Anyone choose NOT to use 'cold caps'?

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.

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

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

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.

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.

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.

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.

trvler,

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

Noor46,

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

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

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.

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.

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!

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.