Cold Caps Users Past and Present, to Save Hair
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the caps weren't cold on my head and caused no pain or nausea.
For all starting cold caps here is a tip I've never read about but I wish I'd heard so that it would have made me feel more in control or knowledgable.
Measure your hair!!!!. Try like 2 ponytails and also a big pony tail. Measure the thickness. Also try to do some kind of dye in a few spots to help you be able to measure growth during treatment. One thing I've noticed most of us are worried about it HOW MUCH hair have we actually lost. This would be the best way to gauge. Like I know that the amount of hair I have left is about the same amount I used to have right above my ear. Now it's how much I have on my entire head
I'm sure I've lost 90%. But I NOW realize I had a LOT of hair. So my piddy 10% is like someone else's 30%. But I would have loved to have really known exactly how much I've lost. Mine had no bald spots so i have no way to measure loss or growth or regrowth. Mine was like an exact all over shed. No one spot had more hair loss. Seriously my hair is so shitty that I just look in the mirror and chuckle. It's all I can do! 😜😜😜
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willa, you will be fine! I felt the same when I practiced cold cap before treatment. If not for payment I made I probably would give up. But I did it . the worst was under chin tightness not a cap itself. Just take taylonol before it. Also I took Xanax. Xanax and benadryl -they gave me as premed ,made me very sleepy and easier to tolerate it. I even enjoyed beeing high like it.lol.
I see you going to have 12 t+ h.it's exactly what I had. Caps work great with this regiment. You will be fine! Just make sure you do correct capping What company you decided to go with?
I am exactly 3 weeks pfc today and glad to say that swelling is much less. Today when I stepped on a scale I am finally noticed that I am back to my pre chemo weight. But I really watch what I eat...no sugar... almost, no white bread.. . Yes fruits.. But no more cakes even at parties. I only let myself eat dark chocolate. And I try to work out every day.
Did you guys change your lifestyle or diet to more healthy one?
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Bab524,thanks for the pics, I am going thru exact same thing! Bald spot on my part keeps getting bigger! I started shedding bad on day 15. There's no let up yet. I am doing the caps w minimal help so I missed areas. I'm balding on top and my sides. I cringe on wash days and I'm on the hunt for some toppik. Any advice? That happened w my first infusion, hope my next will be better!
I spend ALOT of time cleaning up my hair and my 13 yr daughter is wondering w the heck. I didn't tell my 3 kids (13,10,7)the whole story bc they saw how sick my mom looked after she did chemo 3 years ago. And they were upset and now that I'm going thru it I minimize what I can. I believe ADULT ISSUES are for adults. They cried when I was gone for my surgeries too.
Kudos to you being in medical school going thru this!! You are a superstar! Thankyou for your encouragement!
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Heidi 16, meow0369, victoryak and phaila - thank you for your words of wisdom and encouragement. I feel better about capping and will try to calm down! I got a wig as a safety net. My husband said he likes it better than my real hair. I would ditch him if I didn't need him for the CC escapades. Ha.
Bab254 - so glad to see you have lots of hair left and that you feel good going out - and to med school. What an accomplishment!
kechla - I've been feeling the same way about wanting to do something nice for my husband since he is carrying a lot of the burdens these days. I'm thinking on it... nothing wonderful has come to mind yet. For now I just try to be sure I tell everyone how great he is and then they shower him with compliments too. It's the little things...
victoryak - on your food question - since I haven't started chemo I'm not qualified to answer. But I'll prob keep doing what I've been doing and hope for the best after chemo and through tamox/AI (years, ugh). I stopped eating sugar ( still eat fruit , just not desserts, etc) and gluten about 10 years ago. Made a huge difference in how I felt and has easily kept my weight and mood stable. I've been lucky to start seeing someone out this way (San Francisco) who is supposed to be an expert at restoring health during and after chemo. I'll pass along what I learn if you like - please know he's not an MD. He does nutrition/chinese medicine/acupuncture. Currently he's suggesting Cancer Fighting Kitchen cookbook by Rebecca Katz , absolutely no processed foods ever, and of course increasing vegetables and some fruits. He says daily tai chi and meditation are proven essential too in the quest to keep cancer at bay. He's also a fan of seaweed (natural estrogen blocker) but I'm having trouble getting behind that.
Thank you, all, again!!
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Willa,
You will get an infusion of nausea meds before your chemo so that should help. I know you are anxious. We all were. Once you get through your first real cold capping I think you'll feel a little better about the overall process. If there are 2 main things I would stress is to make sure the caps are the right temp and that it has a good tight fit around your scalp with no gaps. Gaps=bald spots later. I had a huge one. The anxiety of watching your hair fall out never really went away for me until I was about 2 months after chemo and I finally believed I was going to keep all my hair. And honestly, I was so exhausted by the end, I almost didn't care.
Let us know how it goes and good luck!
And yay! I finished my 34 rounds of radiation today! Finally, treatment is finished! (At least the hard parts
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Wila : you will manage I live in a warm climate 80-90 year around. Intensely disliked the cold and was not sure I would be able to handle it at all. I asked for Ativan ( anti anxiety ) before chemo infusion to deal with the cold which they gave for 10 minutes or so in the pre chemo medicines. The first few minutes of the first few caps are tough but then its fine.
I am grateful I did the caps and when I look at the mirror I see me back in spite of the shedding and the stress that comes with it.
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Willa, ask if you can get a bed for chemo. I had a chair for my first session and beds for the last two. A bed is way more comfortable and I think it was easier for my cappers to cap with me in a bed. I won't lie, I have cried every time the first cap goes on! It is so, so cold, but you will get through it. You will want to quit during the first cap but just push through it. The first 1-2 are tough, but then either your scalp goes numb or in my case the Ativan kicks in and I am half asleep. My nurse gives me 2 doses of Ativan before I start capping, and pretty soon after I am able to sleep between caps and am woken up to change them. I also found that brining my laptop and watching Netflix to distract myself helps.
I had a very, very hard time at first with my hair loss and widening part/bald spot. I was very self conscious about it. But once I got Toppik and could cover it up it is like my new normal now and I am over that feeling. I am just glad to still have hair at all and I finally realized that worrying about it will not change anything -- if it falls out, it falls out. Nothing I can do but keep capping and babying my hair. It is not superficial at all to be worried about losing your hair! It is about being in control like you said, and being able to look like your normal self.
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Meow, I ordered my Toppik directly from the website but then later found it at Sally's Beauty Supply! My mom got it for me at Sallys so I could be wrong on this but I think it was cheaper there. I recommend getting the spray applicator to apply it and also the fiber hold spray. I spritz that on after I apply the Toppik and it helps keep everything in place.
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babs - My hair looks a lot like your final photos, after 4TCs - but the sides of mine are even sparser. The only thing that stayed was the back.
phalia - I think I will have lost 90 percent of hair by the end, I have 2 more treatments left. I didn't measure it but I know my hair well and right now I have about 1/6 of what I started out with.
Honestly I would call the caps a fail for me overall (since I require hats, wigs or scarves in public), even though I followed protocol. I have a weird hypothesis about why: a week after my first 2 treatments I was barely eating or drinking - or eliminating (severe constipation) so I believe the drugs were concentrated in my system for a lot longer than they should have been, and perhaps got to my scalp follicles at that time instead of being flushed out. But who knows! Just something to pass on to others. It's the only explanation I can think of!
I was disappointed for a really long time because of all the money the caps cost, and how many women on my regimen used penguin and kept basically everything. I've met women like this in my support groups and I gaze at their hair enviously.
I have now accepted what happened and have moved onto another stage of angst - at this point, I'm ok with growing out the top/sides from basically scratch, and having short hair for much longer than I ever would have preferred. BUT I just don't want to be part of the percentage who experience permanent taxotere hair loss. That's my big fear at this point. And I won't actually know until a few months after PFC when the growth is supposed to appear!
Did anyone who used CCs have the hair they lost never return? My Penguin rep told me he has never seen this happen. I guess my question is, even if the caps didn't allow me to keep all my hair, did they protect me from the possibility of permanent loss?
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Runner, Bab524 and Positive - thank you for all your suggestions and tips with the caps. I feel a bit more at peace with the process and how best to handle. I've been struggling so much with the whole idea of chemo - I know everyone does. Waiting for the day that immunotherapy or vaccines or something else becomes the standard of care.
Best wishes today to everyone here..
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Question for those who have completed treatment, did you start using conditioner more liberally? My understanding of the reason to not use conditioner was more to keep scalp/hair clean and residue free and allow the caps the make better contact? My hair is so dry and worn out, I'd love to be able to condition again after I finish treatment next week.
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JCS28-- did you get a haircut yet? if so how long after treatment ended did you? How often do you wash your hair now?
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jstan81963 -- I have not had a haircut yet but am planning to do so very soon. I kept nearly all my hair, but I don't think it grew much during treatment. But now the ends look pretty scraggly. I still only wash every 3 days, sometimes every other day. I am washing in the shower in hot water now though! But I still haven't dried it. It is doing really well, but I just don't want to take any chances. Also, I'm having my implant exchange tomorrow. I did have some shedding after my mastectomy, so I wonder if that will happen again.
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JCS28- thanks for the info, its been 15 days from my last treatment (YAY), and getting my last implant "fill" on Monday. I kept most of my hair except for a spot a little bigger than a quarter in the middle of my part. I think i did that myself because i was screwing around trying to get rid of the craddle cap. Good luck tomorrow i hope everything goes well, should be day surgery right?
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Yes, outpatient surgery, so I'll be home tomorrow night!
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Here is some info that a friend who worked in the industry gave me about shampoos: if anyone has any other good tips, please let me know!
Here are some shampoos to consider:
DS Laboratories Revita Hair Growth Stimulating Shampoo (found this online-steph3977) – this is a gentle product that contains biotin, cysteine and other proteins that are said to improve your scalp's circulation.It is important to stay away from products that contain sodium laurel sulfate, which is common in most consumer shampoos. This cleanser is harsh, and can be toxic if absorbed through cancer patients' delicate skin. Instead you should use shampoos that use salicylic acid in order to clean the scalp.
Nizoral Shampoo – This shampoo was originally created for the treatment of dandruff, but its ability to unclog hair follicles makes it a good choice for those who are trying to encourage regrowth. Among its active ingredients are ketoconazole, which is an antifungal that blocks DHT – a hormone that can prevent hair follicles from getting much-needed nutrients.
Tricomin– This product is available as a shampoo, conditioner, or follicle therapy spray, and is said to use peptides to stimulate hair growth – its action shortens the resting phase of the hair follicle. It is often used in conjunction with Minoxidil, a hair growth stimulant that is said to widen the hair follicle in those who are losing their hair and to encourage regrowth after chemotherapy.0 -
Meg: How are you doing, how was last chemo .Mine was fine but am having a bit of shedding a bit earlier than not a massive amount but earlier than previous shed days so hoping I avoid the big shed. Anyway congratulations on being done.
Jstan congratulations to you too, just 3 days for me but very happy.
Jcs your hair really did great and good luck for the operation tomorrow.
Steph 3977 thanks for the details on Shampoo.
Finally which shampoo worked for most people after PFC for faster hair growth any suggestions folks?.
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Babs524,Elise2460 now I'm hesitate and panicky!!!! I just had my 2 infusion and when took off last cap to move hair around it was flat I lost almost all my hair on top!!! WTH!!!!!y my pic were close to you Babs after 1 infusion. It's the same spot where I felt the coldest. Could the caps be the reason? The temp was -25/-30. My head feels numb 2 hrs later. At this point it looks like I lost 80% total.
Should I continue?? I'm so disappointed and upsetand feel like a failure. I used Arctic , others did well.
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Hi jstan, I read that you kept most of your hair. Did you feel any extra cold spots on certain areas? I just had my 2 infusion and lost 70% just on top total. I'm so heartbroken. I used Arctic other women did good w them. I'm on taxotere and carboplatin. Dr said taxotere would do hair loss. Any ideas ?
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Babs, I just realized that we both comb our hair after CCapping. Could that be the reason we hve major shedding on top!!!??? My hair was matted down in knots but if I would have known! My regiemin is taxotere and carboplatin 4-6 cycles but for combined reasons I think I'll stick to 4. Anyone else ,input ??
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HI Meow, i used Penguin Cold Caps and had 4 treatments of Cytoxan (cyclophosphamide), Taxotere (docetaxel), my husband was my capper and he made sure they were always -32 or alot of time they were colder.We bought large ziploc bags and took the caps out of the containers and laid them flat so they would be the same temp throughout, this also made it easier to shape them on my head.My husband became a cap master, he flung my head around like a rag-doll putting them on and for a few seconds every time i could not breath because the chin straps were so tight, he would see me gasp for air then loosen it LOL I was very fortunate to have face timed a few ladies that have cold capped and watched while my husband put the cap on my head as a trial before i had my first chemo..i am 15 days out but still shedding, and wash my hair twice a week.
Anyone know how long you have to keep ports in for....I am ready to rip this out myself
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Meg- I used a deep conditioning argon oil conditioner throughout chemo. It was so dry and damaged from being frozen I had to do something. The stuff I use is paraben free and sulfate free. I like it so much I'm going to keep using it. I'm going to continue washing my hair just twice a week. My scalp adjusted and it saves time. It's way less itchy than pre chemo. I'm not sure if that's because I wash it less or because I changed shampoos but it looks clean all the time. The first 3 weeks of chemo my hair was greasy but it adjusted fast. I never thought I could be a person that washes their hair once or twice a week but here I am.
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Runner70, what's the name of the conditioner ?? I severely need some !! My pathetic straw hair needs rescue bad! Thanks
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Positivepow…- Congrats! I am glad to be done, but this last one wiped me out. I really can feel the cumulative effects this time I think. I also feel like the round before this and this round my shedding has been more constant, last couple rounds it would be heavier then taper. Now I am worried for next week when shedding is normally heavier. But, still feels SO good to be done and have some hair, it was definitely worth it.
Runner70 Would love to know what conditioner you use. You want to know my dirty little secret? I actually stopped washing my hair completely. I was having so much shedding when I washed it that I started just rinsing every other time, that seemed to cause less shedding so I tried doing that every time and didn't really notice much change in my hair so I stuck with it. Its amazing how my scalp has evened out and gotten less itchy. I don't have oily hair- so this probably wouldn't work for everyone. But now I hope to go back to washing in the next couple weeks and I will also have to condition.
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Sure guys. There's a pic at the bottom of what I use. I get it from Amazon. I bought all 3 together for some special price. It lasts awhile. I just reordered more and it's been 4 months. Just a little FYI, this shampoo does not lather much and it is not supposed to. It took me a bit of time getting used to and at first it seemed my hair was greaser but I promise your scalp will adjust when you aren't washing your hair a lot. I love it now. It smells really great! And I used to have a really itchy scalp with flaking and I'm wondering if I don't have a mild paraben allergy because it resolved soon after starting this shampoo. Previously I had tried everything from dandruff shampoo to tee tea oil shampoo and nothing worked. (My cabinet is full of "shampoo fails")My hair was still dry in between shampoos so I bought a spray on moisturizer from Pantene at the grocery store. It helped too. It kind of freshened up my air dried hair on non shampoo days. Now I don't need it. I think cold caps are just rough on surviving hair but it's worth it!
Another thing I used that saved my facial skin was l'occitane ultra rich Shea butter face moisturizer. So while your ordering those shampoos on Amazon, go ahead and put that in your cart! Between all the harsh drugs and the "chemo pause", my skin got really dry. This stuff is the best!
I hope this helps you guys. If it doesn't, don't stop looking!
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I'm done!!!!! Thank the Lord!
I had my last infusion of TC yesterday. I had 4 infusions every 3 weeks.
I am SO glad I cold capped. I must say- it's terrible... And cold, and babying my hair is a pain in the booty... BUT my hair is mostly still here!
I did not use the straps- I used an ace bandage wrap! I found it was nicer feeling because it's softer than the Velcro straps, and didn't cut in to my chin. I also got more coverage on the top of my head to pull down flat.
The rep said I need to continue to baby my hair for 12 weeks. During this process, I have blow dried and straightened it twice-- that could have made me lose some extra for sure.
Also- I have kinda a big head and lost a lot underneath by my neck where the caps didn't quite reach.
I would highly recommend doing these caps to anyone on the fence. You will lose some... Maybe a lot... But not all which was worth it to me. 
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Meg I agree with you shedding is higher definitely this cycle but its the last chemo attack on our hair and we have been through a tough regime so lets now pray for the growth to come back quickly.
Congratulations Icandoall your hair looks great and well done on completing the course.
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Ok I tried to get in contact w Arctic Cold caps twice about why I'm having trouble w my hair and NO ONE has got in contact w me!!! I'm very disappointed I feel dismissed. It's like bc I'm not a total success for them they don't want to deal me. I hope I'm wrong.
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I am amazed at the VAST differences in the success rates of all of us. Icandoallthings...your hair is remarkable. I am 5.5 weeks PFC and my hair, although pathetic, is still better than bald. I'm resigned to my poor outcome, but can still "pass" without a wig. I am wondering if Penguin are just a better design than Arctic. I'm second guessing - were they tight enough, cold enough, strapped well enough - I think it may just be out of our hands - some of us do really well, some don't.
MEOW, my experience with Arctic was that the nurse/trainer (Mary Lou) was very responsive, but the owner (who answered the phone didn't really know about the process, just the "business" side).
I was hoping I would be different - but the shedding now is REALLY heavy. I figure by week 12 I'll get a haircut - and go short and curly. Hoping there is enough regrowth by then to "cover" the bald spots. On the plus side, I am feeling so much more like "me" - Looking like me will follow - I suppose I prefer this to the inverse.
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