Cold Caps Users Past and Present, to Save Hair
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thanks everyone! michcon, thanks for the encouragement! you are so right just picture the alternative and ill get through it!! thanks ladies your support is unmeasurable!! i can do it!!!!!
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jpmercy, yes you can do it!!! i have done it 12 times so far for 9 hours each and have 4 more to go, i hate it but i keep myself busy while doing them, texting,cleaning,laundry,cooking or watching a really good movie...but remember its ok if you dont want to continue, i will admit i had more stress and worry about the caps and my hair then i did with chemo, i have come this far and still have some of my hair. im glad for that. i was an AC x 4 and Taxol x 12, my hair started to grow back about #5 but since my head is covered its hard to tell up there. keep it up you will be so happy in the end!!!!!
good luck
chey
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Zlota - I used the cold caps for TCH chemo. I had 6 rounds every three weeks. I had great success with the cold caps. They are cold. I must say after the first one (20 min) I almost didn't feel it. They also gave me IV ativan which helped a lot.
I think saving my hair completely kept me from losing it while I was doing chemo. It was great not to look like a cancer patient. It was also great to fight that battle and win. I know people say its only hair but it really is about a lot more than that.
Good luck to everyone using the caps. Spread the word so more people find out about them.
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I agree with shadow2356.
I had 6 rounds TCH with the TC ending in March. I kept all my hair except the small part beside each ear. I may not have had my caps tight enough at these spots. There are pictures of my progress on this thread if you want to look at them. I cannot say enough good things about the Penguin Cold Caps. They did so much for my self-esteem during such a darn awful time. They also gave my hubby something to do during chemo...
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Hey -- is anyone else having a blast using the infa-red thermometer for something other than checking cold cap temps? If you watch Alton Brown "Good Eats" on the Food Network you will know he has one (much more expensive than the one I got at Sears). But I have found that using it to check the temps of frying pans really is great.
Colleen
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Hi, I'm newly diagnosed. Scheduling surgery sometime in the beginning of Nov after consult with Plastic Surgeon this week. Just doing research and looking ahead. The scariest part of this journey for me is the thought of chemo. Not sure if I will need chemo, but preparing in case I do. So glad to have found this forum. So many wonderful strong women with helpful information!
Had never heard there was a possibility of saving hair while on chemo! I've read through the last few recent pages of this thread and didn't see any mention about eyelashes/eyebrows. Did those of you that used the cap keep your hair but lose your eyelashes/brows? I've even read that some people lose there fingernails during chemo?!? Is this the exception more than the rule for the fingernails?
~ Susan
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Hi Zlota,
I'm getting TCH (taxotere, carboplatin, and herceptin). So far I've had four treatments and used the Penguin Cold Caps throughout the process. They work. I've lost VERY little hair, if any. And I'm just very, very glad to have my hair. Even washing my hair just once a week is not as big a deal as I feared (my hair / skin has adjusted, and chemo's probably made my scalp less oily, in any case). The caps are very cold and they are a pain. You'll need a very dutiful and diligent helper (or two or even three) to manage the caps during chemo. My friends gave me a fabulous electric blanket to keep me warm during chemo -- a huge help. If you want to talk about the process, just email me at kleink@wharton.upenn.edu.
fyi, following the logic of the cold caps, I've been chewing / sucking on ice before, during, and after chemo (on my chemo days) and I think that's made a huge difference. I haven't gotten mouth sores and my taste buds are off, but not too terribly off.
Good luck to you -- and all of us! -- during this challenging and ultimately health-giving process,
Katherine
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Susan - I did the caps successfully but did lost my eyebrows and eyelashes. I don't know about eyelashes but some people use brow bands to save their eyebrows. For me it wasn't terrible. The eyebrows came out after chemo ended but while they were falling out, new ones were growing in. I did have to use an eyebrow pencil for a few weeks. After the eyebrows came back the eyelashes started to fall out. They started to grow back in quickly but after a few weeks they are still short so I may have to investigate Rapid Lash (or something like that).
As far as the finger nails, I understand that the taxanes (taxol and taxotere) can cause neuropathy and nail loss. I didn't want to take that chance so during my taxotere infusion I used frozen peas on my fingers and toes. I had no issues at all. I also used ice cubes in my mouth to prevent possible mouth sores or burnt tongue feeling. That worked too.
I wish you the best of luck in your journey. Hopefully you won't need chemo but if you do, know that it may not be as bad as you image. This site is an amazing place for information but don't get too far ahead of yourself. You can definitely get information overload.
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Hi Susan,
*IF* you need to take this journey, there are many resources and it is a remarkably manageable experience. The nurses have meds for every possible side effect and I still have a plastic bin in my bathroom filled with stuff I never needed. A friend who traveled this road a year ahead of me told me, before I began, that on her worst day she felt 87% of normal. I didn't believe her, but on my worst day I felt 95% of normal.
I used Penguin Cold Caps and did not lose my hair (it thinned, but I had alot to start with). My results were very similar to Drim. I lost most of my eyebrows but not until the very end and they grew back quickly, so I used brow pencil for a few weeks without incident. I didn't even realize my lashes had thinned until I started seeing how long and thick they came back.
There were lots of places I loved not having hair! I didn't have to shave all summer.
I used ice on my toes and fingers during infusion to prevent neuropathy (which I did have mild and occasionally); I also used acupuncture for neuropathy and to manage other assorted occasional side effects and found this enormously effective (I've continued it just for "maintenance"). My biggest side effect was my tastebuds, but with diet management and a good soothing mouth rinse (or baking soda and water), I did not have mouth sores. All in all, I had very few side effects and beyond leg fatigue and tastebuds, nothing that lasted more than a day at a time and nothing that sidelined me. The great gift of having my hair was that I was a cancer patient on infusion day, and on every other day I was me.
One thing that helped me was to not "worry ahead" about what I might go through. One day when I was worrying about what my side effects might be, a good friend told me "Sue, you get no brownie points for worrying about something that isn't happening. You're feeling great today, so take advantage of it." That kick in the pants was a reminder I carried throughout all of my cancer treatment. It was a reminder that this is a journey about living, not a journey of not-dying. Keeping a positive attitude is essential! If you need to go through chemo, you will be able to manage your symptoms and -- best of all -- you've discovered that you don't need to lose your hair going through it! I still pinch myself that I accidentally discovered PCCs and one of my life's missions is to spread the word.
Likewise, if you go through radiation, don't worry about side effects ahead of time. As with chemo, there's a menu of possibilities and you may or may not get them and in varying degrees. I got on the boards and started reading about everyone's side effects and it depressed me, so I had to stop reading. As it happened, I had zero side effects other than eventual reddening of skin, but no itching, no blistering, no fatigue. It was a non-event in my treatment. I'm now on tamoxifen, and made the mistake (again, curiosity I guess) of reading what that might be like. I found lots of side effects...none of which I am having. (My first week, on a half dose, I had sleeplessness and hot flashes, but now I just have an occasional hot flash. No violent mood swings, no pain, no bloat, nothing so far - 1.5 months. My doctor says any side effects peak at 3 months then go away, so I feel pretty good about where I'm at.)
Looks like your diagnosis is early stage, and you're hormone positive (great) and HER2- (great again), so you caught this early and your prospects are excellent. Hopefully you are getting an Oncotype test, that will be very helpful in determining your next steps.
Wishing you the best!
Another Susan :-)
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Susan,
i just wanted to say that your positive attitude about chemo and everything truely helped to read tonight! i start chemo in the morning...cold caps are ready to go as am i, my mom, husband, and best friend who will be my helpers tomorrow! your are so right BC is a journey about living not a journey about dying......thanks again you brightened my day and made me smile
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jennifer - good luck tomorrow!!! Mom, husband and best friend - what a perfect group. I'm sure you'll do great.
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susansgarden,hi susan, i did AC x 4 then Taxol x 12. i have 3 left then im done i used Latesse on my lashes and on my eyebrows, i have not lost any so far seems to be working..yea!! and i only have 3 weeks left of chemo, chances are you will be on chemo, i pray not!!! but i have had no side effects at all, nothing outa 13 treatments so far, i was on AC and that is hard core, i did really good, dont worry!!! i used the caps and they work, i did lose about 80 % of my hair and still have 3 treatments left but i can go out in a scarf and i have hair covering my head and no one can tell, but again i had prolonged treatment, so im thrilled at my hair that i have, i could have been bald since june 18, it just keeps shedding even all over, but i think it is now growing back,
good luck!!!
Chey
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Just wanted to say hello and wow, what a wonderful and informative thread!! I have finally finished reading ALL 39 pages! So exciting to see that the hair can be kept through chemo. Wow.
Thank you all for posting through your experiences. I was so thrilled for each of you as I read each success.
I am recently diagnosed...Sept 15. I am 43 and had BMX on Oct 4th and just had my post surgery consult with my Onc. She presented my case at a BC conference last week and their recommendation was to do the chemo based on my age. She said I could go either way. My diagnosis is IDC, 1.5cm, Stage 1, 0/3 nodes, PR+/PR+, HER2-, BMX on Oct 4th (with wide clear margins) with TE reconstruction, BRCA negative.
So caught early, no node involvement and HER2-. I am of the mind that NOW is the time to fight with everything I have though. Cover all bases, or try to. So part of me says do the chemo....but of course will the benefits outweigh the risks?? I am awaiting an Oncotype test. I will have those results Nov 2. If the results are a high number, well, no more trying to make this decision, it is made for me! BUT, if it is low, I am soooo unsure. I just don't want to look back and think I should've done the chemo! But I also am very afraid of the neuropathy and possible permanent side effects. I was told IF I had chemo it would be a short run of Taxotere and Cytoxan, 4 rounds, 3 wks apart. She said I could have possible permanent tingly fingers, toes, hands, feet etc. OH and um the hair loss?? Well, not SO awful really if I know it will grow back BUT possible risk of permanent hair loss. Um NO.:(
So, I am thrilled to read that it is possible to keep my hair AND reduce or eliminate nerve problems with my hands and feet! (and fingernails
....I'm a girly girl and all those things will help me keep my spirits up during this process) I see that some use peas but also noticed slipper type "shoes" and mitten type gloves from the Elasto gel website. Would cover the entire feet and hands. Hmm So a question I have that I did not see in the 39 pages.....do you girls wear your caps out after chemo or do you take them off and go to the car and replace? If so, isn't that iffy on not keeping the head a constant cold? Or, do you just leave on and turn heads as you walk through the waiting room to the car?
How about in? Do you wear them in or is there enough time typically to do the first 2 20 min sessions and 10 min session before ?
Anyone have any answers on whether you did or did not get insurance to cover these? I have BCBS and know I have a 1,500 cranial prosthesis allowance.
Off topic a bit, but if I do decide to have chemo I think she said it would start soon and the PS reconstruction part would be delayed. But I have to tell you, these expanders are SOOO uncomfortable and still painful and the thought of an extra 2-3 months in them makes me cringe. I would want to do my implant exchange before starting chemo. (per my PS I will most likely have exchange in Jan.) Anyone here do that?
Thanks so much everyone!!!
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Hi EastCoastGrl~
I wore my Caps through the lobby to the car and we ended up switching Caps in a Pizza Hut parking lot on our way home! I have BCBS insurance and I just got a letter from them telling me they needed "more information" from Frank Fronda. I am going to email him and see what more I can get. He had given me a statement but the insurance wants more?
Best of luck with your decisions - these ladies on here are amazing...
Hugs to you.
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East Coast Girl - I also have BCBS and I talked to them about coverage. I was told based on my plan, they are covered at 50%. I submitted my paperwork earlier this month, haven't heard anything yet.
As for wearing the caps. There is plenty of time to start wear caps 1 and 2 for their -20 minutes & first 10 minutes of cap 3 before the chemo infusion starts. While everyone might have a somewhat different protocol, there seems to be blood draw, meet with doc, wait for pharmacy to get chemo ready, (at this point I would be given a chemo bed), then pre-meds for nausea and steroids, etc. Once the chemo infusion is over and you are ready to leave, yes, you do wear your cap to your car. I was lucky that we timed the last cap change right before leaving the hospital and were able to get home within the 30 minutes before the next cap changed. Many women live much further distances from the hospital and they would stop along the way to do a cap switch.
BTW--I didn't use peas or anything on hands/feet; I just could not imagine getting anymore of my body cold. My nails held up fine. But I did get the tingling neuropathy. I don't know if the peas help that -- I thought it was only the discoloration of the nails.
I also had 4 rounds of TC @ 3 weeks. Hair loss is a real issue with taxotere and this included permanent hair loss. My chemo was July - early Sept. I had thinning. I have noticed significant regrowth this past week. There had been a very thin spot on the top/back of crown (think typical male bald spot). That area showed the scalp when the top hair was parted, but this week, it isn't so glaring "pink". I am also getting the regrowth frizzes (the new short hair coming into the long hair. But since I have always had the frizzes I don't care -- I have hair.
Colleen
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THANK YOU THANK YOU THANK YOU everyone for you words of encouragement...i had my doubts taht i could hanlde the cold but i was JUST FINE! the day went smooth the caps went on without a hitch and eveything went great! 1 o done 11 to go!!! And yes i wore them out to the car got some strange looks but who cares i would get stranger one if i went bold right?? it actually made the time go back so much faster!!! one thing bring a support system taht keeps your mind of the caps that totally helped for me! also i only live about 10 minutes away so we just waited utnil the next cap was ready and ran out after taht to get home befoe the next cap change, also for the 50 min before i didnt have that much of a predrug and needed to buy an extra 10 minutes becuase we were running ahead of hte caps so my nurse slowed down my drip to make up the time they were all a wonderful help and are eager to see if this is going to work! again thank you for really encouraging me the dry ice, timing, everything was great no biggy ready for next week!
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Way to go jpmercy!!!
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You guys are NOT going to believe this!! Good Morning America is going to do a story on the Penguin Cold Caps (I think airing on Tuesday) and they will be interviewing me. I am sooo nervous. I want to make sure to say the right things and convey the message about how great the caps are but at the same time not make anyone who chose not to do them feel bad. Wish me luck. They are taping my story tomorrow. Won't know if I'll actually be on until it airs.
Welcome EastCoastGirl - I think your questions were answered. I did TC x 4, did the peas and they worked great but who knows if anything would have happened if I didn't do them. I can tell you that ice cubes in my mouth during Taxotere definitely helped because the one time I didn't really do it I got a burnt tounge. I too could be seen on the streets of Manhattan in my very fashionable PCC but only for a quick minute running to and from the car. No way would I take the chance of having it off my head for any longer than it takes to change them. Hoping you don't need chemo but if you do, you've come to the right place!!
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Drim! That is freakin' fantastic! Can't wait to hear more so I can watch!
Tori
DE COLORES!
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Drim! Sister, this is fantastic news, and you are such a perfect interviewee! I can't wait to see it -- not only because word will finally get out in a bigger way -- but because I feel like I know you but I don't even know what your voice sounds like! :-)
EastCoastGirl: I used ice packs on my toes and fingers to prevent neuropathy, and used acupuncture. The one infusion where I didn't pay so much attention to the ice packs, Ihad strong neuropathy. I didn't forget my ice packs again after that! But everyone is different.
I was in a similar situation to you when reaching a decision about whether to go through chemo, and the idea of losing my hair was the main reason I considered not doing it. I decided to go through chemo before I found PCCs -- in fact, the night I decided, I was distraught, madly googling, desperate to find some way to save my hair. Lo and behold... But what solidified my decision were two things: 1) I didn't want to be swimming or hiking or walking the dog in ten years and be short of breath and then find nodules on my lungs. I knew the greatest danger to me was the distant recurrence. 2) I had an early diagnosis, good surgery, and a good job with good insurance and was in otherwise good health, and decided I'd rather go through this now when it was prophylactic, rather than have to go through it because of mets in an inoperable area such as the lung or heart and in ten years, when who knew what my situation would be. So, this summer I went through chemo. And you know what? Bizarre as it sounds, this was the best summer of my life. I didn't know what any day would bring, so I took them as they came and appreciated each one. I learned things I'd always wanted -- tai chi, golf -- and learned to finally make myself a priority. It's a hard way to learn that, but worth it!
The caps stay on your head at all times during the process -- the cap change is to be super-fast so that your scalp freeze remains constant. I live in a very diverse city, and nobody ever looked at me funny - looked like I was wearing a pretty blue turban! Anyone who got close would see all the frost on it :-)
jpmercy: Congratulations! You did it! I felt such relief once I had my first chemo out of the way, and the rest of them will be behind you before you know it. Keep drinking that water and flushing that chemo out of your system, and keep moving! even if you have to talk yourself into it. Activity really helps you detox faster.
This is an awesome group!
Susan
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Ditah-
I am so glad you are doing it and that the word is getting out. I sent you a PM.
MaryEllen
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What a wonderful set of posts. Jpmercy - congrats on your success. It really does become easier each time and does make the time go faster. Drim - you go girl! TV likes short sentences and clear examples. I rarely watch morning TV, but will mark this in my calendar. Also, I think many of these segments are available online after the broadcast.
Colleen
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sebm9: I love your friends advice!! "you get no brownie points for worrying about something that isn't happening. You're feeling great today, so take advantage of it" I have always been a positive person, even throughout all of this, and believe it truly helped. I always have said Be Happy and continue to say it.
Drim: That is great news!! Please keep us informed of when it is supposed to air. I love that the word is getting out there about the PCC's. I tell everyone I come across about them and I can tell you 99% of the people I tell have not heard of them. But some have even called me to see if I would talk somebody they know who was just diagnosed.and is interested in using them.
I wish the very best to everyone!! To all the users who are currently using them, it will be over before you know it. Take it from someone who is almost 7 months PFC and it seems like a lifetime ago.
Kelli
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jpmercy: I'm so glad your first round went well! That's the worst one since you don't know what to expect, so now you'll do great!
Drim: How awesome to get the word out on Good Morning America! I tell anyone who will listen about the caps and all of my friends and co-workers are watching my progress. It's the talk of the town around me! ha. I'm halfway through and have my hair, so let's hope I'm a success story like you.
Thanks to all of the women on this board. It has helped me feel "normal" while going through this crazy ordeal. I don't know what it is about women, but we are amazing at supporting each other!
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Hello everyone! I recently started an A/C + Taxol regime (4 of each every other week), started last thursday. I have emailed the PCC website--but does anyone know if its too late for me to start? I have only had one chemo treatment and haven't shown any hair loss yet--but am still willing to try to keep it that way! Also, what about all of the different eyelash/eyebrow creams out there? Anybody having more luck with one than another? I've heard Rogaine helps eyebrows also?
Thank you so much, the last week has been tiring, along with all of the other side effects and to see there could be a positive, by not losing my hair--is awesome.....
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I'm back from my interview. I hope it went well because it was a fantastic experience. The crew was great and Juju Chang (who did the interview) was wonderful. I don't think I did my absolute best but the important thing really is to get the word out.
The plan is to air the story on Good Morning America (ABC) on Tuesday October 26, 2010 around 8am. Hope you get a chance to see it!
namaste99- my understanding is that you can start to use the caps even though you've already started chemo but you will lose some hair from your first treatment. By using them now you may be able to prevent significant further loss and damage to the follicles. I have not tried anything for eyebrows/eyelashes but it seems Latisse (prescription) and Rapid Lash work.
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Great Job Drim!!!! Frank told me about Good Morning America -I hope the whole USA is watching! I am sure you did a great job! I plan on being very busy next week! Way to go!!
Geralyn
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Geralyn - I have a feeling you are right. These caps are about to take off with the national exposure they are about to get. This is what I'd hoped for from the very beginning. I cannot believe that I am actually a part of this. I hope I represented the PCC community well.
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Love this site! I had never heard of cold caps until here! Good for you for getting the word out! Just knowing there are possible options like this makes the possibility of having to do chemo, just a little bit less scary.
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Drim!! i cant wait to see it! i will DVR it for sure since ill be at work! i cant wait to be done and promote PCC!!! everyone at my chemo office were so mad they didtn know about them i got so many questions!
i am using Latise for eyelashes not sure if it works yet since i only had one treatment so far but im hoping!!
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