Cold Caps Users Past and Present, to Save Hair
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Hey Gals,
I need some imput from those of you who have been there, done that. Today I went in to discuss chemotherapy with my oncologist. She is suggesting a six month treatment of adriamycin, cytoxen and taxol. There will be a total of 16 treatments. I asked about cold caps and she told me not to bother. She mentioned that her experience suggested that women could not tolerate the discomfort of the cold during the treatment and were not able to carry through with it. In essence, she told me to save my money and just get a wig. I've seen many of the women here have benefitted from cold caps and I think it would be worth it for me to try it. I have long red hair and it's such a part of my identity, I have a hard time imaging myself without it. I also know it will take quite some time to get it back to the length that I have worn it for the last several years. I have been wearing high heels to work for the last several years so I'm quite accustomed to "suffering for beauty".
So, I'm thinking I will go ahead and at least try the caps and hope for the best. It seems like a worthy investment to make based on my situation. Does anyone here have any experience with using cold caps with the drug combination I've listed above? I guess I'm looking for some advice from former users that might counteract the comments made by the oncologist. On the other hand, if people have had less success with the caps over the course of a long treatment or feel that my drug combination makes the cold caps less effective, I'd like to know that too. Thanks so much in advance, ladies! I so appreciate you sharing your stories here. 0 -
Just started my first cycle today! A/C was just fine (so far) and the caps were great. THe first 3 minutes of each cap is way worse than ice cream freeze brain - I made my mom and husband be silent. But after that initital cold left I felt great. Use the caps from the coolers was a little awkward and frustrating. Sometimes they weren't at the right temp (too warm). I also used the bands (originally planned on using on my brows - but that sting was too much for me. used them at my nape today). I ordered the Brian Josph's brow and lash get intead. Hopefully round 2 on the 25th will go smoother. Good luck!
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My caps were cooled to -35 degrees celcius and they never felt that uncomfortable. I sort of worry that I didn't have the brain freeze feeling that maybe they were not cold enough or my hair was too thick. I do feel they were tight enough, I had a strap around the nape and across the top that went under my chin. Also the nurse noted that my lips were turning blue.
Also, I did add some layers 2 hours into the process but I was not really shivering. I did not ice my toes or fingers.
Has anyone had success with castor oil on their brows? I've been using it for 3 weeks trying to fill in my brows (hoping to thicken them up before I start loosing them).
Also, if anyone has tips for painting on brows I would love to hear. I could never pull this off before, I used a pencil and it always looked like dirt and I would wipe it off. Where would you suggest I go for someone to teach me how to do it? A make up counter?
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Gilded cage, When I first considered cold caps I read through every post on this board (which took me about 3 weeks!) and there's only one person I recall who couldn't take the cold of cold caps. I never had a problem myself - yes, the cold was shocking at first, but you get used to it quickly. For some reason, the second cap of the day was always the coldest for me. As for your drug combo, one person recently had no success, but others do pretty well. I think the AC part is tougher on hair than some other drug combos. I had taxol only (12 weekly treatments) and the caps worked perfectly for me. So if you get through AC with hair, and you're doing weekly taxol, I would say you're going to have success based on my experience.
Annie, congrats on a successful treatment number 1!
Marsha, a lot of people go to the Look Good Feel Better program offered by the American Canceer Society. I didn't do it, but I've read lots of good comments on the BCO board and I would think they would have tips on dealing with brow loss. Not everyone loses their eyebrows though - I didn't.0 -
Welcome Gildedcage. You came to the right place with your questions.
I am on ACT as well. I just completed number 7 of 8 treatments. ACT is pretty heavy duty and it is probably the hardest cocktail for your hair; the success rate is not as high. BUT, there are women on here who have had great success, women who have had moderate success, and women who have eventually shedded out.
My hair is short, and normally very thick. At this point in my treatment, it's thin. I can see scalp. On washing day, I"m able to gently "fluff" it as it dries and it still looks quite acceptible. I'm just hoping I can keep enough covering to make it through.
You're doing 16 treatments, which could be challenging, but everyone has different results. And there are some other things to consider when making your decision. Follicles protected by freezing, logically are more likely to "revive" more quickly and normally, post chemo. And I just realized that without cold capping, I'd have been bald and dealing with wigs and scarves for 3.5 months already. If I shed out now, I'll only have to be bald for a short while as my hair will begin growing.
There are many women on here who are much more experienced than I and I know they will chime in with their thoughts and suggestions. I know you will make the right decision for you.
All the best to you!!
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Gilded cage, welcome. I am sorry you have to be here but if I were you I would do my best to save the long red hair- I bet it is gorgeous.
My doc didnt believe in the caps either. I think they are afraid capping will slow things down in the infusion room and every half hour in there makes them a lot of revenue.
You will find a lot of great tips here and we will do our best to answer questions you have if you choose to do it.
The caps arent cheap, but I bought a $250 wig I never used, so it's all a balancing act.
Good luck with your decision!!0 -
Annie & Marsha, way to go! Glad you have that first round under your belt...wishing you minimal side effects. I had 4 rounds of Taxotere/Cytoxin and had very few, used a lot of tips I gathered and got accupuncture morning of chemo and every week...I think it was a huge help. Other than that just dry eyes and the worst was losing my taste...
I also iced my fingers and toes but wore socks and knit gloves...no issues at all. I also followed a nail protocol I read on the boards...for those on Taxotere or Taxol...paint nails a dark color the day of chemo, day after, remove and paint on a coat of Sally Hansens Hard as Nails, then add a coat a day for a week, remove and repeat the clear until next chemo and start with the dark polish again. Something with how light interacts with the drugs that the dark polish helps. My nails grew like crazy and were very healthy thru chemo.
Gilded cage, sorry you have to join us here
. I, like Pat, read every page on this thread when I was capping and know there are a lot of ladies that had AC/T that saved their hair ( a reasonable portion anyway) using the caps, hoping some of them will chime in. There was one gal who did 16 cappings by herself, not that I'd recommend that but just shows it can work even through longer treatments. It's a lot of work, and you'll need helpers, but totally worth it. If you look around page 270 you should see my 'after' pic...thinner but noticeable only to me. I see you are in SoCal, I'd recommend checking with makingway...she has a great website and has helped lots of cappers in your area. Nearly everyone's MLo tells them not to bother, they don't work, etc. but they do, so push if you have to, snd let us know how we can help. Good luck to you!0 -
Just wanted to share an updated picture from Easter yesterday...for those of you still working the caps, keep the faith! This is only 2 weeks PFC, so once I can get back to my normal styling routine and highlights someday, watch out! LOL
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Found my 2 week 'after' pic and posted again...I know it really helped me to see pictures.
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Wow! Thank you so much for your responses. I will go through, read the entire thread and take notes this weekend - hey, it gives me something to do and makes me feel like I have some control in this whole thing. I'm glad to see that I'm not the only one who had a nay-sayer oncologist. I know it takes some of them a while to assimilate new information so I now take what they say with a bit of a grain of salt - you've got to trust your gut on some things.
I have some family members who will help me out with this whole cold capping process, which is great. I'm going to contact the local cold caps rep here in L.A. and also check in with makingway. It's so amazing to have women here on this forum who have gone through and are going through just what I'm dealing with. It makes it much easier and I'm so glad we have a place to gather out collective wisdom and share it with one another.
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Hope49, you are beautiful!! How did you post pics. I'd love to share my before and so-far pics.
Had a challenging chemo day. Took 3 painful attempts to get a vein. Had trouble getting a drip so they had to keep manipulating the needle to get it going. Ouch. But it's over and 5 hours post infusion capping is complete and I can say I only have 1 more!! Yay.
With hair.
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Great news, Shipsgirl! You are almost there. I hope you will post a picture of you and your hair after that last treatment. Hope49 looks amazing.
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Yes she does look amazing. I don't have nearly that much hair. But I HAVE hair and that has made a world of difference for me.
Here's my approach to it: I'm fully committed to keeping my hair and doing everything I possibly can to that end. But I'm not attached to it. The commitment is strength; it allows me to feel hopeful and in control. Attachment leaves no option of other outcomes and often takes on a position of desperation. There's no power in that and any other outcome becomes failure.
Kind of like in a sport where a player is 100% committed to making a goal, but if it doesn't happen, she is able to accept it, renew her commitment and play full out again. If she was attached to making that particular goal and didn't, she would have failed and that has no power.
Don't mean to lecture; I've found this to be really helpful and hope it can help you. There is every possibility that you will keep your beautiful hair - and your strength.
With hair
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Hi girls
I've had my first chemo on tgr second and used cap. So far no shedding, im on 6 rounds of fec-t. I will keep my fingers crossed for all us newbies. For the girls who are ahead of us thank you for your support, and please keep checking on us who are still at tge beginning of this journey. It is my life line having you girls here to share, support and keep our spirits up.
I still have mot washed my hair, a little afraid of that at tuus stage. May wash after round 2. A quick question, when should i expect shedding?. Is anyone on a similar cocktail as me? If so have you managed to keep your hair? It seems USA have a different chemo regime.
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Marsha, I went to a Look Good Feel Better class by the American Cancer Society. They do teach you to draw brows and give you a whole bag of nice make up for free. I haven't lost my brows (yet?) but they have thinned considerably.
Shipsgirl, so happy your're almost finished!
I took my helpers out to dinner last night to celebrate the end of chemo and to thank them. I also gave them bracelets I bought from an organization called Circle of Love. It was started by a breast cancer patient, the bracelets are made by volunteers, and all proceeds benefit cancer research. The bracelets are cute and I love the meaning behind them. We had a great time.
Glad to hear that everyone's first cap sessions went well. Yes, you will get resistance and skepticism from the doctors and nurses. That's why it feels so good to see their reactions when you show up for your second and then third sessions with hair.
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fab, the lady who started this thread, Can-D, had the same chemo regime as you, and kept her hair. Check out page 2 of this thread.
Guilded cage and all new cappers, A member of this thread, mdg, has a great blog that really helped me while I was going through chemo with cold caps. She has pictures of herself and others, including me. Here is a link to my story on her blog: http://breastcancerwontdefineme.blogspot.com/search/label/Penguin%20Cold%20Caps
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My onc patted me on the hand and with sad eyes said "You WILL lose your hair my dear, but you can try the caps if you like".
And try I did. And I succeeded. Loved proving him wrong! (I do love my onc, but I loved saving my hair and being right even more!)
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Thanks for the nice comments on my picture - you are all too kind! I think is helps to show that even though I felt I lost a lot of hair it's really not so noticable as we may think.
Fab1, you should wash your hair as scary as it is, from what I was told it's best to wash the toxins out a few days post-chemo. I think that curly123 was also on a similar regimen and she did her last round yesterday with what i'd say is a good success. I'm sure she'll chime in.
shipsgirl, posting the pic was tricky...I think I searched for directions within the discussion boards and what I had to do was post a pic to an oline site (Photobucket) and then in my post I clicked on the icon that looks like a tree, where you can paste a link that you get from the page your photo is on...somehow it worked. See if you can try to post, it would be great for our cappers to see your great results! And I love your philosophy about it all. I knew I had to at least give it a try or I'd always wonder. Another thing that helped me immensly was the advice from ladygray who said when the shedding starts keep the faith, 'you are not a special snowflake...the caps will work'. It became my mantra. I know some have had disappointing results and that hurts my heart because I know how much effort goes into this...we just all have to keep positive until the last hair falls
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Ladies - thank you so much for the encouraging words....I love this board!
Hortense - so helpful re: your after TX hair care regimen. Thank you so much for looking at your notes and posting about them. When did you start using nioxin PFC? My last wash, was the first time i saw a little "fluff" from being a bit clean. But it is very dirty generally which is gross. So I hope that "fluff" will be something much more when i finally can wash properly. When did you actually get to scrub your hair clean? That must have felt good!
I guess i can officially say i am a whopping 1 day PFC today! Yippee! Side effects will kick in tomorrow, so I'll just try to enjoy today. Was soooo happy to get that darned picc line removed from my arm. Have to keep it bandaged up until sunday, but that's ok. Arm feels relieved already.
My nurse gave me a big hug yesterday as i was leaving and said "I'm glad you kept your hair!" One other patient asked what was going on...first time someone asked. The social worker at the hospital checks in on me each time and always has a big talk about the caps with me and my progress, which was nice.
Happy to be done, but know the next little while will be scary re: what will happen with my hair. Like Shipsgirl said, I keep telling myself, if the worst happens, at least I avoided it for the past 3.5 months. That is definitely a success.
As for the reduced rads - someone was asking on the board - my radiologist told me that in the US (dont take this the wrong way), that they are financially tied to each session and he thinks that may be why the recommend the longer route. he said their research tells them you get the biggest benefit in the first 3 weeks. The dosage over the 3 weeks vs. the 5 weeks is similar. He says you get 5000 units over 5 weeks and about 4200 units over the 3 weeks. I will also get a one week "boost" after the 3 week period. Also, they stll have to confirm - it's based on where my heart is positioned and they are doing their calculations currently after the ct scan they just gave me. Find out soon.
Anyone go on vaca after all this mess? wondering when it's safer to go re: heat on the head and protecting the follicles. I certainly won't go until after being done radiation. It starts in a month. But wondering how soon after i should think about it. The radiologist said he's had patients go the day after they finished rads, but recommends waiting 6 - 8 weeks so you have your energy back. That sounds very reasonable; just not sure if my follicles will be ready!
Marsha - my hair would get stuck in the velcro also - I would take a spray bottle and spray a little water inbetween cap changes, which seemed to help. Also, for the brows, I got a pencil as well as a special brow brush and brow powder. People think my brows look normal. They are super thin, but I have gotten pretty good at colouring them in. If only I could draw in lashes! Try youtube - i checked out a few tutorials and they helped. But the Look Good feel better session is really great. I went to it here in Canada. It's a pick me up and you get a bunch of free product, which is a bonus. Although now that I have done some research on all the chemicals in our regular make up, in a few weeks when I'm up to it, i plan on starting fresh and buying more natural product where possible.
Fab1 - I was on FEC - T. The lady who started this board was on it too. She thinned a lot but her after picture was gorgeous. I thinned a ton as well. They have stats for most regimens. I believe our stats are 50/50 on this regimen, partially due to having so many drugs and partially due to their strength. The lower the dosage, the better for your hair.
Thanks for the support ladies.
xoxo
curly0 -
And hope - you look gorgeous as always! Way to go!!!
xoxo
curly0 -
gildedcage, I'm glad you will take some time to read the thread...what you'll see is that everyone kind of goes through the same patterns...starting off very hopeful and minimal shedding, then shedding starts, panic sets in, they're sure they're losing all their hair and then in the end, nearly all are successful. Seeing all those stories really helped me keep calm even now as I continue some shedding at almost 4 mos post treatment, I remember reading this is the case for most, and that it will suddenly stop one day in the next couple of months. Glad you wil reach out to makingway, too she's a wealth of information and I think she may actually be the cold cap rep in your area. She's a great resource. Looking forward to supporting you in your journey!
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YAY Curly, you are DONE!!!!!! Treat yourself well the next couple of weeks, its the last time you have to go through this. I know your hair will hang in there, too. I think once you get through rads you will be fine for a vacation...the hair will be a couple of months pfc then and you can always wear a hat if you're worried about the heat. I really think once you get a month out, you're more looking at shedding and not at risk for a total loss. Having a getaway to look forward to really helped me keep going. And also for rads i bought a scratch off lotter ticket for every day so i'd have something to look forward to...a good suggestion from another poster. I won $26 woo-hoo; still haven't decided what to spend that on
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Hope - I'd say at least a mani, or how about a nice bottle of wine? lol...i can't wait to have a glass of wine...and taste it!
Speaking of taste - when did you get your taste buds back?0 -
Curly, it probably took about a month for my taste to be mostly back to normal. I think even a few weeks beyond for it to be really 'sharp'. There are still some foods, though, that I can't bear to eat because they tasted so bad during chemo.
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Ha ha. A lottery ticket for each day. I love it. I'm a marriage commissioner and I recently booked a wedding for early September. It was the first time I had made plans for beyond the chemo bubble. I will be doing rads by then I think, but they seem like an easier ride.
Curly - love the joy in your writing! I hear in the States that a many cancer centres have a bell that you ring when you are done your last session. Wish the Cancer Agencies here had that. Bet you'd have been ringing it to bring the cows home!!
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Congrats Curly!!
Way to go! One more for me, but right now just fighting the fatigue.
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Hope - did you continue capping post treatment? Does anyone know if this helps?
Well, I survived Chemo #1 yesterday! It wasn't as bad as anticipated and my Cold Capping Crew were rock stars! I had 4: one took me and started the process - there were some errors - I think she put the first 2 on backward and I'm not sure they were as tight as they could have been. But things got better - I just hope those first 2 problems won't haunt me. Everyone else got it pretty well and it wasn't too uncomfortable for me. Sometimes, the next cap wasn't cold enough - what do you do in that case? It's easier to warm them up then cool them down. We didn't finish until around 8pm as my appt didn't start til 12:30pm, but one of my friends brought me home - we changed a cap enroute as it is a long drive in rush hour - then celebrated with some barbecue and a glass of wine.
All in all a great relief and a heartwarming - if head freezing - day. 1 Down, 3 to go!
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Curly, congratulations! I know it's been a long road for you. I treated myself to a manicure and pedicure at 2 weeks PFC. Figured my white blood cell count was high enough by then. I love the lottery ticket idea during radiation!
I already posted that I will have the shorter 4 week course of radiation. I believe that you receive a slightly higher dosage each session and slightly less radiation in total compared to the typical 6 week course. My radiologist (in the US) also suggested a financial incentive as one of the reasons more US doctors have not adopted the Canadian protocol. He had no hesitation suggesting the shorter protocol for me. I will have 3 weeks whole breast radiation then 5 days of boosts. There is currently a trial where they are studying 3 weeks with concurrent boosts, but I am not eligible for that trial.
Speaking of vacations, I just booked a trip to Cancun for the second week in August. I am a bit worried about the effects of the hot sun on my hair, figuring if we can't use hot water to wash, then it can't be good for the sun to beat down on it. Hopefully my shedding will stop or at least slow down over the next 4 weeks.
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Way to go Portland - you do have a team of rock stars!
You are absolutely right. It is easier and faster to warm the caps up that to get them down to the right temp. My office has a freezer - but my team also takes "backup ice" that we get the day before. That way I can go home and finish capping there. I'm always so anxious to get out of that office.
My team uses two methods to get the caps to the proper temps. One, they take the lids off the containers containing the caps in the freezer at the office. And if necessary for timing purposes they take the caps out of the containers and put them in two gallon plastic freezer bags - then put them in the cooler with the dry ice (which is also in protective freezer bags.) Sometimes that makes them a few degrees too cold - but the warm up pretty quickly.
Lotta chemo brain fog going on here - so I hope that makes sense!
Kay
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Way to go Portland - you do have a team of rock stars!
You are absolutely right. It is easier and faster to warm the caps up that to get them down to the right temp. My office has a freezer - but my team also takes "backup ice" that we get the day before. That way I can go home and finish capping there. I'm always so anxious to get out of that office.
My team uses two methods to get the caps to the proper temps. One, they take the lids off the containers containing the caps in the freezer at the office. And if necessary for timing purposes they take the caps out of the containers and put them in two gallon plastic freezer bags - then put them in the cooler with the dry ice (which is also in protective freezer bags.) Sometimes that makes them a few degrees too cold - but they warm up pretty quickly.
Lotta chemo brain fog going on here - so I hope that makes sense!
Kay
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