Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi Phalia- when you order your caps, you will be sent the exact instructions...but basically, I purchased two igloo ice chests (I'll post pic below), my husband goes the morning of treatment and buys the 80 lbs of dry ice, and then we take the caps out of the freezer 3 hours before my appointment, and put them on the dry ice. They say to not put your caps on the dry ice sooner than 3 hours before your appointment. (Also, the community board of the Penguin Cold Caps has the directions on their page). It's a lot of work, but in the end if I keep my hair, it will be worth it!
0 -
0 -
how long is your treatment? I didn't get exact times and they're not open until Monday. I'm having TC. How's your hair so far? How is it getting the caps on?
So from other posters it seems as if you have to put a cap on before treatment, throughout treatment, and after treatment... Is that correct? I wish there was like some kind of cold cap angel that comes to appointments with us and magically sets up our caps!
0 -
phaila, welcome. The learning curve on cold capping is steep, but definitely doable!
I put together an FAQ thread here - that should help you get up to speed. But please, keep posting your questions on this thread - it's where the majority of posters are and where you will get the most help.
https://community.breastcancer.org/forum/6/topics/...
0 -
phaila -- I actually did have a Cold Call angel! She has a business of helping women learn how to use them and she will do it for you also. But she taught my mom so she does it.
I'm in Nashville, TN and my cold cap angel didn't know of anyone else with a business like hers. But maybe they exist? Or maybe someone else in your area who has experience could help?
Also, I use 12 caps over about 6 hours. I start them 40 minutes before treatment, then have 1 hour of taxotere, then wear them for an additional four hours including my 2 hours of herceptin and perjeta.
You can do it! Good luck!
0 -
Hi everyone,
I'm going to use the cold caps when I start the TCH regime next month. So I popped in to connect and get the how to do it advice from everyone. I was disappointed that neither the cancer center in Bellingham OR the super famous Seattle Cancer Care Alliance center in Seattle have the Penguin fridgerator or offer services for use of the cold caps. I think this is a crime! There is no good reason why they can't manage this and help their patients with their caps. The NW is supposed to be so progressive and no one knew what I was talking about!
Our plan is to do the dry ice regime and my husband will be my cold cap angel...poor guy, he'll have to hang out with me! But its only 6 rounds....I don't think the Herceptin causes hair loss and I'll have 11 rounds of just that.
Question:
How soon before I start should I order the caps? How many will I need or will they tell me?
Did you get haircuts prior to starting this? Is it easier with shorter hair to get the caps on and snug?
What is the headband you are referring to?
thanks -
Annie
0 -
where can I buy the thermometer and what kind is it and what size cooler
0 -
anniekaja11
You should call the Rapunzel project (www.rapunzelproject.org) and see if they can help get a freezer into your hospital. I am starting on Tuesday for my first of 16 infusions AC + T. I will just share that, although my hospital does have a rapunzel freezer, nobody seemed to know much about the process although they said they would support me and others had done it there. Incredulously, Friday when I was dropping off my caps to put into the freezer the director of the clinic came and introduced herself and was apologetic that no one had put me in touch with her prior. She is in charge of all cold cappers and is getting me a personal representative for any questions moving forward. She says she has trouble getting everyone who works in the clinic on board with protocol. Unbelievable with all the people I had talked to about the fact that I intended to do this: oncologist, several nurses, front desk. scheduling, etc. and no one ever mentioned her name. Thankfully, I now feel a little more at ease. You can do this too. Dancetrancer just posted the newbie thread. Read that.
ILoveArt
0 -
Honestly I can't believe I'm even dealing with this. It's ALL so surreal to me:(
My chemo starts Friday. I'm worried we won't be able to learn how to use them in time. No one sells dry ice around here:(
I heard a woman at my chemo center uses them but I have no idea how to find out who sells dry ice and where she gets hers..
0 -
I am a happy user of Arctic Cold Caps. That company sends it ALL in a cooler. The reason it is hard to get information and no reimbursement is because the technology was only approved by the FDA in December of '15.
the rental of the caps is $500 a month. Then the ice costs $70-$80 a week.. I use dry ice pellets in plastic bags. It is cold, costly and a lot of trouble but I am thrilled that with 8 treatments under my belt that I still have most of my hair. Carolyn from Music City.
0 -
Phalia - first , find out where to get dry ice - usually its people who sell water and ice that have it. You need 80lbs.
Go to the penguin site and contact Geralyn ASAP- she is the one who sends them out and will give you all of the info - they give you a regime based on your chemo and your hair - for me with thick hair and dense dose AC and Taxol, I start the caps an hour before chemo, through chemo, and for 4.5 hours afterwards. You need two coolers - we had an igloo like they said, but its a bit small - we also got an igloo marine cooler which works well. We go get the ice the night before, usually, because it takes 3.5 hours for them to get cold enough. Depending on chemo start time, we pack the coolers *( again, they give you specific instructions as to how.) We practiced doing the velcro with the hats before we made them cold. You should watch the videos. It is a long day for the helper.
They can ship out in two days, but your timing is tight, so i would get on the phone to the rep today- she is pretty amazing and can make it all happen.
0 -
car2tenn: Are you sure that the Arctic Cold Caps has been FDA approved? I thought that only the Dignicap system had been FDA approved so far.
0 -
Hello fellow cold cappers! I'm just checking in from the other side. I don't spend much time on these boards now that I am 8 months PFC. But I wanted to touch base with the newbies out there & just say how much the caps helped me. I did 15 chemo treatments - 4 AC plus 11 Taxols. Yes, it was hard. Yes, I lost a TON of hair (probably 40%). However, I am so much farther ahead than if I would have lost all of my hair. People who don't know me well don't believe me when they learn I went through chemo last year. Several have remarked that they figured I received a new drug that didn't cause hair loss (I wish). Anyway, just stay the course and remember that any hair left at the end of chemo is the prize & better than total hair loss!! What may feel like an eternity in capping & chemo is just a blip in the big picture. You will be back to your old self & hair before you know it! Sending love to love to you all!
Here I am today...3 haircuts since chemo, coloring, highlights and blow drying. It's funny---I almost forgot how to blow dry using my round brush as I didn't do it for nearly a year.
0 -
Angiel
You are truly a shining example for all of us hoping to have similar results. Thank you for this boost of confidence as I head into AC this week!
ILoveArt
0 -
Angiel- you look fantastic - thanks for the hope!
0 -
I'm ordering something today. Wondering if one company is better then another or has better results?
0 -
Angie- you look great! I am between #3 and #4 Taxol...haven't really started the "great shed" yet, but am bracing myself...
Phalia, I read a lot on-line about the different caps. It really comes down to personal preference. I went with Penguin. I am happy so far with the results and have really had no hair loss yet to speak of. Geralyn was great to work with. She sent me my individualized plan...I cap for 50 minutes prior to Taxol, then for the hour for Taxol, then 3 hours after which includes my Herceptin drip. It seems a lot more daunting than it is. Once you get #1 done, it will get easier to plan and won't seem so overwhelming
0 -
thanks nolagirl,
In you photo you showed one cooler. Is that all you needed? Not 2 coolers?That fit 80 pounds of dry ice? Any recs on thermometers?
0 -
phalia - check out the Do It Yourself section of this website. http://penguincoldcap.wix.com/help
0 -
Phaila - oh yes, I have two of those coolers...the other one was outside as we were trying to get the dry ice to melt! My husband googled infrared thermometers on Amazon and we ordered one...I don't know what kind (but knowing my husband, the cheapest one...lol!
0 -
i was able to find my infrared thermometer locally at a Sears.
0 -
so I ordered them. I didn't know you have to knead them while they are on too... That's so much work for your helper:
0 -
Phalia, I used a kitchen rolling pin to knead the caps prior to placing on my head. It's pretty easy for your helper to just lay the cap on top of the cooler and roll away :-). As for kneading them while they're actually on your head, that's just a matter of reaching up there ever so often and pushing the gel down and around. I did that part myself.
I know it all sounds so overwhelming right now, but I promise, after the first time, you'll have it ddown! Really!
0 -
I think the kneading makes a big difference and makes sure you have good contact and no overly cold spots. Some people in my infusion center used a rolling pin to soften them up before they put them on to make them easier to need.
Good luck! You can do this!!
0 -
Two funny things to share.
1) I thought it was funny the way y'all were talking about your husbands being rough with the cold caps. I'm fortunate to have my mom doing mine. BUT, my husband helps me wash my hair in the sink every few days. Let me tell you -- don't let your husband use the sprayer on your hair right after an argument! Whew! He was rough!
2) I finally found ONE good thing about chemo. No more chin hairs!
0 -
JCS28- Lol! Good point to remember! Ok, note to self...no arguments with my husband before capping! Can't wait for my chin hairs to exit...they're still hanging around
0 -
Does anyone know how to protect eyebrows/eyelashes from falling out during chemo?
Does anyone use eyebrow wigs?
0 -
JCS28, chemo this week? Just finished round 4 yesterday.
Heidi16, I believe some women are trying Latisse to save their lashes and brows. I've also heard one negative review on the eyebrow wigs.
Anastasia beverly hills is a great product for eyebrow filling and you can check it out at your local Sephora.
0 -
EstelaLorca, Yes! I'm finishing up in the chair right now! Whew! Officially over the chemo hump!
I have been using Latisse on my eyelashes. I haven't lost any but my doctor also said that sometimes happens late or after treatment. My brows are thinning but still there. I put Latisse on them every now and then. Don't know is it will help.
0 -
I'm starting TC tomorrow morning and using our cold caps for the first time. Any last minute tips from all of you who have been there? Tips for cold caps AND chemo... Also, is it only taxoter that I need to ice hands and feet for neuropathy?
Thank you for any advice
Vicki
0
