Cold Caps Users Past and Present, to Save Hair
Comments
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Soccergirl: Yes, my old hair grew as quickly, so I trimmed so the new stuff could catch up.
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Herbatint hair color has, no AMMONIA, ALCOHOL, CHLORO OR METHY RESORCINOL,
PARABENS. What do you think about using this during chemo and cold cap use to cover roots etc if applied gently and not to scalp?0 -
Maria- you new look is really nice, you look beautiful.
This friday I will be 24 weeks PFC. I stop shedding on my week 12 more or less. I am using warm blow drying, still using my curling iron in low setting. I have a lot of hair growing, its about 3-4 in. In the nape of the neck is the only area that it coming back curly the rest it's normal. I am due to color my hair in couple of weeks so I will post new pictures. I am still using one set of hair extension for fullness on my side of the neck, the rest of my hair all around looks normal.
I lost 50-60% of my hair but now the new hair it is giving me a lot of fullness except for the nape of the neck where I lost the most.
I lost new eyebrows on week 6-7 PFC but came back in couple of weeks. After that I lost my eyelashes but they grow really fast, and now I have more than before. I only used "Smartlashes" for 1 1/2 month.
The good thing is that no one can really notice the difference.
For the new ladies- Please have Faith, it works.
Tiki0 -
I meant to say: I lost my eyebrows on week 6-7.
I have meet new people while getting treatment and recently one lady gave a compliment about my hair. My hair is starting to look more like before.
Tiki0 -
I COLORED MY HAIR!!!!-NO ILL EFFECTS. It almost looks like it used to before chemo, just maybe a little less full. It had been 4.5 months PFC and I had blackish grey 3-4" roots and then very dry light faded out brown hair. Since I had no shedding for past 3 weeks I decided I was ready to do the big step of coloring. I have wings on the side and very short little bangs along top of my scalp, but they don't show since my old hair, pre chemo covers the wings up. I went to a professional colorist who used to color my hair- I don't trust myself with this, and he washed it with cool water and blew dry it on low cool air. It has been 4 days now and no ill effects. He also used a conditioner Bumble and Brumble which definitely helped it to be shinier. .However, I plan to use the natural products recommended on this list in the future.
Will keep you posted on the other scary issues for me -hopefully my heart is returning to normal since they stopped herceptin and I can then get the reconstructive surgery finished. I am seeing a cardiologist specializing in herceptin and chemo effects on heart Dec 14.
Good luck to all of you embarking on this journey. All the hassle with the dry ice, etc was worth it. I still use my satin pillow cases.
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Goodness Serenity...another one having problems with the Herceptin. How many treatments did you get so far? I had my MUGA this morning and hoping all is fine....still have the palps on occasion though.
Flushing all that stuff from my system from the MUGA now.
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Hello all...I will be starting chemo (TC x 4) on December 22, using the Penguin Cold caps. I have a couple of questions: my local dry ice supplier can give me pellets or slabs. Aren't pellets easier to deal with? Also, I see in earlier entries that some have put the caps into oversized zipper bags instead of the boxes as instructed. Any guidance?
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I had my first of 4 T/C plus Herceptin for a year on 11/4. Like a lot of you, I felt fear, anxiety and a lot of anger. I had no reservations about cursing like a sailor at bc. And at times I asked my self, "why me". But the answer that always came back to me was, because I can handle it. We all can.
I am so thankful that I found the PCC system - I've had two infusions so far - and my hair looks normal - aside from the gray that I can't cover. I'm not sure how the next two will go - but the fact that I still have my hair with very minimal shedding and no bald patches is a great comfort to me, and hopefully will be to others on this blog who are gonig through this are getting ready to. The frist one is the hard one. But after that it does get easier and it is doable. Stay hydrated! Keep moving! Eat good food! Rest when you need to! and laugh. My husband is my PCC helper - and he makes me laugh constantly. It helps a lot.
I'll be 50 in February, with my final infusion behind me in January (God willing) - never thought I'd be looking so forward to the big 5-0!
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Ckk~ I used a little of both ... Pellets and slabs... I put the slabs on the bottom of the coolers, and pellets around the boxes. Have to be careful about using ziplocs and caps in the dry ice... It can damage the caps... But I had my helpers get two caps ready at a time and would put those on top in the cooler with a towel underneath while waiting for a cap change... The caps seemed to get more evenly cold by doing this too....good luck... The first one is the hardest... I think the "unknown" of it is what makes us anxious... By the second one you will sail through......
I so agree.. Try to laugh as much as possible....Megamind, the movie was coming out when I was in chemo...ths of course became my nickname....those PCC caps make you look lie a Megamind....:-)
Good luck to all!...I keep saying it ...so so happy I sed the caps!!0 -
ckk,Did you know there is a nonprofit organization (founded by a PCC user) that donates biomed freezers to cancer facilities? They donated one to mine. The website is: www.rapunzelproject.org
I just finished my LAST treatment, TCH x 6 with all of my hair
You can do this, good luck!
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Ckk: I think we all have to find what works best for us. We stored our caps in the baggies but on the dry ice they went directly (I used the ElastoGels versus the PCC) and they were the temp they needed to be. We only purchased 5 and no problem swapping them out and keeping them to that -38 degrees. Brrr! we couldn't get the pellets so used the slabs and hubby broke them up with the ice pick...goodness I finished 6/6 and seems so long ago but then radiation and now the Herceptin keeps it all fresh in the mind!
Good luck to you all starting out and keep coming on for reassurance and moral support. It is easier than you think starting out!
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ckk- I recommend using both slabs and pellets. I used the slabs above and below the boxed caps and pellets in open ziploc bags around the sides. The bagged pellets are much easier to manage when taking the caps out and putting them back in the coolers. I also bagged the slabs because they were easier to handle that way - especially as they might break apart as the day goes on.
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For the ladies on Herceptin- I am on Herceptin also and taking CoQ10-400mg daily it is recommended for the heart.
Tiki0 -
Thans Tiki, I will get some CoQ10.0
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Thanks, all for your comments. I have about two weeks until my first treatment and want to make sure that I am as well prepared as possible. I should receive the caps by the end of the week.
I have been trying to wade through the many pages of this thread and glean what I can from all of you helpful women. It occured to me that if people could post something like "My top 5 tips for using the cold caps" - things that only come from your experience - it would be of tremendous value to those like me just starting out on this journey. I would love to pay this forward to all of the women who will embark on this road after me. So, if you're willing, please post your wisdom!
Hugs to all :-)
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ckk, Here are a few pointers:
1.If you have a big head, get the extra gold band and also order some gel bands. These will help you keep the hair around the hairline. If you use dry ice, 4 will get you by, but if you use a biomed freezer, better order 8.
2. Watch all of the videos of ladies with their caps on, there are several on the Rapunzel website I posted a link to above. These help to see how to position the caps, bands etc.
3. Fold the 2 front ends in and velcro before popping the cap on your head, then re-position these front ones once you have all the back velcro in place. This helps to get them level on your head.
4. Have your helpers do the same thing each time, they will get really good at their spot.
5. Make sure to wipe the caps with a towel before placing on your head to prevent frostbite.
6. Take an alieve before you start. The first cap is the worst, but only bad for about 5 minutes.
7. Don't panic if getting the first few caps on seems crazy. It will become routine in no time.
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1. Take ativan before chemo
2. Change the part on your hair with each cap to avoid bald spots
3. Massage the caps throughout
4. Use extra thick mole skin0 -
1. Warm tea or soup (hope they let you have that in the room!)
2. Warm Blanket (can you tell I got very cold?)
3. May want to apologize to your helpers beforehand if you might yell at them because the Caps are too cold.
Just my experience.4. I took ativan before chemo also.
5. Know that we are thinking of you...
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Great tips. Would have been so helpful to have this. Thanks for requesting, ckk!
I'd add:
Make sure the aides of the caps are tight to your head. Done by readjusting the front flaps and making them point more up. Use the straps also to get the perimeter of the cap tight.0 -
my first chemo treatment is next tuesday dec 13th and I will be using the cold caps. I am not sure what to expect I have been hearing that im not able to wash my hair more than once a week if im using the caps, is this true and if so why is that? if anyone knows the answer id appreciate it. Also i dont have breast cancer I have ovarian cancer so I hope im still welcome to ask questions here. And im only 18 so my hair is very important to me so please any tips on using the caps would help!
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Amber you are welcome to ask as many questions as you like! Please hang out with us. I am so very sorry you have to go through this. What chemo will you be on? How many cycles?
As far as not washing...it is to help prevent losing more hair. You will need a sulfate free and paraben free shampoo and they suggest deodorant without aluminum too. You should air dry your hair...no hair dryer or heat on it. Oh and wash hair in cool or cold water...it is not that bad. You get use to it.
I have pictures on my blog of my hair. I posted them in late August or September if you want to see my results. I also have posted pictures a few times on this thread...most recently last week.0 -
Hey Amber~
Everything that Maria said...
Please know that it does not matter if you have breast cancer - we will offer you support whenever you need it. This is a great group.
I was able to keep all of my hair except right under my ears. I think it depends a lot on your chemo regime.
Hugs to you.
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Was your oncdr ok with using the CoQ? I wanted to take milk thistle to counter chemo effects - but she said no on that one. Could be apples and oranges - thanks for the tip - the Herceptin scares me more than the T/C.
Take care!
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Amber -also let us know where you are at in case anyone is nearby that could help you with the caps.
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amber, I would just like to add that chemo is very drying to the hair, so the limited washing will not be a problem.0
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For those of you just starting out...get an electric blanket for cold cap days. It worked great and I was not cold at all.
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Question: I am almost 11 weeks post chemo, my nose still runs like crazy. Do you ladies have the same issue?
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1. Wash your hair three days before your first treatment, then not again until three days after.
2. Take a pain pill an hour before you start. When my husband put the first cap on my head, all I could think was "this must get better as no one could tolerate this for hours." It lasted about 5 minutes. . . . . a long 5 minutes. I thought I was going to throw up on the second one. On the second round when I took the pain pill I accused him of not getting them cold enough!
3. Tell your chemo nurse you took the pain pill. Didn't realize mine had Tylenol in it so she fussed at me after she gave me Tylenol. No harm no foul. Just remember to tell her.
4. Use a heated blanket. HUGE difference. I bought a heated sherpa type throw from Bed Bath & Beyond the day before the second treatment -- almost didn't because I am so sick of spending money on this, but wow! What a difference!
5. Move your part around.
6. Take Ativan pre-meds and eat before you go. You should be icing your mouth, fingers and toes before and during the Taxotere which leaves little time to eat. Something on your stomach will help with nausea.
8. As Mr. Howard said, there is no way to get every cap perfect every time so don't panic. Just do the best you can and know the system works.
9. Drink water the day before the day of, during and the days after. Drink until you can't drink anymore, then drink some more. I'm drinking a gallon a day easily.
10. Exercise, even if it just a walk down the block. Getting your heart rate up helps your body get rid of the chemo.
11. Wear a cap straight from the freezer for an hour three times a week (I just saw this recently). They arent bad out of the freezer. I put one on yesterday after I exercised while I sat in a warm bath.
12. Don't let all those people who are going to tell you it doesn't work get you down. It does!
Remember: you aren't doing this so you will have darling styled hair for New Years Eve. You are doing it so you look cute next 4th of July!
Don't worry about the washing. The chemo dries it out so much you can't really tell. I'm on day 9 (didn't time the pre-chemo washing right) and it looks fine.
I didn't have the runny nose thing -- my chemo nurse said that it can be caused by taxotere.
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Soccergirl: Herceptin makes my nose run! Speaking of which, it looks like I'm done with Herceptin. My EF has dropped to 50 and he's concerned since I've had all the palps. I mentioned that I'd seen studies that perhaps 6 months was as good as one year. He replied that the one year is just a period of time they came up with.....they did no studies on it and don't really know what timeframe is good - that is rather depressing in a way because how they even (guess they don't) know the year is even sufficient.
On another note, looks like there are 2 new drugs out now for the women with mets that seem to be working extremely well - hooray for more great strides!
Arlene
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Lady Grey,
Do you wear the cold cap 3x a week for 1 hour just on chemo weeks - or every week? Also, where did you see this?
thanks!
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