Anyone choose NOT to use 'cold caps'?

rleepac

I like the idea of keeping my hair but honestly it's not all that important to me (just praying that it won't be permanent!). I don't do well with anything cold as I have Raynaud's disease so I'm a little concerned about trying the cold cap. But everyone (mostly family) seems to think it's going to be the greatest thing since sliced bread. My gut says to not even mess with it.

Anyone else choose not to cold cap? If that's what you chose, why?

wrenn

i was ok being bald and my hair came back way nicer than before. I couldn't have handled something cold on my head. I don't think they are commonly used or at least all the women i know were bald.

Do what you are comfortable with. Tell your family to wear cold caps in solidarity.

rleepac

ohhh I like that...let's try freezing your scalp for a few hours and see if you still think its a great idea! My breast surgeon said it's standard to offer it at my CCC. I just don't feel like it's right for me.

Kicks

I did not do 'Cold Caps'. Never thought about it.

I am always cold anyway so -. During Chemo I normally ran a temp of 94 - 97 so doing anything that might lower temp did not make sense to me.

My hair came back exact as it was pre-chemo unfortunately. I'm 68 now and my hair is still as dark brown as it ever had been naturally. I HATE it when strangers in stores tell me I would look 'younger' if I didn't dye my hair so dark - I DO NOT DYE IT! It's just genetics from Daddy's side of my family . Mom's side got very/white young.

Momine

I am afraid of the IV and it hurts me, so I sat stock-still through all my chemo, with the IV arm on a pillow, watching the line. It was very uncomfortable and also meant that I didn't eat anything or go to the bathroom during. I can't imagine freezing my head on top of all that.

Sunny_Girl

I'm two years out of chemo & didn't know about cold caps at the time. I had herceptin and am now on Arimidex. My hair is different now, but I've had 3 haircuts!!! Being bald was the least of my concerns at that point.

The only part that is hard for me now is I have very few eyelashes and thinner eyebrows. Now all of a sudden I'm concerned with my eyelashes!! Too funny

Sjacobs146

even with cold caps there is going to be some thinning of hair, it's not going to be the same. I don't like to be cold, and cold caps are quite expensive, didn't seem worth it to me. But I wear my hair short, I could imagine that someone with long hair might want to give it a try, it takes a long time to grow back long hair

Momof3GreatKids

I looked into cold caps but they were very expensive and a lot of work during chemo changing them and keeping them cold. I also read about one woman's journey using them and decided they were not worth the cost. My hair actually started comibg back during taxol so I was only completely bald for about 2 months. I also had fun with hats since the wig I got was very itchy and hot. My hair came back the same thickness as it was before but curly which I do not mibd now that I have found a shampoo that keeps it nice. If these were supplied to me at my cancer center I may have tried them the first time if there was no extra cost to see how cold you actually get, but that was not offered to me.

AmyQ

I used Cold Caps and they worked well however if I ever have to do chemo again, I would forgo them. They were a huge pain in the butt, but at the time I couldn't let my clients know what was going on in my life. I continued to manage my business without a hint of a problem.

I'm in aww of anyone who fearlessly forges ahead without hair. I think it's harder to do this than it is to use CC.

Amy

Bippy625

hi,

Did not use CC, my onco does not recommend them. I wanted that awful chemo to go everywhere and kill any stray cells, including my scalp.

Last chemo was 11/21, and my hair is coming in really nice, thick as always. Being bald sucked, no lie. But better than BC! I respect anyone elses choice to use them though

downdog

I researched cold caps before I knew my treatment plan (Oncotype Dx score came back very low) and would have tried them. I have a great head of long hair and would have wanted to try and prevent hair loss. I think it depends on how 1) motivated you are to try and preserve your hair and 2) your tolerance for cold, which is influenced by the climate in which you live.

rleepac, I live in Canada and am an avid skier. I have bad primary Renaud's in my hands and less so in my feet. Even in the cooler fall and spring weather I wear gloves and my fingers are pink/red/purple indoors for 7 months of the year. I could not ski without heated boots, heated gloves and heat packs for mitts. I walked my dog this morning in -7C (19°F) weather for 30 mins and could not do so without heated gloves. I do not need to wear a hat or hood unless the temp is below -15C (5F), so my head is not sensitive to cold, but I live in a cold climate for 5 months of the year and am accustomed to cold. I could not plunge my fingers into icy water for more than about 10 seconds without pain shooting up my arms, so if cold caps had to be worn on my hands, it would be completely unfeasible for me. I was very concerned about permanent peripheral neuropathy from chemo on top of the Reynaud's and seriously told my husband that we would have to move to a warm climate, if that happened to me. I was so relieved to find out that it wasn't part of my treatment.

Kicks, you've got more years of frustration ahead of you. It's amazing how ignorant people can be with their comments. My mother is 84 with unbelievably natural dark brown hair with great body. Her hair is her pride and joy. Up close you can see that she has about 20 white strands, but they blend in and you cannot see them unless you look for them. No one believes she doesn't dye her hair and she is so fed up of the years of telling people that her hair colour is natural. Even after pointing out the very few white strands, some still don't believe that it is possible at her age.

jlstacey

I had long hair when dx and lots of it. When I was waiting for the biopsy results I decided if it was malignant I would cut my hair and donate it. So on 1/28 I cut my hair off and donated it. It's about chin length and should start falling out at the end of this week. I never even thought about doing a cold cap, even though I still need to come to terms with losing my hair.

Momine

AmyQ, I wore diva scarves and stylish hats and stuff. Lots of people, even people who saw me every day, did not realize it was because I was bald as an egg.

exbrnxgrl

Hi,

I have no data but I would bet, in the US at least, that more women don't use cold caps than do. Since they are not standard of care or covered by insurance (as far as I know), most forgo them. There are clinical trials going on in some places (UCSF is/was trialing Dignicaps). Those who do use them are very motivated and willing to absorb the expense and have helpers with them during chemo. Not a judgement at all, but just an individual choice. When I thought in was to have chemo, I looked into them but decided the expensewasn't worth it for me .

Trvler

I met two women at a support group the other night who had done them. I am not sure yet if I am doing chemo. (I can't even decide on a surgery yet). But just out of curiosity, how much $$ are we talking? I know they are expensive but not HOW expensive.

208sandy

My two oncs - one in US one in Canada do not recommend cold caps - I had taxotere and seven years later I still have bald spots (large ones) so wear wig, or scarf or hats except when at home - I have skin mets so glad I let chemo go to all parts of my body - I hate that I lost my hair but I've managed to mostly get over it....

Kicks

Downdog - I know I'll continually be told by 'stupid 'pebbles' to not dye my hair forever. As you know there really are some who do not grey up and remain dark haired naturally basically forever.

Mom's side of the family all greyed young - she started greying significantly in high school (at least according to Daddy who had know her then). My brother took after her side and greyed relatively early. Daddy was 68 when he died and did not have a grey/white hair on his head. After Mom died, Daddy lived with us and as far as I know no one ever told him he shouldn't dye it but some 'Peebles' would tell me I should not dye his hair for him - I didn't dye it. His Mom lived to 95 and though her hair was a much lighter brown, it stayed it's natural color but she did get a few white hairs (maybe 15) as with your Mom you had to search for them to see them. Again with her, I was asked why did I dye her hair and how did I keep her 'roots' from ever showing. Back then I owned a beauty shop and was a Master Cosmetologist, did do her hair weekly but absolutely never colored it but I don't think anyone ever believed me. Both of my G-grandmothers on that side also lived into mid 90's and both retained their natural color (1 very dark brown, 1 lighter brown). So I'm 'stuck' with very dark brown hair and the only thing I could do to make it what 'Peebles' think it should be would be would be to frost or bleach it which I'm not going to do. But then, if I did I would have dark roots coming in.

I actually had a Dr (a Dermatologist) about 3 yrs ago ask me what color my hair had been naturally. At the time I didn't think a lot about it as I was seeing him about some skin issues and I am very light skinned and have light green eyes which don't usually go with as dark as my hair is. Butl later I thought about it and think he was thinking/inferring that my hair was not it's natural color.

ElaineTherese

rleepac -- I was too lazy to do cold caps. Losing my hair wasn't bad; it's the eyebrows and eyelashes that I mourned. My last chemo was 12/3/14, and my hair is growing back. My eyebrows are coming in haphazardly, and my eyelashes are still to sparse for mascara.

I still wear a wig at the office for professional reasons but I'm increasingly going out with just a cancer hat. As it warms up, I'll ditch the hat.

exbrnxgrl

trvler,

When I looked into cold caps they were about $550. amonth plus a $500. deposit.

Noor46

I started chemo end december FEC and I chose not to have a coldcap, being bold is only temporary. Lost my hair and really for me it doesn't matter. But after FEC I will get taxotere and my onc really want patients to use the coldcap, because there is a real risk for permanent baldness, so I certainly will use the coldcap then!

So if in your chemo is taxotere, please consider using a coldcap

exbrnxgrl

Noor46,

I see that you're in France. Are the cost of cold caps covered by insurance

rleepac

Thank you all for your input. I am treating at UCSF and my BS's words were 'we offer cold caps' so I don't know if that means it's free (part of a trial?) or if they rent them...I didn't ask because I had too much else going through my mind at the time. If there is a cost involved, then that will certainly factor into my decision because funds are a little tight right now.

@jlstacey: we got our diagnosis only days apart but I haven't started treatment yet. Waiting for Tumor Board recommendation on Monday (I hate waiting!!!!).

@ElaineThere...: I'm also a little lazy and don't want the hassle.

@downdog: THANK YOU for the Raynaud's input. I've thrown it out there on the cold caps forum but nobody responded with any experience. I typically have only noticed it in my fingers and to my feet to a lesser extent. I've never had any specific problems with my scalp but then again, I've never put ice on it In general I just don't do well with anything cold. Maybe I'll try it once and see how much of a pain it is.

@Noor46: The possible permanent hair loss associated with Taxotere does scare me a little but dying of breast cancer scares me more! All of this sucks...

So may great responses...thank you all! I think I might give it a try once (if it's free) and see how it goes. But I'm ok with losing my hair if needed so I'm not going to stress about it.

exbrnxgrl

rleepac,

As I mentioned, UCSF, was running on trial with Dignicaps (a Swedish brand, similar to Penguin Cold Caps). If the trial is still going on or if they have decided to make it available,to all patients, as part of their chemo protocol, I would consider it over shelling out nearly $600. a month. I am in the South Bay at Kaiser Santa Clara and cold caps are not part of their protocol, but perhaps when I eventually need chemo, they will be standard

Janetanned

I chose not to use cold caps for a number of reasons.  The first being that I didn't want to worry about anything other than getting through chemo.  The caps require a lot of fuss and attention.  They also cause worry - you still shed throughout treatment and it seems that users are always worried about how much they are shedding.  There is no gurantee and I was having AC/T, which is very hard on hair even with the cold caps.   Another reason was the cost.  I'd rather buy a new piece of jewelry or bag.  Care of hair during chemo was also a concern.  I worked throughout chemo and I didn't want to worry about having greasy hair and not being able to style my hair.  You really can't do much with your hair when using the caps.  My wigs were always clean and ready to wear and they looked great!  I got so many complements that I decided to grow my hair in to look like my wigs. And finally, I'm pretty independent.  I didn't want to depend on anyone else during treatment.  I took a train to my medical center on treatment day; saw my MO; got my blood work done; had a cup of coffee; and began treatment by myself.  This was my time to meditate quietly as the chemo was doing its job.  My husband would work a half day and join me at lunch.  He would bring snacks or treats and stay while I finished.  We would leave together. 

No one ever knew I was a cancer patient unless I told them.  My wigs were not very expensive and they looked very real.  I had a work wig and a weekend wig that was a little more sassy.  My daughter helped me pick that one.   My hair grew back in better condition than it was.  I'm three years out and my hair is longer than it was before chemo.

I have no regrets and would do it again if necessary (God forbid).

 

exbrnxgrl

I believe the dignicaps area hooked up to a cooling mechanism and don't need to be changed like the Penguin brand. They have been used in Sweden for many years.

http://www.dignicap.com

Check out their site. The procedure for use is quite different than Penguin.

exbrnxgrl

According to clinicaltrials.gov, the study is ongoing but is not recruiting new participants and no study results are available.

exbrnxgrl

Yes, I agree. I think we hear more about Penguin because individuals can rent them. It seems as if the machine that maintains the dignicap cooling is owned or rented by the medical facility.

rleepac

@janetanned: Thanks for your input - very valuable!

@exbrnxgrl: Interesting...I'll report back what they say when I go back in for my appointment. Just in case anyone is curious about the dignicap.

Beachbum1023

good morning all, I did not use cold caps. They are not offered at the hospital I chose for my chemo infusions, seemed liked a lot of work, and I wanted a real hair wig. I had it made to match my real hair, they matched my color roots and all, and the cost for it was no different than if I had my hair. I only had to wash and style it once a week, it was a custom fit so very comfortable and soft, and it looked better than my hair. I had a lot of compliments on it. I have been wearing her since the second week of August '14. And it looks great. It just seemed like a lot to deal with, and the cost was too much for me to consider it. And going through AC/T was enough!

windgirl

I really wanted to do it and was willing to withstand the cold and the expenses (good wigs are very expensive too), but the several doctors I saw were against it (except for only one) and I did not want to take any chances. I also did not ice my ties nails or mouth due to the same reason.

I absolutely hated losing my hair. If you do end up not using the cold caps but are self conscious about hair like me, you can look into lace wigs and PM me if you want more info. I was told many times that "at least I did not lose my hair". They look very natural. Although once someone tells me that I always feel like I would be lying if I said yes so I end up telling that it's a wig

RebzAmy

I did use the cold cap for the majority of my treatment and it didn't work and in the UK it's free. Towards the middle of treatment, so much hair had come out and the cold on my head was so painful, that I chose to stop using it in the end as it wasn't working. The cold was extremely uncomfortable and as my hair got thinner and thinner, it got worse and worse so I was pretty relieved in the end when I stopped using it. I then got a wig. I know that it can work for some people, but those people are very few.