Cold Caps Users Past and Present, to Save Hair
Comments
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Makingway, thanks for getting the word out, I just sent them a note too.
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Hi everyone,
What a gorgeous weekend here in the Bay Area. For those heading towards radiation: mine was pretty much a non-event. I did not experience fatigue at all, and at my doctor's recommendation used good old-fashioned corn starch on the treatment site about 6x/day. I had a long regimen with 8 intense boosts on top of it, and didn't have much red until the boosts. At that point I used aloe vera and it quickly turned brown. I didn't use prescriptions or lotions, just corn starch and aloe. Did not wear bras for the most part, just camis.
For those who had ACT treatments, adriamycin is quite harsh on your systems including pulmonary and liver function, but is not the hair-killer that the taxanes are. The taxanes are guaranteed hair loss days 14-21 of the first treatment. Adriamycin really weakens your systems, so the subsequent taxane-based treatments have more hair loss than the taxotere-cytoxan or taxotere-carboplatin. I remember when I was researching the caps, and the hair loss was more significant with the ACTs than with TCs. I believe there was a research study link posted either on the PCC site or the Rapunzel Project website.
Even so, the results will always vary individually, depending on hair type, hair condition (including dyes, perms, treatments, hair products used), chemo type, age, general health, diet, etc. So many variables. With the first US studies just concluding, I hope more will be done to delve in to some of these variables. I'm convinced PCCers detox chemo much more quickly than others, and therefore have fewer/less intense SEs, not to mention a more positive focus and attitude.
BPAs: that study was a shocker. I immediately got rid of my plastics. I just picked up a BPA-free coffee travel cup, and have used a stainless steel water bottle since I began chemo. The BPA does not need to be heated to be dangerous; it leaches into liquids and foods. Here in California, a law was just passed banning baby/infant bottles and cups with BPA.
Coping: In some ways, I think I'm just beginning to process what I've been through! That sounds crazy but to many women (especially PCCers) when I say this, heads nod. Chemo was an incredibly positive experience for me -- helping pioneer the caps and watching all of the positive changes my success had on others; clarifying so many things in my life; new friends and relationships that came from my journey, and re-connecting with some wonderful people from my past. I've always been a strong person, but my inner core is many multitudes stronger than ever. I trained in zen meditation many years ago, and resumed that as soon as I received my diagnosis -- one of the greatest gifts of this journey. And I've always been active, ate healthy, etc., but I've developed a new relationship with food: way more fruits and vegetables (7-9 servings a day), almost exclusively whole grains, high protein/low carb/low fat. I'm a foodie, so it's given me a new passion to refresh some old recipes and come up with new. Hardest part is forgoing wine with dinner, because of the alcohol-BC connection.
My activity level soared: I maintained my daily swim throughout all, dog walks turned to dog hikes (at least 3 miles/day), plus weight training, martial arts, biking, golfing. And I've moved to a new house so now tons of gardening too.
For all the positive things that have come from this battle, I don't want to go through it again!
One of the biggest challenges is with close friends and family. To some, the treatment (chemo, rads) is "behind" me and since I went through it looking and feeling mostly normal, I was treated as normal. But the truth is, some profound changes happened inside, and life isn't "back to normal" in any sense. I am still going through treatment with years more ahead of me, and I struggle with balanceing a healthy respect for the cancer that invaded me, versus fear of it returning.
Cheers,
Susan
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mdg- I still shed a lot- I am about 14 weeks past last chemo. Today, I washed my hair and got a light handful. It varies- some days not so much but today, yes. I still don't understand why but I do have some hair so I guess it is better than none.
Elizabeth
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You all have hit a nerve with me in regard to coping:
We are having some issues with one of our teens and the doctor asked my husband if he would be able to drive her to some school events.
He said he had done so much during my cancer treatment he was unsure if he could do that.
(How did I get into that equation?)
I am trying my hardest but I do not know if I will ever be close to what my former self was.
My biggest problem is the energy level and it has been 2 years.
I am still taking iron for anemia.
Thanks for letting me vent...
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Susan and Arlene: I agree that because we look normal that family and friends don't associate us with being sick. This is good in many ways but challenging too. We need support in many different ways. It feels like the field of oncology is just beginning to recognize this.
Ang- I think the women who have this disease with children they have to care of are hit twice as hard! How do you take care of your children and give yourself the attention you need to heal?l I am sorry your husband does not recognize this.
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Susan: Thanks for the positives. I try really hard to remain positive and try to do things right too as best as possible. I again now enjoy a nice glass of wine (changed to red versus white).During chemo and for months after, I had no coffee or anything that would further stress the liver. I do think often about a reoccurence but I look around me at friends who are high risk, with BC in their family and I even have a friend who is BRCA positive and these folks do all the wrong things, don't eat right, don't exercise and drink like fishes and NO bc for them for which I am so thankful. We just have to keep doing the best we can. Many of us have many years of treatment with the Armidex and I am only half way through with Herceptin.
Keep as positive as we can ladies. I had the depression after chemo and cried all the time and the doctor gave me zoloft which I never filled (just hate pills) and it has passed. Keep the faith ladies!
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Soccergirl, Arlene, Susan - thanks for making me feel 'normal'. It's only 10 weeks PFC (or something like that -i've stopped counting!). I know the steroids are still in there messing with my head. It's good to get a reality check on things. This little tiny panic is always there - and i look forward to it going away. Like you - i'm changing my diet, getting rid of plastic ... blah, blah, blah. It really is quite a job, isn't it?? I'm trying not to let this part consume me too. I've had cupcakes 2 nights in a row for my son's 12th birthday. Felt guilty both times. I need to look at the big picture and enjoy life. Like you said - some people over-do all the 'bad' things and nothing happens to them. i have to trust my chemo and hope it blasted the crap out of whatever was left. I'm a triple neg, so no more drugs for me. I'm actually kinda jealous that you guys can still take something to fight. I feel a little vulnerable without anything!!
It's a cranky, rainy day here in Canada... can you tell?? :>)
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glad to know I'm not the only one out there finding it hard with everyone thinking that all is "normal" now that i am done wth chemo. even with my hair loss I still have the people around me treating me like nothing has happened. I wil never be NORMAL. thanks for being here for me
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There is only the "new normal" Dexxy which includes forever being changed by the words "you have cancer". We are here for you and "get it"!!!!
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i agree. Everyone thinks this is over for me. I feel like if I go into detail I'm a 'Debbie Downer'!! I think more than anything I'm mourning the loss of my old life. The freedom and the lack of worry. It's like a death. I'm trying to embrace this new life - but it's difficult. I keep looking at my kids and hoping I'm still here for their graduations, weddings, etc. It's hard not to be dramatic - because it's so real.
I'm curious, what's the follow up for you gals in the US? I'm headed for a CT scan and chest xray this week. What happens on your side of the border? i live close to Detroit, so I often wonder if follow up is better over there and if I should go for a consult. I'm stage 1 - no nodes. triple neg. If anyone is similar, i'd love to hear what you're doing. I'm afraid to go on the other forums - there's some crazy gals out there!! At least everyone here is safe, normal and positive!
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Livcar: I was stage 1 too. My med on in Detroit offered nothing but follow up exams every 4 mo's. I moved to Chicago and went to Northwestern (NCI) and they offered the same. NO one will do scans or any tests on me. I didn't even get a blood test. I feel dismissed because I am stage 1. So I have all the same fears you do...will I be here for all the important events in my young son's life. It is a daily internal struggle....the only people I tell are you ladies here. No one else would understand. Maybe with being a triple negative you would get more follow up care...I don't know. I never even got a baseline scan of ANY kind at all. I did have a bone scan because I was having hip pain back in July and that was normal. The only reason I got it was because I pushed for it because I was in pain for quite some time.
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I had a mammogram 3 months after my lumpectomy. I have read that scans are not protocol, except maybe an MRI for the breast. I am not triple negative either, so there maybe more follow up.
I am recently married, finished chemo, have herceptin until July ( my fish scored revealed I am her-2 equivalent) and want to start a family. This part is scary because I will delay Tamixifn or pass on it next July. I hate the idea of being on medication and wish there were more books like "Anti-Cancer" that could measure natural ways of keeping cancer away. It is hard to feel " normal" when you are taking medication that alters your hormones or your immune system.
On a positive note, early detection for breast cancer is huge. Every day the medical community makes huge advancements. Here in Boston last week, a man had a hand transplant surgery. I was so moved by this story. There are so many medical miracles out there and they are only going to become more prevalent. This gives me hope and faith for the future of this disease.
We changed the face of cancer without the support of the medical community. This is a miracle too.
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Liv Car I posted results on this thread from a study over the summer done at Dana Farber Cancer Institute. The study was looking at a target therapy that could be used for women with triple positive cancers. I believe they will have more treatment options for this type of breast cancer soon.
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Susan - Sorry but I am living proof of the contrary. Adiamycin killed my hair, but with weekly Taxol, which is way mild than the DD, I began growing hair 21 days later. I agree with LivCar and Codysjudy, they must do more studies or at least surveys so we know what to expect.
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Since I'm in the midst of radiation not sure what my next step will be. Hoping for at least a mammogram. What should I request? Right now I'm trying to keep a balance of reality. I'm trying to eat right, take the right herbs and supplements, accupuncture every two weeks. Exercise t days a week and the key thing is lower my stress level. Thoughts and wishes of children are gone which is hard. Harder than I can say. I've not given up wine but its in moderation. I'm trying to work out this whole plastic bottle thing but my god I'm not rich, scary how exspensive the "healthy road" really is. What do people do???
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Oh Dexxy....you are so right! Why does it have to be so expensive to do it right. The plastic thing, I'm doing a bit at a time. Next week, I'll get rid of all my plastic utensils (spatulas, etc.) and replace with stainless ones and working on new pots and pans.
I finished radiation at the end of August and no tests at all and no one has suggested it. As a matter of fact, my BS said no tests on the affected breast for 12-18 months and from what I'm seeing maybe that is not so off the wall since many here are coming up with potential cancers and they end out being nothing but scar tissue. December is a year for me since diagnosis so my new onco says mammo and ultrasound and if insurance will approve it, MRI. I had pretty much a full body CT after diagnosis but insurance wouldn't approve a PET because of my Stage 1....my new onco wasn't pleased with that because of my HER-2+ but what you going to do.
BTW, how is radiation going? Hopefully as easy as mine except for having to go every day for a 10 minute procedure.
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You all are such a great support group!
It is sort of like your life is "new" and it seems to be taking me a while to adjust.
I just got another email from someone else interested in using the PCC's.
It's great to pay it forward.
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Thank You Laura5
I hope they get so annoyed that they'll finally post the truth!0 -
My followup routine: I see one of my three docs every three months: rads then MO then surgeon then MO then repeat. I had my annual bilateral mammogram at the 6 month mark (in keeping with when I'd normally have it), another mammo 3 months later, and I'll have my annual bilateral next month. Had bloodwork done last spring and will repeat next spring at my 2-year mark (wow! I can't wait to say I've reached that!) I have my Vitamin D level checked with that (at 2000 units daily, I'm just hanging in the normal zone but not by a lot. When I was DXd my measurement was 7! And I'm outdoors a lot, so there is clearly something metabolic at work). My insurance denied a pre-chemo MRI so I have no baseline; I did get a head, chest, pelvic CT so have that. The lack of an MRI is the thing that troubles me most in all this. My RO said no MRI for at least a year because I'm all lit up and there's nothing to be seen.
Right now, it's breast exams, monitoring, and watchful waiting. But mostly, living full. :-)
Arlene, I know what you mean about the unfilled prescription. I'm stunned by how much anti-depressants are pushed on those taking tamoxifen, even though I'm not depressed!
Ralston, LivCar, codysjudy: I don't disagree at all, more studies are needed!
Susan
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I try to be positive and live my life without fear. That means doing everything I can to take care of myself, and working on being positive. Fear and stress can only hurt your outcome. If I get cancer back, I'll deal with it then. For now it is something that has made me stronger and more willing to live for the day.
I have Kaiser insurance and they recommend a manual breast exam six months after finishing treatments, some blood tests, and then a mammogram at a year. Don't forget that some tests, especially CAT scans, may be more harmful than helpful.
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Hello ladies, Hope all is well with you. I met wiht my BS and MO last week and my follow up treatment is as follows: meet with ym MO 2 mths after starting Tamoxifen (I am starting in Dec) then meet with my BS 12 mths after my last mammo so April 2012, she said i'll have to do blood work before the mammo. I am also meeting with my primary care end of the month.
As far as Radiation goes, my skin so far feels normal apart. I noticed a little bump on my underarm the scar/area where i had the Sentinel node biopsy, i am not sure if its jsut a skin reaction or something else, will check with my RO when i see him on thursday. Other than that, i still have the muscle aches on my legs, thighs and arms..this results to me feeling so tired most of the time!! and ofcourse my schedule (working Full time, kids etc) does not help.The aches also makes it so hard for me to exercise, i try and walk as much as i can but would love to do more.
Hair - i think my eyebrows have started to grow back, i did not lose lashes thank God. I really want to trim off and cut the damaged/relaxed/permed hair and start growing natural hair. My plan is to wait till i finish radiation but i am so sick and tired of my thin ugly pony tail!! i tuck it under but when i opne and look myself in the mirror its just so depressing... I used to have long thick healthy hair and now, my hair at the abck is short and the long front hair is thin and looks unhealthy!! Does anyone know as per the PCC protocols when i can cut my hair and color? I had no gray ahir, but since chemo they started coming out and ofcourse i have abt 5 strands on my front right side!!!
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Hey Snoopy - I have the same thin ponytail, when open it's the world's worst mullet! I know I should be grateful that hair is growing, but i'm still a little put off that it's gone in the first place!
Soooo ... remember when I was asking about scans and post chemo follow-up? When all of you responded without scans, it got me to thinking... I called the onc, and found out they made an ERROR. I was supposed to have an ultrasound (less radiation), not a CT Scan. I'm really upset. If i hadn't of thought it strange, i would have gone tomorrow. Thanks for the response ladies. You helped me avoid unnecessary radiation.
I've met with a naturopath, and i'm very overwhelmed. If i follow the recommeded diet, i'll spend all day preparing things like mung beans (!!??). This diet is a job. I need to enjoy life. I'm eating veggeis and fruit, all organic, hormone free products, minimum sugar, reducing plastic. But she's recommending, no dairy, no sugar, no alcohol. I felt guilty having cake for my son's birthday. Please tell me there's a happy-medium somewhere here. If i follow this to the letter, i'll feel punished.
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LivCar, I guess I feel that although you can try to control almost everything in your life, sugar, dairy, alcohol, plastic, the list goes on, you still are not in control of what might happen to you. I say eat, drink, and be merry - in moderation of course - and enjoy life!
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LivCar: Just remember, this is a journey about living, not a journey of not-dying! Eat well, not too much, try to eat local and organic and unpackaged where possible, mostly fruits and vegetables, but savor the extras as they come along. Especially your child's birthday cake -- enjoy it extra! I turned my supposedly-bland chemo diet into a fun journey by trying new combinations of things and quite a few have been keepers.
I'm now one year PFS (post-final shedding) and am happy to announce that for the first time in a year, I can pull all my hair into a ponytail. The regrowth above my ears has caught up with the rest of my hair, so no more wings. If I hadn't used cold caps, it'd have taken a good 3 years to grow my hair back out.
Cheers,
Susan
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I feel very fortunate that my follow up has been pretty aggressive. I had an abnormal mammogram and an abnormal MRI about a month after finishing chemo. Then I had a biopsy to see what was there if anything and based on the results they thought it was just scar tissue. However, I knew I had to have a reexcision to get clean margins which I had about a week and a half ago and the path report showed there is still more LCIS in there. They still didn't get clean margins. Not to be an alarmist but I think we should all insist on follow-up mammograms within 6 months of chemo. The sooner the better.
Now I'm debating a BMX since I'm so worried that there may be ILC on the other side of the LCIS that they can't see. I'm also worried about the ILC and IDC coming back - more so than I have ever been. No test is perfect when it comes to lobular. I just want peace of mind.
Also, I am 9 weeks PFC and still shedding quite a lot. I hardly lost any hair while doing chemo but boy am I losing it now. My eyebrows got really sparse but I was using latisse on both them and my eyelashes and they came back with a vengeance. I had them waxed today. question - when can you start using mascara again? I would really love to!
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Hello cold cap users,
I have been looking into these caps as I start chemo next week. My question is this: how did you keep them cold? Did most of your hospitals have freezers or did you use dry ice? How large of a cooler does one need to use dry ice?
Wishing I didn't have to lose my hair.0 -
AbqTiger, You don't have to lose your hair, the Penguin Cold Caps work. As far as the freezers go, I contacted www.rapunzelproject.org. (a nonprofit created to help get freezers into hospitals). They donated a freezer to my facility. My facility drug their feet a little, but I told them I would go to another facility because I was definitely going to use the caps and the donated freezer. I would contact Rapunzel as soon as possible as it takes a couple of weeks to get the freezer to your facility. I know that a lot, probably the majority of people used coolers and dry ice which also work well. You will receive instructions for either method when you receive your Penguin Cold Caps.
Good Luck!
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As far as mascara...I wore it all through chemo and after. If you want something gentle, aluminum and free of bad chemicals and that comes off easy, try Physician's Formula Organicwear mascara (you can get it at places like CVS, Walmart). I wore this through chemo because it came off super easy with just water. It was not the best mascara but I was looking for something chemical free that would be easy to remove without stress on my lashes. Post chemo I switched to Tarte's mascara. It is much better. I wear the one that is not water proof. It works well and is also free of bad chemicals.
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Annie: Once i started taking iron, my shedding has lightened up. I am 26 days post PCC and know anything can happen. I don't want to assume my shedding won't get bad again, but it is much better for now. I also am using a conditioner with keratin ( Paul Mitchel) to treat my dry hair. I want the hair I saved to look healthy and I use the treatment on the hair below the ears everyday. I follow up with Ojon Dry Recovery Leavin conditioner, and organic curling creme. I have added apple cider vinegar to my shampoo and wash two or three times a week. I feel like now I need to strengthen and repair the hair that was exposed to the chemo. I am going to air dry for another 3 weeks and then I plan to blow dry my bangs and flatiron them. I take a shit load of vitamins too.
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Thanks for the reality check ladies .. .Susan - very powerful what you said about 'not-dying'. I get it. Moderation. I'm hoping this panic is part of my homonal imbalance. Steroids, the disappearance of my mentstrual cycle - i think it's all taking its toll. I'm glad i have all of you to chat with. My friends are wonderful - but the standard reply is "be optimistic". Great advice, but not when you know they don't know what you're dealing with. It always resonates more from you gals! thanks!
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