Cold Caps Users Past and Present, to Save Hair
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the neuropathic damage actually occurs at the level of the spinal cord- not the hands and feet. If you iced your hands and didn't get neuropathy it was probably luck. I thought it prevented neuropathy too until I read a journal article about it. I heard it does help prevent nail changes though! I got neuropathy all the way up to my shoulders so there's no way icing my hands and feet would have prevented that. It went away after several weeks though. What's left doesn't bother me. Funny though, I didn't have nail changes either. They looked great and grew all during chemo. I have a thin vertical line across each nail that represents each chemo. They are almost grown out. I almost kinda liked that line. It reminded me of what a fighter I am.
I just could only stand so much misery during chemo. Cold capping was bad enough. I wasn't about to stick my hands and feet in ice water just to save mynails.
I'm thinking of getting a small pink ribbon tattooed on my inner wrist. A permanent reminder of what I fighter I am. I'm mildly concerned about lymphedema but I only had 4 nodes removed and I haven't had any trouble at all and I've been pretty tough on my right arm. I could put it on my left arm but that's not the cancer side. I'm still thinking about it though. Anyone else thinking of getting a tattoo? The funny thing is I'm not into the whole pink thing and how breast cancer "awareness" is marketed. (What is breast cancer awareness, anyway? I think we all know what it is!). You probably won't see me at a Susan komen run, either. But a pink ribbon tattoo? Hells yeah! Sign me up!
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Meow, yes, I had the same thing with legs rubbing together.lol. I always had skinny fitted legs and suddenly I felt them rubbing together. I can't figure out if my swelling on the top where I felt rurubbing gone..maybe I am just used to that feeling. Swelling on the bottom still there but better. I wear compression socks a few hrs during the day and at night. I think it helps... I think my muscells above the knee biger now. I thought they swollen but nurse said it muscle. Can it be from steroids muscle grew? I did Exersise after all every day through chemo.
Runner, you are actually correct about icing..my MO offered icing to have nails saved ...he said it doesn't matter for neuropathy. However, all the ladies in this forum talk about icing as neuropathy prevention..so I started believe about it....I always had bad chipped nails. They are dry but grew, and funny , were less chipped during chemo. I was doing manicure and pedicure all the way trough.
I am not going to do any tatoos... I don't need reminder. Its on my mind unfortunately 24/7:(
When will I ever stop thinking and stop being afraid of it? And I do want to do 5k run in Central Park that happens every October.
For eyelashes, when the f.k will they grow? My eyebrows almost back to pre cancer thikness. But I have 2 eyelashes on each eye. No Joseph Brian helped me with them. I started yesterday using revitalash... I have to attend 2 bday parties this weekend and I bought fake lashes... But I am scared to use in case of allergy to the glue. Anyone used it?
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runner, do by recall the article you read about neuropathy? Icing my hands and feet was as hard as the ice caps and made my whole body cold. I don't think I'd do it just for my nails...
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kechla I will try and find it. I have a busy day so give me a couple of days!
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good luck to everyone starting this very stressful journey!
Runner I also have the stripes on my nails! And I also think of them as marks of courage for every chemo.
My eyebrows have begun to fill a little, but my eyelashes are not, so I started latisse last week, so far I cant see any change, but I'll let you all know.
Now if only the regrowth was dense enough to cover my scalp so I could stop wearing scarves that would be great
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This is so amazing to me that how each one of us experiences/reacts to chemo differently even with the same regimen. Saw my ophthalmologist yesterday, my eyesight is worse now, and I need new glasses. I got gum bleeds ( even though I washed my mouth with biotin and the baking soda/salt mix throughout chemo) and my teeth became yellow and dirty looking, theres's tiny gaps between some of my teeth now. Saw my dentist the other day, will go in for teeth cleaning and now every 3 months instead of 6 months. Probably have to bleach my teeth to get back to how they looked pre chemo. What's annoying to me is that none of these side effects are mentioned by oncologists. I'm very fair skinned but now my skin in some areas of my body is darker.
I started using Latisse right after chemo on lashes and used Latisse on brows from the start, but my eye lashes are mostly gone, so are brows. Brows are coming in and in a weird way. Half way in and sparse. Before chemo I had very thick andbeautiful brows and they grew like crazy. Not anymore. I wish drs cared about and discussed all damages that chemo brings on, which are equally important (at least to me), not just talked about nausea, diarrhea, etc.
Sorry, today I'm more stressed out than usual. It's hair wash day also, and depresses me more to see the never ending shedding.
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Ladies, about nails I just started to see darkness in the corner on a couple of mine. That's part of chemo ? Any one take silica compound for hair? It was on suggestion page for PCC bf I went w Arctic. My dr doesn't want me taking anything xtra but I don't want long term problems. Wonder what he do if he was doing chemo. If PCC from Europe suggests it , is it ok ? I got some glutamine and b6 too that I want to take. Three years after chemo my mom is having pain in her hands. It has to be neuropathy.
Not into the pink thing either but what I've learned through this is not going to sweat small stuff. Need a new car this year.
Viktoryak how long are you post chemo w leg problem?
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Meow, my MO said big time NO to any supplements .. No silica, biotin ..etc.
I Will be 6 weeks past chemo on Tuesday. Legs a bit better today but not the same as before. I am going to my father in low birthday party now and will try to wear hills. Even though I have my flip flops on me now while in the car. I had a whole summer in flip flops and sneakers....
I tried to glue fake eyelashes with no success. My hands defenetly grow out of my ass..lol. I tried but looked horrible so I took them off in a car and just did eyeliner.. Anyone tried those fake eyelashes?? I bought from Amazon.....
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I was not allowed to take any supplements other than vitamin D either. I started taking Silica and Biotin right after chemo. It's been 2 months and not sure if they've helped. Perhaps the shedding would have been even worse? Who knows.
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KD, I think the reason why the drs don't tell us all of the side effects bc then we wouldn't do it. And the wide range of SE differs greatly. My gums are receding more too and my biggest problem is intense stomach pain for 6 days. I pray that I'm not left w any SE after treatment. The damage to gut is life long. There's tiny nerve ending there too. My tongue is a pale color and can't taste much.
Viktoryak I'm looking into detoxifying the liver to expel the rest of treatment but I will ask dr first bc I don't want to hve problems later. But there's Dandelion tea, Oolong tea. Saw it on DR Oz. They rid toxins naturally and I'll be adding glutamine, biotin , zinc, b12, vit c.
Not sure about fake eyelashes but I was concerned that it could pull out baby hair trying to grow when taking them off. But maybe for special occasion ?
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Meow - I was so worried about losing hair that when my oncologist told me I could keep my hair with cold caps, I got so exited that did not care about anything else. Little that I knew it won't work for me, and it has become the most stressful thing in my life right now. Watching hair fall out daily and getting thinner and thinner was not what I expected, specially post chemo. There are ppl who have refused chemo, Suzanne Somets is one. Anyway, please try to relax this weekend.
I washed my hair and the shedding was somewhat less than 5 days ago. I got Argon Oil and put some on my hair and even scalp before washing for about 30 minutes and then washed my hair. It's supposed to promote hair growth and helps repair damaged hair. I'll ask my dermatologist on Monday if it's true
Hugs and good thoughts
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Meow, i asked my MO about different natural or hurbal staff to detoxify the liver. And the answear was NO!
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Meow and Willa:
This is my first post. It is lengthy I know. I am using Penguin Cold Caps and came to this board in search of how to approach the fact that I have a bald spot the size of a 50 cent piece that occurred after my 3rd chemo treatment. I have not asked this question yet because I don't know where to go. HOWEVER, I was struck by your posts regarding "regret" and thought maybe I could give you some solace.
I am BRCA2+ and I had a prophylactic double mastectomy in January of 2007. Nevertheless, I got breast cancer anyway in July of 2014. Every doctor said that the lump I felt was just scar tissue but I was relentless and finally it was determined (when I insisted on a needle core biopsy) that I had breast cancer. ER+PR+HER-. The first test they gave me (OncoTypeDX) determined I was "intermediate" with regards to needing chemo. If you are familiar with this test you know that a low score of means you don't need chemo and a high score means you do. An "intermediate" score basically means "you decide!" I was not content with this so I researched relentlessly and came across the MammaPrint Test by Agendia. This test is FDA approved while OncoTypeDX is not FDA approved. Believe it or not that is a fact. The MammaPrint Test also screens for more pathways and genes than the OncoTypeDX and it gives a score of either Low or High - NO Intermediate score.
When I first approached my Oncologist about getting the Mammaprint Test she said "We don't do that test here." I said "I don't care I want it anyway. " She said "It's too late to do it." I said "No it's not I have already contacted the company." I insisted and I sat her down at her computer and made her order the test. The results came back LOW so I did not do chemo. Also since then there have been even further studies about this test and further market research is showing that 3 out of 4 women do not need chemo for breast cancer. The Mammaprint Test is proving this.
SO why is this supposed to give you solace? Because everything happens for a reason. Everything! I had a double mastectomy and got breast cancer anyway. I guess this was my destiny. I did not have chemo for breast cancer and you will see as you read further that I guess this was my destiny. Because now I am being treated for Pancreatic cancer with chemo.
Here's the interesting thing. I felt something within my body, a pain in the center of my ribs for several months. I started with testing in March and every test kept coming back as okay. However, my amylase was high so they kept searching for a reason. I had 13 different tests to see if they could find a reason; HIDA scan of gallbladder, endoscopy, ultrasounds, 4 CTS scans, MRI, 2 ultrasound endoscopies, PET scan and so much blood work. My MRI came back and I was told everything was normal. But when I read it I saw words that said a follow up MRI should be done in 3 months because of a secondary observation. No one told me this I discovered it by reading the entire MRI notes..So I challenged the doctors. I kept in hot pursuit and finally at the second ultrasound endoscopy (EUS) they found cancer cells in the peri-pancreatic region. They called it CUP (cancer of unknown primary) because they did not find cancer cells in the pancreas itself. Therefore, they wanted to throw a "cocktail" of chemo at it.
I decided to go to Mayo Clinic for a second opinion. The Oncologist at Mayo spent an inordinate amount of time listening to my entire story which included the fact that every single member of my very large family has the gene including my children and the children of my siblings. He ended up telling me that even though they did not find cancer cells in the pancreas that could have been a sampling error. He said all the signs pointed to a cancer in the center of my pancreas and that I should get treatment right away. He also said that the irony of all of this is that though the BRCA2+ gene is what makes me more susceptible to these various cancers it also can work in my favor. Evidently since I have the gene so does the cancer. Therefore, just as my body cannot fend off the cancer so too the cancer has a more difficult time fending off the chemo. And, there have been studies that show that a certain kind of chemo protocol has worked wonders with pancreatic cancer in BRACA2+ patients. Armed with this information I have started chemo using Mayo's protocol.
BTW, if I would have had chemo for my breast cancer it would not have prevented this because the analysis shows this did not stem from breast cancer. Also my own research shows that had I had chemo for breast cancer this particular treatment may not have worked as well. SO once again everything happens for a reason. Meow and Willa your journey will help you in all of your future escapades in life. And each of our journeys will help others as they go through their journeys. I am feeling better than I have felt in at least 9 months and I have two more months if chemo to go through. I will return to Mayo on October 24. I may have to do another 3 months of chemo depending on what they see on the PET scan. But my tumor markers for pancreatic have already plummeted to well below normal! If my story can help even one person then I am very humbled. The most important thing is to learn from each action we take (or don't take). And be thankful that we are here to share. Spread the word on Mammaprint by Agendia and spread the word on staying in hot pursuit of your intuition. This is how we help others which will only in turn help ourselves. Bless you and Hugs.
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OmaJ - GREAT post. Thank you so much. I personally regret having done chemo. I feel very stupid and ignorant for not having done more research myself prior to my treatment. I'm learning more about breast cancer everyday nowafter the fact. So unfortunate. Overload of info at the time of diagnosis was overwhelming.
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OmaJ, Thankyou for being so open w your journey. It touched me to see such strength and grace. I'm blown away that the second cancer had nothing to w the first. Being BRACA 1 I'm more at risk for certain cancers like melanoma (that surprised me )and ovarian , possibly uterine. I asked one dr if the chemo would help in case I currently hve ovarian cancer until I get them out they said no different type. Then obgyn said yes bc of chemo.
Your definitely right about intuition. I always felt a deep sense that I had the gene and would most likely get breast cancer. I lived my life much healthier than mom and her sisters hoping that would help. But that's not necessarily how the gene works for us. It's a matter of time until the gene is turned on in a way. I pressed my dr to get me tested and she first read it wrong saying your negative! Then she said oh wait your positive. Which added more pain in finding out.
I've never been tested for oncotype or Mamaprint. I only knw that I'm triple neg and that it's aggressive and have to have chemo since it became invasive. Id like to find out more on it. Also I've heard years ago ) there's a blood book that says based on you blood type what diseases your more prone to. I'm A+ just like my mom and my sister is O like my dad and she is Braca negative. I thought that was interesting.
I hope capping works for you I'm barley holding on to mine. The bald spot could be from no contact w cap or a super cold area like frostbite that's my opinion though. Hang in there your a fighter!!
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OmaJ- Tears are streaming down my face. I can practically see the colors of your big beautiful heart beating out of the screen. Thank you for the gift of your story. I am at once heartbroken for you and the path you have traveled but elated that it seems you are on the way to saving your own life!
It continues to boggle my mind at how many things are missed along the way by doctors during diagnosis and treatment. I don't have expectations of perfection by any means, because that would be truly unfair. But it is eye-opening that the more people you talk to the more you find that have only gotten the correct treatments because they stepped in and micro-managed their own cases. BC has been a huge life lesson for me about being my own advocate.
That's fascinating about the BRCA2+ gene and pancreatic cancer. It seems that all cancer treatment will improve by leaps and bounds as more genetic clues are found. As far as Mammaprint - your comments are so interesting - esp about the lack of FDA approval on Oncotype. I had no idea and I spent a lot of time (though clearly not enough) looking into both tests. I did push to get Mammaprint and I got A LOT of push back. If I didn't end up being very strongly HER2+ I would have insisted because I was adamant about not doing chemo. You're making me think twice about Mammaprint and maybe going ahead with that test anyway.
I'm so happy to hear your tumor markers are low and you're feeling good! I hope you'll continue to post here if you feel like it so we can know how you are doing. I wish one day to have just a tiny fraction of your grace. I wish you love and beauty.
Meow - I think my onc is kind of in line with KD's and Viktory's. He's opposed to supplements with the exception of Vitamin D and L-glutamine. Specifically he's opposed to any anti-oxidants and to any herbs or supplements that cleanse the liver. This was hard for me to hear but his concern is that anti-oxidants protect cells from damage and that means they would conceivably protect both healthy and cancer cells. As far as the liver cleanse - he wants that chemo in the body for a certain period of time.He admits he doesn't know what that time period is but he doesn't want the chemo clearing the body faster than it would do naturally. I don't know what the right answer is and frankly neither does he. But this is again one of those "regret reduction" decisions where I just asked myself what I could live with. I think after chemo, if you work with a naturopathic physician you will be able to find a lot of ways to restore your gut and other parts of your body to health. But only you know what is best for you, of course.
KD - I hear you on the lack of info that comes from the oncs at the time of diagnosis and discussion of chemo. It's appalling what they don't tell you. I guess they don't want to overwhelm and scare but then when all these other SEs occur it just makes us more pissed and resentful. I'm trying Brian Joseph's lash/brow gel. Honestly not sure why since it doesn't exactly have glowing reviews. I guess I'm still stuck a bit in control mode when really so much is hurling out of control. Sorry you're having such a bad day. I hope you get some uplifting news at the Derm on Monday. Hugs to you.
Runner and Viktory - Just want to say you are my inspiration for walking/running/hiking each day despite how I feel. If nothing else I am trying to be normal and stay in some semblance of shape to feel like myself. My onc said the other day it's better to simply surrender and go with the flow but I'm still hoping to maintain some normalcy and some of my HAIR, dammit!! Although my hair looks like it belongs on some psychotic mermaid-ish sea-creature.
I've been so sad lately and feeling like shit but today the sky is blue and the leaves are turning red, all this BC chaos has brought my marriage back to a more loving and centered place, and I am in awe of the strength, intelligence and courage of all of you here. I know these good feelings will pass and I'll feel crappy and crabby again , but then I know those too will pass and the good will come back again. Nothing lasts forever.
Love and Peace to all.
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Kechla: Yay on #1 yesterday!! Your pic looks great! Hope you're feeling good today.
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Viktoryak, what about detoxifying after chemo has ended? Dr said it takes 4 wks for chemo to leave the body but I think everyone is different. It could explain why we get dense dose every 3 wks.
KD, did you have the option not to do chemo? ( I guess we all hve that choice) was your noninvasive? Stanford said id be at 90% "cured" but chemo would put me at 94%. All my drs said there's no such thing as being 100%. I did not want to either but w invasive and a chance at some reaching blood supply made me nervous.
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Meow - I'm triple positive, and my tumor was 3.5cm, had DCIS as well, no nodes involvement. My oncologist said I have 40% chance of cancer returning in 5-10 years, with chemo the percentage would be 20-25%. Both he and my surgeon thought that there's no need for me to have the Oncotype or mammoprint testing. I was considered high risk. In the hindsight I regret not having done the test. It's just all the "what ifs" right now going through my mind. Anyway, try to eat healthy and just take good care of yourself
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Meow, I am not sure if I detoxified or not. My legs still swell a bit during the day.But I was able to wear hills first time in about 12 weeks yesterday. Overall I feel ok. Exersise..but I also exersised through chemo.. My period stopped first week of chemo but Dr. Said it is not menapouse yet and it will be back. So far not back yet(don't miss it at all)..maybe I am not detoxified yet... I have no idea how else to check.
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KD2016- I am also triple positive and the explanation given to me was that because of the, HER2+, we will have very high results on those tests so they are not useful for us. Somewhere in this site I found a good article that outlined which test was useful for which type, if I find it again I will post. But it also showed that for HER2+, they don't recommend them.
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You were ALL right - 8 weeks (almost) pfc, and bye bye eyebrows. (well mostly). And yes, the shedding, the shedding, the shedding.... I agree with you KD - so much stress and thought going into this cold-capping, early hopes of saving hair, getting "used to" each phase - and then more hair shedding - it's all quite stressful.
On the other hand, this is the only breast cancer forum I check, focusing on my hair is my distraction. Yes, I spend an INORDINATE amount of time thinking about, talking about, worrying about my hair. But if I were bald? What would that be like? As I was napping yesterday, with the TV on in the background, a commercial came on: - "Have you experienced permanent hair loss while using the drug Taxotere?" REALLY, EVEN WHILE NAPPING I HAVE TO WORRY ABOUT THIS!! (it was almost funny).
So, it's hair washing day - but I'm putting it off a few more days - seriously - other than washing all the built up Toppix - the washing does very little for my hair (and as we all know, is always tough). I moved my youngest to college yesterday - so I'm sad enough today!!
On the bright side - two more radiation treatments and I'm done. Hang in there all - I look forward to going back to putting cancer in the rear view mirror - visible but not in my face! (with 6 month diagnostic check ups, breast exams and arimidex, that is!)
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KD, I can see your frustration but if it's any help drs are wrong all the time and you doing chemo is kind of an insurance that could push you farther than expected. Just don't give up hope not to give in to the despair. There's something that the mind and body responds to when were positive. It's like a form of healing. We cant pretend were going thru this but. Your obviously a fighter but also be good to yourself. Lots of Huggs!
Viktoryak, detoxifying is usually by drinking a certain tea , smoothie, food, or supplement that push toxins out of the liver to cleanse the body. Did you do something like that? How long do we hve to wait to do it?
Aimless, I'm on same boat w hair and stress. Iv seen same commercial and it scares me bc I'm on taxotere. See another SE that drs didn't warn me about. Permanent hair loss. So hopefully going thru capping will save me from that even though I may lose all of my hair. It's feels like another blow.
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Aimless - I washed my hair yesterday and the shedding was somewhat less, not by much but a little less. Also, in the morning I comb my hair very gently and run my fingers through my hair, last couple of days the shedding's been less than the usual 100 or more strands, it's around 50-60. Hopefully it's slowing down for you too. I can't believe 2 months past chemo I'm hiding at home, avoid going out except for dr's appointment and not seeing my friends all b/c of stupid hair and how pathetic I look. My hair isn't even hair anymore, it looks like cotton candy, so fine and poofy. It's been more stressful than anything I could imagine. Not Iwhat expected from capping at all
Meow - thank you for your kind words. I just have to look forward as far as treatments and next steps are concerned,and how to stay healthy for as long as possible and not what I've already gone through. There's an interesting article in the issue of Aug, New England Journal of Medicine about Mammoprint.
Have a lovely Sunday ladies.
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Willa, Meow and KD, thank you each for your comments to my post. It means so much to be able to share. I certainly want to make clear that I was in no way trying to stir the pot or make anyone feel regret for what they have or haven't done. It is all so confusing. Plus when you are given a diagnosis panic sets in. You don't want to believe what they are telling you and yet you have to make decisions and feel pressured. Trust me, I have been there.
I so strongly believe that we are here for a reason, that our journeys are for us to experience and sharing helps all those who come after us on the path. If someone has done chemo and didn't need to, that helps others who didn't know this. If, in my case, I had a double mastectomy only to discover that I got breast cancer anyway then maybe this story helps someone else before they make their decision.
Regarding the tests of OncotypeDX and Mammaprint I have done extensive research. I do know that the Mammaprint test works on ER +/-, HER2 +/- up to 3 positive nodes. OncotypeDX cannot test on all those patients. But I also know (as in my case) you have to insist on getting the test. I do think it is worth checking out for everyone, even if you have already done chemo. Your doctor would have to order the Mammaprint test but you could call Agendia directly to see if insurance will pay for it. You will find a lot of information on the Adendia site. It's just Agendia dot com. It may be that you want to order the Blueprint test because it will tell you what your tumor subtype is. All of this info can be important for future use. I found the people at that company to be so helpful. And I do believe that this knowledge is saving my life.
You are all very strong women. Your persistence and communication is commendable. I am proud to be in communication with you here. My protocol for chemo is two weeks on and one off. I do it on Wednesdays. I did two Wednesdays and had one off and then did my third. When I went the next week to do the fourth my white blood count was too low. So I had to skip that treatment. This past Wednesday was my normal week off so I have had two weeks off. I go in again this Wednesday. Since I have been feeling so great I am already counting down the days with dread. This too shall pass...
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Aimless, how many treatments did you have? A big CONGRATS on your youngest going to college! Good job mama!!
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Meow - I had 4 treatments of T/C. I was just looking at photos on the Internet of people who were bald from chemo and their regrowth. We are definitely in better shape - regardless of how much we've lost. I am sure of that. Yes, KD, cotton candy is so true - that's a good one.
I also think this has kept the Taxotere permanent hair loss at bay. Also - noticed little hairs growing in on my brows - so, like the first sign of spring - I take it as a good sign....
Goodnight all. I wish us all peace
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Would you ladies agree that nothing be left on the scalp even Toppik before infusion day. I have 3 days til and I'm afraid to use it but it's my go to , Iuse everyday now.
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Hi there! Just reading about hair shedding post chemo and couldn't agree more! It is very stressful. I am 6 weeks since last chemo and no signs of the shedding slowing down. Have very thin hair now and washing it is an extremely unpleasant experience! I am hanging on until it starts to grow back and I will just get it cut short to get rid of the horrible dry hair I have left. How long does it take to attract growing back after taxol?
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Jane, did you only have Taxol regiment? I am also will be 6 weeks pfc tomorrow. I was onTaxol and I believe my hair grew during it and growing now.
Question about eyebrows , I read here that a lot of people here loose them 4-8 weeks pfc. I read a few posts that on Taxol people lost them on week 8.My eyebrows actually thined really a lot during chemo but they are growing back now . Eye lashes I think starting to grow even though I don't really see them. My questiin, should i actually expect a loose of them in 2 weeks or I am out of the woods with it..
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