Cold Caps Users Past and Present, to Save Hair
Comments
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KD- I had the oncotype and I really didn't need it. My lymph node mets plus being premenopausal were enough reasons to do chemo even though I didn't want it. My oncotype was actually fairly low. But here's the thing, and this is what helped me make my decision: You have 1 shot at getting this taken care of without it coming back. I wanted to do everything I could, because I know if I get a recurrence I would have regretted not doing chemo the first time around. At least now if it comes back, I'll know I did everything I could. I'm also under the impression that being her+ is high risk and chemo is usually done. I'm not an oncologist though
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Runner - you're absolutely right. I'm just so frustrated with my hair most of all, and the other SEs I didn't know about that I'm second guessing my decisions and hence should've, would've, etc. coming to mind now. My oncologist is a very caring physician, and not to mention an expert and researcher in HER2 field. I had a second opinion as well, she had the same thougts. God willing we're done with this disease and won't have to go through this nightmare again. Thanks.
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Hi all! I am 4 months past chemo, and I kept nearly all my hair. I was very pleased with my results. But now I am worrying that my hair isn't really growing. Does anyone else think that? I have not had it cut since January (right before chemo). I would expect it to be longer by now. I know it has grown a little b/c the ends are getting uneven, but normally my hair grows pretty quickly. I have started washing in the shower again. But I still only wash every 2-3 days, and I still have no used a blow dryer or any styling tools or products. I hope this is just b/c my hair and my body are still recovering from chemo.
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Hi all,
Does general Anastasia cause hair sheeting/loss? I have expander replacement surgery on Thursday and was wondering about this. I have only 30% hair left and still shedding, so this added bonus is not what I would appreciate.
Today is day one of the 9th week post chemo and shedding continues
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I did notice a lot of hair shedding after my double mastectomy which was general anesthesia. But I had my implant exchange on August 12, and did not notice any shedding this time. Maybe it has to do with how long under or which drugs were used? I was under maybe 5 hours the first time and only about 2.5 hours this time.
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JCS28 - thank you. I had no shedding after my single mastectomy, so hopefully I'll scape the shedding this time around also. The surgery's supposed to last 2 hours.
How's your recovery going? Hope you're doing well
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JCS28, I lost quite a bit of hair my BiMx too. Glad you kept most of your hair which caps did you use? Are you taking any thing like biotin? I think why we lost hair is bc of interruption of hormones when the breast tissues was removed. Since our breast contain them
KD2016, fingers crossed for Thursday! I'm still doing chemo but would like to knw the same thing. On my #3 Thursday I'll hve you on my thoughts that day!!
Only thing I can think of is staying hydrated bf and after surgery. My drs kept pushing protein and hydration to recover. Our hair needs those and nurishment omega 3/ mono saturated foods. 0 -
I used Penguin Cold Caps. Yes, I took BioSil and Silica and am still taking them. My skin has been really good, and I think that is part of it. Or maybe it's the chemo drying it out. Or maybe it's the change in hormones. Who knows?
KD2016 -- my recovery is going great! I feel back to normal! I went back to work after about 9 days. I think I could have gone even sooner. My energy is completely back to normal. I'm 18 days post-op now. The only remaining discomfort is still a little bruising feeling in my abdomen but it's very minor at this point. Most of my scars look good, but the ones under the breasts still have some scabbing. I was fortunate to not have to have drains again. I am still frustrated that I am uncomfortable at night b/c I have to sleep on my back. And the Spanx are uncomfortable. But overall, I should not complain. This surgery has been very easy for me.
Good luck to everyone!
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Hi All,
I had my first chemo August 17th and am using "Actic" Cold Cap Therapy. My second of six chemos is Sept 7th (they are all three weeks apart). I am trying this because the infusions I am getting pretty much guarantee I will lose my hair. My kit requires I start the cold capping 45 minutes prior to infusion, use it throughout the infusion and continue for 4-5 hours after the infusion. Since my infusions are 4 hours long, that translates into almost 10 hours straight of cold capping. For anyone doing this, you really need a second person to help. My friends formed a "Cold Cap Brigade" and since it requires so much time and labor, split my chemo day in half. One friend helps me the first half and another the second half. Other issues to consider are the requirements your kit needs you to meet to freeze the caps themselves. Mine have to be frozen with DRY ICE starting 24 hours before the chemo. BTW, it was not so easy finding a dry ice distributor who would supply me with that small amount. The day before every chemo, I drive to the supply house to fill up a large cooler with at least 50lbs of dry ice. At home I have to distribute the ice pellets evenly inside of EVERY cap (my kit comes with 8 to rotate).You cannot use a regular freezer or regular ice with my brand. I am not trying to scare anyone off from using this, because if this is successful, even mildly successful, I will feel it is all worth every moment of effort.
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Hi CAVU,
Just wanted to say welcome to our group! As a former cold capper, I agree - it's a lot of work and dedication. But I am so glad I did it!
Best of luck to you as you continue through treatments!
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JCS28 - I hope I won't have to have the drains either. May I ask why you wearSpanx?
All dear ladies - I saw my derm yesterday. He confirmed that I have about 30% hair left😢, so unfortunately cold cap didn't really work for me. He recommended I should cut my hair very short and get rid of the cotton candy hair (although we both thought that it'll be challenging for my stylist since my hair is very thin on top, besides the cotton candy gives the illusion that I have hair). He thinks it's very unattractive and no reason to hold on to it. He wasn't happy about the fact that I'm still actively shedding. He also recommended Rogain foam for men (which I won't do), and introduced me to Vividscal Professional hair growth program supplements. I have been taking biotin and silica right after my chemo, he said his clients have been very happy with Viviscal so I decided to switch to it. What do I have to lose. Not much hair left anyway. They sell the supplement at medical offices and salon professionals. It has a whole hair care line. Their website is:
Viviscal professional.com
Just an FYI and I thought I share what learned yesterday.
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CAVU, I used ACC and it is a success. I am 6 weeks pfc. But My regiment was every week for 12 weeks. 6 hrs of cold capping each time. Feel free to contact me if you have any questions.
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KD2016, thanks for all the info! Why won't you try the rogain? They have it for women too.
CAVU, JC how did you determine the duration of hours for capping? My info just said min of 4 hours. I did do 4 and half.
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Thank you viktoryak, I'm in it for keeps.
Meow0369, Arctic was pretty specific with me about when to start and stop. Yes, the 4 - 4.5 - 5 hours after infusion is a little arbitrary but I decided wearing the cap longer is better than shorter.
Meant to include the drugs I'm getting. Carboplatin, Docetaxel and Herceptin.
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Meow - he said Rogain for men is more effective. I won't do it b/c it means washing my hair daily and then applying the foam to the hair, just like you would with a styling product. Washing is the most stressful activity for me right now since I shed the most when Iwash my hair. Can't imagine the daily torture. I wash my hair only every 5-6 days now.
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KD: Thanks for sharing info about your derm visit and the supplements. Again, so sorry for you about your hair:( Sending good thoughts your way that your hair will respond well to Viviscal and you'll feel more like yourself in a few months.
I have a very similar protocol as you (TCHP) but it's 12x instead of 6 and includes Taxol instead of Taxotere. I'm almost thinking of stopping the cc'ing. I am just not sure I have it in me - I've only done 3 of 12 rounds. Feeling so sick with this new protocol and just the thought of the caps is more than I can bear (at least today). Maybe tomorrow I'll feel differently. I haven't lost any hair yet but I'm just at day 20 from first infusion so I'm sure it's coming.
I was looking at the Dignicap info. Clearly can't get enough of this crazy hair obsession despite what I just said above. It's odd to me that they recommend washing hair day of capping so that it's not greasy, (apparently grease affects thermal contact?). Anyway, just like the wet vs dry hair with ACC vs Penguin there are some differences in instructions w/Dignicaps Also diffs on the temp ranges. All I can say is capping will be much less barbaric when centers get Dignicaps.
CAVU - best of luck to you. Lots of people do well with the capping! There's great info here and uplifting pics if you look back through the thread. And on a positive note, last week my husband was dropping off caps at the biomed freezer/infusion center and ran into four (count em, FOUR, in one spot) ladies who had capped and had good hair. (He sent pic).
Good wishes to all.
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Willa216 - please don't give up. A lot of ladies have had success and you never know until you get through it. You can do it. I was only able to see one lady at UCSF who was on the same schedule for infusion day as I was, didn't know her regiment and was one cycle ahead of me. She looked amazingon her last day. So hang in there. I tell myself at least I did my best and it didn't work.
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JCS28, I'm guessing you're still on Herceptin, correct? From what I've read Herceptin slows the hair growth, sot his might be why it looks like your hair is not growing.
KD2016, anesthesia does not cause hair loss, but the stress your body goes through in surgery might.
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CAVU who did you speak to regarding your capping time? I really didn't get specifics but only turtorial video and booklet from Arctic.
KD I only wash once a week or so. I switch shampoos that helped my super dry hair.
Got them from salon. They are for damaged hair and contain keratin that's what's in hair. Made a difference in softness. I may not hve alot of hair left but hope this helps w future growth (when it happens)0 -
thank you Meow. I'm currently using Living Proof - Restore shampoo, and used Argan oil on my hair and even scalp the last time I washed my hair. Going to use the oil going forward. Again, my hair is just horrible, it's just air, nothing left. Haven't seen anyone's picture so far that even come close to my awful hair
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I completed 6 months of chemo and rang the bell at my clinic yesterday! I have not posted very often on this forum but have read it regularly and am thankful for all of your help. I wanted to share my cold capping experience especially for those with the A/C +T regimen. I used Penguin Cold Caps and followed the recommendations pretty closely. I did wash my hair with cold water in the shower on a light mist setting on my shower head. I used Onesta shampoo and Onesta conditioner on ends. I used apple cider vinegar capful to manage early cradle cap symptoms on scalp. I started with thick hair but thinner always on sides and front. I should also note that through menopause I had already shed a considerable amount of hair prior to my cancer diagnosis. I had girlfriends cold cap me for the first 15 infusions and my husband did my last one yesterday. I used the frozen bands for hairline as well as the caps. My clinic had the Rapunzel freezer which made logistics easier. I was able to leave my caps in there through the whole 6 months. I had my huge shed exactly at the 2nd A/C infusion (21 days). It was awful. My hair continued to shed throughout the next 3 A/C infusions but not too bad, mostly noticeable on wash days. Just when I thought things had settled, I started weekly taxol and I had another significant shed approx near the first two weeks.The shedding then settled again into an acceptable level. I had a bit of a breakdown 6 weeks into Taxol when my hair was just soooo thin on the sides so I went and had a 1" trim on the ends. I did that after #8 and it really helped my hair look a little better. The no coloring and no styling is really the worst part. I think I used my professional styling wand, set on the coolest setting, 3 or 4 times for special occasions to slightly curl the ends. This photo was this past weekend going out for birthday and I did the same styling on ends. No hair dryer ever. On a side note I have barely any eyebrows or eyelashes. I have noticed a little bit of hair growth in the form of gray curly bits at front hairline. Can't tell if I've got new growth underneath yet or not. My hair did grow during the 6 months, I could tell because of dark uncolored hair and grays. I lost most of my hair on sides. It is very very thin here. I never needed Toppick but am using Madison Gray powder on grays near front only on special occasions. I had a hard time tolerating the cold of the caps so always asked for ativan in my premed drip. I used moles skin on my face and ears for protection and never got freezer burn. I took biotin all the way through. I started taking B6 and glutemine at the time I started Taxol. I iced my finger tips and never got nueropathy. I used OPI avoplex cutlicle oil and OPI nail envy nail strengthener. My nails are fine. The worst SE for me was the 30, yes 30!, pound weight gain. I guess I ate my way through chemo. I move onto radiation soon. I hope this helps those new to capping and again for those facing the A/C + T regimen which is known for poor hair retention with cold capping. I was pleased with my results. Off to pack up my caps and ship them back. Best of luck to everyone!
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BBwithBC45 -- Funny you should ask... TODAY is my very last Herceptin!!! WOOHOO!!! I did think of that. But I also had Herceptin and Perjeta before surgery and before real chemo, and I didn't notice any difference then. But maybe it had slowed it.
KD2016 -- I have to wear Spanx for about 8 weeks post implant exchange b/c I had fat grafting. It reduces the abdominal swelling and makes it smooth, I think. They do liposuction from the abdomen to put into the new "breasts" to even it out. But I feel great otherwise. It's just so hot right now!
I thought I would have drains if my PS had to add more Alloderm. But he was able to create the "breast with my tissue and fat grafting. Thank goodness. Now I just hope I don't have to back for contouring. Time will tell.
Meow0369 -- My recommendation from Penguin and from a helper in town was 30 minutes of capping before drug, then capping during my 1 hour of Taxotere, then continue capping for 4 hours after Taxotere. That 4 hours included my Herceptin and Perjeta. So I usually had about 1.5 hours after I was all done to continue capping. Sometimes I could stay in my infusion room, but sometimes I had to go to a waiting area. I did have access to a freezer, so that was helpful.
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Iloveart-- you have no idea how I appreciate your post! I am also doing PCC with the cold band (an absolute necessity, I think). I am on the same protocol as you but doing DD Taxol. So a total of eight weeks for all every other week. I am doing third A/C today and about 4 days ago started shedding on sides after nothing up until then. My sides are where my hair is thicker so maybe not as much cold gets there. I am glad to hear that is normal and hope my hair looks as great as yours at the end! Mine is growing too as evidenced by the gray roots, ugh! I may have to resort to some non-chemical touch ups. I use biotin and nail envy also with great results. Thanks again for sharing and congratulations! I cannot wait to send those caps back
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LoveArt Congrats!! You look great! Wish my results were just as good. You did a marathon of capping. Go celebrate!!!
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Wow. Iloveart, you look great! Congrats on persevering! That is a lot of treatments to cap through!
I have no idea what to expect really. My hair is very thin to start with, so not sure if that will work with or against the caps. My #1 goal is to prevent permanent hair loss with Taxotere, so if I can achieve that, I will be happy. Anything else will be gravy. At the very least, I expect my hair to be fried from all the cold and will likely do a very short cut when I'm done. I don't have the face shape for a pixie cut, but maybe I can find something that works.
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ILoveArt - You look so good! Inspirational!
KD - Thank you for your encouragement on the capping. I'm going to try again again on Friday. When I start to focus on the big picture I fall apart so I'll try again to take this day by day. Good luck with your surgery tomorrow- hope all goes smoothly. Sending good vibes your way.
Aimless - Hope you're doing okay with your empty nest. That's big.. Hugs.
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Willa2016 - you'll be fine and will get through it. Take it one infusion at a time. we all got through it. I honestly never ever thought I get this far along. I'm not strong at all, and from day one focused on my hair a lot, hair actually happened to be the most stressful part.
Funny Kechla mentioned pixie haircuts. I've been going through different pixie styles and planning on seeing my stylist as soon as I'm able to after tomorrow's surgery. It'llput me almost 3 months PFC and I've followed PCC protocol long enough. Washed my hair this morning and am so fed up with the shedding. At least with a short hair it won't be so noticeable. I've thinned a lot on top and sides so my poor stylist has to perform a miracle to make me presentable. We shall see.
Good luck on Friday. Good thoughts for all of us. Hugs.
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JCS28 - thank you for clarification, and I hope you continue to do well toward complete recovery.
Hopefully my exchange will be easier since I'm getting a silicone implant in one breast and just a lift on the healthy breastto make them the same.
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KD - thank you. Here's to beautiful pixies...
Has anybody cheated and used root cover up while capping? If so, can you use that and/or Toppik during actual capping or does it need to be removed prior? I'm sorry if this has been previously addressed but I'm not clear. I asked Penguin rep about Toppik, TouchBack and Style Edit. She said they won't comment either way. I realize it's best to be strict in following their guidelines but some of the rules don't make sense to me (like no coffee - unless that's a dehydration thing).
Thanks.
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Hi all. I just washed my hair (it's been 11 days, my longest stretch yet). Not as traumatic as expected. I started using FAST for the first time tonight. BUT I DO WANT TO REPORT that 8 weeks PFC, the bald spots are almost gone - the crazy wiry gray curly hair that's growing in is replacing the bald spot at the crown of my head. It's very encouraging. I feel like I've been through the worst of this. Mind you, my hair is not anywhere close to where I want it - but it is growing. (Been taking silica and biotin for several months) Hang in there ladies -even a bad result (mine) can turn around! Finished radiation yesterday, and other than a little skin breakdown under my breast, it was uneventful- my daughter is happy at college and I'm feeling optimistic. I wish the same for us all!!
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