Cold Caps Users Past and Present, to Save Hair
Comments
-
LeslieVilla, I could not imagine the Penguin website saying people had blisters, numbness etc., so I just went to their website and it says it has been hacked. I would be happy to call you and answer your questions if you want to PM me with your phone number.
0 -
Leslie,
I just completed six rounds of TCH and successfully kept my hair using Penquin Cold Caps. I never experienced frost bite or any type of numbness. My experience is one that I would recommend to anyone.0 -
Hi Leslie,
I too had great success with the caps. If you take a look on page 269, i posted a picture on April 1, which was 2 weeks post chemo. The caps are definitley an investment both financially and as a teamwork effort, but the resuts are fantastic if you want to keep your hair. Being able to look like my normal self has made such a huge difference in my outlook about all of this and allowed me to maintain my privacy where I wanted to. This board is the place to be for all the support and help you need if you go with the caps. One thing I'd say is that most doctors are misinformed about the caps based on old systems that had issues, and they often drive thier patients away from using them - if you run into that, come here with your questions before you decide not to try this protocol. We can share facts and studies if necessary. All the best to you whatever choice you make!
0 -
I used the caps with success and had no none of those side effects. I have pictures on my blog.
0 -
I did have some pink skin on my forehead the first time that eventually peeled.no big deal. The moleskin was too far from the hairline on my forehead.no other problems from the cold. Total price for 4 treatments 3 weeks apart.
0 -
Thanks School mom, I was jsut quoted a price of $455.00 per month? I'm having 5 treatments 3 weeks apart TCH. Thats almost $2400? Someone else said it was only about $900 for the whole treatment!
0 -
Thank you Rhonda, did you have chemo every 3 weeks for 5 treatments with the caps? How much did the cap rental cost you?
0 -
Hope Can you please point me to the Hortense instructions for Icing hands and painting nails and wvery thing i'm jsut starting chemo in a few weeks
thanks0 -
They charge less at the end but if it will be 15 weeks it will be between 1500 and 2000
0 -
Leslie,
I had 6 rounds of TCH every three weeks. Now I'm moving on to radiation. I'm not sure what the total will be when it's all said and done. We paid a deposit and then a monthly rental charge. I know ours was more than $900, but worth every penny of it.0 -
Leslie,
If you are considering the cold caps stop cutting and coloring your hair right now. That is the recommendation from the reps.0 -
Leslie, I used bags of frozen peas for my fingernails and toenails and never had any problems. When they got too cold I took the peas off (like when changing caps) for a minute and put them back on. I also used fingerless gloves so my hand would stay warm. I also put clear hard as nails on but I have heard some girls used dark polish...something about the light on the nails.
0 -
thanks ladies, you are all amazing. I'm petrified, but somehow no matter how hard this all is God will get me through as i see he did for all of you. HUGS and prayers go out to you all
0 -
Hi Cold Cappers
I am scheduled to start chemo in a few weeks and will be getting dose dense AC-T . I've heard the caps are less likely to work with this particular 3 drug regimen, and am wondering if there are any out there who've used cold caps (or are currently using cold caps) and getting this chemo regimen (adriamycin, cytoxan, taxol). I've a friend who saved ~50% of her hair w cold caps but she got TC, not the AC-T that is advised for me. If this has been discussed earlier I apologize, am new to the site and could not readily find this info. I've already bought the Elastogel Caps that I ordered on amazon.com (same used by my friend) (ie not the Penguin specific, etc), but not sure it will be worth the effort, and my sister's griping, if it is unlikely to be of help. I have pretty thick hair, medium length, so may get by with 50% of current hair without wig.
0 -
Hi New Challenges. I'm doing dose dense ACT. I do 4 treatments of AC, every other week, and then 4 of T. On the recommendation of the wise women here, I chose to go with Penguin rather than Elastogel. I'm not sure, but I believe the Penguin caps fit better, get colder, etc. Plus they have found that adjusting the temperatures and timing of the caps helps increase success rates for ACT.
I'm on day 24 from my first infusion, day 10 from my second infusion. I have had the expected shedding but still have virtually all my hair. I'm only the second person to do cold capping at the cancer centre, here in Vancouver. The first person is about 3 weeks ahead of me, is also doing ACT and also still has her hair apparently. (I've never met her, I just know that everywhere I go, she's been there before me)
0 -
Hi Leslie - I *did* get frostbite on the top of my scalp during session 1. Not sure why - I moved my part each time but think it basically happened behind my bangs. That area got red, sore, then numb, and eventually (over 8 weeks) the skin flaked off - taking the hair with it. It happened gradually - not all at once. I found that parting my hair on the other side - creating a 'comb over' - and using a little Joan Rivers Great Day Fill-in Powder for a few weeks worked just fine. New hair started growing in immediately. I'm 5 months PFC. The 'new hair' is now 2+ inches long and I'm back to my regular part.
We did start using some gauze strips over the frostbitten area for sessions 2-4. Basically, as long as the area felt cold but not excruciatingly cold, I figured the caps were doing their job without giving me more frostbite. Worked fine all in all. My daughter figures I kept 85-90% of my hair with PCC.
0 -
I'm dose dense AC-T and ahead of all of y'all. I started my chemo the beginning of March. It was very effective and shrunk my tumor to almost nothing but I lost 95% of my hair on top of my head and 75% around the sides and back. I had fine hair and tons of it that was midway down my back. I started shedding on day 18 and it never slowed down. I still think you have nothing to lose by trying. Good luck to you ladies. May you all be more successful than me.
0 -
Hi Shipsgirl! Thanks for the kind (and reassuring) info! Other reason I gave up on the Penguin brand was needing a freezer on site to store them (which I thought was needed?). My infusion center (at academic medical center) doesn't really encourage caps nor supply freezer, so I would have to bring the caps in my own cooler stored in dry ice. Have you been storing your Penguin caps in a freezer at your infusion center or in a personal cooler w dry ice?
0 -
Thx TXSockMonkey as well, for this valuable experience and perspective. My best wishes to you all (and congrats to you all) as we progress through this journey!
0 -
New Challenges, I use dry ice. My centre is not really encouraging about them. I find that they view my equipment as a nuisance, but then I remember that they don't know anything about what I'm doing. I put on my smile and patiently do what I need to do and try not to inconvenience them. My dry ice supplier is charging me about one third of the normal price because it's for chemo. Again, the one other woman doing this was there before me.
SockMonkey, I've been wondering how you are. I'm so sorry it didn't work for you. But if you hadn't tried, you would have been wondering. I know I'm not out of the woods until I've done the first four AC treatments, but I'm so glad that I'm trying.
0 -
On the bright side, my hair should start growing back any day now!
If I had to do it over again I would cut my hair to my shoulders against penguin protocol. If you experience heavy shedding for weeks like me, you lose more hair to matted hair from sleeping. Even with a satin pillowcase and loose braid I would wake up each morning needing to untangle my shed hair from the stuff on my head and would lose a lot of hair that way.
I really like my wig though! And you know that one weird whisker many women have on their chin? It's like a cockroach. I lose every other hair on my body but that one. Lol. Go figure.0 -
My hair was spikey short and I started growing it out the minute I was told I'd need chemo. I figured I'd have more versatility if it was a bit longer and I got bald spots. Right now it's about 5-6 inches long and I find it quite easy to deal with.
0 -
Just washed my hair. Big shed. The biggest so far. Yikes. It's a little disconcerting. I know all of you pioneers warned us that shedding will happen. But I have so much hair and I'm trusting the caps to work. I've also heard that regrowth is faster with caps so there is that to consider. I've been using a Latisse-like product on my eyelashes and they are doing just fine.
0 -
I feel so lucky after hearing some of you don't get a lot of encouragement at your centers. My doctor has been very supportive of my decision to use cold caps. She said a patient recently completed 8 rounds and kept her hair. (i am having 4 rounds of TC) She even offered to help wheel our coolers in for us!
At my first treatment one of the office workers saw me and said "oh you're doing cold caps! My sister did that last year, and while her hair did thin, she kept it". The nurses have been nice as well.
I ran a 5K race today that I purposely signed up for knowing it would be halfway through treatment just to see if I could do it. (I am lucky that I feel great and want others to know this chemo crap is doable. It sucks but it's doable) I have treatment #3 coming up on Thursday. I'm very happy with the caps so far and I'm starting to see the chemo finish line in less than 4 weeks. Keep going, everyone!0 -
Hey shipsgirl. I started chemo the same day as you and I'm due for a hair wash tomorrow- three days post chemo. I'm a little (a lot) afraid. Who knew a hair wash would become so traumatic!! But it's been wonderful so far living my life without looking like a cancer patient. Only those I choose to tell know what I'm going through. It's really helped my mental attitude. I just hope the hair holds on.
0 -
I had a small spot of frostbite on my forehead where I did not get the moleskin close enough to my hair. It turned brown, then peeled - no lasting damage.
0 -
txsockmonkey I am so sorry the caps didn't work for you. Rats! We are all different. Your hair follicles should be overall healthier though, than those on people who did not cap, so you should not have the dreaded permanent hair loss that some can experience with chemo and your hair should grow back faster. Meanwhile I am glad your wig is cute! You have a wonderful attitude, for sure.
Leslievilla your hair is gorgeous, I hope you do try the caps and are able to save it. For most of us the caps really do work. Challenging to do and indeed rather expensive but they work.
For anyone considering this it is a chunk of money- but you are worth it! my bill was about 1800 which is 150 a month if I average it over my year that would be spent in chemo and then trying to grow the hair back to a short "do" if I did not cap. Even on a scientist's salary I could afford that. I cut out Starbucks and buying fancy coffee beans during my treatment, since cancer cells love caffeine, and may have saved that amount per month actually.
Also the rigors of the capping schedule, for me, took my mind off the yuckiness of getting the chemo, and having my capping crew buddies there to take care of me was a great distraction. It was a lot of excitement getting the coolers and bags ready to go, and I had no time to dwell on the chemo itself. Also, each time we got a private little room for the chemo so that the dry ice didnt bother the other patients-that was nice.
Rhonda2 and schoolmom you gals have great hair too- so glad you could save it. Thanks for the avatar pics - it is great to have a forum where we can share our experiences and hair shots! A picture paints a thousand words, for sure.
Happy mothers day to all who have kids!0 -
Does the shedding slow down? I feel like I've been constantly shedding for the last 3 days. I keep a sticky-roller near me all the time and still can't keep up. No more clumps (just the tiny ones from near my ear). Just random shedding.
My scalp seems a little sensitive. The feeling that I slept on my hair and if I try to move it in another direction, it tingles.
0 -
shipsgirl I shed like crazy after treatment #2. My treatment was April 25 and it started April 28 when I washed my hair. It slowed around May 4/5. I spent much of May 4 outdoors in windy weather and part of me wonders if much of it blew away that day without me noticing. It's been much slower since that day, but I'm mentally preparing for it to accelerate again after #3 on May 16.
Susie0 -
My infusion center has a Cold Caps freezer and they are happy participants. I think they want to help their patients in whatever fashion they are able and if keeping hair is a priority then the they're all for it. My initial shedding slowed way down after day 20 - I'm now on day 14 post chemo 2 so I'll see if there's a new round of shedding or if that was it. So far I'm very pleased with the hair retention results and so are my nurses.
0
