Cold Caps Users Past and Present, to Save Hair
Comments
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Today at the news they mention about BPA,
Arlene- only few more months for your hair to grow, do you still shedding?0 -
Hi Wonderful Cold Cappers:
I haven't been here in quite some time as I took a spontaneous and unexpected trip, followed by attending the Healing Odyssey retreat this weekend and I have to admit.... it was a life changer! I came back having found ME! It was just what I needed and I feel that I can move forward with my life again. If anyone is able to go, I highly recommend participating as it had a profound impact on me.
I am now 13 weeks PFC. I have been washing my hair in warm water daily with Morrocan oil shampoo/conditioner (paraben and sulfate free), not shedding as much, but shedding a little. I am noticing new growth, not as much as I would like, but still may be too early to see. My hair is coming back in my natural color which is a dirty blonde. I look forward to blonde highlights at some point. I plan on a lighter base color in December if I can wait that long. My eyebrows came back very thick and very dark, darker than pre chemo, my eyelashes are still coming back, not as long yet, but back none the less.
I guess I should be going through my cosmetics now and checking for parabens etc. Also clearing the kitchen of plastics in stages is a good idea.
I started tamoxifen a few weeks ago and cannot believe how incredibly dry my skin is. I have only been taking 1/2 a tablet per day and will start full strength this week. This is adding to the aging effect. I slather moisturizing lotion on my arms, legs and hands, but they need more. Skin is turning crepey. One thing after another.
Serenitywisdom: I opted out of additional radiation as well. I am in a gray area and the decision was difficult to make, but I am going with it. You are not alone.
Hope all is well with everyone.
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Hi Tiki: No my shedding stopped about a month ago...HOORAY!
DebRox: Where'd you find out about the retreat? I've not head of any and I think it would be wonderful. Ah, the dry skin so that is why my legs are so dry....from the Arimidex. Good lord, what will we look like at the end of 5 years and I'm one of the old ladies here so I'll be a mess.
Sounds like you had a great time and I'm so happy for you!0 -
Arlene: I found about Healing Odyssey on a forum here - maybe in the moving beyond cancer section. A member mentioned it in a thread and I checked out the website. Here it is http://www.healingodyssey.org/. I HIGHLY recommend it!0
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Here is the website I have been finding some helpful information on what to avoid:
http://cincovidas.com/toxic-truth/
There are a few sections worth reading....I have a print out of the 24 chemicals you should avoid and I am bringing that with me to our local organic make up shop. I have found a few items that that don't contain these products but not complete make up yet. I hope to do this in the next few weeks.
I also went out and bought all new cooking utensils that are BPA free. I have to part with my plastic spoons/spatulas. I did find some silicone type pancake flippers and some wooden spoons. I have not found everything yet. I have some metal spoons but it will scratch my non-stick pans. I guess I should opt for all stainless and get rid of those too. It's never ending.....
Deb Rox: So glad you are back! I was thinking about you and want to hear all about your trip! You sound great!
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Thanks DebRox: I'll be checking it out. Sounds wonderful!!!
Maria: I'm on a mission and every week, I replace more and more items...the pots will go soon and I'll have all stainless. Again, my hubby thinks I'm a little over the top but he'll just have to deal with it! Love my new stainless measuring cups....much more to come!
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Hey all~
I switched to Sea-Chi for my face cleaning regime as they are all natural products.
Along with my hair products. If you order products before Wednesday and put the code "LIBRA" in at the end you will get 51% off. FYI.
Also switched my make-up to 100percentpure. The eye shadow is made up of berries and I tried to get my teen daughter to try some. "Mom, you will be walking around with bugs clinging to your eyelids." Now that would be a sight to see...
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I feel like I keep replacing things...next is all new BPA free plastic storage containers for the pantry. I have some tupperware but they need to go! I still have one plastic colander that needs to go too - think about it...draining pasta in it with warm water...heelllooo BPA! I feel like it is never ending. I am also looking into a water purifier for our new house...I am sure that will cost a fortune. I just can't believe the FDA allows this cancer causing crap in EVERYTHING. Did you know they are looking to ban BPA in Sweeden??? I wish I lived there.....how wonderful that would be...a BPA free world!
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I have been on the phone with many cosmetic and hair companies. Many of them are refunding me. I think you should all call the companies and tell them you have BC and that their products are linked to it. Most companies will refund you are give you a coupon for a product that is safe. If we all demand our money back and tell them it is not ok to put poison in our cosmetics and or cookware, things will change! Many of these companies have the Susan G Komen fund written on their site. Make the call, you will get money to buy new safe stuff!!!!!
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Hello ladies. I had another question.
have used the cold caps for 2 treatments now, and it seems that I am not getting coverage on the front sides of my face (sideburns), behind my ears, and the nape of my neck/the whole edge of the hairline. After I am done with the caps, I can feel that the other parts of my head is cold, but these parts are not.
I do have a large head, and the thick curly hair along the back and sides. (However the hair on the top of my head is less thick and freezes well.) I have tried to resolve this with different techniques, but it just seems like the caps are not long enough to reach these areas on me.Anyone else have this issue?? Thanks so much!!
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Cylander: I think most of us have experienced this issue. Many of us used velcro straps to tighten those areas but heads larger than the caps seems to be a problem too. My EGs fit fairly well but weren't long enough in the back and I lost my hair all along the nape and some around the ears too. Don't give up though!
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Hi Arlene. Thanks for the reply. I guess I need the XL Cold Cap! Oh well. If I am able to keep most of it I will be able to work with it. It's better than being bald-which I've experienced. Maybe I could do one of those 90's long on top shaved on the bottom hair styles?
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Hi Cylander, this fit was an almost universal part of the PCCs (can't speak for Elasto-Gel caps). I used three straps to tighten as best I could. I had light overall shedding but lost more above the ear (one ear especially for some reason) and a the nape. I did not notice I'd lost hair above the ear or at the nape until it began growing back. Since I wear my hear down, it was never noticeable to others (and, honestly, not very noticeable to me. I had to take a photo of my nape to prove to myself I wasn't imagining the difference!). I've had a spell during regrowth where I had a "wing" like phenomena above one ear :-) but it has caused me no distress.
I was one of the early users and Frank refined the cap a bit just as I was finishing treatment, so it had more/denser gel above the ears and at the nape, but those are very warm parts of the head. You'll be fine! It feels much more noticeable to you than it really is.
Susan
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I don't have a large head and I still lost a little at sideburns, hairline in front, temples and nape of neck. I finished chemo the first week of May and now in those areas my hair is about 2 inches long. I have long hair so I am able to blend it in and no one can see it unless I show them. If that's all you lose it will be OK.
On another note - I colored with a stronger color for the first time yesterday. I used a ammonia free color that lasts for 28 washes. It covered a little better than the no ammonia/no peroxide color and I noticed no additional shedding or issues.
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cylander, order the extra gel bands asap. I also have a large head and thick hair. The bands are filled with the same gel as the caps, and are changed with each cap. You won't need as many though, because you can place them back in the freezer each time and they cool fairly quickly. I ordered 8 of them. Good Luck.0
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is it OK to wear a wig after completing PCC and chemo. when the hair isnt looking great.. roots, etc.?
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I would avoid a wig if you can. Did you keep most of your hair?
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Hello lades! Its been so encouraging to read about your experiences and your challenges. I want to get as full a picture as I can in using these caps.
I have a few questions about hair care. I have very a very oily scalp. I've been reading that some of you only wash your hair 1-2 times a week. I have to wash everyday, or it looks dirty. How do you manage this? What about using a dry shampoo? Since you can't use hair dryers, curlers, gels or other styling products, how did you wear your hair?
I've always had fine textured, very thick hair. In the last few months however, I've been loosing a lot of hair, and I'd say I now have an average amount of hair. I suspect I am in the early stages of menapause, as my periods have become irregular around the same time. I am 47. I find my hair everywhere, and have to clean the shower drain after every shower. Given the shedding factor that ocurrs during the chemo/cold cap process, i'm wondering if this will mean I will have even GREATER shedding?
Did anyone else have shedding they began, and if so was your post chemo shedding worse?
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I havent started chemo and PCC yet - next week. I bought a wig just in case and now thinking about whether I should wear it if needed... during or months after chemo/PCC.
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Hi LeesaAnn, I too have oily hair. For the first week after chemo #1, washing only once/week was uncomfortable. My hair felt oily, and be warned that the drying effects of the initial chemo cause some flaking of the scalp. (For some women it's also itchy and tingly.) It looked like unwashed, drandruffy hair for about a week. I did rinse every day and used a wide-tooth pick-type comb, but it wasn't the same as a wash.
In the second week that calmed down, and by the third week the drying effects of that first chemo took hold and my hair actually began to feel normal. As chemos progressed, it felt drier and I used conditioner 2-3x week on the ends when I rinsed. Some other women also recommend Kendra leave-in conditioner.
In other words, the oiliness will be offset very quickly by the drying effects of chemo.
I've always been a heavy shedder, so when I began my first shed day 14 after first chemo, I collected the hair in a baggie. It was heavier than my normal shedding, and startled me because I didn't know whether the caps would work or not (I'm an early user and didn't have this huge-ginormous network that now exists. To me it was a total crap-shoot.) It felt like a mountain of hair at the time, but ultimately amounted to about a sandwich bag full of hair. Fwiw, I have thick wavy hair and had TCx4@3. I wear it down, and did throughout chemo. I lost the most at the nape of the neck and above one ear. There was white skin at the nape, but no bald spots anywhere else. In fact, in front I didn't even realize I'd lost hair until the regrowth started. It wasn't noticeable until it was long enough to be at the "wings" stage. The new growth came back CRAZY fast. In fact, in one year the new growth has caught up to the old growth.
I shed for about 4 months PFC - it wasn't worse but it wasn't lighter, fairly constant throughout. I wasn't anticipating shedding after about 3 weeks for some reason, but as the shedding continued I realized that's why Frank insists on the 6-month hair care protocol. Now, of course, I know it's normal.
I am exactly one year post-final-shedding, and my hair looks beautiful -- almost looks like it did before chemo. The old and new hair both grew in very curly, now the growth is relaxing to it's normal waviness. The funny thing is that I shed all of my grey hairs during chemo and they regrew with my regular hair color. (I don't color my hair.)
If you like, I can email you my PCC writeup and before/after pictures so you can see.
I am attending a big award ceremony later this fall, and got my ball gown for it today. I tried it on and thought "This dress needs an up-do." And, I can! Made me feel great.
Susan
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rik: odds are very good that you'll never need that wig. Put it in a drawer as back-up, then forget about it and keep yourself focused on this very positive part of the battle. In retrospect, keeping my hair was a visible sign of my success over cancer. And it gave my circle of care a very positive, visible role in my survival and wellness.
When I was first diagnosed with cancer and began pondering all the "what ifs" of treatment, SEs, etc., I had a good hard chat with myself. I had no way to predict what would happen (I was a new user of the caps so had no idea whether they worked or it was some sort of hoax!), in terms of any SEs including hair loss. Though I was scared, I physically felt fine, in fact as good as I'd ever felt: I had my energy, I didn't feel sick, I had my hair. I decided to enjoy every single moment, because I didn't know how many there'd be. After my first day of chemo, I expected to feel like I'd been hit by a truck. I didn't. I was tired and my neck was sore (from the caps all day), but I otherwise felt fine so went swimming and hiking. The next day, the same. And the next day and the next day. And so it went. On my worst day I probably felt 90% of normal! Your nurses will give you many tools to battle every kind of SE. Pills, diet, acupuncture, meditation, vitamins, yoga: use them all as needed. You are the one who has discovered how to allieve the SE of hair loss (unless you're at one of the few cancer centers where they've become part of the protocol already) so stay positive. Enjoy those warm-water hairwashes while you can -- it'll be a while! that was the hardest part for me -- and start hydrating and exercising now, to help your liver and body be strong and ready to handle the detox process.
Cheers,
Susan
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Hi all you strong amazing women,
I just got back from Los Angeles (first trip on airplane since this whole thing started last December). It went fine except for the more extensive pat down at airport which was kind of wierd. I set off alarms with total hip replacement and maybe TE.
I am now 3.5 months PFC and shedding is really slowing although my scalp still itches. I have 2 tone hair-desperately need color but am still afraid to do anything. People think I am just going natural ( greyish black not so nice but hey I have my own hair. My new sideburns (where cap did not touch) are growing but luckily the longer hair covers them.
I wanted to share some good news with all of you. I had a mammogram this week on the other breast and am cancer free in that breast. I actually started crying after I got this news. So now if all is ok with the MUGA or echo this week and cardiologist says it is ok, I will be having breast reconstructive surgery next Friday. I am looking forward to a "new normal" for breasts. Best of all , the insurance company pays for the breast reduction on the other breast.
This week I had herceptin infusion and told my infusion nurse (whom I had never seen before) about using cold caps and my success with the caps. She said " I am glad it worked for you." I could tell by her reaction that she was not enthused. I think the nurses think I am the rare exception since no else at my clinic has apparently used them and people are still not being told it is an option. We have a lot of education to do.
Hugs to everyone.
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Rik, You have to do what feels right to you. If wearing your wig makes you feel more relaxed and beautiful, by all means wear it. I didn't wear mine much, by I did for special occasions and I felt great. It does pull a bit, so be gentle, but go out and feel glamorous. Feeling great and thumbing your nose at cancer is a great feeling not matter what you do to feel that way.
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I've had long, curly/kinky hair my entire life and thought I loved it but since cutting it really short, I'm getting so used to the short easy to work with hair. Hop in the shower, quickly wash it, dry it in a hearbeat and poof I'm done and it's still thick. I want it a tad bit longer but so love the ease of the shorter hair.
On a sad note, my eye doctor says I have macro degeneration which was probably caused by the radiation. Good grief there is no cure for this disease. I'm on special eye vitamins and praying they keep it at bay!
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Arlene: Is that common? How scary! I have had a full week of radiation. I can"t wait to be done.
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This week will be 6 months after completing chemo for me. I just wanted to post a photo for those of you gals going through chemo with caps or thinking about doing the caps. Here I am - back to my normal hair styling routine:
I am wearing one small set of hair extensions - not for length but just to thicken up the ends of my hair as it is much thinner than it was pre chemo. I think it is more noticeable when your hair is long so I wear one clip in extension. You can see a little section of short hair near my hairline hanging down on my forehead. I lost a little hair all around my face - hairline, temples, over ears and at nape of neck. The hair is about 2 inches long now in all of those areas but I am usually able to hide it under the rest of my hair. The hair growing back at the nape of my neck is super curly but only noticeable when I wear my hair in a ponytail. I am very thankful for cold caps and would use them again. It was super stressful worrying about my hair, but now I feel more normal. If I had not used the caps my hair would probably be 1 1/2 inches - 2 inches long right now and I would still look like I was broadcasting that I had cancer. I am moving on with my life. We moved to Chicago two months ago and no one here would ever know I had BC and went through chemo unless I told them. Life is getting back to normal. Just wanted to share.
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soccergirl: I don't think it is common at all and you shouldn't worry. I hesitated posting this here because I didn't want others to worry but one thing I would probably do next time and you might want to ask is for something to cover your eyes. I guess I worried about my eyes during radiation due to the scatter as I always closed them but guess that wasn't enough. I'd almost venture to guess that I might have gotten this anyhow. If my bc comes back, I'll be getting both breasts removed and not have to deal with rads. You'll be just fine soccergirl.
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Oh Maria: Beautiful! Your hair looks great!
I lost all my length and got my hair chopped off in a cute little pixie which my hubby loves and folks here (we moved to Florida from NV) who didn't know I had cancer just thought I got a short cut. Goodness, I'm getting to like it too.
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You look great Maria!
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Maria: you look so great! When did you start blow drying and using a flat iron. My shedding is light but i am only 5 and 1/2 weeks out. Does this mean I am in the clear or can I expect heavy shedding again? It has been very light for over one week.
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