Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi Cold Cap ladies! Been a little while since I posted. Monday I had my first taxol round (after 4 AC). I iced my hands and feet. It sure was torture. But I turned up my heating blanket to max and that helped stop the shivering.
I used the natracure cold therapy socks on my feet (amazon) and I loved them. I could keep my feet up with my chair in the recliner position and just doze off. They give me Ativan before I start cold capping so it stops my nausea and anxiety. It basically puts me to sleep and I am able to pass the long day of cold capping almost unaware. So the socks were great as I could stay reclined and asleep. I only had to switch the cold gel packs once I got extra ones and kept them in a small cooler. I highly recommend these socks.
My hair is not doing so well, as I mentioned before I lost about 70%. Especially on the top. My patient navigator (who helps me with the Dignicap) was very supportive. I told her I wanted to keep capping as I’m hoping Taxol will be easier on my hair and i’ve come this far (emotionally and financially). I asked her what other women usually do at This point. She said most quit the capping, but that she would support me with whichever decision I made. So I’m capping on - until the end or until I’m completely bald (whatever comes first).
As Jlove mentioned, the first big shed can Be emotionally difficult as that’s when you loose the most hair. The other ones are easier. I’ve also Noticed that it’s different for each one of us. Some shed for a few days, others for a week or so. For me it was a week, and then it slowed down, but i kept loosing hair until now. I sweep everyday and find hair everywhere.
HUgs
0 -
oh forgot to mention! I got my wig in the mail and I love it!!!! It made me cry to see me with a full head of hair - happy tears! I’m going to wear it out today to test it. I’m very excited about it!
0 -
Pbello- Keep capping if you can stand it!!!! I was ready to throw the towel in because the capping was becoming unbearable for the cold and discomfort but I've decided to make it my friend ... and now that we have another 9 dates together he / she / it and I will have to tolerate one another. I am also secretly hoping that some fuzz will grow back in the meantime. The nurse swears she sees little hair bulbs on the giant Grade 2 bald spot, but my family doesn't seem them. While in the house and being grossed out by my blazing white shiny bald spot, I use Nanogen hair fibers (like Toppix). I've lost at least 75% of my hair and mostly wear the wig when I leave the house (sometimes just a cap and let what is left hang down).
0 -
I have been researching the Paxman cooling system and I am considering trying it during chemo. I have very fine hair and it is color treated. I was curious on the results people have had with cooling caps.
0 -
hsacc- I used Chemo Cold Caps and had GREAT results!!!!! I had my BIG shed 3 weeks after my 4th (and last) chemo..thought I was home free..them wham! Big Shed. But I still have 65-70% of my hair!! It's just thin and a little patchy on top but hair fibers and creative parting and hair combing takes care of it. I would highly recommend cold capping!!!
(I am almost 4 months post chemo and got a volumizer/topper last month to get me through the "growring back out phase" and I was so tired of having no volume or fullness)
0 -
Amelia - thanks so much for your comments!
:):) It has become much colder now that I have such a big bald spot on top. But so far I’m tolerating it! I have three more dates with my friend. Let’s see how it goes! I agree - Keep capping!
0 -
Thanks for letting me know. I’m worried about my hair since it is already fine and color treated but we will see.. What brand did you use?
0 -
PBello - Thanks for checking in with updates, and best of luck for your last few sessions. So glad to hear you love your wig! That is rarely reported; so you mind sharing the brand/style you ended up getting?
hsacc - The Paxman system is one of the machine types that is already in place at your chemo center. Dignicap is the other company that provides the machines. Angiepie used Chemo Cold Caps, I used Arctic Cold Caps, and many here have used Penguin Cold Caps. All of these are gel caps that must be rented from the company and then frozen in either a medical freezer (if the facility has one) or using dry ice. Read through several pages of this thread and/or seach key words to find postings about each. If you haven't already, you may also want to take a look at http://www.rapunzelproject.org/ColdCaps.aspx
0 -
Magari - here's the link to the wig. It's synthetic hair fibers so it's not 100% natural. I didn't want to spend too much on it as I wasn't sure how I would feel in a wig. It cost about $260 so though it's big cost, it's not like a real hair wig (which can be in the $1,000 range.). I like it so far. It doesn't look fake and it moves well when I move my head. I used it once so far to test it out. I went to Publix today and I felt great in it.The real test will be this weekend as my family is going to a kids birthday party. I'll let you all know how it feels afterwards. Hopefully it won't itch or shift out of place. 🤞
I got mine in the R4/8 color which is not exactly my hair color but pretty close.
https://cysterwigs.com/products/aspen-by-estetica?variant=46501691090
0 -
PBello - Super cute and very natural looking amount of volume! Esthetica has beautiful styles but the brand runs too large for my tiny skull.
After a couple of fails, I am happy with this one (also ordered from Cysterwigs): https://cysterwigs.com/products/tatum-by-amore in the Ginger Brown, which is close to my natural color, and similar to yours! I am wearing it with a side swept part/fringe, like the last client photo with the glasses. I felt the same way you did about keeping to a lower price point in case I didn't end up feeling comfortable. Also liked that synthetic was lower maintenance, which is exactly what I'm looking for at this point.
Re keeping a wig in place: Pro tip I got from YouTube - Got2B Ultra Glued styling gel along edges of wig cap (if using) and front edge of wig to hold it in place. https://www.target.com/p/g-246-t2b-ultra-glued-invincible-styling-gel-6-oz/-/A-15088485 Cheap and it works! Water soluble; just use a wet washcloth to dissolve when ready to remove.
0 -
This just made me smile this morning!! Hope all are feeling well!
0 -
Curly-head-- I stopped chemo in Jan last year and I had small fuzz on my bald spots by March. They are about 5 inches n length a year later. Mine were under my sides and filled in by late April.
0 -
Good morning ladies!
Been a few weeks since I have posted and I am happy to see how well you all are managing through treatments. Magari, Pbello, Amelia, Schlomit (congrats on LAST chemo!!🎉😍), Lizbeth and lovesgreenthings/Anne-- so great to read all your messages since I last posted! And welcome to all the newbies!
I am about 10 1/2 weeks PFC and have been shedding this entire time.... my last 6/6 TC infusion was Jan 30th. I don't know where all this hair continues to come from and it has really gotten thin, but the bald spots I had were along my hairline behind my ears and they have filled in nicely. I cannot really tell if other hair is filling in yet-- I think it is but it is all different lengths.
I had been using a color powder to fill in areas in the front of my scalp that looks thin, but I just broke down and bought some Toppik too though haven't used yet. I am still washing about every 5 days which has been tough since I have regained quite a bit of my energy and resumed my old fitness routine which includes a ton of sweat. I wear my hair in a French braid most days.
I saw you all were talking wigs and wanted to chime in about the halo I just bought. I have a couple of weddings to attend next month and though a halo would add some nice and needed volume so I did a ton of research and found an amazing woman named Lorichelle on Etsy that sells custom made real hair halos and toppers. One of my fellow season of cappers-- TravelGirl --has loved using a topper to cover her bald spot on top and add fullness-- I believe she posted pics of hers several weeks back as well. Anyway, Lorichelle had me send pictures so she could do her best matching my color and I just received it yesterday and it is perfect! I cannot get over how well the color blends and I cannot wait to have my hair cut with the halo in order to best blend the two. I will be sure to send pics in a week when i have it done! But for now, here is her link at the bottom in case any of you are interested in learning more for yourselves. My thick, custom, real hair halo cost just over $130 with tax and shipping! Etsy was running a special that saved me about $15 from normal pricing.
Otherwise, like others before me, I lost all my eyebrows and most lashes PFC, and the brows started filling in last week and hoping my lashes are to follow as I just started using CareProst (a generic form of Latisse) that a friend gifted to me. Oooooh--and I am thrilled to share that on Monday my insurance authorized me receiving proton therapy out in Houston and I will be on my way there this coming Monday and starting my radiation treatments on Tuesday! I will be living there for 6 weeks to receive treatment. Tough to be away from my family for so long, but such a better option for me as a re-radiated patient. Yay!!
Please let me know if you have any questions about my new hair piece-- I have to come up with a name for it-- my husband saw it on the counter and thought it was a rat so now wants to call it that, but I refuse! Ha ha! I want to give it a happy name since it makes me feel that way! 😃 Hugs to all of you super women! 💪🏼💥
https://www.etsy.com/shop/BlondeCity
0 -
Today was wash day and I decided to use a little heat on my ends for the first time in 6 months just to tame my curly frizz....And I feel so pretty and so blessed by my family for gifting me cold capping! I tried my new halo on but it needs to be angled into my hair-- so next picture will be after a cut and with my super halo hair! 🦋😘&s to all!
0 -
MamaFelice - looks fantastic! From that pic I don't see why you would need a halo.
0 -
MamaFelice - You feel pretty because you ARE pretty! Thanks for sharing such a lovely, happy photo. And I look forward to seeing then next one with your halo (though from this pic, it doesn't look like you need one!)
I had my brows microbladed yesterday. It was a splurge for me, but I consider it a worthwhile investment. I asked for a little more of an arch than my own brows had, even before they began to thin. They are definitely thicker than what I've been accustomed to looking at, so seem a little dramatic to me right now, particularly in contrast with my thinning, frizzy hair. But the individual hair strokes look very natural, they are not too dense, and I think as they settle in they'll be perfect. They already work well with my wig, and will be great with my own hair when it fills in.
My ultrasound earlier this week showed no evidence of a blood clot. Which would be good news, except that I continue to have daily neck/trapezius pain and a clot could be treated with blood thinners. I met with my port surgeon this morning and she wants an MRI before she decides whether to remove the port or not. Since I have lousy veins and 8 more months of Herceptin/Perjeta infusions, she might put in a new port on the other side. But she said she does not want to remove/replace as a single surgery, in case the pain is caused by the port. So all of this is going to take at least a few weeks, and possibly involve two more surgeries.
Right when I am about to go back to work. Sigh....
0 -
MamaFelice- you look amazing. Your hair is still beautiful. It’s great that you have your energy back. You really are an inspiration for all of us on this thread
0 -
mama felice- you look amazing!! I'm gonna check out that etsy site! I agree it doesn't look like I need the halo! How long after ur last treatment did u lost ur brows and eyelashes..was it gradual or just like over a couple of days? I have my last treatment thurs( woohoo!) and I'm a little anxious of them all falling.. but I know its bound it happen! Keep us updated and let us know when ur shedding stops!
Magari- before treatment I also got my eyebrows microbladed.. my eyebrows slightly thinned so I can see the color underneath ..I never went back for my touch up so I can do that after my treatment if I need to...although it killed so don't really want to haha. And the color def fades after a little while .. I hated it first!
0 -
Bumping for myaconfusion, new member.
0 -
MamaFelice - you are gorgeous! I can't even believe you need a halo! Its amazing you are still shedding but the taxanes can stay in the system for a year
JLove1821 - I regret not getting microblading done prior to treatment. I still have brows but am still doing Taxol, so anything can happen.
Pbello - I'm happy you found a great wig! It means so much to be able to wear one and feel ok in it.
Cold cap session 8 today --- hating it as much as ever. 8 more to go! Half way through and hair still falling out. Amazing there is still any left ....
0 -
Thanks @ 2catsintheyard and Amelia01: I went ahead and had the lightest trim and combed it myself during the process which was really very quick and she was very gentle and understanding. I didn't notice any negative effects after aside from my normal shedding. If anything it just made me feel a little better having some control of the never ending bad hair days!
0 -
I just got permission to take Biotin, a supplement that promotes healthy skin and nails. Apparently it can help promote hair growth, and my hair is starting to look thinner in spots than I would like. Here’s hoping it help.
BTW, Biotin is a supplement pill, not to be confused with Biotene, the mouth rinse we use to fight mouth dryness and mouth sores during chemo. Maybe some of you know the difference, but I got confused.
0 -
Hi!
I just had my first of 4 A/C treatments last week Thurs. Is it too late to cold cap for the last 3 treatments? I also have taxol x 12 after that.
I was so overwhelmed and my MO dismisses everything like hands/feet icing for neuropathy. I’m taking charge now!!!
Thanks!!!
0 -
Unless you're Chemo Center is equipped to handle cold caps they are sent to you with a cart to transport them and dried ice. All togethet it weighs about 50 lbs. You must take someone with you every time to change the caps. When I called different places the ballpark figure was about $400 a month plus shipping. You can find various companies on the internet. Unless you live in specific locations they cannot provide anyone to go with you. The one company that did charged $80 an hour for nurse. I'm a short woman with bad health and not too many friends. As there is no guarantee I skipped it
0 -
ElizB, I’m afraid it is probably too late to start cold capping after one treatment - especially AC. At least I haven’t heard of anyone successfully cold capping in that situation.
0 -
ElizB,
I don’t know about AC treatments - I’m on TC. They have me ice my hands and feet only for the hour that I’m on Tax because that can cause neuropathy. Does AC cause neuropathy?
0 -
ElizB, I think it's too late to start cold capping now (especially with AC). You can always contact Penguin Cold Caps and ask. You don't need to ice hands/feet on AC as it doesn't cause neuropathy. However, you should do icing while on Taxol. Good luck!
0 -
I'm not sure how active you are on the site at this point.. but I'm dying for information. My mother was just diagnosed with breast and lymph node cancer. She is interested in the cap, but the doctor has scared her with ideas of unbearable pain... I have a feeling he just doesn't want to deal with it.. Can you please explain your experience with pain and side effects from the cooling cap itself???? Thank you soooo much.
0 -
tmarrington - welcome! Sorry your mom is dealing with BC but happy she has you to support her and research/advocate on her behalf, and glad that you found this capping thread!
My medical oncologist actually suggested cold-capping to preserve my hair, and I was so overwhelmed with everything that I said no. I didn't believe the cold capping company's descriptions of "intense cold for the first 10 minutes, and then you stop feeling it" because I figured of course they are going to downplay how awful it is. I HATE being cold, and for me, the thought of being miserably cold with a painful headache for 7 hours x 4 treatments sounded like torture. And then I checked here, and the wonderful ladies who capped before me told me what it is really like - and it's very much like the company's say. It is very cold for the first cap or 2, but having warm blankets/an electric blanket/heated infusion chair and sipping on warm drinks made it very bearable. After that, your head really does go kind of numb so you stop feeling it. When my first cap went on, I asked for something for headache, and they offered everything from tylenol to morphine thru my IV depending on bad it hurt. Tylenol was all I needed (and after that I would take 2 before driving in for chemo treatments, so it was already on board and working), but there are a lot of options if it is uncomfortable. You can always choose to stop and send the caps back for a prorated refund of that month, but you have to cap from the very beginning of treatment so it's not something you can do successfully after beginning chemo.
I hope you and your mom have time to look at the options and figure out what will work in her situation. My doctor is a huge proponent of it, and just brought 1 of the Paxman systems into our hospital's infusion center. I expect that they will be adding more, since there have been a number of women (and a few men) cold capping with the gel on dry ice type caps.
Hugs to you both!
Willow
0 -
Tmarrington-welcome and thanks for being your mom’s advocate. I too cold capped. While we all have varying degrees of success, overwhelmingly most say we would do it again.
I had no real trouble with the cold, just follow the advice of your cold cap company. I very highly recommend Lisa, owner of Warrior Caps. I had a great experience.
Feel free to ask any questions.
0
