Cold Caps Users Past and Present, to Save Hair
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Pamela. I know exactly what u mean. With the hairs all over sweaters. My oncologist asked if I had a wig cuz I should b bald by now. Lol. But your lucky to have only 4tc treatments. I have 6. I wonder what makes them determine the difference. I'm gonna ask on my next appt. I know. I plan to wash my hair again tomm I'm nervous. I only comb once a day. My taste buds are totally shot. My tongue feels the way it feels when you burn it with something hot. Good luck on wash day
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Hopfull2--I had that happen with my tongue/tasebuds the day after Thanksgiving. Taste is still not back but I don't feel that feeling on my tongue anymore which helps. Even water felt weird going down. I do realize there are certain things that are more satisfying to eat such as cold crunchy salads with a creamier cheese like goat cheese in it and pineapple. Not that I can taste it, but your mouth knows it's something sweet if that makes sense. It starts becoming a texture thing because everything is bland. It sucks this happened around Christmas with all the goodies around but on the bright side, I won't be gaining a lot over the holidays!
The only reason we decided to do chemo is my Oncotype score of 28. Before we got that back I was scheduled for radiation and tamoxifan. My genetics came back clear, maybe that's why I only have 4 rounds? You seem to have a high Onco score and with your family history maybe 6 is the norm.
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Day 25 post carbol/taxol and shedding has stopped. thinned but no bald spots. this is after doing a not so good job with 4 elasto-gel caps. only wore them about one hour post chemo, changed out q 30 min. next infusion delayed until next friday due to to platelets (again) but will do a better job, switch out q 20 min, wear post chemo 4-5 hours and maybe i can hang on to hair that is left. oh, didn't wet scalp, didn't check temp of caps. i figured they couldn't be any colder so why bother. am lucky to have hair left!
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I just finished round 3 of TC yesterday with one more to go. Feeling a little shot today. They started my chemo almost 2 1/2 hours late which just added to the cold capping time. Exhausted and cranky! As for hair, my big shedding happened right before the second treatment and lasted about a week. I felt like it would never stop but right after thanksgiving...it stopped. Afraid to wash my hair on Monday as I can't handle another shed...all in all though I don't think I lost more than 10% this far. Reading all this post chemo shedding...is a little scary but good to know!
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IL311--what was the pattern of shedding? You are a few weeks ahead of me with the same regimen. I just had chemo #2 and big shed was a couple days before when I washed it on Monday. Just washed today and still got a few handfuls. Does it stop in between or will we get handfuls out each washing?
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Hi Pamela23,
Same exact thing happened to me, big sheds after washing on #1 and #2. Felt like I was shedding for the whole week after chemo #2 I had lots of shedding in bathroom, when combed...and than it stopped for two weeks. Finished #3 on Friday...washing tomorrow and can see it is already shedding. That said...none says they can telll...but scared. Hang in there! Keep me posted and will do the same. Thinking of you
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PS, I can posted a picture tomorrow...
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Thanks IL311. Hofull2 is a week ahead of me and you 3 weeks. We are all on the same regimen. It's nice to compare experiences. I feel as long as I'm prepared, I can do this. It's the not knowing that stresses me.
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thanks Pamela23. I feel the same way. The not knowing is the worst. Feel like if I know what is ahead...I can power through!!!! If anyone is on their 4th and final round of TC...love to hear what to expect!
This third round has hit me the hardest physically...super tired and achy from Friday's transfusion...been in bed almost all day...so not me. But alas...it is cold and snowy in Chicago so Good sleeping weather.
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Hey TC gals, i just want to chime in here and say that for me, most of my shedding happened around day 19 after the first chemo infusion. I've been keeping it in little baggies so i can track the progress. After a few weeks the daily shedding slowed down enough to be boring, and i switched to weekly bags. Just what comes out on my hair brush.
I used a Paxman machine and am now 6.5 weeks PFC. Shedding is very light but steady. Maybe double my pre-chemo amounts. Life after chemo effing rocks. More energy each week.
I'm down to a couple dozen eyelashes on each eye, but found three or four tiny new ones coming in today
Eyebrows started growing back at 5 weeks PFC! For a while before and during chemo i used Brow Food eyebrow serum on one eyebrow, as a little science experiment (n=1). That eyebrow has 3x the number of eyebrow hairs coming back so far. I gave up on using the serum around my second chemo infusion, feeling i'd paid a lot of money for a placebo. Seems to be paying off now, holy smokes. It is so nice seeing some things gradually returning to normal.
Best of luck to everyone keeping their hair on!
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I started by first treatment of Taxotere Cytoxan about 3 weeks ago. I used Dignicap and I lost more than 50% of my hair on Saturday. I do have a TON of hair so now I feel that I still have more hair than the average woman. I am just wondering if anyone has advice about if it is working or not. I do not have any bald spots and most of the hair loss was from the underneath of my hair. I wonder if the hair loss will slow down a lot with other treatments. Dignicap says that usually the first is the most but I wondered if any of you have any idea about this.
Thank you!
Amy
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Amyesd - I'm also using the Dignicap and I have to agree that my first shed was the worse, I have one more treatment to go. I did however develop a bald spot on the top of my head and I blame it on someone other then my regular nurse putting the cap on for my second treatment. I haven't developed any new ones. I still shed everyday and some days more then others but none like the first shed I had on day 21.
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Thank you! That is really helpful. I hope your last one goes welll!
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Tunegrrl--thanks for the info. I was guessing a big shed would come 14-19 days after each chemo which would leave me with 50% of my hair. I hope the 1st is the worst and it's less each time. Also, thanks for the tip about Brow Food. I'm using Latisse and putting it on my brows too but lashes and brows are definitely thinner every week. Only using mascara on special occasions.
So am I hearing that there's one big shed and then just continuous light shedding throughout? I'm scared every time it's wash day since the past 2 have been part of the big shed.
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Hello Ladies!
I had my last AC Thursday before last. Monday I ended up in the hospital for a week with pneumonia. What was I thinking imagining I could be up three nights in row with a sick child, right after treatment. Dumb! So be careful with kids and germs now the flu season is here.
I still am shedding everyday and heavier on wash days. Still no one would know I've lost any hair. I do 4 Taxol next so we'll see what happens then. Each treatment I get more adverse to the cold capping. I can't open the freezer, or have ice in my drinks. I immediately get nauseated and feel like I'll be sick. I am hoping can get medicated enough to continue cold capping..
Be well all...
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Started shedding pretty regularly about 5 days post 2nd chemo. No bald spots. Just a lot of general overall shedding. This is BS. Ugh.
I'm going to bag my hair every week. From Saturday to Friday. I'll label the bags. And maybe at the end, I'll take a picture with all of them to show if there is any difference in shed pattern as the chemo treatments march on. I hope there are distinct weeks of less shedding, but who knows? This is all a crap shoot as col capping seems to be effective differently for each of us. Well, with some general parameters. But I think much depends on your head, the fit of the caps, the chemo regimen, etc., that having any real rules of thumb are not possible.
Anyway, I'm heading into my good week after my bad week. Don't ask. It helps me separate out shitting chemo SE days from the rest. Although, with the shedding I'm experiencing, we might could argue a bit about whether this is truly a good week. lol
Two cold caps down. Six cold caps to go.
Oh, I'm using the Brian Joseph brow gel to help keep my eyebrows and lashes. But I have pretty substantial brows to begin with. We'll see if they fall out. Now, my lashes on the other hand... sparse already. Maybe I can get real handy with fake lashes.
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hi ladies. I hope everyone is doing well with your hair and shedding. I'm still shedding but it's more like a regular shed. Still more than pre chemo but nothing like wash day post 2nd treatment. I went to the look good feel good class yesterday. It was ok. They were kind of unorganized and our make up bags didn't come in on time so I will have to pick it up when they come in. After class everyone got a free wig. I passed on mine and told them i was cold capping. No one not even the class instructors had heard of it. Guess the words not out on cold caps yet.
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Hi All :
Tunegrrl - looking into Brow Food now... Thanks!
Luvmyys - Sorry to hear about your pneumonia. I hope you're feeling stronger now . Sorry you're having so much trouble with capping/nausea. I can certainly relate and am actually feeling sick for you as I read. On the plus side, your hair seems like it's doing great!
For anyone worried about brows/lashes - I am now 5.5 weeks PFC. Anyway, they are both growing in now and it's easier to do the brows with some stubby hairs to give a road map. They are gray though! I am so pissed at cancer. I didn't lose much during chemo but lost all one week after - I did use Brian Joseph but everyone is different. I think it often works very well.
I'm so sad about my hair. I went back to work this week but thankfully I work from a home office. I do video conferencing and am going to need to have a lot of tech issues for the foreseeable future, I think. My hair is just beyond awful. I did TCHP with some modifications to the usual regimen - I had Taxol instead of Taxotere and did 12 weekly treatments (instead of 6 treatments every three weeks) at half the regular dose. I worry all the time this wasn't strong enough but that's another story. Based on the before and after ponytail measurement I have lost 40%. I have a lot of roots which look like total hell and are not getting covered properly by any root touch-ups available on this planet. I think they are just too far gone. Then every hair that I do have is the weirdest texture - it's much finer than it was and gets really wispy at the ends. I'm too embarrassed to show pics. I'm really not going out. I think I'll have to trim a couple inches and then wear in a low ponytail for 2 years (hair is between chin/collarbone) or get it cut super short. I don't think my face shape can pull off a pixie so I'm stuck. Anyway, between the hideous hair, the crazy eyebrows/lashes, many more wrinkles and big problems with my reconstruction, I am really depressed. Oh, and the fact that my mother is wondering "when I will get past this". And my husband (who is really very loving) yells every time I am worried about any health situation. And god knows I should never bring up hair. Did I say I was depressed?? Sorry to be so negative.
I do have a beauty (or lack thereof) question. What are you all doing for skincare? I was using Odacite which is a clean brand but is now way too harsh for my skin, which seems to look 40 (well, at least 10) years older. I am wondering about product lines that are natural with no chemicals and would love to hear suggestions. Every moisturizer I try is making my face bright red.
Anyway, back to capping. From what you all are posting it seems like the capping is going great for most of you! That's fantastic news. Thinking of you all and wishing you the best in everything, not just hair...
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Willa--I'm so sorry you are feeling this way! Don't apologize for being negative. We all know our own bodies and it's spirit crushing when you are doing everything you can to stay "normal" and not see that person you think you are looking back at you in the mirror. No one will ever know what we are going through. If I had a dime for everyone who said, "it's just hair".... but it's more than that. It's skin changes, weight changes, energy changes, taste changes, the list goes on & on. My point is, everyone has to adjust to their "new normal" (I hate that term) and it will take some people longer than others to do it. This experience is truly life changing, in good ways and bad ways. I'm glad you have this group to vent to! We are all in this hell together and who knows when we'll get past it. I'm just living day to day right now and doing the best I can. Hope this helps!
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Hello!
Willa - oh I am so sorry your down. I understand being sad about your hair but realize it is always worse to us and it will get better. I get it, I cried and cried one day in the hospital, just down because I was sick. I want to cut an inch off and my stylist is too scared to do it. Today I looked at people while Christmas shopping and noticed a lot of people have crazy hair. Either dirty, bad color, bad style etc.. so I didn't feel like I stood out. My hair is blonde, so no gray I can see, but I have 2 inches of mousy blonde roots with golden blond to my shoulders and then it's dry and wavy. Yesterday, I did a very careful warm blow dry on the bottoms and even ran a flat iron over it really quick, felt pretty normal. But still recovering from the pneumonia and chemo hot flashes so I sweat at night so my hair is a curly mess by morning. Fun! Sorry your
Mom wants you to get over this... One bad day I told my husband my favorite time of day is when I am sleeping. I dream I am normal again, no cancer. I also understand about the Taxol debate.. I was scheduled to do 12, one a week but Dr gave option of 4 every two weeks. Wondering if I made the right decision. I think we will always second guess ourselves. I am interested in the skincare question too. I am not doing anything special right now, but feel like I should be. I did go to the dermatologist, he recommended some facials but I worry about irritation and may just wait till I am done. Take care and be kind to yourself..
Javamama - Sorry about your shedding. Hope it slows down.
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thanks for the chuckles, willa! So nice to have a refuge from the crap that was my day, coming here to talk hair n stuff.
My surgeon called me in for an urgent appt today. Tried not to freak out. My sentinel nodes wereclear but they need to open me up again to get clean margins and a golfball-sized area of DCIS. I cried about it a lot, postponed the important job interview i had scheduled for tomorrow morning, and took half and ativan to alleviate my sorrow. I'll find out tomorrow or the next day whether i get to keep my newly renovated boobie. So sleepy now, thank dog.
They mammogrammed me today and my sore boobie bled from my incisions. Sadness
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Pamela and Luvmyys: Thanks for your kind and understanding words. They help. Luvmyys - I feel the same about dreaming! Keep hoping to wake up to "before". I went off the deep end here today and feel bad about that. But I know you all realize that it is about much more than just hair and other superficial things. Each day is different. Tomorrow will likely be better. I so appreciate everyone here.
On a positive note, for all you in the midst of chemo, it's a great feeling PFC to be able to watch your strength come back, to begin to eat normally and to see little triumphant sprouts of hair. The body is resilient and the mind and spirit are too.
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Tunegirl, sorry you have to go through another surgery, that's tough. I too had to go throw a re-excision. I had my mastectomy but my margins were not clear so one month later had to go back in for surgery and had clear margins. Second surgery is def. easier than the 1st so keep your spirits up. Good luck with everything
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cancer is exhausting. It's turned out to be so much more exhausting than I ever thought it would be. The only people who get it are survivors. It's enough to make even the most positive people feel awful. I'm sorry for everyone going through this. It sucks. I had my first mammogram Friday and I was so freaked out i sat in the dressing room and cried. Then I second guessed the radiologist when she came out to tell me it looked good. I'm sure she thought I was a freak.
I attempted to talk to my best friend about it (in a text) and I got back the usual "think happy thoughts" blah blah blah. I finally told her I don't need her to try and fix this for me because she can't. All I need is for her to listen because when I hear "think happy thoughts", I feels more guilt.
Then I got in a huge fight with my family about politics this weekend. I didn't start the discussion and I generally avoid those discussions with people but I could stand listening to them anymore so I chimed in.
If anyone ever wants to talk on the phone or skype I certainly would be willing to. It's just me at home and I get lonely in my head. Just PM me. I know I could use some understanding because I'm sure not getting it anywhere else.
Have a good day everyone.
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Ok, I am supposed to be working but I am here. I feel guilty about it but I am going to have to do some things differently now.
I just want to quickly say to Tunegrrl and Runner - I am sending mountains of love to each of you.
My heart is breaking for everyone who is terrified, sad, sick, misunderstood or alone while not alone today. Or mad about her hair. And at the same time my heart is full because of all the intelligence, courage and beauty I witness here. It's astounding.
xo.
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tunegrrl, so sorry to read your post and hope everything goes smoothly for you. You have been a tremendous inspiration, as I have read your posts and followed your tips...even though we have not messaged directly. You got this and lots of us are sending our support,
This journey sucks for sure. Today I am on my way to LA for a business meeting...and took all my courage to get on the plane and say I can do this. The diagnosis changed everything...and sometimes smiling is almost impossible...holding on to my hair is the only thing saving me from a complete meltdown...even though I lost about 25% of it and have an inch and a half of grey roots covered with Root Spray, Madison reed and other stuff. Anyone who says it is just hair...has no idea. To me it is my privacy and dignity...not vanity...
My final TC treatment is on the 12/28...still shedding after a Friday's transfusion...Will it ever stop?
Thinking of all of you and appreciate your posts...somehow it makes me not feel alone
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I just completed chemo (regimen below). I started using Brian Joseph's 2 weeks before chemo started and used it faithfully throughout. I lost my brows and lashes. It was $50 a month and a complete waste of money for me. Their website says they do not have a Facebook page for privacy concerns but I wonder if it's simply to avoid bad reviews.
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Ughhh RUNNER I thought it was just me.... I HATE cancer. I HATE that were all here. Vent away my dear that's what we're here for... PM if you need to vent further xoxoxo
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Checking in after 4 Tax April - June. Cold capped (probably not right first time and lost 75 - 80% (got by with the Tom Petty baseball cap thing) but 6 months later it darn near all came back. 95% or better. Keep cappin girls!
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Runner - I'm having my first mammogram and MRI (if insurance approves the MRI) on Jan 4th and I'm scared to death. Mammogram last year missed my BC. Initial diagnosis was DCIS, and my surgeon and onco both wanted an MRI to make sure that it was just DCIS. It turned out that I had a tumor 3.5 cm in the same breast that mamo did not show!! Who knows how long it was there and no one knew. So sad. I have zero trust in mammograms and radiologists now. I got the news New Year's Eve last year, so Itold my onco no more test or bad news this Dec, hence having the mamo next month.
the fear is there daily and I've stopped talking to my husband and friends about feelings, fear, hair, etc. nobody understands or probably even cares. I just get through it by reading all the wonderful ladies' posts here and find some comfort. Wishing health and peace of mind for everyone.
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