Cold Caps Users Past and Present, to Save Hair
Comments
-
Michelej19-I think it's best to very gently comb/brush hair to remove any tangles before shampooing. While it is thought that using a brush is a no-no it causes less pulling on those with long hair. Bending the head over while shampooing can create more tangling. Shampooing while standing is best. I don't recommend rinsing daily-you want as little disturbance to the hair, while at the same time maintaining a clean scalp.
- Shampoo should be diluted in tepid/lukewarm water and poured over the hair.
- Gently massage scalp. No vigorous rubbing.
- Rinse hair by pouring water from a cup over the scalp, rather than direct spray from shower nozzle.
- Condition the ends of hair, not the scalp.
- Rinse.
- Gently pat hair with towel to dry.
- Brush or comb the hair gently using a wide tooth comb. If the hair is long do not comb the hair without holding it to take the pulling effect off the roots. Do not use elastic type bands to tie back the hair, use only soft scrunchy type hair bands.
It’s best to let your hair air-dry. If you must use a blow dryer set it on cold and be very gentle handling your hair. Do not pull on the hair, or twist it etc.
No-Hot Water
No-Blow-drying (Hot)
No-Curling irons
No-Hot Rollers
No-Hair dyes.0 -
Hi everyone,
My thoughts to anybody recovering from Sandy!
This and that:
I rinsed at least once a day, sometimes more; I only washed 1x week. (That was the protocol at the time I used the caps in early 2010, and I gather it's changed, but if I had to use them again I'd only wash 1x/week. My hair always shed its heaviest during a hair wash.) Rinsing isn't the same as washing in terms of getting hair clean, but it will help - especially the scalp and especially in the week after the infusion. The reason I rinsed daily was swimming, which I kept up with throughout chemo: I wetted my hair thoroughly before my daily swim, then gently put on the cap, and rinsed again after my swim. Frank was aware and approved, and I am convinced that the extra time in cold water was itself beneficial. I have thick, shoulder-length curly hair, and the rinsing helped keep my hair and scalp clean. Some days I also gently patted some conditioner into the hair, towards the end of chemo when the hair was dryer.
My method of washing was to rinse, use a small amount of shampoo and work it into a lather in my palm, then dab or stroke it through my hair without pulling the roots. I used my fingertips mostly. It was time consuming, but by stroking/patting I didn't get as many tangles as with my normal hairwash routine. I then rinsed thoroughly and used only a pick-type comb to comb my hair. I only air-dry my hair.
Besides swimming daily, I also hike, do martial arts, golf, and am very physically active in general. I kept up (and even increased) my activity level -- it was good for my spirit, but it also helps detox the chemo and oxygenates your red blood cells. My blood levels stayed normal throughout chemo (my MO stopped doing weekly bloodwork at my 3rd chemo), and it wasn't until the last chemo that my quads started to feel tired.
The Paxman system (and Dignicap system) seem to be far less hassle. I've heard it doesn't use the same cold temps as PCCs (or else I'm confusing it with the DigniCap), and it seems those narrow cold temp windows are critical for best results. Please let us know how it goes! I would definitely keep doing the PCC hair care protocol to accompany it.
Caps in bags on ice: I know it can be more convenient but it's not good! The cap material (plastic) is not made to withstand that level of cold unless in the keep boxes - that's also why it's not good to put the caps in dry ice overnight, just several hours before chemo begins. I followed Frank's instructions exactly, but the previous user of my caps had used the ziploc method on dry ice, and I unfortunately had several caps fail on me -- I'd go to put them on and a seam would have split from temperature fatigue. A panicked call to Frank from the infusion room assured me that the inside gel was not harmful to me, but it was a pain to get out of my hair. I got charged for a damaged cap even though it wasn't my fault, until we figured out what the problem had been.
To anybody about to start PCCs or considering them, feel free to PM me with your email address and I'll send you my writeup of my experience (it also includes link to photos of before, during, and the various stages of regrowth after).
I just realized, next week is the 3-year anniversary of finding my lump. And today's my birthday, and I'm very glad to be here.
Best,
Susan
0 -
Happy birthday Susan! You have been such a big help on these boards
0 -
Question - the older posts say that Frank says only wash your hair once per week while on chemo. But the instructions I got from Geralyn say that on non-chemo weeks (when you don't wash 2 days before or 2 days after), it's OK to wash every 2-3 days. Thoughts????
0 -
Well my caps are in the fridge and tomorrow I am getting all my bags of stuff together. Went to fellow PCC user today in Houston for a hands on training. She was wonderful. My girlfriend helper person came and we went through off and on and using the thermometer...everything.
Some confusion about the headbands and how/where you use them.....I have shoulder length THICK hair. Also, exactly where/how to put the gold band.
From my conversation with Frank it seems like the gold band stretches across the top to flatten the cap. I think the headbands on the nape of the neck and around front hairline. Do you put the headband on top of your hair at the nape or under the hair????
0 -
Headbands go at your nape over your hair.
0 -
I know I keep obsessing over this but the main shedding I have is from the frozen spots - unfortunately where my bangs attach. It's been over a month now. Is there any hope that the remaining flakes will just flake off and not take hair with them? I have noticeable bald spots just above my bangs. Aargh! Otherwise, day 31 and minimal shedding.
0 -
So tomorrow I need to be careful to get my head cold but no frozen spots. Any way to prevent that? I know if it is burning cold you can put a thin layer of gauze over it for the rest of the cap changes.
0 -
301724, I wish I had some good advice, but I haven't experienced what you're going through. Maybe try rinsing under a low flow shower to try to budge the flakes without taking out the hair?
School mom, the top of the head is where the cap fits the tightest and feels the coldest. Be sure to pull your hair straight back or change your part with each cap change.0 -
I believe, based on my experience, that unfortunately you will lose all of the hair in the frostbitten spots, but that after a short healing time it will come back vigrously. We used a layer of gauze to protect them during following treatments.
My hair density is now far thicker on my two frostbite spots than the hair on the rest of my head. While they did go bald, they came back quickly and the hair in them grew so fast that it was about 3/4" by the time I finished chemo.
0 -
Thanks, all. Wish the advice about pulling your hair straight back had been given with the instructions. I did change the part each time but it's the transition spot from hair to bangs that gave me the trouble. Ah well. I bought some stretchy headbands today. When/if the comb-over quit working, I'll use these and the rest of my hair looks completely normal.
Complaints aside - let me say this: I'm on the discussion group for those starting chemo in Oct. Many on that board are lamenting how much harder the hair loss is than they anticipated and how hard it is to have the world view them as 'sick.' Having hair makes a huge difference. So glad I found all of you and PCC!
0 -
I am lucky to have a local PCC rep here - she did my first day of cap changes with one of my friends, taught my friends how to do it and is available to fill in should my friends be unable to be there or sick or something - very reassuring since I have 12 weekly treatments. Well worth the cost. She is the one who suggested pulling the hair straight back.
Whenever I start feeling down or sorry for myself I think about how lucky I am to still have my hair...especially when I read on the September or October boards how hard it is for most of them to lose it. I almost feel like an intruder on those boards at times.
Here's an odd benefit of PCC's for me - for years I have had little bitty bumps on my upper arms, not really noticeable except when I feel them in the shower. I read somewhere that the bumps might be caused by shampoo and/or conditioner, so I always wash the arms again after washing my hair - but the bumps never went away. Now since I switched to organic and free-of-bad-stuff shampoo and conditioner, the bumps are gone!0 -
PatinMN, That is funny you said that, I felt the same way at times when I was on the other couple of threads that corresponded with my treatment start date etc.
0 -
laura5 - I'm glad to know I'm not the only one!
0 -
PATINMN AND LAURA 5: I too was feeling the same about my PCC on the Oct chemo site. I forgot where I was sometimes and made comments about the PCC preparation.
All the ladies have been great about what supplements etc to do during chemo.
I try to stick to chemo questions and scroll up to see where I am before commenting.
Going to start packing my coolers in 30 min. and off to chem #1 in 3 1/2 hours. Wish me luck.
0 -
Good luck, Schoolmom!
0 -
Good luck schoolmom! It will seem pretty chaotic at first, but soon you and your helper(s) will be old pros
I still thought it was a good idea to mention I was using cold caps on the other threads, just in case it made someone aware that they are out there for us.
0 -
I went to my pre-chemo appointment this morning and have come away feeling really demoralised. I was determined to try the cold caps and was being optimistic. I tried on 3 different size caps and none of them fit properly. They gape at the back of my head and if I apply pressure to make contact with my scalp, they gape at the sides instead! :-(
So, even if it works, I'm sure I will end up with huge bald areas anyway because of the stupid shape of the caps. It was SO uncomfortable too and the nurse was yanking it on and off, this way and that, which was enough to pull anyone's hair out. I had the helmet strap pulled so tightly I was almost strangling myself. Already I'm wondering whether it's worth the effort but I'm not emotionally prepared for the hair loss because I was determined that the caps WOULD work.0 -
Michelle...which caps were you trying?
0 -
School mom, good luck! As Laura5 said, it will become routine pretty soon. Dress warmly and drink lots of water!
michellej19, with Penguin Cold Caps the fit is kind of loose until the Velcro straps are applied. Are there straps available with whatever system you are using? it sounds like your nurse was less than helpful.
0 -
It's the Paxman Cooling System. I had everything tightened but there's no way to tigten the back.The nurse was somewhat helpful but it didn't seem she was that experienced with them and after my 'try on' was being quite negative about them, saying that most people who try them don't follow through and give up after one or two cycles. Or that they have patches. The onc and breast care nurse were much more positive. But if I can't get the damn things to fit my head... I'm really pissed off.
0 -
Michelle-We use stretchy velcro straps to get the Penguin Caps to fit closer to the head. Could you bring your own strap to wrap from the back to front of your head to get a better fit?
0 -
I've just been reading the product brochures and can see that there is a strap round the back as well as on top but I didn't notice earlier. I could have done with a mirror actually. I wish I could have brought the caps home to play with in preparation! I'm not letting them start the infusion on Thursday till I'm satisfied I've got the best fit possible! I read in the brochure that you can use mis-matched caps and cap covers for a better fit if necessary. So for example, a medium cap with a small cap cover. I will experiment on the day. I had hoped that the nurses would be more experienced, but this one was struggling to put the 'helmet' on the cap until i tried it the way i'd seen in the brochure.
Ironically one of the most irritating aspects of trying on the caps was that my hair kept getting in the way! And then it was all static when I removed them.0 -
Good luck schoolmom!
michelle - sounds like the nurse doesn't want to deal with the caps and was purposefully trying to discourage you, from your description. I used my own personal extra velcro strap to go around the nape of the neck (velcro'd at the forehead), over top of the strap that came with the PCC's. This is what I would try if I were you. I hope you can work it out!
0 -
michelle-Don't get discouraged, I deal with attitude like that of your nurse all the time. It can be very frustrating. Remember they don't care as much about you, or your hair, as YOU do!!! Do what TYLM and Danctrancer suggested-bring your own strap or two. The straps are 2 inches X 24 inches. Go to the fabric store and buy 2 inch wide elastic banding and velcro. The velcro is two sided. Sew the hooked side to one face of the strap at both ends and middle. The opposite face/side of strap only sew velcro(non-hooked) at each end. I am trying to upload a photo to help with this. I have found that the caps grab the hair more when they are not cold. Hope this is helpful.
0 -
Thanks makingway. I've been watching YouTube videos and reckon the Penguin caps are able to fit a lot more snuggly than the ones I'll be using! Can't find any videos on Paxman ones though.
Unfortunately I don't have time to try and source Velcro straps now as I'm at the hospital every day till chemo starts anyway - tomorrow for my line to be put in and Weds for my annual haematology follow-up and late effects clinc. Well I certainly have developed some late effects of cancer treatment since the last time I attended - more cancer!
I'm not sure more straps will help as they just transfer the 'gaping' to a different area. I will ask if we can borrow the straps off the other unused cap covers though and give it a go. Does the scalp need to be a constant temp? I was wondering if every ten minutes or so I could apply pressure to the back, get it cold, then swap to sides and so on...
For anyone using PCCs who's looking for a good video, this seems helpful:
http://www.youtube.com/watch?v=m87LHfAYf9E 0 -
If you can't find specific velcro straps, an ace bandage would work if wrapped tight enough.
0 -
I'm not sure if the Paxman Coolers are used at various temperatures based on each patient's hair condition. I believe the Paxman Cooler is used at a higher temperature than those of the Penguin cold caps. I found a couple videos on the Paxman Coolers:
http://www.cbsnews.com/8301-504763_162-57418125-10391704/chemotherapy-without-hair-loss-cooling-cap-in-works/
http://local.stv.tv/edinburgh/295205-invention-could-prevent-hair-loss-in-cancer-patients/0 -
I think the first one is DigniCap but thanks, that's great to see. It looks more comfortable and better fitting than the Paxman ones!
0 -
Michelle, I have long hair and we practiced with caps at home all week before infusion. I had trouble with my hair catching in the velcro straps. The study coordinator at UCSF suggested I use a wig cap to go between my hair and the cold cap. Not wanting to bunch up my long hair into to wig cap, I fashioned my own hair protector out of nylon knee-hi stockings. I trimmed the tight band that's supposed to at your knee and the remaining stocking fit snugly over my scalp (like a beanie) and the little bit on the end was just enough to protect my crown. It was thin enough to allow the cold in and just perfect in keeping my hair from snagging. I do have a small head, so I'm not sure if this would work for everyone.
You definitely should get benefits from massaging the back side. We also knead our caps every ten minutes to ensure even distribution of the gel. Good luck, my November buddy! You can do this!
0
