Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Everyone:
Good luck to the new people just starting out.
I. too, was a research analyst and data has to be collected before any conclusions can be drawn. I will tell my husband to collect some data on our Penquin caps, both at hospital from their freezer and at home from our regular freezer.
I cannot belive the nurses and there attitudes. I actually found the nurses at my place a bit removed and cold. I warmed them up, by telling them a good joke every time I see them. Laughter helps too!
I usually bring some kind of food for myself and my helpers. I usually offer some to the nurses too. I always bring raisins and different kinds of nuts to munch on, as well as a box of ice pops for me use during chemo infusion, then offer rest to my helpers and nurses. I think that I will bring a tray of deli sandwiches next time-corned beef /pastrami /turkey/etc. If the way to a man's heart is thru his stomach, maybe it works for nurses too!!!
Keep Positive and Laughing Too!!!
Nancy
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Hello Again,
I wanted to add that I shower in very warm water, then I turn the shower down to cool/cold and only put my hair under it. I put some Pure Shampoo in a container, add a little water(very little) just to get it to spread thru my hair better. I smooth it thru my hair(noscrubbing or rubbing,just gently smooth around) and then rinse with cold water in the container poured over my head. You don't have to do a thorough rinse until you are thru. I use the shampoo 2 or 3 x and then do a more thurough rinse-making sure all shampoo is rinsed out. Then I turn the hot water back on and rinse my body(not my head) under the warm water before exiting the shower, so I am warm when I get out. I then put a towel loosely on my hair and get most of the dripping water off the hair. I then spray on Alterna Leave-In, Organic Conditioner and gently comb it thru with the wide tooth comb. I have used foam rubber rollers, loosely curled around my short hair (that has grown quite a bit). I let it air dry if I have time or use the hair dryer on cold setting if in a hurry--but that takes a long time to dry too! It seems to be working.
As far as Latisse, I started using it about the 2nd treatment, when it arrived in the mail--I got the generic one. Every night, before going to sleep, I put one drop in the cap and apply it to my eyelids in a thin line above the lashes with the brush it comes with, much like applying eyeliner. I then use the same drop to go over my eyebrows.
As far as alcohol, I have only had a sip of wine here and there at toasts, etc. Not more than one sip in a week. Alcohol is supposed to be another cause/promoter of breast cancer. I really used to like wine, but am steering clear of it now and all other liquor as well. I guess every once in a while one celabratory drink wont hurt.
Keep Poitive and Laughing Too!!
Nancy
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ToriGirl: Thanks for the positive comments. I'm sure we will do just fine with the Advanced CC. If you have any suggestions for us, please let us know.
Steph: Thanks for posting your pics as it sure makes us feel better seeing your success.
Have a great Sunday everyone!
Arlene
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keeppositive: I agree about the wine. There is a very strong correlation between alcohol consumption and breast cancer, probably because of the high concentration of sugars which is fuel for cancer cells. I've never had a sugary diet, but I am a wine collector and a foodie, and I miss my nice glass of wine with my awesome dinners. I used to open a fine bottle of wine and nurse it through the week, but even that amount of alcohol makes me nervous; sometimes I have wine at dinner, sometimes not. I've just moved to a new home that's beautifully set up for entertaining, so my solution is to have dinner parties and patio parties and share my wine collection with my friends and guests. I lost my taste buds during chemo, so had no interest in alcohol at that time. But I was happy when they came back 3 wk PFC.
My RadOnc, btw, is an international wine judge, and lectures about the health benefits of drinking a moderate amount of red wine. She says not to worry at all with the small amount I drink, but when I read the statistics...
I also avoid wine when I'm having a tamoxifen bender (the blues) because it's a bad combo. Exercise fends off the blues very well, and it's not uncommon for me to spend 3 hours/day hiking/gym/swimming. The health benefits of that activity are tremendous: I kept off the weight I lost during treatment, and continue to lose. I'm almost as fit as I was 25 years ago (just a few pounds to go). On the other hand, I'm still recovering from intense cancer treatments and my body still needs to get plenty of rest. It's a tough balance.
A little off topic, but hopefully useful.
Monitoring temps: everyone, regardless of the make of cap they use, should do this. Everyone's head is individual and it's important to know how the cap's qualities respond to your heat. PCC folks are given an individual temp and protocol, I assume the other caps provide something similar, so that you know what temp you should be aiming to maintain. I kept detailed notes of the temp before the cap went on, while it was on (from the outside), and measured internal temp right after the cap came off also. It's also a way to identify if any caps are not performing correctly -- I did encounter one cap that seemed to be at the end of its life, which Frank replaced in time for my next chemo.
Best,
Susan
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Susan: I'm actually planning to participate in a Clinical Trial "Prescriptive Exercise Intervention During Active Treatment for Early Stage Breast Cancer Patients". I'm a runner so worked for me. Nice to hear that you were able to continue working out during chemo and my oncolgist is pretty confident I should be able to continue being active and that it will help.
Such good information out here.
Arlene
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Arlene, That sounds like a great clinical trial! You should be able to keep up your routine pretty well. In fact, the more you do at the start of your treatment, the better you'll feel throughout and til the end. I swim 1.25 mi every day (have since 1986) and walk quite a bit also, usually at least 2 mi/day. I was determined to neither miss nor shorten any of my swims during treatment. As it turned out, the only four days I missed were my four infusion days (didn't get the caps off my head til 9 pm and the pool closes at 10). I figured it was okay to give myself a pass on those days :-) At chemo #4 I could feel fatigue set in. Normally I feel in my zone about 5 laps into my swim (as a runner you probably relate). About 3 weeks post chemo #4, when fatigue was at its max, I never had a zone. Each lap took concentration, but I was determined that -- chemo behind me -- I was going to keep going no matter what. Pretty soon, a few laps felt "normal" at the end. Pretty soon, half the swim felt "normal". And before I knew it, I was in my usual routine and had even reduced my swim time.
My walks also turned into fabulous hikes, sometimes solo, sometimes with a good friend. Since I felt so great through most chemo, I took up weights at the gym (I'd always wanted to use the personal trainer there), and took golf lessons, and rode my bike, and resumed martial arts for the first time in almost 30 years. I definitely increased my activity! It was great for my spirit and body, but helped me detox the chemo, kept me focussed on the positive aspects of healing, and oxygenated my poor red blood cells.
At the time, I lived up 3 flights of stairs in an old Victorian Mansion. I'd normally take those stairs 8-10 times a day, but they were difficult for me after that final chemo. Hills were a challenge too, but I found some great flat hikes so that I didn't lose my momentum.
The brain and body are very adaptable! Attitude is everything, and staying positive. Cap treatment was a huge piece that helped me anchor that positive attitude and determination early on. You will do great!
Susan
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motherofpatient- just thought I'd say I had elastogel caps at the same time I had the penguins. I did not do detailed studies, but I did put both in my home freezer, both taken out at -17 degrees, I used my laser thermometer and left them on the counter, took inside outside temps for 20 min, and found the elastogel cap heated up about twice as fast as the penguin cap, also, when I placed the elastogel in my dry ice, I found it was difficult to open it and get it situated on my head, I found it easier to put the penguin cap on myself than it was to get the elastogel on in 2 min. I also found it heated up again, about twice as fast as the penguin, so I would have had to change them about every 20 min, vs 30 min with the penguin. This is why I decided to use the penguin caps. I like that the elastogel was a nice shaped 1 piece helmet type. I used the elastogel between treatments several times a week, and they are very comfortable
If advance/elastogel caps are having good success rates, I think that is wonderful, I simply want companies to offer a cap that stays cold enough, long enough, and offers it for a rate that more people can afford, both caps simply remain too expensive for many people to afford.
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Hi Ladies
Thank you for your tips, comments and experience. It looks like there is more than one way to skin this cat! I am just grateful these companies exist in order to give us the power to keep are manes.
Best to all of you!
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I am not a cold cap user (no idea this was available when I started chemo in Jan 11, and was not on these boards at that time). I soo wish I knew, the hair loss has been my most significant side effect, far worse than my BMX or chemo. Anyhow, just read in my small local paper that one of our local teaching hospitals is doing a study using cold caps, 10 patient and only stage one patients. Just thought you would find this interesting.
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Hi christine47~
I am sorry you were not able to use the cold caps. That is the point - I want every person to have a choice if they want to use them or not. I only heard of them from BC.org My onc. was not aware until she did research for me. That is wonderful that your hospital is doing a study!
Hugs to you...
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I used the Elasto Gel caps....(6 treatments of T/C) and before I even got them I wanted to know if I even needed to use a thermometer to make sure that they were the correct temperature etc. I was told that I did not need one, so I didn't use one. I just did the procedure as I was told, except I did change them out every 25-30 minutes instead of the 45 minutes they say on the instructions, and then wore them 3 hours afterwards. IMHO, because they seem to be a bit easier to put on and take off, I really didn't think it was a big ordeal to change them out more frequently...it made the time pass by quickly to have my mind on something else...
I did notice that if you expose the the top of the Elasto gel cap for too long on dry ice, it will get almost too hard to put on directly from the cooler and they would have to be kneaded. (I had them in the cooler with the strap side up) Since they get cold enough exposed to the dry ice in a matter of 45 minutes or so, it was not necessary to leave them directly on the dry ice for any longer than that. I did however, put dry ice directly into them while in the cooler (strap side up) and with a towel in between the dry ice and the top of the cap. They were definitely cold enough, as each time I took off a cap to change them, it was still frosty on my head under the plastic cap..
At any rate, they worked...I'm thankful for that...
Both companies are doing what they can to help others have some control during all of this...we are all lucky to have found them...
Giving your own experiences is what will help them on improve on them in the future..
Go Penguinistas and Gel Commandos!
Tori
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Howard -- My chemo days started with IV with non-chemo drugs. The chemo infusion didn't start for at least 30 minutes (might have been longer). We put on the first caps once the IV was set-up. We changed out to the second cap before the nurses needed to do anything.
There was one session when timing got off and the nurse needed to wait (but she used it as an excuse to go and get lunch) and then came back to start the chemo drip.
Colleen
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Tori: Thanks again for the positive comments and all the tips. I'll print out all your suggestions and keep them handy for my hubby who will be doing all the switching out which sounds like it is pretty easy with the Advanced CC's.
Arlene
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Hi everyone... Coming up on 8 weeks PFC, do you think it is OK to wash my hair in warm water? And now that I'm traveling for work, washing it 3x week? I'm still so cautious and don't want to do anything now that would cause it to thin excessively? Thanks for any advise.
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HI Lmflynn- I have been doing that through my treatments...let us know how it goes!
Good luck with work and travel. I will be back at it before I know it!
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her2intn - when I read your post about your treatment and the other nurses, I could not speak or write. I was so angry! I am thinking about you and am hoping things are going well!
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Anniemotherofthree-I finally decided to report the situation to Patient affairs, they are looking into it, Chemo is done, but I have herceptin for 9 more months
Was wondering if anyone noticed areas of scalp tenderness several weeks after chemo. I had my last treatment 2 weeks ago, and theres one area to the back of my head near the top, that is very tender to touch, almost feels a little swollen there, someone at work said it was slightly red, but didn't see any sores or anything..
Diagnosis: 9/9/2010, IDC, 1cm, Stage IIa, Grade 2, 0/2 nodes, ER+/PR+, HER2+0 -
Re question about hairwashing in warm water:
There was really no reason to ever NOT use warm water, throughout the process. Just be gentle with the rinsing and shampooing, but of course use warm water on head and everywhere. The coldcaps do their thing during and right after the infusion.. after that, it is only a matter of being gentle. I used the Pure Results shamppo and conditioner, a bit diluted, in a bowl of warm water and rinsed that way rather than blast the shower on th escalp. BUt ALWAYS used comfortably warm water...
I shudder when reading posts about people taking cold showers throughout this treatment.. that is just not necessary.
Any new folks starting out, please PM me and send your email address; I prepared and will send several flyers about cold cap use and hair care, a shopping list, and a tIps table for staying well during chemo.. It addresses side effects well beyond just hair!
March 9th on the horizon= 1 year since my last tx. wow. 'Tis good. And hair is thicker than it was to begin with. Had a "brazilian blowout" treatment today!.. really nice treat.
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MTRI - just starting out and some here have been so helpful (ToriGirl, Susan, etc.). Wow, a warm hair wash. I like it. I'll send you my email as the more information I have the more prepared I will be and should be starting chemo in a few weeks. Just had my bandages removed today post-surgery.
Thanks everyone as you make this much less scary!
Arlene
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mtri - I can on dream of a blowout. I hope you really enjoyed it! Sounds fantastic!
I just had a glass of pinot noir with a bunch of girlfriends. It was so fun. We talked a little bit about BC, hair, etc. It is sooooooo nice not to be bald. My friends were so lovely, by the end of the night there was no BC talk. They (and me) had forgotten about this other journey I am on.
I am so thankful for the cold caps. We are so fortunate to have access to them.
Night everyone!
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mtri: The advice from PCC specifically says to only wash hair in tepid (at most) water throughout treatment. I do NOT recommend deviating from Frank's instructions. He has spent years researching this and identified the very tiny, narrow window in which these results are achieved. While individual responses may vary, the maximum opportunity for folks is by following Frank's instructions.
Susan
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I agree with Sebm9. I've invested too much and it's too important to me to deviate from what Frank says is "best." I've done everything he says to do trusting that his research gives us the best advice. At Day 27 have lost almost zero hair. (maybe 20 hairs total in 3 1/2 weeks). Amazing.
Here's what is working for me: I get in a warm shower (not hot) and the warm water does not touch my hair. When ready to wash my hair, I get out of the stream of the shower, change water temp to cold, and use a container of cool/cold water to wet my hair or use the nozzle that sprays water that we have in our shower. I slightly dilute Regis Pure shampoo in a container and pour it slowly over my wet hair patting it in gently. No scrubbing. Then rinse and repeat, since my long, straight, fine, hair gets really flat and oily after a week of no washing. Then rinse hair with cool/cold water from the spray nozzle being careful not to let it touch my body since it is cold. (keeping my head to the side or back like a backbend). I rub a LITTLE Regis Pure diluted conditioner on my hands and put on my hair being careful to avoid the scalp. Then rinse out the conditioner with cold water from the nozzle or container avoiding the cold water on my body. Then, oh joy, I switch the temperature back to warm and end my shower with delightful comforting warm water for a couple of minutes. Not as hot as I'd prefer, but it warms up my body without touching my cold hair. This is not too bad and keeps the hair cold while still enjoying the comfort of a warm shower at the beginning and end.
So thankful for PCCs. I'm telling everyone who will listen.0 -
Regarding the whole water temperature issue. I have tried frigid cold, cool, lukewarm and warm water throughout treatment (I got progressively bolder as treatments went by and as my hair held on). And while in to way does this qualify as a scientific study, I have to say I saw no difference in hair shedding with warmer temperatures. I will say that what I noticed is that my hair was at its most fragile when wet - and that's when most of the hair loss occured regardless of the water setting. So I'd have to echo Mtri's message to BE GENTLE. I only washed and wet my hair once a week. I never used more than a penny sized portion of chemical-free shampoo diluted in water and never let it touch my roots.
For those who feel more comfortable washing in cold water, but don't feel like freezing you can always try to wash it in the sink so as to not wet your body. Or better yet in a warm bath and use a cold water container for washing and rinsing hair. Then again, I'm in Canada and staying warm is a precious commodity around here.
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Silly question and non-cap related. Any of you contact lens wearers have any problems wearing your contacts while on chemo. Since bodies dry out, thought maybe we might have problems with the contacts.
Guess I'm getting really close to Chemo time since my MUGA scan has now been ordered (for us Herceptin people).
Happy hump day everyone!
Arlene
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Not sure if i have asked this question or not. Most of the posts re cold cap use is from node negative users. Are their any node positive users out there??I really would like to give these a try but my node status worries me. Any insight is appreciated!!!!
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kriskat--my node status is the exact same as yours..I used the cold caps with the okay of my oncologist...
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HI Arlene- major eye issues related to over-watering of both eyes. The eye SEs depend on the chemo cocktail, just like everything else! Systane eye drops seem to be the drops of choice on these forums.
Good luck, keep us posted!
Annie
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Thanks Annie. Just the wait and see game on the side effects. Arlene
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You will do great! Chemo is so doable...just remember to do the drugs. All of them.
Coming from a gal that used to debate whether I should take a tylenol for cramps or suffer through. My rehab room is already booked for June!
Annie
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Hi Kriskat,
I had 1 of 2 nodes positive and used the caps. There are a lot of us. Your node status does not have anything to do with whether you can use the caps or not. The particular chemo you are given indicates your chances of keeping your hair and Frank at Penguin will tell you that.
Howard in Dallas- That is exactly how I do my shower/hair wash. Warm water on body- cool on head. I thought I was the only one doing that.
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