Cold Caps Users Past and Present, to Save Hair
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ItsStillMe-- I think you are just a week or so behind me. I will have my 3rd TC this coming Tuesday 11/28-- almost 1/2 way--Yay! I had the nasty flakey scalp thing happening mainly along my part just before and after treatment #2. I even asked a friend to come and pick all the flakey pieces free before I washed my hair post infusion...true friend! That really helped, and since then only have mild dandruff type flaking-- but I also moved my part with each cap change during my 2nd treatment which may have helped too. Is your flakey scalp only along your part too? maybe try swapping your part for next treatment.
I too began my shedding on day 23. By day 28 the shedding slowed. Today is day 37. I just need to keep my hands out of my hair....when I fiddle with it, hair comes out.... simple as that! Would be nice if I only had to receive 4 TC instead of 6. Why do you need 6? My sincere apologies if I've asked you this already -- chemo brain! 😜
It's crazy to think there are so few of us actively capping involved on this thread. Though it doesn't surprise me since I am only the 2nd person this year to cap at my hospital, and it's a rather large hospital! Plus when I tell anyone about CC, they are clueless and never heard about it just like it was for me when my hairdresser told me about it. I was curious if there would be more info about it shared in October during BC Awareness month-- but nope. There was no mention of it during my chemo 101 class, and no information provided by the hospital whatsoever-- all because it is not FDA approved! Why does the FDA take so long? Red tape & Politics!!
So it has to be by word of mouth for anyone to know about CC. I think people in my community that know I have BC just assume I am not receiving chemo, or the chemo I am receiving does not cause hair loss. I am debating about posting something on Facebook about my capping just to help build awareness.... but I don't want to be rubbing my hair in the faces of those without.... besides, it is a costly option that not all can choose. Do any of you ever feel a little guilty for having learned about and being able to use CCs? How have you all dealt with sharing the world of capping with the masses? I know for some, this is all a private matter, but I know many of you have been very open about your experience. I'd love to hear your thoughts!
Happy Happy to all! ☺️
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Mamafelice - I share the information by word of mouth - I tell people that if you ever know anyone that is ever dx - make sure they know about it or feel free to have them reach out to me. I tell them they have to start with it, so make sure they know early. I think by telling everyone I know, I will be able to help someone else. As BC is more common than we think - the odds are you will know someone in the future.
I have also made it my mission to set up a fund to help a few women in the future that need help with the funding for it (I have to get through surgery and recovery first). It is expensive. I think it should be available to anyone that is interested through insurance, if I can help even one person make it through it a little easier - I feel like I can give back.
As much as I don't love my thin hair that is so fragile, I am so thankful for it and it has helped me though my chemo process - feel just a little more normal.
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I was only the second person to use cc at my cancer center, although they had a medical grade freezer there that the previous patient had obtained for them. My onc and nurses didn't even mention the option to me. (I had seen something on the news about it.) When I mentioned it to my onc, he knew about it but said something like "it's just hair." Also said, "it's not guaranteed to work, and it's expensive." Well, chemo is no guarantee either, is it? Anyway, he said they supported it if I wanted to do it. All the nurses seemed fascinated with the whole process. I managed to keep maybe 50% of my hair, and I think it definitely grew back faster. I am glad I did it. Agree, it is certainly not widely advertised.
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I found out about cold capping on my own and asked about it at my initial consult with my oncologist. The social worker at her office gave me a printout of Penguin's webpage, saying, "This is the company that most of our patients who cap use." I was on my own to figure it out from there. The office does not have a freezer, but the nurses seems to know the drill so they've clearly had some patients before me using cold caps and are supportive of it.
A good friend of mine from college is a radiologist in the NY-NJ area and we've been e-mailing since my diagnosis. She reads mammograms all day and forwarded my surgical pathology report to a couple of oncologist friends for second opinions re my treatment plan. She said she thought there'd been "something about that process" at a conference she'd recently attended, but essentially knew nothing about cold capping and was curious to learn more so I sent her a ton of links.
I'm all about spreading the word and it does surprise me that so few are currently capping on this board. I think it's terrible that insurance doesn't cover it (although I am going to submit a claim anyway) and it's a "luxury" that many cannot afford. I told my husband that since we cannot take a vacation any time soon we are spending the money on this instead. Not exactly a holiday, but I feel fortunate that I have the option to give it a try.
Of course it is also a lot of work and a huge time commitment. I also feel fortunate that my husband is able to take a couple of days off from work to be my helper and that I have friends who will take over on other dates. Not everyone has the necessary support system, and that too seems very unfair. It sounds as if the setup for use of the DigniCap and Paxman machines is actually administered by nursing staff, so that makes it somewhat easier for some, though cost and access remain barriers.
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I also agree that I think insurance should cover this. It is not a vanity issue whatsoever. I know, for me, if I can see "me" in the mirror I feel my mental attitude would help aid in my journey through chemo and cancer.
I know most of you ladies are doing penguin cold caps. Check into Dignicap and Paxman (I believe that is the name.) They are cold cap machines that do not need to be changed. Put on once and that's it as it has its own refrigeration. The cost is $500 per session but I'm wondering if insurance would pay if it were submitted. We might try.
Edited to add: more and more hospitals are getting them but the "word" doesn't seem to be getting out.
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I am actively cold capping. This Tues the 28th will be my 3rd of 4 Taxotere/Carbo. I'm using Chemo Cold Caps and essentially have had zero hair loss (i'm keeping it all in a bag to keep track). My favorite cousin and my college roommate are my cappers and do EVERYTHING for me the day of infusions. I'm icing my hands and feet and am fortunate that my chair is heated and I bring an electric blanket and heating pad and they bundle me with warm blankets. Going today to purchase Thermacare packs! Great idea! I've been taking L-glutamine but too nervous to not ice my hands and feet?? I'm just SO tired of flat, dirty looking hair! I usually keep my long hair up in a very loose messy bun with a soft scrunchie but it sure shows off my now rounder-from steroids face! Starting 3 days ago, I am feling that "hurting" feeling in a few spots on my scalp and I am SUPER nervous its getting ready to fall out!!!
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How are the cold caps going, girls? I am 14 days out and no hair loss but I don't "when" hair would typically fall out as I have only had one chemo infusion so far.
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I've been stalking this forum a bit in case there is anything I can offer to those going through this journey. I see @LizabethM that you have just started the process and your Dx is close to mine. I also used the DigniCap system at my local center after learning that where I initially wanted to have treatment 1) didn't allow cold capping due to space limitations and 2) didn't have any kind of cold capping machine. I decided since my treatment was somewhat standard, I sought treatment from a new and more local oncologist at a center that had Dignicap. I have zero regrets from it despite the $$ I had to pay out for it (I think $500/session).
So with my T&C treatment, I think my first real major hair loss took place about 3 weeks out. My treatments were every 3 weeks so I'd say it was around the second treatment that the hair really started coming out in clumps. I had hair that was somewhat long and thick and I think the cap had some limitations as I found that I lost most of my hair, down to pretty much bald, on the top of my head. I was able to sweep my bangs and side of my hair to the top to cover this up most of the time. Most people really didn't notice anything. I'd be happy to share photos of my journey.
I'm now about 3 months beyond my last chemo treatment. I have a lot of thicker but short hair growing back on the top of my head, but of course it can only be combed forward for the most part. I have some whisps of longer bangs and some long and very thin straggly hair in the back now. I'm really really tempted to just have the whole of my hair cut to the length of my "new" hair, but right now that's really short...and it's cold here in Maryland for that! Maybe by the end of the year though when it's a bit longer because right now I think it's a bit strange looking but I've given up trying to make it look decent.
Eyelashes and eyebrows fell out after treatment but I think those are slowly coming back now as well. I end up just using dark eyeliner to mask that for now.
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I am done w/ 6 rounds of TCHP!! Started shedding more after #5 & it's continuing after #6. I am less than a week after my last round and had the last of my G shots today.
My eyebrows are about gone and I want to micro-blade. Who has had this done after chemo & what's an appropriate amount of time to wait before doing it due to risk of infection?
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Cat Lady, same here, my treatments are three weeks a part. Ok, so I was hoping I was "in the clear" so far. I'll have to wait and see. My local oncologist and cancer center do not offer the Dignicap so we drive 2 1/2 hours to Wake Forest to use their's for $500 a pop, like you. We are pretty happy with WF and their oncologists as well. How many rounds of TC did you do?
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LizabethM: Yes it does take some time for the shedding but once it started for me...it was a lot but I still had some hair left. I did 4 rounds of TC, began in June and ended in August.
This was me on July 25th (about a week after treatment #2):
Here I am a few days after my 4th and final treatment:
And here I am about 2 months after my final treatment:
Again from the front, I could hide all of these phases pretty well:
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I now understand how you were able to hide that, I couldn't picture what you meant before the pics. Did they put the bean bags on top when you did the Dignicap? They put some on me but I can't tell if it is keeping the cap down close enough or not.
You still have a lot of hair and the re-growth looks great! That's encouraging!
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MamaFelice- thinking about you today at your 3rd TC. Hoping your side effects are mild. Did you have another big shed before this 3rd infusion like before the 2nd? My 3rd will be on Monday. I did switch my part at every cap change during infusion 1 & 2. The scalp peeling is in large chunks that are attached at the base of the hair follicles, so it's hard to remove because I'm so afraid hair is going to come out too. I'm still losing hair but it has slowed down.
I had a choice of treatments, either AC(4) & Taxol (12) or TC(6). My MO wants me to have 6 because of my positive 3 nodes. My OncoDx score was 14, so it wasn't because of aggressiveness of tumor. The decision was difficult because I got 3 second opinions. The 4 opinions were evenly split between the 2 different treatments. So I hope I made the right choice.
I also found out about cold capping myself right here on this thread. There have been others that have capped in the past at my Center. But he center doesn't allow you to sit in the chemo chair to finish cold capping, because they need it for other patients. So they put you in a corner next to the bio freezer, which is very uncomfortable. So I now get dry ice and bring the caps home to finish the 4 hour post capping.
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Angiepie - Thanks so much for the encouraging report on the fact that you're on the 3rd of 4 Taxotere/Carbo using Chemo Cold Caps and have almost no hair loss! I'm doing 6 rounds of TCHP, so my chemo drugs are the same as yours and using Arctic Cold Caps, which are also the elastogels. Hopefully I'll do as well.
Yesterday was my first infusion and although it was a very long day (7.5 hours) it went about as well as could be expected, considering it's chemo. I asked for Emend to be added to my premeds, which added another half hour to my time. Would have preferred the oral version, but was told they cost about $500 and might not be covered by insurance so.... I also asked that they order the drugs to be TCPH, since Perjeta may potentially cause hair loss.
Cold capping went well, and certainly kept us busy and helped to pass the time. We started counting the four hours after the end of the Carboplatin infusion. and since they were running the drip on the Perjeta and Herceptin so slowly, we had a good amount of time in by the time we were done at about 5:45. The only part I found uncomfortable was the pressure of the chin strap, even with extra rolled t-shirt sleeve around it. Am going to try rolling a sleeve from one of my husband's old polar fleece sweatshirts for next time.
Neulasta shot today, which made my arm a bit sore. Took a Claritin to ward off bone pain when I got home. So far the only side effects I've really had are some acid reflux, so I just took an antacid for that. I'm told the flu-like SE tend to kick in on days 3-5 with this course of treatment, so we shall see....
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@LizabethM: I'll have to get a more current photo up of my current hair state, as it's definitely a bit odd for sure. I don't recall them using any bean bags...but it seems that would have been a good idea to keep the pressure on at the top of my head. I had that strap that went over and was tight on my chin but I still think there was too much of the top of my head where the cap just didn't get close enough. Only time will tell for you but wishing you luck.
@Magari: The neulasta shots were the hardest part of my treatments. I usually had flu-like symptoms the day AFTER my shot (I would get it at about 3pm the day after chemo) which started as pain in my jaw, then all-over body aches. I did claritin the first two times but really didn't see a difference with it so didn't use it the last two infusions/neulasta shots. I would just know that I would be achey for up to 3 or so days after neulasta and then I'd recover and be fine. Hang in there!
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Just had Chemo (Taxol/Herceptin) #4 (out of 12) yesterday. Was able to stay warm/calm enough that i actually slept through the postcool, which was amazing. On day 21 now. Still no appreciable hair loss but I know it's early days.
It'sStillMe, so sorry for late reply about accupuncture/moxa. Had family visiting for past week and hard to get on the computer. I see my acupuntutist oce a week, ideally the day after chemo. She would actually like me to come the day of chemo, but it's too long a day for me, plus i'm not sure i want to be stimulating blood flow right after coldcapping. If your white blood cell counts are low, you may not want to go right after chemo as your risk of infection is higher, but they use disposable sterile needles and also sterilize the affected areas so the risk is generally pretty low. Some people choose not to have accupuncture in their affected arm, but i only had one lymph node removed so i am not too worried about it. She does my hands and feet for neuropathy, and a few other points as well, for general wellbeing/stress relief. she also puts needles in my belly as i have some digestive issues from the taxol. She is also the one who recommended l-glutamine for my digestive issues, which my onco said was fine to take but did not recommend it to me herself.
She also showed me how to use moxa, which is a stick of compressed herbs that when lit, creates a permeating heat. You hold the lit stick over the accupuncture points until the area gets very warm. this stimulates blood flow. they can't do at the cancer center bc it's a lit object (a no no in hospitals), but the kind i use is smokeless and very slow burning.
During chemo i also ice hands and feet, which the hospital says is for nails but acknowledges anecdotal evidence that it also prevents/helps neuropathy.
I am 1/3 of the way through treatment and so far have experienced basically no neuropathy. I think I had some twinges the first week but not sure and those sensations have definitely gone.
Re REVITABROW: my onco said it was fine to use during chemo, but i think i am going to hold off until after. been putting coconut oil on my brows and may try the brian joseph's if i start to see any thinning.
re: BEAN BAGS for the dignicap. This is the first I am hearing of this. A little annoyed as i also feel like the cap may not be making great contact on top. they have added a nape strap to keep the cap closer to the back of my head (don't know why no one mentioned that either the first two sessions....), but i'm a little worried about the top as well. Ugh Ugh Ugh.
as for the vanity question: I keep telling people i don't even care if i look good. i just want to look NORMAL.
as for how i heard about coldcapping: i had it on a list of questions to ask my oncologist at our first appointment (heard about it from a friend) but i think she would have suggested it anyway. supposedly they get very good results with taxol and she felt my odds were better than what the company quoted. i cried when i found out how much it was going to cost, but am pressing forward for my sanity. i am actually selling my old car to pay for it (live in NYC and don't really need it, plus didn't want to deal with street parking while undergoing treatment). MSK told me they have never gotten a claim paid by any insurance company that they've submitted to.
Happy capping everyone!
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Catlady~I had the same experience as you did with the Neulasta shot. I had the jaw pain and all-over body aches. I thought it was a reaction to the chemo but now I'm wondering if it was the on-pro! I am grateful for the shot, however, but man...it kicked my behind!
Red332~ The hospital where I do the Dignicap is Wake Forest in NC. They were one of the two hospitals that conducted the clinical trials for the company. I am wondering if it is because of their experiences from the trial that they add the bean bags? Let me tell you, my chin strap HURTS my jaw! I'm glad you were able to rest and sleep a bit during the cool down.
As for me, I'm on day 15 from the first treatment and still have hair. Had some shedding for the first time today. Wow, this whole process is a little nerve wracking.
Happy Capping Campers!
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Preparing for C+T in a few weeks. Am interested in icing head, hands and toes. Can't afford $500/session, so was thinking of buying a couple of those migraine cold caps. Anyone have experience with those or heard if they would work? For icing hands/toes, can I just fill some containers with ice and dip fingers/feet in them as long as I can tolerate? Or is there a preferred procedure? Thank you for your input! Laura
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Good evening ladies! Up with a churning belly thanks to TC infusion #3..... this one hit me a little harder than previous 2, but I am thrilled to officially be 1/2-way through treatments!! YAY!! Thank you ItsStillMe for checking in on me, and thanks to all for your thoughts regarding how you learned about capping and how to share the info with others. I looked into having a fundraiser to buy a set of caps for my hospital to allow patients to use, and the hospital said they couldn't support such because caps are not FDA approved. So trying to figure out how to help woman in my community share the emotional boost capping has given me through this process. Hmmmmmm....I'll keep you posted, but please send ideas my way anytime!
Magari-- Congrats on first chemo done! Sounds like you are doing great and can't wait for updates on your capping!
Lizabeth-- I'm in NC too! You mentioned you are a couple of hours from Wake. I'm just north of Charlotte. I had my surgery at Duke, but being treated closer to home. I hear incredible things about Wake's BC program, and I'm impressed they have Dignicaps! I cannot wait to hear more about your capping success! I too began to see a few hairs here and there about day 15, and was amazed how much more I shed after 2nd infusion around days 22-25 just like everyone said. I just a couple days past infusion 3, and haven't seen any change in shed like after #2-- which pleases me to no end! Def keep using the bean bags-- my hubby puts great force into strapping down the cap to fit tight on top (using PCC). I'll post a top head pic in a couple of days to share my progress.
Cat lady-- your hair looks great, and I looking forward to seeing further update pics!
TravelGirl-- Hoping your surgery went well! Thinking of you and hope to hear an update soon!
Lmurphy-- I have not heard of the migraine caps. I have seen some elastogel-type caps sold on Amazon, but not sure if that is what you are referring too. I would imagine any such cap would def slowdown the hair loss process. If you would like a copy of the printed capping instructions, I as well as others here would be happy to share! I didn't realize how many parts there are to this entire process. Oh--& look into the rapunzel project for possible financial support. Best wishes!!
Off to try and catch some shut eye! ☺️❤️🦋
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lmurphy - I think for any chance of it working, you need the caps well below freezing at -30°C, you will need at least 4 caps, an ice chest, a long probe thermometer to make sure the caps attain the low temperature, and 5 slabs of dry ice, which weigh about 10 lbs and cost about $15 apiece. The caps need extra elastic velcro straps so you get direct contact, no air pockets. Freeze 50 minutes before the drip, through 4 hours after the drip, changing caps every 20 - 25 minutes depending on how much the caps can maintain the temp. Good luck!
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Good morning ladies. For those interested, this was my hair on November 4th. So that would be about 9 weeks after my last chemo treatment.
I was really tired of the longer back parts seeming straggly so THIS WEEK I went and had my first haircut in MONTHS. I don't recall my last one, but it would have been before starting treatment in June.
Anyway while I am tempted to cut it all to the length of the current new growth, after what I paid to keep some of that longer hair I just can't do that. So I got it trimmed and I'll try to remember to share another photo very soon. That would give all of you a realistic 3-month after chemo photo for sure.
For those doing cold caps, hang in there! There are so many options out there and despite my bald head I don't regret trying it and paying that $2000 for it.
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Hi ladies!
SJane - WOOHOO on finishing chemo!!!! what a great feeling! how did capping work for you?
thanks for all the post chemo photos... at 2 months PFC I'm still shedding more than usual daily, with extra on weekly wash days. I'm probably lost 40-50% of my hair, but the thinning seems pretty evenly spread out, with the most noticeable areas above my ears. that can be easily covered up, so it's manageable. The new hair is growing in quickly, and being wavy&short - tends to stick up on the top of my head. Have an appt tomorrow for bang trim and maybe a cut.... we'll see what she says
my hair doesn't look good by any means, but I'm so grateful to have enough to pull into a loose ponytail and not have to deal with wigs and hats every day!
Willow
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Ok for those interested in a 3 month hair status...here you go. Had it evened up a bit yesterday since it is still pretty thin and straggly.
It is still too short on top to do anything but comb it forward and flat. There is lots of salt and pepper now but that is the least of my concerns. I'm not about to expose myself to chemicals at this point. Even my shampoo is basic and all natural as much as possible.
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As I see a number of folks are using the Dignicap regimen, my wife's experience with the Paxman clinical trial a couple of years ago might prove beneficial:
Our Paxman cold capping clinical trial
Very happy to see both Dignicap and Paxman are now starting to appear more regularly in this space for your ladies.
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MammaFelice-thanks for the heads up on day 22-23. Any bit of shedding is nerve-wracking but I know it is to be expected. I am in SW Virginia and we drive 2 1/2 hours to WF, so far, I love that hospital! WF was the closest place that offered Dignicap. My husband was nervous to do the cold-capping himself, so we trek to North Carolina and let them do it.
I am pretty happy with your success with capping-it encourages me! How many rounds of TC will you have?Cat-lady- your hair is coming along! Thanks for the update pics!
Cabland-I'm off to read your link-we also looked into Paxman, but the closest one to us was 4 hours away so we went with Dignicap 2.5 hours away.
Ok, a general question-do you girls tend to shed more on wash day? That's when I seem to notice it.
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Lizabeth - absolutely yes on having more shed on wash days! Penguin materials said we shed an average of 120 hairs every day under normal circumstances (without chemo). This is from the Penguin Cold Capping hair care guide:
"Hair shedding is normal; there is no need to panic. Hair that sheds is hair in its old age stage of growth. Cold Cap Therapy works by protecting the "young" and "medium" aged hair bulbs against chemotherapeutic drugs. These drugs accelerate the "old age follicles" causing them to shed early, which is why hair shedding occurs.
An individual grows around 120 new hair bulbs a day and loses approximately the same amount without chemotherapy. Shedding is completely natural in hair growth.
People who wash their hair once a week will notice more shedding than those who wash their hair every day. This is due to the hair that has already shed 'sticking' to other hairs on the head."
Catlady - what successful capping! I would never have guessed you had chemo
Adorable kitty in the photo too!Willow
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Willow-THANK YOU!!! You have encouraged me today!! You have no idea!! :-)
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Lizabeth - happy to pay it forward! Also, if you are combing your hair more gently and less often, those loose hairs don't get removed as often with grooming too.
don't know if there's a quick way to search for photos, but I think it was Elberama who posted a great photo of hair shed after her shower and combing. Maybe in August or September, because it was early in my treatment when I didn't have any idea of how much hair a "shed" could be. Very reassuring to see the pretty scary amount of hair that came out, and how great her coverage still was in the head shots she posted from the same day.
Willow
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Do you think washing your hair less helps decrease shedding OR its just an accumulation? Stated another way - do you think washing your hair less helps or its neutral?
I am just over 5 weeks PFC, still shedding, I hope that it tapers down over the next few weeks.
I am washing every 7-10 days or so - not sure if pushing past the weekly is helping at all.
Opinions?
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So to piggyback on Travel Girl's question, and given that Penguin's material states that "People who wash their hair once a week will *notice more shedding* than those who wash their hair every day. This is due to the hair that has already shed 'sticking' to other hairs on the head," is there any real reason to limit hair washing?
I can understand why we should not use blow dry or use heat tools. I can understand why we should not pull hair back tightly. But I honestly don't get the not washing thing. I absolutely HATE having dirty, greasy hair. And used to wash daily, with noticeable shedding, pre-chemo. I can live with washing less (though I can't make it to once a week) if there is a good reason for it, but I haven't heard one yet.
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