Cold Caps Users Past and Present, to Save Hair
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hi. So I had my 2nd t/c infusion today and still have the last of my cold cap on for about another 15 min . The cold caps went well today. My sister did it for the 1st time. We got 100lbs of dry ice but me t time we will get 80. I hope not to shed a lot having the cold caps makes the chemo experience more stressful a bit for me I cant really just sit and relax or nap cuz next thing u know it's time to change out the cap. 4 more T/C rounds left. Well hope you ladies have a great night
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I learned about cold caps from Stephanie's Terrific Tips for getting through TC. https://community.breastcancer.org/forum/69/topics... She also talks about nutrition, exercise, staying hydrated, moisturizing, and avoiding/mitigating neuropathy. She used Penguin, I used ChemoColdCaps based out of Dallas. DigniCaps Got FDA approval late 2015 were not available in Idaho. Even though I lost 40-50% my hair and have bald spots, both the surgeon and oncologist were impressed with how much hair I still had, telling me that I would be completely bald if I had not used them. It is very important to talk with your oncologist first. The first clinic I went to did not seem to know about coldcaps, and a couple of days after the oncologist gave a tentative ok, the clinic called me and said I would not be allowed to use them, so I switched clinics. The second clinic knew about cold caps and were interested in how well they actually would work. Make sure the caps fit. Chemo Cold Caps sent me 6 new caps when I expressed concern that the first ones were too small. I went through 4 treatments 21 days apart of TC and did not use a port. I went through the "Big loss" on the morning of the 2nd infusion. I tried to keep caps at -35 Celcius when they first went on. I did not experience any discomfort with the 1st infusion, but as I lost hair I started feeling cold and used warm blankets and layering for infusions 2-4. I exercised everyday, even when I felt lousy. The worst days were usually day 3 after an infusion. I tried to drink 10-12 cups of water, herbal tea, or very dilute fruit juice every day. This was a recurrence of a cancer 7 years ago (lumpectomy and radiation) or maybe a new cancer with the same characteristics as the first. I did the Oncotype test before agreeing to chemo.
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BlueGirl--Can I ask what was your Oncotype score?
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Runner - that is great news about your estradiol increasing. Both my boys were through IVF so know all about estradiol, lupron and FSH counts. Curious with being estrogen positive did your GYN say you should get pregnant? I still have 2 embryos on ice, my husband and I had just decide a week before my dx we would go ahead and put those back in as soon as school started. Two days later I found a lump, I went in the same day, like within hours of finding, no appt, just drove there. Boom! breast cancer... best laid plans, you know... actually had we done gone through with it and I didn't find lump the cancer would have spread dramatically during pregnancy and breastfeeding, since mine is estrogen and progesterone positive. Now though I can never get pregnant. So we'd have to do surrogate. Then I think do I want to have another baby when my world is so uncertain. If I didn't have any I would do it no problem, but now just feeling greedy. But who knows about anything.. sorry if this is too dark😧.
IL311 - your hair looks great! You must have straight hair? My hair just seems to be a wavy mess. I do gently pull my shoulder length hair to the side straight out with my fingers and blow dry it on warm low setting. I've been wondering (bad,very bad) about those hot brushes. If you held your hair at the root so there is no pulling and you just ran the brush through it a couple times, just the ends. Crazy, the risks we take.
Kshorten - your hair looks great too. The caps have been a success for you too. Congrats!
Pamela - I know what you mean the chemo is pretty straightforward but adding the cold cap is stressful. We come home and I doze on the couch just to be woken up for the change. Yesterday I was so cold, tired and nauseous I was close to telling my capper to forget the last cap. With AC you go 5 hours after chemo stops.. eekk!
Hanging in - congratulations your through your first. First time is stressful. Make note on what makes you feel better.. Kuddos on walking, it helps. Now enjoy the time in between and gain strength, lots is green leafery smoothies or juices.
Yesterday I had my last AC, not so bad with the smell of the Cold Caps. So it goes my son is home sick with stomach flu and fever. Right after last session he was home sick with a cold.. I've been lucky not to catch. Hard to feel sorry for myself or relax too much taking care of a sick little one.
Has anyone heard about using magic mushrooms to get rid of the anxiety or PTSD after breast cancer treatment . Of course it's closely monitored and the power of suggestion is used to symbolize the relief of the stress. Who knows, sounds interesting. Maybe worth not spending years on anti-depressants if it does help..
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magic mushrooms? Sounds lovely! Is there a statute of limitations on how long after treatment you can still get some? I'm pretty sure I still have anxiety issues and I don't think that's going to go away any time soon.
Hopful2- you just brought back memories of how awesome it was to take off that last cold cap for the day! I always had 18 caps before I was done. It made chemo day so miserable. I think just the smell of dry ice would make me ill. I often looked over at other people just getting chemo and thinking how nice it would be to just get the infusion and read a book. But, all the other days I was so glad I did it! I was one of the first people at my infusion center to do it and my doctor's first patient to do it. We are paving the way for future people to have success with it.
Luvmyys- I'm not sure what my plans are for children. I'm 46. But I do know I didn't want cancer treatment to make the decision for me. I don't know if my oocytes are still good quality. My FSH was really high still- in the 70's I think. That may be a tamoxifen thing though. My estradiol was much improved. For the last 6 months it's been at a depressing "less than 5". Yesterday it was 170! My ovaries might be limping along and half working but they are definitely making estrogen again! Makes me happy. Even more signs of my life returning to normal. Or whatever this new normal is. At my age I had a really good chance of going into permanent menopause.
I still get occasional hot flashes from tamoxifen but no night sweats, thank you Jesus. During Lupron it was awful. The hot flashes now aren't too bad at all unless I drink any kind of alcohol. They are hot flashes sent from Hell. They are so bad I think I'm going to spontaneously combust and leave a melted shadow of my body on the floor.I've tried sipping wine slow, stopping at half a glass, drinking lots of water-nothing works. So to save the earth from my contribution to global warming, I've about decided to stop drinking!
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Hi all, I have been going back and reading messages from the beginning. First off, I had type 2 uterine cancer, not breast cancer but no forums about cold capping that I know of for my type of cancer. The cancer i am being treated for is very aggressive and i was stage 3. i am 65 yrs old so my issues are different than many of you younger women. when i was diagnosed i was devasted about chemo taking my hair but also felt too defeated by the diagnosis to find out how to cold cap. I had a hysterectomy ithis past may and three weeks later treated with with carbo and taxol every three weeks x 3 then radiation x 30 treatments and now chemo again as before x 3. I did go completely bald and it was awful. I loved my long salt and pepper gray hair. It was the best it ever looked and then this happened. it was all i could think about. I cried so much about it that even my family lost patience. But I wanted to come here to reassure others who may lose more hair than they thought they might with the cold capping about how fast it comes back. My hair quickly came back and with a vengeance, thicker than ever and curly. About the time i lost my eyebrows new ones were already coming in so i only had sparse brows for less than two weeks. It has been about 20 weeks from the very first round of chemo and i have a curly mop on my head now which i love. The shiny bald look was probably gone by 8-10 weeks post chemo. I haven't had short hair since i was 13 but have grown to appreciate my short hair and get compliments a lot, even from strangers who do not know that my hair stylist was mr. chemo. i do take biotin and was using rogaine so i think it helped my hair come back thicker. i stopped rogaine because it was making me too hairy around my forehead when my hair came back.
Anyway I decided to cold cap for the second phase of chemo and my first cold capping was little less than 3 weeks ago. I am shedding like crazy but nothing like the first round where it came out by the handful! The way i feel is even if i have to go back to a scarf it will be for less time and the new sprouting hair may not fall out between infusions. (and it really did grow in the three weeks between infusions) In any case, i have been through the mourning of the loss of my hair and it is "ok" but hope to not go completely bald again.
I bought used elasto-gel caps on ebay for half the price new. I had time to wait for them to show up at that price. My husband is a great assistant and we did the best we could all though i might do things a bit different next round, 20 min changes instead of 30, keep them on longer after chemo is done. We did put crushed dry ice in large baggies and would place the baggy inside the caps when re-cooling and i think this works well in addition to dry ice inside the chest as i only have 4 caps. i did take a percocet before chemo and hardly felt any pain from the cold and percocet makes everything so much easier anyway. I also took a klonopin so i was pretty calm.
i have only two more sessions to go and will be done with treatment but then surveillance which is visits and blood work every 3 months for 2 years and then every 6 months for the next 4 years. I will sit down with my oncologist at the end of treatment and see what she says but i believe there is a 50% chance of recurrence with this type of cancer but so far PET and blood work look really good.
I live in the Chapel Hill Raleigh Durham area and would be happy to communicate with nearby folks about cold-capping.
Thank you all, it's been so good to be reading here, ya'll are so upbeat and positive. I usually stay away from online cancer groups but this one is good!
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Runner - lol, I know really.... but I think that's the point they use the magic mushrooms to help get over the anxiety that lingers. I've heard it works wonders. They are using them for other ailments too. Your young and should make the decision for yourself. A friend just had a baby at 53, after twins 8 year earlier. Not ideal but same situation as me, frozen embryos. Her thought was she was only 8 years into it, not like her kids were in there 20's. Anyway everyone makes the choice that is best for them. Like we choose this crazy, stressful cold capping. BTW - how long PFC did you have wine?
Welcome janetsam - sorry your part of this club but hopefully, like I have, you can get some support and advice to help you along the way. Also thank you already for providing comfort that the hair grows back quick. This too shall pass but it seems forever when your in it...
Hope everyone is enjoying their Friday night...0 -
Welcome Janetsam, Thankyou for your input. Hang In there and hope your capping experience is a good one I'm only 10 wks PFC and lost over 80% I still think it benefitted me to avoid permanent hair loss. So hopefully it works in months to come. Before all this I had my hair the healthiest it's ever been and long. It took me years and then just like that have to start over. What a distraction to the other issue at hand.
I also wanted to know if anyone else has to use the bathroom a lot during the night. I have to go 3-4 times a night since chemo. Have a great weekend
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hi all, I'm about to start chemo....Abraxane and herceptin for 12 weeks. I am def going to cold cap using penguin. I have read a lot of the comments here and I literally can't sleep at night. The dr's keep telling me that I can keep 80% of my hair with cold capping. I hair a lot of hair to begin with. Can anyone give me tips, advice, anything to keep my hair and keep my sanity. Do I buy a wig in advance? Will my hair just all fall out one day? What about eyebrows and eyelashes? This is the most traumatic thing I can imagine and I need advice so anything is appreciated.
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hi hazel15. Well I just finished my second round of chemo so I'm not a big pro on this yet. But I would suggest having a wig just in case your hair thins out too much. Also maybe get a haircut soon. And use paraben free shampoo. Also for your eyebrows I'm using Brian Joseph's eye brow gel. It's also for your lashes. You can order on line. Good luck. Hope this helps.
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Haha, Runner, re your steps to limit global warming!
Ok, so I am all over the mushrooms. It's funny this topic has come up here this week. There was just an article in our local paper yesterday (I can't get the link to work) about the successful use of psychedelics to treat anxiety, PTSD, depression, etc. I think this approach has also worked with autoimmune diseases. I first heard about this when I read a National Geographic article about 10 years ago by a Stanford grad student who went to the Amazon and was treated by shamans who cured her life-long intractable depression using ayahuasca. It's a fascinating read and if I were remotely brave I would have gone on that same journey in a heartbeat ( I have some PTSD). Anyway, it seems that clinical studies are being done using LSD, ecstasy, etc, for 8 hour "trips" that are medically monitored. Now THAT I could more easily get behind. I think it'll be interesting to see what comes of all this in terms of mainstream treatment since the pharmaceutical industry (esp anti-depressants/ anti-anxiety agents) is gigantic. Anyway, I'm sure most of us here can relate to cancer-induced anxiety and all the loveliness that entails. It would be great if another treatment option were available besides long term therapy and/or Rx drugs. Along these lines - I took a Qi Gong class yesterday and after I got out of that class I felt peaceful for the first time since May 20, the day I was diagnosed. I've done a lot of things - yoga, pilates, meditation, but this felt different (good different).
Luvmyys - so glad you found your cancer when you did. That's a scary story. I had to laugh about your desperate and forbidden hair moves. I, too, have wavy hair that drives me nuts. We have a space heater in the bathroom and I pretend not to notice that I stand right over it and pull my hair straight (just the ends!) as it dries. My husband called me out on this the other night which really wasn't all that bright.
Deemendoza - Really sorry about the nausea. I had the same experience with the first caps. What are you taking for pre-meds? In addition to the pre-meds I did a cannabis spray and drank a lot of ginger ale.
IL311 and Kshorten - Both of you have great hair! IL - I'm a little jealous that your roots are nowhere to be seen
I got some ColorMark Touchback after my Madison Reed adventure. Some earlier cappers used this product successfully. I'll let you know how it goes but please note I'm PFC. Whatever the case with L'oreal safety, it looks like your hair is holding up fabulously.Janetsam: Welcome. Good luck with your capping and your treatment! Thank you for sharing your story and for giving us another reason to hope that hair does in fact grow back... always good to hear.
Hazel: Sorry you have to be here but hope you find some comfort on these pages. I know I did (and do). All of this is traumatizing, especially at the beginning, but it usually gets a little better. My understanding is that Taxol and Herceptin are generally easier on hair. Abraxane is a substitute for Taxol, correct? I was initially only going to have Taxol and Herceptin. My Onc and NP at that time were quite optimistic about my hair, too. There were four women at my Onc center who did Taxol and Herceptin only and had great hair at the end of treatment. I wasn't quite so lucky but I had to add other chemo agents after my treatment was started. That said, there are people here who've done all sorts of chemo regimens and have been able to save their hair. You have every reason to be hopeful.
Do you feel comfortable with the Penguin instructions and guidelines? If you do, then the best thing is probably just to do some practice runs using caps that've been frozen in your freezer. Of course they won't be as cold as they will be for the real thing but at least you and your capper can get a feel for the them and how quickly you need to move. If you haven't seen it, there's a video on Penguin site that's helpful.
I was really cold so I brought two electric blankets. I also had some neck pillows (the kind that hold your neck upright).
I did get a wig before chemo started. It was hard to go into the shop but I'm glad I did it. I think it made me calm down just a bit to know I had a safety net.
Your hair and eyebrows/eyelashes won't fall out in one day. Everybody seems to be really different. I had almost all my eyebrows/eyelashes throughout chemo and then lost them a week after it was finished. My hair just gradually thinned a lot but others have one or several big sheds. Hair loss is hard to predict but I think you'll find most people are happy that they capped. I also got some eyebrow powders and reviewed youtube eyebrow tutorials so that I could get a feel for how to recreate brows. One thing that helped me a lot was to get a transparency and trace my actual brows (as they related to my eyes) so that I'd have a personal eyebrow stencil. My eyebrows are one of my stronger features and I was pretty pissed when they fell out!
Try to drink a ton of water and other fluids, be sure to eat a lot of protein, vegetables and fruits, and exercise a bit each day even if you don't want to. It will help your body flush the chemo which will also help your mindset. I hope all this this doesn't sound too bossy
I imagine people around you might be telling you how you can do this; you are braver and stronger than you think. I got so annoyed when people would say those things to me because I spent days crying non-stop and scared out of my mind. I thought they were insane. But you know what? It was true. And you will get through chemo too. And chances are you will get through it with hair! Sending best wishes to you. Please let us know how it your first chemo goes.
Hangin in, Hopfull and Blue Girl - Thinking of you... best of luck with your next infusions. Hope you're feeling okay.
Meow - I do have to get up more frequently in the night nowadays. Hmm. I think maybe it's a hormonal issue because hormones affect everything (like bladder sensitivity, etc?). Not sure. But I'm with you..
Good luck to everyone. Hugs.
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meow0365, I'm with you on capping toavoid permanent hair loss. As they have said Taxotere can cause permanent hair loss and that's what really freaked me out. So I'm hoping at the end of this journey not have permanent hair loss.
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Hazel, Willa has given you lots of good advice. I had weekly taxol (same drug as abraxane) and herceptin and hardly lost any hair. As long as you get the caps on properly and wear them for the right amount of time, you will do great! And no need to buy a wig. Good luck to you
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Thank you all. Your advice is greatly appreciated.
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Hi All,
Willa216- I have tried all the root cover ups available...every price range and do think the L'Oreal spray is the best. It is dark so while I have dark brown hair I am using light brown. I am using it once a week. I am a person that spent lots of time on my hair, blow drying, straighten, keratin treatments etc...and this new normal of once a week washing is hard. I am using Velcro curlers and put cocunut oil on the ends. Next treat is on the 9th and nervous every day.
Pamela23, I totally hear you...I rather thin and grey hair than no hair...so am crossing fingers and toes that we all keep our hair.
Look forward to hearing everyone's experiences and advice.
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luvmyys- I don't think I drank during chemo at all but after I think I had a glass of wine about 10 days PFC. I stopped at one. I'm not much of a drinker but the time seemed right!
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Hi:
Here's an article about mushrooms for anxiety if anyone is interested. Hope everyone is having a peaceful and happy weekend. And good hair...
http://www.nytimes.com/2016/12/01/health/hallucino...0 -
hi ladies. So today was my wash day (3days after chemo). And I had a lot of shedding. Made me so depressed. I cried. Also I noticed more of my lashes fell out. Mostly my right eye. Today just not a good day. I'm just feeling a little off. Maybe the chemo still. Hope you guys have a good restive if your day
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Hazel, if you are doing penguin you should be fine. I just finished chemo and did lose 80% of my hair but I was on adriamycin which is the bad one for hair. You don't state what you are getting but just follow directions carefully. Don't wash your hair for a week, at least, after chemo treatment. When I started the instructions were very iffy with PCC, now they say to keep them on longer after. I only did 2 1/2 hrs. Now they say 5 for adriamycin. That was my problem, I think. Still happy I did it
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does anyone have the link to the page with the list of tips for cold capping? I've been searching all day and cannot find it.
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I'm starting chemo tomorrow, the first of six sessions scheduled. TCH plus Perjeta. And I'll be using the Dignicap. I have long, wavy white hair and am hoping to at least forestall permanent hair loss. I know it's just hair but it's important to me. I came to this forum hoping to read more about Dignicap but what I'm seeing is not much and what there is, isn't very encouraging. It was offered to me as part of a free trial, so that's why I'm doing it. We'll see.... Also glad to read about runner70's running experience. I was supposed to do a marathon six days after this chemo, but changed to the half. I'll do that half, even if I have to walk it. Again, we'll see... so much unknown at this point. How does hot, sweaty running affect hair loss?
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Myraclaire, did you look under active forum or member Dancetrancer ? I think that' her name. I found one under Tiffany's Terriffic Tips.
Bearclaws welcome! Most of the women that capping has worked for hardly come back or come once in awhile. I know of plenty ladies it worked for. There's a couple of ladies here using the Dingicaps. Few ladies have done tv interviews to show results. Good luck on this part of the journey we are here for you
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Hello!!! I'm still here, not following posts closely, but my name happened to catch my eye! I will bump the newbie threads. Also, here are the links! Keep on cappin' ladies!
Here's the newbie thread (but post questions on this thread, newbie thread is just for reference):
https://community.breastcancer.org/forum/6/topics/...
And here is the success stories thread:
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Hopfull: sorry to hear you had such a hard time today. I cried so much - sometimes every day - and wash days were the worst. It's hard to see all that hair come out especially after we work so hard to try to save it. It's also a physical reminder that we have such little control over what happens to our bodies during chemo and really everything having to do with cancer . It's a lot to process and I know for me that I had a much harder time emotionally starting at about day 2-3 after chemo. I wish I could comfort you. Please know that just because you're losing a lot of hair on wash day, and shedding other times as well , does not mean that you're going to lose all your hair. I hope the next few days get better for you. Be gentle with yourself. Hugs.
Bareclaw: Welcome. Wow, your running is inspirational! I was hoping to do Dignicap, actually, but in the end it was too far of a drive to go to weekly infusions where it was being offered. As you may have seen, there are some people here who've used it. I think it's still pretty new and not in that many places yet. I did TCHP with Penguin. I think I have about 60% of my hair - I'm a little worried that I may lose more because some people do continue to shed for a long time but I'm glad I capped. Anyway, best wishes whatever you decide to do. Good luck with your run!
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Hopfull2--sometimes you just have to give in to your emotions. Sometimes I feel like I'm trying to be that "strong" person everyone tells me I am when really there are times I'm just tired of this whole thing and the smallest thing can make me cry. That was today. I'm not sure what set me off but I started to cry because I'm so tired of not being able to taste anything. It's been 9 days since I lost my taste and I keep thinking if that's the worst thing I feel then I'm doing pretty good. But today it really got to me after throwing away a yogurt half way through because it tasted like air. I long to eat the treats people are bringing me or that I bake for my kids. Every time I've gone out for a meal I order a salad since it's crunchy with texture. There's just no joy in eating and it sucks, especially since I have such a sweet tooth. My point is, we all have those moments and I'm sure its worse right now when you aren't feeling good. You deserve to let it out sometimes.
Welcome Bearclaws!
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yes. Today was definitely that day for me. I cried a lot today. I was just home alone with the kids. My 2yr old told me not to cry. I try not to in front of the kids but today was a tough day. With the holidays coming up soon too. My moms b-day would have been this coming week. But she passed 10 months ago from BC with mets at her young age of 54. And now dealing with my diagnosis. Wish she was here
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I'm sorry my dear cyber BC sister Hopfull2, sending you lots of hugs and many prayers this too shall pass.
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Oh Hopfull2, you made me cry. I can't imagine what you are going through. I wish I could make it better for you. This would otherwise be an emotional time of year for you and now dealing with this disease along with tiny ones at home. I hope you have a lot of support where you are.
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I washed my hair this morning and holy moly, the hair that came out!! Now I know what the 'big shed' is. I'm telling myself it will be OK. Is this it for round one? Or will I keep getting handfuls out in between treatments? Treatment 2 is Wednesday.
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pamela23, thank you. And just be prepared. The cold capper I had hired for my 1st cap told me I will see the big shed after my 2nd chemo. She was right. Just don't comb your hair. Lol. Jk. But guess it will slow down. Ie seen lots of hairs on my sweaters, ect. And now my lashes. My 13yr old son tried cheering me up. He told me yesterday that he read that by now I would've have been been bald so to not ne discouraged. Sweet.
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