Input requested: would you use a Penguin Cold Cap

Annie62

Hi ladies,

I'll be starting chemo next week. Gemzar and Abraxane. Been told that there is a chance I won't lose my hair at all, or I might. Probably see thinning. (On top of the thinning from  Aromasin that I've had!). One women at my cancer center is using it with Abraxane and doing well hairwise.

My concern is scalp mets. I'm not sure of all the details, but I guess the chemo does not get to the scalp well when you are wearing the cap. Fortunately my recurrence does not appear to have mets with the exception of 1 infraclavicular node. Many women who use the caps are early stage and so the likelihood of mets in general, and skin mets (scalp) is slim.  But given that I'm Stage III and had a recurrence, I'm thinking maybe I should take a more conservative approach. 

I'd appreciate input from any of you Stage III ladies.What would you do if you need to go through chemo again or are going through it for the first time?

Thanks!

Annie

KerryMac

Well, this is a tough one.

I really don't know - I guess I would need to know how often do people actually get scalp mets (I can't imagine it is that common, but I may be wrong), and how many people that use the cold cap then go on to develop scalp mets?? Do they know this yet, or are cold caps too new?

I know I would feel really stupid if I used a cold cap and then got mets there. I have always been of the opinion that I would throw everything I can at this. But again, I hated being bald, so I would be very tempted to use one.

Sorry, not very helpful here....

BarbaraA

There is a cold cap thread. I would search for it and go there.

Annie62

I've read the  cold cap thread (s). It mostly deals with did it work or not in the shortterm although that is where I read that I should at least think about scalp mets.

I guess my question wasn't clear. My question was more on the lines of 'If you had a recurrence and needed to get chemo again' would you do this or do you thing that given that we are not Stage 1 or Stage 2 or Prophylatic or Stage 0 ladies, that the scalp risks is  not worth it. The comments on scalp mets are always about how rare but most of the women using the cap are not Stage III.

Sherri -cold caps were newish when I had chemo in 2005 but the onc said it wouldn't work for someone gettng Adriomycin so I didn't bother. 

Kerry - your comment encapsulates my feelings - if I end up with mets there I'd be kicking myself. But I'm wondering if I'm just being paranoid now!

Work is the main  issue with having no hair. They saw me that way 5 years ago but I really don't want to do that right now. I have a wig but I didn't wear it a lot - itchy, tight feeling - and never could get scarves to stay on and well, I have a really big head and its hard to find hats to fit, LOL.

Anyway, thanks for your replies ladies. need to make up my mind soon so I can order them if I'm going to.

Annie 

krcll

When I was going through treatment, I made some priorities. Priority #1 was to stay alive and hopefully avoid getting mets. Meaning that staying alive w/out mets was more important than being able to work again after treatment (I am a musician and Taxol can give you numbness of the fingers- not good for a musician!). Priority #2, if possible, was to avoid permanent SE's. Meaning that I would accept temporary SE's but might work harder to avoid something permanent.

This all translated to that I did take Taxol and would have taken it no matter how much neuropathy I would have gotten (some musicians refuse to take it- notably Melissa Etheridge). But I was offered the use of cold-mitts , which is based on the same theory as the cold-caps- freeze the area (in this case the fingers and hands) and the chemo won't get to it. After talking to the onc, I decided to do it because it was a question of a possible permanent SE and it involved my livelyhood. The onc said that they don't really know if it makes a difference in the treatment but they don't think so. And as he said, "no one gets mets in their fingers". But since they don't really know for sure, I wouldn't have used the ice-mitts or the cold cap if it was a question of a SE that was temporary, like losing my hair. Just in case there is a chance that it gets in the way of treatment. I do think scalp mets are uncommon, but I have read of women on this board that have them. 

What about trying to make scarves work? I wore a "hat liner" that helped the scarves stay on better. Even just a cotton hat under the scarf is enough to make it stay put. I learned how to tie the scarves in lots of different ways and ended up buying about 40 different scarves at the Good Will, so that I had a scarf that went with each outfit. It turns out that some people that didn't see me so often just thought that the scarves were a "fashion statement" and didn't realize that I didn't have hair. 

It must be hard the second time around and I understand wanting to feel normal at work. I hope you find the right decision for yourself and that the chemo really does its job now!

lago

To be honest they don't know for sure about mets to scalp or brain when using cold caps. Just remember that when you freeze your scalp, fingers, toes, mouth etc. it prevents most of the chemo from going to those places. That's why your hair may not fall out, you may not get mouth sores and you may not get finger/toe nails issues.

Typically if you get mets it usually shows up in the lungs, liver, bones and brain. The brain is what some folks worry about with cold caps although there is no proof or studies to say that the cold caps would be a problem.

For me personally I did not consider cold caps not only because of cost but because I do have concerns that this hasn't been studied yet.

KerryMac

Annie, I have been thinking about this all day! (shows how interesting my life is, LOL!)

I think if I was Stage IV, I might try the Cold Caps. But anything lower, I think I would be inclined to  blast every cell in my body.

Much as I really hated being bald, I would hate being dead even more.

Annie62

Thank you for all of your thoughts. Very helpful.

Iago, the cost is an issue as well. It would cost about $1,000 I think, plus the effort, needing to bring someone to infusions with me. Organizing the whole thing is just another thing added to my currently stressful life! But when treatments are done and I have crap hair for a couple of years again, (by the time it growns back - my hair looks like the length of KerryMac's in her avatar) I may be wishing I went to the effort.

Krcll - good way to approach it - baldness would be temporary and it doesn't affect my livlihood. I'm in sales, and can wear a wig when I have meetings.

And Kerry - thanks for thinking about it all day!!! LOL. I truly appreciate it.

lago

BTW I'M wearing a wig in my avatar

melania

Well i heard about it but i didn't use it cuz i heard it wont let the chemo go through your brain or headpart and i didn't want to interfere anything with the chemo  . I am not sure if that's true but i didn't want to mess up with the nature of the drugs in the chemo by keeping them cold.Although i heard lots of success stories from the ladies that used it and never had a problem, but that was my choice.

Hope we will all get back our hair soetime after all these things

everyminute

Annie - I have thought alot about this , I have a cousin who was diagnosed at the same time as me who is now stage iv.  I have a few friends that are also. 

My feeling is that if I were stage iv, I would try the cold caps.  I would also try every hormonal before chemo. I havent really thought about a new earlier diag because I had a bilat immediately - not impossible but improbably.

That being said - I wore a wig every day - even at home. It didnt look like a wig - it was a henry margu (I think) - cut bob cut that I would even clip back part of - so it looked very natural.  I wasnt uncomfortable and I didnt hate it, I just hated being bald.  I wore dark eyeliner and penciled in eyebrows.  I was so good at it that my boss (who I work closely with daily) said to me six months later - why didnt you ever lose your eyelashes and eyebrows.  So if work is your only concern, you can probably deal with that.

hugs.

motherofpatient

Since cold caps have been used in England and Europe for 10 or 15 years, I wonder if there are any stats on recurrance involving scalp mets.

kimber3006

I wouldn't use it, but then losing my hair wasn't really that big of a deal to me.  I didn't like it, but I think I was too preoccupied with the thought of dying to pay that much attention to it.  That said, I also have a very large noggin and had a hard time finding hats.  I had to take a seam ripper to most of the little under cap thingies to get them on without a headache.  So I'm with the stage-IV-use-it-but-otherwise-don't group.

YATCOMW

I like mother of patient's idea......what is the data out of europe.

 

I remember when I was first diagnosed and I was told that I would lose my hair.....my husband and I laughed and thought.....that is nothing.....I just wanted to save my life.....with a huge tumor/lots of nodes.  I bought a fairly expensive wig and strangers would comment on how beautiful my hair was....they had no idea I was wearing a wig.  I never took it off.....hated being bald.

 

After tons of chemo and Femara....my usually nice thick hair came in terribly thin....I hate it....

 

With what I see now in the mirror.....I would definitely have researched the cold cap extensively.

Maybe sounds terribly vane but I think cancer takes enough....I would have liked to have kept my hair.

 

Jacqueline 

Annie62

Thanks for your thoughts everybody.

Jacqueline, My hair came back after the last chemo (5 yrs back) but it took years for it to look good again. I don't mind being bald for a few months with the exception of work; I do mind having crap hair for many years! Since Aromasin my hair has thinnned a lot. Thankfully it was thick to begin with but it still bugs me. I really need to figure out a new hairstyle.

Kimber, Nice to have someone understand that having a large cranium can be troublesome!

Annie

cheshirecatsgrin

hi im useing them at the moment , i read a lot of stuff about them .

but the one thing that i thought would help the most was looking normal, and that would make me feel better.and i have felt so sic most of the time , and the times when im being sic and im in hospital , i hold on to the fact to the out side world i dont look like a sick person .

i so didnt want the pitty looks

and after 5 seassons of chemo ,i have 97% of my hair , im starting to feel pretty good again , and by the end of feb (my laast chemo is the 3rd feb) i will be cancer free (cross fingers) and look , normal, i have to draw my eye brows in but hey , so do a lot of other people 

oh and they are not hard to use ,u only need one person to help , and here in new zealand it cost aprox 5000k . but its worth it

Rachel1

I half-heartedly used them when I was on taxotere because I had heard horror stories with taxotere causing permanent hair loss.  So, I used them three times and did not get them as cold as they were suppose to be and didn't change them as often as recommended.  I kept wondering if I was doing the right thing using them and did stop and mailed them back. I'm 3 months out and my hair is coming back as thick as ever -- and I'm on tamoxifen which I thought might thin it. It is such an individual decision and I know how difficult it is to make.

Hugs,

Rachel 

motherofpatient

My daughter did one tx on Penguins, we paid for them the first month but she didn't get to have chemo due to a complication - so we paid out $429 for them to sit in our freezer. Then I found the elasto gels. They cool and stay cold just the same but are not in boxes and can be carried in one 48 qt cooler (for those of us in the backward USA). Here in the USA, Advance Cold Caps has designed a cooler that keeps you from having to deal with the dry ice unless you want extra zip bags of it to set inside the helmet for a quick cool.

They are getting their system up now but here in Atlanta area, even 70-80 miles away, they deliver the cooler to you at the chemo center and show you how to use it. I hope they come up with a less expensive monthly plan than the PCC because it is so hard to afford it, 100 pound of dry ice, all the other OTC meds and supplies and the co-pays on Rx meds. Check their web site for updates - advancecoldcap.com.

I hope this catches on because it was a chore to lug two 60qt cooler around and the chemo nurses, already sceptical, are not thrilled about the extra baggage in the chemo room. Also the helmets are soooo easy to change that we can do it in the car on the way home, saving an extra four hours at the center. Because the PCC's are so hard to change, we needed to pull off the expressway and find a spot then juggle the timing to exit before we needed the cap. Miss an exit and you could end up having to pull on the side of the road with 80 mph traffic rushing by. Such is live in Atlanta metro. Speed limit is 55 but you get blown off the road if you stick to that.

yizbieta

I am starting chemo (TC- 6 X over 18 weeks) this Friday and I am all set up to use the Peguin Cold Caps. I have really long hair and have heard nothing but good about the caps. It is breaking me financially and it is a lot to set up, and I am waffling on it now that I have put it all together because I too wonder if it will return in the scalp, and can I really afford this and am I just being vain? I am early detection stage II a   -the possibility that it may return is scary. I realise I am taking a chance, but from what I have read, it is a very, very small chance, again, from all that I have read. I found a person who is experienced in applying the caps and I will let you know how it goes as I find out.

kathleen1966

At the hospital where I received my chemo, the nurses told me that they once used the cold caps and had to stop because too many people were getting mets to their scalp area.  I think they were talking about the skin, not the brain of course. They did not recommend them. We were talking about how they really need to come up with a drug that prevents the tramatic hair loss that happens with chemo. I think it is a very important negative aspect/side effect of treatment.  I know there are some who think this should be of little concern to those of us fighting for our lives. It was a big deal for me and is for most women. I have heard that the caps work, however. 

lago

I didn't use them. It seem like a real PITA, expensive and had some concerns about scalp mets.

Last chemo Jan 18th. My hair is growing back just fine 7+ weeks out now. I was on 6 tx of Taxotere, Carboplatin still on Herceptin AND have been on Anastrozole for 10 days.

My dermatologist seem to be familiar with permanent hair loss and taxotere but said it was very rare. I think I prepared myself for the worst… but there wasn't any need.

motherofpatient

Cold caps do work when used correctly. You can buy the elasto gels for $85 each and do it yourself following Fank's hair care but change the caps more often since elasto don't stay cold as long.