PCC will answer any questions you have and will be honest about what to expect on your protocol and with your hair type. I'd recommend reaching out to her.
I am re-taking my laundry room fridge back this week and shipping these suckers back to Geralyn. I will say prayers over each one cap before packing it up.... who knows 3time, you just might be the recepient of these caps and prayers.
Best of luck to you dear!
Stephanie
0 -
Warrior woman - your hair looks fantastic! If I hadn't seen pictures of your hair bags I would never have known you were missing any!
One Texas Day - I had Herceptin too. My hair grew throughout, but there was a very noticeable increase in growth once I finished Herceptin last September. I could readily tell because during Herceptin I only needed to have my hair colored every 5-6 weeks, and afterwards I was back to my regular 4 week schedule.
0 -
Hello everyone - I've posted on here a couple of times but thought I'd let you know that I am the one in the video for the DigniCap that was aired last week. So if anyone has any questions, please feel free to ask!
Here is the link:
0 -
Good for you, Anmore. I remember thinking how pretty your hair is when I watched the video.
Cold Caps are in route to Geralyn! Yeeehaaa!
0 -
WW - thanks so much! And thank you for sharing all of your posts. Congrats on being done!!
0 -
Great video anmore! Wishing you success!!!
0 -
dancetrancer - thank you!!!
0 -
Thank you for spreading the word, anmore. You are helping more people than you know.
0 -
Thank you, gilded cage.
0 -
Congrats Texas and Warrior on being done. Keep us posted on any post-chemo shedding. Fingers crossed that it's minimal to none.
My fourth and final round is next Thursday, April 3. I've had two major sheds—days 17-23 and days 45-51. There are definitely some bald spots on the sides and top, but I can cover those up with a headband or some careful combing. I did two rounds of IVF right before chemo, and even though my doctor kept my hormone levels low, my nurse case manager thinks that might have led to some additional hair loss.
For anyone who's not having success w/ moleskin or pantyliners to protect your ears (I just couldn't get either to stay on), Vaseline works really well. I put a thin layer on each ear pre-capping and then reapplied it halfway through. I had no frostbite or redness.
0 -
WW. Congrats on ending chemo! You don't look different at all!
Texas. Congrats to you too. I'm on Herceptin. 3 more tx to go. My hair is thin and dry but only I know that it's different. It grew on chemo and continues to grow on Herceptin. I think my undergrowth is about the same as it was 5 months Pfc after ACT.
3time. My hair was thick and curly. Now it's thin and barely holds a curl. The diffuser does nothing but frizz my hair. It looks good. It's just different. I use derm organics shampoo and conditioner. I do not use hairspray or other styling products and minimal washing still 5 months Pfc but I now use heat. I can get some curl with an iron or curlers but they don't stay. I don't need to blow dry it dries so quickly. I did not love my hair on chemo but I managed to look presentable. All this said I look pretty good.
0 -
I just posted two new threads, each one about the Dignicap clinical trial. One under "Not Diagnosed but Worried", as that is where many people start their search for information, and the other under "Help Me Get Through Treatment" which is where this Cold Cap thread is located. I hope that women who might find the information in them useful may see them, and also that more may sign up for the trial so that it will be successful in proving that scalp cooling works.
0 -
Good idea Hortense. The clinical trial is a great opportunity for women who live near the testing locations. Do you think they're having problems getting enough trial participants?
0 -
Good idea Hortense. jc254 I don't think they'll have any problem recruiting participants for the study. I'm still waiting for a call back.
mazie-The IVF treatment definitely does influence more shedding.
0 -
jc254 - I think they might be having trouble getting people as last fall there were only 8 in the NYC program at Weill Cornell and I know that they were hoping more would sign up. I suspect few women and their doctors are even aware that this hair saving trial is taking place. I am going to see my doctor there in mid-April so will find out then. I missed the symposium it sponsored last month where I am certain the study was mentioned.
The locations that these trials are taking place in are so easily accessible that more could sign up. I pricelined hotels when I decided to go to NYC to have chemo and it wasn't wildly expensive. Staying in a hotel made going for chemo easy and I felt fine as we drove home afterwards.
0 -
I bet it is far less expensive to commute to NYC and stay in a hotel than to rent caps and pay for dry ice and all the incidentals. Simply learning that you need chemo is so overwhelming that getting it together to enroll in a clinical trial rather than showing up at your local cancer center is unlikely.
One week PFC and the usual minimal daily shedding continues. I keep looking for signs of regrowth and so far nothing. I placed my anti-aging doc on notice. She has her work cut out for her.
0 -
most interested in learning more. Had hope trial would be available in Chicago and disappointed it isn't. Would like to consider the options before I start treatment in next few weeks.
0 -
I went to my breast surgeon today, and she said that one of her patients saw the news regarding the DigniCap trial, and she is signing up for it. So great!
It's day 14, and I am having some shedding. It's not too much but definitely more than usual. I will report back on hair washing day.
0 -
WW - Yes, it probably is less expensive to stay at hotels (depending on the hotels) and take part in the trial than it is to rent cold caps and buy all of the items needed to use them. It will certainly be easier than having to get the caps and related materials, organize or pay for helpers and switch out cold caps every 30 minutes. I changed doctors and hospitals in order to use cold caps, as well as stayed in hotels, so it's reasonable to me to think that if they hear about it in time, some might switch chemo centers to take part in the trials.
0 -
For anyone looking to do chemo/treatment in NYC, you don't have to pay for a hotel! Hope Lodge at the American Cancer Society offers FREE housing for cancer patients undergoing treatment in NYC. Your doctor has to refer you and set it up. I stayed there for 10 days last July after one of my reconstruction surgeries. It is FABULOUS and an amazing, healing place. I was ever so grateful.
0 -
Kelly - If you're not participating in a trial and you want to use the caps, you can purchase or rent them. Many of us used the Penguin Cold Caps. Their website will give you much of the information you need to get started.
Depending on how one is feeling, a trip to NYC can be made enjoyable. I did two shows during chemo. Going to the theater is one of the few things I could muster the energy for. I saw Ethan Hawk play Hamlet and I saw Phantom for the second time. It was cool as I saw Phantom when it first came out 25 years ago.
Yesterday I went to my first yoga class and loved it. The class is for cancer patients. Amazingly, it is close to my house.
0 -
Has anyone used the Elasto Gel Caps during chemotherapy? We take the in a cooler with dry ice. Dry ice is also put into the hat and then laid on the dry ice which freezes them and they are hard to get on the head. I believe just laying them on the dry ice is enough. If you have used these caps please tell me the best way to keep them cold. Thanks.
0 -
Hi jcarolh!
I used the ElastoGels and Deelightful is using them on her mom right now. Also Marley2 used them just recently.
I'm running to grab kids from school but I will type something up tonight with DHs help. He was my Mad Capper and had it down to a science!
0
