Cold Caps Users Past and Present, to Save Hair
Comments
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jstan, I got my usual haircut from my hairdresser. I have short hair so i just shaped it back to my old style. I actually had a haircut before to (3 weeks pfc) but just tinny trim and my hairdresser used that Horse comb (i call it this way a comb provided to us by cold cap company).
Now I am debating coloring... Hope to get feedback from ladies here if ok to use that color 7 weeks pfc...
I was on Taxol so it is easier for hair then other regiments, plus my short hair, so it is probably different from some of you girls.
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So, I am on day 12 since my first round of TC. Still no identifiable hair loss, but I know that usually comes around day 14 for those who do not cap. When should I expect to start seeing increased hair loss with capping? I've been washing about every 2-3 days. Hair still gets pretty oily after day 2. Also, I had pain on the top of my head after my first round of caps. My hair is pretty thin, so thinking it was probably too cold. Geralyn asked me to give her a call to discuss before my next treatment, but think I will wait until next week to see if any other questions come up too. No hair loss (frostbite), but the entire top of my scalp did peel. Anyone else experience this?
Also, when do the fingernail issues usually start to occur? I did ice fingers and toes and haven't seen any changes yet. Maybe too early to tell...
Anyone have extreme breakout after treatment? My face was awful. I think it was probably from the steroids. Mostly in my jawline and cheek area.
Hope everyone is having a happy healthy week!
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Kechla, I started to see "shedding" week 4 with cold caps. I have very thick hair, so I may have more shedding than most because so insulated. It's been 2 weeks, still shedding, but have full head of hair. I only wash hair every 2 weeks though. It's tough but I have short, curly, dry hair and it actually looks better a little dirty. I have to use a bit of oil to bounce mine up a little, yours will dry out as you go on. I think you are getting "freezer burn" on top of head, you may want to put a protective layer of something or you will get bald spot. You only need to ice hands with taxanes, cytoxen does not both nails. I just use thick top coat on nails. Good luck.
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Jiffrig, I would love to be able to go that long between washes. As it is, I nearly slip off my pillow after 2 days. Ugh!
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Victroyak - your hair looks great! Mine is short also but significantly thinner than yours, although I started with super thick hair - stupid TC and AC, lol. Yours looks awesome though, congrats on the great results!!
Kechla - when I did my TC I started shedding about day 18 after my first treatment, a big shed to start and then it slowed down some and picked up a bit again with each treatment. I think if I only had to do TC I would have had pretty decent results as it was holding well after three rounds.
I am 11 weeks pfc this week and itching to get a haircut! My shedding has slowed a lot and I can actually see/feel some regrowth starting to fill back in. My hair is still sooooo thin though. Most of my loss was actually after chemo - not sure if that was due to the change to AC or it was destined to happen either way. I started a heavy shed three weeks pfc and it just kept on going until the last few weeks. I am now back to what I would consider a light shed. Still washing with my cup in the shower, lol, but could probably switch to the shower head soon. I am also still washing only once a week but honestly it is so dry and thin it really doesn't need more than that. I am also back to conditioning it regularly. I am going to give it a few more weeks and then have it trimmed up into a cute, short do - I hope!
I am also interested to hear what others say about coloring - I am ready to pull the trigger but don't want to do more damage.
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Aimless- how's your daily shedding? Mine had slowed down some last week, from some 100 strands to probably half, but I had tissue expander replacement surgery last Thurs, and daily shedding picked up again 😭
Wash days are still tough, a lot of shedding. Washed my hair last Wed and today is wash day but I can't take the stress so not washing it today.
This is the beginning of 10th weekPFC and I wonder if this shedding will ever stop?? Overall I barely have any hair left. Not sure if I should start wearing my wig since it makes the shedding worse I assume.
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Kechla, i had a lot of breakouts while on chemo.Felt like teenager. I have also breakouts last few days...maybe too much chocolate? I don't eat cakes or cookies but load up on dark chocolate daily.
Runner, how are you? Haven' t heared from You in a while. How are you copping with lost of your friend ? Did you get tests results for your muscell aches?
I have been experiencing a lot of leg muscell pain especially tendenites area. While receiving Herceptin , I asked chemo nurse yesterday about it. She said I should not Exersise daily...should let muscells rest....well...I didn't go to gym today but had a long walk from my radiation to subway.
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KD2016, how did your surgery go? I know this is supposed to be about hair but I will be having the same surgery in November and i'm curious??? Did you stay in the hospital overnight?
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jstan81963 - it was easy! I had one expander replaced with silicone implant, and breast lift on the healthy breast. It was an outpatient surgery. I had a drain also that was very uncomfortable and painful. The dr took it out yesterday, and I'm fine. A little sore but that's all. Took antibiotics while the drain was in place. I just have to take it easy as far as lifting stuff and movements, otherwise fine
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KD2016, thanks for the info glad you are doing so well. Sounds like I am having the same thing done! Was the drain as bad as the ones from the first surgery? I had 2 drains
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Thank you. I had 2 drains as well with the first surgery. Yes I hate to say it was as bad, but they take it out sooner. Good luck with yours. Keep us posted.
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hello. So I am starting chemo next Tuesday. had a meeting with my MO. Asked if the center provided cold caps, she said no. and she didn't know anyone in Mass. who did it. She wouldn't prevent me from wearing one if I get it on my own, but she said she didn't see the logic of restricting access to parts of the body if the goal of this therapy was to "systemically" target cancer cells... I haven't read all the posts from the beginning, but thought those of you who have recently gone through the experience could offer some insight. Thanks
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no one provides them, you have to order, rent, them from penguin cold caps or artic cold caps. There are a few others, these are the biggest ones
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Smilethrupain,
Regarding your oncologist's attitude against cold caps and the possibility that the chemo might not reach a cancer cell hiding out on the scalp -
If you go to page 474 of this thread you can read several comments with links to studies that discuss this issue. Bottom line, studies have shown the chances are very remote, less than 1%.
Hard to believe, but some oncologists are just not familiar with cold capping and associated research. My oncologist, who is at a well known teaching hospital, didn't have a problem with capping.
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smilethrupa: I am in MA too and was treated at DFCI and MGH. All of my providers were very supportive of the cold caps from beginning to end. It is true that no centers here have the Dignicap or Paxman systems (some hospitals in CA, FL, TX do) so you have to order or rent from Arctic or Penguin, respectively.
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heidi16 thank you. Did you insurance cover it? I'm at DFCI for infusions
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smilethrupain,
Please check out these reference threads for newbies, but keep posting HERE, not on those threads. This is the active thread for asking questions.
Cold Caps FAQ's - newbies - how to save your hair from chemo
Cold Caps: Success Stories with Photos here!
And while I'm at it - anyone who is finished and wants to post their success story on the above thread, please do!
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smilethrupain: You will be treated at a good place! I submitted a claim for reimbursement for renting the caps but it was denied. Some people on here had success getting caps covered so it probably depends on the insurance company and the reviewer.
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Jiffrig - You are so right!!! I am finding my strength. Yesterday was my first treatment and I did cold cap and ice hands and feet. Only issue is that the nurse said I don't need to cold cap during the perjeta portion so I think that I messed up because I was just told that perjeta does cause neuropathy and hair loss...... Oh well. It was hard but I will keep doing this.
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The Rapunzel Projects website has some great tips for getting insurance to cover... You should check it out.
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victory, I got highlights at 10 week I think. It was fine. By then my hair was almost don't falling out. I got my first haircut about 3 weeks PFC and my stylist didn't realize how fragil my hair was and she pulled out a lot of hair and got a funny look on her face. She switched combs. Haha!
Thanks for everyone's kind words about my friend's suicide. I had a fun Labor Day weekend and that helped a lot.
I went kayaking 8 miles and I learned that's apparently my threshold for getting lymphedema because my arm really ached and I had fluid under my arm and in my back that night. I tried to give myself one of those drainage techniques and it got rid of the pain in my arm but my back was still swollen. I got a lymphedema massage yesterday and the lady said she was guessing she got 2 pounds of water out. I felt so much better! And I believe her about the 2 pounds. I peed almost non stop the rest of the day. So today I sucked it up and bought some very unattractive compression bras and sleeves to use for now until this resolves and then for later when I do things like rowing.
It's nice to feel good enough to do stuff but I guess this is when we are really challenging our lymphatics. It's all new territory for me. I think part of mine was also caused by radiation. Now that I know my size I got online and bought stuff in cute colors. So beware guys! When you start getting more active, lymphedema is real!
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KD, my shedding has slowed (8.5 weeks pfc), but I think it's mostly because I have so little hair to lose. ;-) I have fuzzy new hair all over my head from stubbles to a few inches - and about 20% of my original longer strands - so I'm hoping that in a few weeks (12 weeks PFC) I will do color -and an all over cut - something short and sassy.
I think the bottom line for me is that I feel so well - especially compared to CHEMO HELL, that I am not stressing the hair as much as I was. It looks lousy - really - and I probably should be wearing my topper - but there's hair to cover my head, and screw it - this is me now - I am REALLY avoiding having my photo taken so I don't have to have memories of this stage. I imagine the color and cut will improve my mood remarkably . Sticking to the 3 month pfc cold cap "rule."
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Thank you Aimless. So glad to hear that the shedding has slowed down, and more importantly you're feeling well. Every night I pray that next day I wake up to a shed free day, that day hasn't come yet. I'm seeing my stylist on the 17th (10 weeks and 4 days PFC) for a short cut and color. I've been checking out very short pixie cuts but I'm afraid I don't have enough hair for even a short cut, since this cotton candy is just poof that covers my head right now. We'll see if he can perform a miracle.
My eyebrows are filling in nicely but slowly. Lashes too coming in. Not sure if I have any new hair growth yet. I used to get a haircut every 4 weeks, my hair used to grow quite fast. Those days are obviously gone.
I'm still wasing my hair in the kitchen sink and cold water. Are you following the protocol? Do you think we can style our hair using a blow dryer in couple of weeks?
Take good care.
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KD, sounds VERY similar to me. I just did a full "exploration" all around my head with a magnifying mirror. I have a lot of coverage - but not much length except some spots - which I'm "working." Same with the brows and lashes. But it really was like others said - brows fell out at 8 weeks out, and are growing in very quickly.
I am definitely still washing with the hand-held shower spray on a very light flow (practically a dibble!!) and on cool. I think by week 12 I may start a little blow drying (after color and cut). Seriously - how much worse could it be.
How are you feeling about this whole thing? Regrets? (except for the expense, I really don't - having avoided a wig all summer - and now - has been worth it).
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Has anyone success using a cold cap with the chemo TCH?
Thanks-learning all I can.
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Licata519, I had great success with TCH!
See my pics via the link in my signature.
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Aimless - Regrets? Mixed feelings. If I didn't try it, I would have always told myself I could have kept my hair and I didn't try. I honestly expected it to be a success. Everyone including my onco kept telling me that, and I was doing so well through 4 cycles of chemo out of six that I thought at the end I may lose 20-30%, didn't really expect it to be such poor result where I just barely have 30% hair left, not even hair, poof and cotton candy like.
I also know that I didn't have the courage to not do it and look at my bald scalp everyday for months to come. It Was so interesting that at the infusion center some patients who were not doing cold cap and even nurses were telling me I was "brave" for doing cold cap.
For now I'm hiding at home as long as I can and don't know what I would do when mid Oct comes and I have to go back to work. Maybe my stylist could do a miracle and I end up with a decent short cut.
This capping process has been by far the most stressful part of my cancer diagnosis and treatment.
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smilethrupain I also did my treatment at DCFI and did the penguin cold caps. There is a great dry ice place very near there (Bookline Ice) and they give you a discount if you tell them you are using it for chemo.
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RE when to treat your hair like normal. I am now 20 weeks PFC ( holy crap, I just did that math, can hardly believe it!!) I had my first tiny gentle trim at about 3 weeks PFC. ( I cut (trimmed) my hair myself a couple of times through chemo because the hair that stayed kept growing and I have shorter hair.) I had a real haircut at 11 weeks PFC. That was probably one of the first times I had fairly warm water on my head, and normal shampoo. And nothing bad happened!! So I switched to normal shampoo (Aveda) with the crazy thick conditioner to deal with the troll hair ( helps) and very little blow drying but an occasional flat iron. The last few weeks I have done fairly normal heat blow drying. I still need crazy conditioner as the hairs are all springy and rough otherwise. The flatiron helps a lot.
My shedding slowed down, at about 5/6 weeks PFC, then I had surgery and I shed like crazy again for a couple of weeks, and then it gradually stopped dropping. Left with I would guess 30% of my original volume.
Have not coloured it yet. Not really in a hurry to, because I don't think the chemo part will take colour well - each hair looks like a little ringed raccoon or lemur tail.
Now at the stage where the new hair is all about an in or inch and a half and I have weird short bangs in addition to my longer bangs and sticky up hairs at my crown. But my definition of what is "acceptable" has changed a bit through all of this and I just don't really care so much. Hit it with hairspray, and if I am having a less good hair day, I just avoid mirrors!!
The new hair does really make a difference filling in the volume, though, and within a couple of weeks of it starting to grow more, It felt a lot more like my own head again.
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I 2nd everything Zinny says. The new hair growing in really adds volume. My shedding stopped maybe a month ago. I don't know how many weeks that is after chemo but it was May 19th.
The really weird thing is I occasionally get that burned scalp feeling like I got during chemo when my hair would start to fall out. I'm guessing that feeling is more of a neuropathic pain process than it is hair falling out. I'm sure some scalp nerves were damaged during chemo.
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