Cold Caps Users Past and Present, to Save Hair
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I think that is the point NlM is trying to make. While keeping one's hair might be ideal, the loss of hair can be managed without everyone knowing you are a cancer patient. Throughout my tx, I wore a very simple wig. It was easy to wear and to care for. No one knew or guessed that I was sick or bald unless I told them. Even some family members, my elderly dad for instance, were not told and did not know. I teach disabled teens who really need to have their world remain safe and constant. Only one knew something was up and that was more related to my reduced work-load.
Good luck to those using the caps! It is a good option for those willing and able to endure the expense and protocol. I always mention them when talking to women just beginning their journey. Someday they will be a recognized option I hope. However, there are some treatments that are difficult to get through (AC/T). If you try and fail, it will be okay. You don't have to look sick or bald. A wig that matches your style and color will look great and is relatively easy to deal with. I found it somewhat interesting. I experimented with color and cut and actually had two 'looks' - workday and weekend. So hang in there. The end is in sight and whatever happens, you will be okay!
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Well said, Janet, and it's great to hear your positive thoughts. Thanks for talking up the caps to those you meet...it's an option that should have more awareness in the medical community so patients can be well informed about everything available to them. All the best to you!
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Thanks, Kaydee and Sciencegal for the reality check and support! It's hard when you are trying to so hard to keep your hair to have it falling out! i do now have coverage with helpers thanks to a wonderful organization that started here in Portland called Breast Friends. They are a group of breast cancer survivors paying it forward. Angels!
So here we go with Chemo 2 Thursday! Wishing you all good days and hugs...
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Tomorrow is day 21 past my first chemo and my second infusion. I still have lots of hair!
I've had hairs randomly fall out and I find them everywhere including my food...yuck. It sheds the most when I wash but only a little more than it was before chemo, which concerned me then only because I worry about the cumulative effect. No one would notice. I dont see any bald spots and its still very thick. The shedding is nothing like I experienced on Day 17 on ACT the first time so I am not worried.
I'm also doing well with the hair care restrictions. My hair looks pretty good, however I miss being able to do a blowout. I use dermorganics shampoo and conditioner and sometimes smooth frizz with argan oil. I airdry and use bobby pins to pin down two cowlicks while they dry. Sometimes I use a cool dryer on my bangs but not the last few washes. Also a few times I have used pink foam curlers on the ends to give a little bounce to my hair. They are really light and i dont roll them tight. I got some mini claw clips to clip my bangs away from my eyes tonight because they are starting to annoy me. I have a system for washing where I take a hot bath and fill a pitcher with cool water and then use a cup in the pitcher to rinse or wet my hair. I keep filling the pitcher. I think it's better to pour from the top then to flip my head over in a sink and I feel totally clean after. I use a wide comb to pull the conditioner through before I rinse. This is when I shed the most, but I think it would happen on damp hair too maybe worse with uneven conditioner. I then use a microfiber hair wrap which does a great job of taking the moisture without a bunch of scrunching and pulling. I wear the wrap for about 30 minutes then I comb out so it doesn't dry funky.
I've had very little energy and spend a lot of time laying on the couch. I try to remember to bring my satin pillow downstairs and many times I lay on the couch trying to morivate myself to go get it. I've become such a slug! I used to be a very active person and its been hard to adjust since my main social outlet was my hiking and kayaking clubs. I hope most of this is prednisone withdrawal and I will recover and be able to work before chemo ends in October.0 -
Marsha, your tips are so appreciated! I'm afraid to use any product on my hair but I'm looking very much like a bag lady with scraggly hair. My hair has a bit of curl and can look cute if I scrunch it but can't use heat to set the curl or products. So it just kinda looks dull and lifeless. But it's mostly still thee at this point. So Argan is OK? What other products are people using successfully to style their fragile locks?
Thanks so much!!!
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Argan is in the shampoo and conditioner so I don't see why not. I only use a dime size or less on the top layer.
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I'm over a year out, and I have to say I love my hair now more than I did before chemo. It has more body, and if I let it air dry or partially blow dry it and then scrunch the ends with a bit of water on my hands, I can get a soft wave in the ends of all of my hair and bangs. It used to be super straight and lifeless before chemo and cold caps. Now it has body and little small curls here and there - I guess where the hair I did lose is growing back. I have lots of curls underneath in the back where I lost the most b/c the caps did not get tight enough. I just wanted to say that although my hair looked like crap when I was going through chemo with the caps b/c I couldn't do much with it, I am super duper happy with it now - like it more than I ever did. Silver linings of chemo! If I had not done the caps, it would be super curly all over, which I'm sure I'd deal with - but since I did the caps, my straight hair mixed with the curls gives it a very interesting look that I like. Anyone else notice this?
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I'm 4 weeks post first chemo treatment (I'm doing 4 A/C and 4 taxol). I've had 2 treatments so far. I've had barely any shedding - only really noticed some yesterday. And if it wasn't for cancer I'd just think it's normal shedding. I've been reading some women heard/think the caps don't work AC-T. I had never heard this. So far so good for me... knock on wood. Just trying to take each day as it comes. Thanks, as always, for supporting each other on here - encouragement and love is what we need!
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That's great Annie! I know ATC is much harder on hair so it's nice to read more success stories.
I am 2 years and a few months out from my last chemo and my hair is the best it has been in years. It is so much healthier and thicker. It still does not get greasy either. I still only wash twice a week...crazy!0 -
Sitting here with next to last cap on my head!
it's funny- as soon as they come off I wipe them down, and throw them back in the box. I want to ship back to Geralyn as quickly as humanly possible!
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TMB- YAY!!!!!! off they go!!!!
hang in there ladies- hugs to all.0 -
YAY Tmb, you are at the finish line! I couldn't wait for my DH to take the caps to UPS and bid them a fond farewell. all good from here out!!!
Portland, 2 weeks pfc I started blow drying my hair on cool until it was just damp then I set it on Velcro rollers and misted it all with the DermOrganic volume spray. Every so often, I'd blow more cool air on until it dried. Gave me a lot of bounce and style without the heat. You saw my Easter pic, thats hiw i got that look. I did it once or twice a week and now 4 mos pfc, I do it about 3 times a week and lass tarted using the DermOrganic mousse before the cool dry...it has literally made my hair feel twice as thick. While in treatment I did occasionally use a bit of mousse on the ends and cool dry with the diffuser then pull it back with a couple of tiny claw clips...maybe not my best look, but better than letting it just air dry if I was going out.
Annie and Marsha, you are doing great!!!0 -
Wow, just heard of these cold cap treatments today from a friend. I am in Montreal and Started TAC treatments June 25. This was never offered as an option, hair was completely gone within 3weeks. The daily neupogin shots caused major bone pain within 6days. Changed oncol dr. and protocol as well, now on AC4 with no shots yet. Wish I had known about the cold caps.
L have a long way to go and so many unanswered questions..just discovered this site...0 -
Sharpr66 - I'm glad you found this site as it is full of all sorts of good information on different threads and its members are all so supportive. I'm sorry you didn't find it in time to try cold caps. As for your bone pain, were you told to take Claratin for it? Many of us took it and I can say that I did not have any pain.
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Ladies! I took your recommendation after the last time I posted about three weeks ago and read through the entire thread....all 304 pages! It took me a long time but I really learned a lot. To summarize, it seems like I'll have about a 50% chance of keeping enough hair to go wigless with the ACT treatment. I love the attitude of Shipsgirl: We do what we can but then we give up our attachment to the outcome. If I can keep 50%,40%, even 30% of my hair I will be happy with the caps. I also noted several women who posted on the Penguin Facebook page that they had used cold caps succesfully with ACT so that also gives me some hope that it may work to some degree or another. At the very least, I'll have my hair longer than I would without the caps and that is a great thing.
Also, I learned that I can use hair extensions - both during and after chemo - to make my hair look more full. Here I am in L.A., the land of fake hair and it never really occured to me. I even found a local hair salon that does hair extensions on people with just an inch of hair coming in from chemo and the results are pretty amazing. So, even if I lose my hair or if it significantly thins out, there are options! I can also use filler to color in any bald spots that may arise. Thank you to all the women who contributed to this thread and who gave their experiences. I feel like I've seen the good, the bad and the ugly (so to speak) and am prepared to move forward with the caps now. I'm just going to hope for the best but know that even if I am not successful, I still have options (wigs, hair extensions, pixie haircuts). I hope all the ACT gals will keep on posting with updates. I will try to do that as well.
On another positive note, I spoke with a nurse at the chemo center and she said that I will be the third person to try the caps out at that location. She told me that one woman had good success and one not so much. She was supportive and said that the staff would work with me and try to accomodate my attempt at using the caps in any way they could. I had been expecting a fight and was so relieved that I didn't have to have one. The only thing I'm concerned about is that they have a one visitor at a time policy and I wanted to have two helpers with me for each treatment. However, I'm not going to sweat that too much. After seeing that one woman here did the caps all by herself, I figure I can make it through with just me and my husband. I start chemo in about three weeks time and I have a little list of items to purchase before I start treatment; that should keep me busy for a while. Thanks again everyone!
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Gildedcage - Good Luck! You sound like such a lovely person. I admire your attitude, and your amusing sense of the ridiculous - "the land of fake hair". I read through the whole thread too before starting, but it was a lot shorter last year.
Does your center have a freezer for the caps? If not, would it accept one if you asked the Rapunzel Project to donate one to it? I believe you have time to get one. My center had one donated by them and it made the process easier.
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Hope - so you used those products during treatment? Tomorrow is #2 of 4. I've been shedding a bit and hate to risk too much but this look needs help. I'll order them instantly if you think that judicious use of them is OK. I get that I using the diffuser on cool is important.
Thanks so much!!!
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gildedcage - it was just me and my "cold cap engineer" hubby for all of my treatments. It was busy - but he loved it - he hates to sit still and wait - and he was busy the entire time changing/prepping/cleaning and putting away caps in the cycle as needed. And he did a fantastic job! You take the roll of setting the timer and reminding him of the details of what needs to be done and sort of being the "coach" - and that lets him just focus on "doing". But review the whole process/plan together and even practice a few times at home before going. Once you get a rhythm going, it seems like second nature and the day flies by!
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Hi Portland, during treatment, I used the mousse on occasion only on the ends, and the volume spray a few light spritzed to kind of set things. 2 weeks pfc I started getting more brave with the rollers...I just had to remove them carefully, but they worked great. I tried regular plastic rollers and the sponge type but pins and clips made funny waves so I d the Velcro worked best for me.
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I can now say that I had only minimal to no shedding after chemo #3.
Just had chemo 4 yesterday and will keep everyone posted.
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tmb173 - Wow! Congratulations on so little shedding! May it stay that way
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Had my annual mammogram with ultrasound. All clear"!! Next one in one year.
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That's great news Schoolmom! What a relief.
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YAY, Schoolmom! Great news.
Rhonda, nice to see your post...hope you are doing well! How has your hair been doing?0 -
YAY schoolmom!!!!!!!!
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Went to my hairdresser yesterday. She trimmed about 2 inches of straggling hairs in the back. I had already trimmed 1 inch twice since PFC. Going back on Tuesday and may let her trim another inch or two. I know I need to get rid of the dry frizzy hair but it is hard to lose yet another inch or two. It will be touching my shoulders if we cut 2 inches. I started with 5-6 inches down my back so here we go.............
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gildedcage - good luck!
tmb - yayyy!!!! you're done! awesome! congrats! how are you feeling?
schoolmom - super awesome news! wonderful!
portland - how are you doing?
I had my follow up mri results delivered by my surgeon yesterday. Nerve wracking, but all is good, thankfully. Rads start in 10 days. Hair is very thin, but still enough coverage when i put it up. Can't go out with it down, that's for sure. I managed to order colormark and put that on just the other day - wow - what a difference! I forgot what it's like not to have grey/white surrounding my face! So that was a bit of a treat, if you can call it that. My little guy cheered when i said how are the greys??? lol....6 years old - he is such a diplomat!
I am 22 days pfc and the energy is starting to come back. No where near myself yet, but i managed to take the kids on a day trip that lasted much longer than intended and i got through it still standing! Huge accomplishment for me. It is definitely a loonnnnnnggg process. I just keep trying to think that next year this time, things will be better.
Have a wonderful weekend everyone.
curly0 -
curly - it will be SO much better! Wish I could fast forward everyone past chemo!!! There is indeed light on the other side!
schoolmom - I am farther out than you, but I too had the dry frizzies at the end of my hair and was reluctant to let my hairdresser do more than just a tiny trim each time. This last visit I relented and let her put some long layers in. Wow am I happy I did. I still have length (deeper hairs), but the shorter hair just an inch or so in multiple layers on top of the hair make it look SO much healthier, and I do believe also thicker. So maybe talk to them about that? I didn't do layers all over. Just layers near the ends. I hope that makes sense.
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wow so much to catch up on.
schoolmom and curly congratulations! terrific results.
tmb you made it through!!!! so happy for you.
dancetrance thanks for sharing the tips about the layering. i want my scraggly long-ish hairs in the back gone altogether. i actually want a short cut - just hoping for enough hair to cover most of my head.
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Hi ladies,
My mom is about to do her nlast chemo on the 8th. We were wondering, how long until she can starting color her roots? She's going crazy. She's a hairdresser and ready to put color on this morning. I had to talk her out of it! My question is, how long after the very last treatment? She still has at least 70% of her hair! So grateful!
Chelsea
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