COLD CAP - Your opinions and experiences please

Hi @JJ70 , my oncologist recommended I give the Cold caps a try when I started my AC Chemo but she also told me that I would have a 50/50 shot of keeping my hair. For me it wasn't worth the hassle, the cold caps themselves weren't too bad to put up with and if my hair hadn't started thinning quiet badly maybe I would have kept going with them.I found that not being able to wash, style or colour my hair was as big a stress for me as loosing it. I also found that I was getting really upset worrying about what each morning would bring when I brushed my hair. 3 weeks into treatment my husband shaved my head, all up I had 6 months of Chemo AC and Taxol and now have a full crop of hair. There were many other women who had varying degrees of success with the cold caps depending on the types and length of treatments they were on. One thing in favour of them is that your hair definately comes back faster once Chemo has finished. Like everything in this roller coaster we are on you have to do what works best for you, I was glad I gave them a try but in the end it wasn't that bad loosing my hair. ( lucky hats were in for winter )
Good luck with your treatment

@kezmusc I think you are right, I do think alot of Oncologists are dismissive of it. Mine was really good, we discussed it, and was honest and said that if I were doing just Taxol he would definitely recommend it, but doing 4 rounds of FEC he said in all his years he hadn't 1 patient fully successful. I remember feeling disheartened but then thought I'd sooner know the truth. I have alot of friends that did use it and happily, although they didnt get the results they'd hoped for. I do think absolutely give it a go, there's nothing to lose, good to hear you had such success. I think this is something that will only improve possible with time and changing treatments. 

Hi @AllyJay
It's a shame they aren't promoted a bit more.  Some oncology Dr's are very dismissive about it and don't even mention it unless you ask.  Even recently I had a work collegues wife going through the same thing , he knew me and had seen me the whole way through treatment.  His wife was very excited that she may be able to keep her hair.  However when she mentioned it to her doctor he just flat out said, "they don't work, there is no proof".  She was devestated that he would not even entertain the idea.
 I was very lucky that my breast care nurse had worked in the UK for a number of years and had seen the results over there. She got me in to a hospital that had a brand new machine that had been donated by a previous patient. My nurses were brilliant and very excited about their new machine.  
It really just should be an option for everyone that wants to try it without the sometimes blase attitude from some doctors.  

I used the new style of cold caps about 3 years ago so things might have changed/ improved. Not being able to use headphones to listen to music, and not being able to hear very well were quite isolating and the nurses saw the cold caps as taking up their time. They also messed up using the machine. 

The cold caps were very painful for me and I felt dizzy at times. Using them added about 24 hours to my time in the chair over 6 months. I was working and it was good to keep my hair for some of the time. I do have a slight patch of very thin hair near my forehead and I wonder if this is from the cold caps. I’ve written about this before, but I’m not sure I’d use cold caps again. I wish I’d used ice gloves and socks instead as my neuropathy has continued on and is very uncomfortable. 

Hi there @kezmusc , I'm not too sure that any of us didn't particularly fuss over losing our hair, I know that for me, the statement of "I guess it all depends how much you want to keep your hair" most certainly didn't apply. I had grown my hair from the age of eleven and only heard about these cold caps after I was already in the middle of chemo and had lost all my hair already. Had I known about it before, I might have tried it, but I didn't, so that's all academic now. Having said that, I actually shaved my head the weekend before chemo started, so that I could keep my ponytail and not lose it down the drain or on my pillow a bit at a time. I found it very empowering, and felt like it put me almost into "Warrior" mode, and ready for battle. This photo was taken just minutes before the Big Shave.

Totally understandable, I think for alot of us it was a traumatic thing to get your head around, so very normal. Very personal absolutely I know @Kat09 did it too, maybe she can jump in with her experience. All the best I hope it all goes well. Hugs Melinda xo

Thanks all for this info. I plan to give it a go because at this stage, losing my hair seems like a bigger deal than losing my breast after chemo....not sure why. 

Hi @ JJ70. It is one of those personal things i guess.   I would have walked over broken glass to keep my hair so I really didn't care about the cold or the time.   Besides, the chairs are comfy, you can order food and get to sit under nice warm blankets and read a book:)

I used the cold caps for 4 x AC and 12 x weekly taxol. The first time you do want to rip it off your head as soon as it starts, you just have to remember it doesn't take long to settle.  It took me about 5 mins for it to be ok. I took no sedatives or panadol, it just depends how you cope with it I guess.  It gets better as you go along as you know what to expect.  The time at the appointment is a bit longer, but given that you need premeds an hour before they start anyway that takes up the first hour of cooling.
Make sure the nurse knows how to fit it properly and keep a check throughout  the treatment on the centre of your scalp.  I just used to give it a bit of a shove down every 10 minutes or so to make sure it was flat on my head and that my hairline around my face stayed covered.

 I guess it all depends how much you want to keep your hair.  Personally I was so absolutely thankful I got to use it.  It worked brilliantly and made everything just that bit easier to deal with. I could go to work or out with friends and family not looking any different to normal. My profile picture is at week 1 of radiation so 4 weeks after chemo finished.  It thinned but only I could notice.  If you want to know about products or anything I used just message me. (I wasn't paying $100 for the recommended shampoo and conditioner).
All the best.  XOXO

I used the cold caps and only experienced the 'brain freeze' for first 20 minutes.  Pandadol took edge off it.  The following treatments were with minimal discomfort.  After first treatment, I cut my hair short as found the dripping uncomfortable and the chemo affected hair quality.  I thought if I can't stand the second one I would shave my head in preparation for hair loss. The only problem I found was the extra time you spend in the chemo unit.  Was worth it as I only suffered a bit of thinning on top and wore a hat for sun protection like JoeyLIZ.

I used the cold cap treatment for my 4 x AC treatments. It is painful, but bearable. My nurses gave me a sedative so it relaxed me to deal with it.  It does add about 1.5-2 hours to the time In the chair. It was reasonably effective - I kept about 50% of my hair. 
However when I had to do the 12x weekly Taxol treatments, I just decided to let it go, eg not do the cold cap.  Too long in he chemo chair + I didn't like the idea of the sedative and I was stressing so much about keeping my hair.  
BEST decision I made! There are so many cute chemo turbans and scarves. Everyone at work - I have an executive role - loved seeing what my new scarf for the day was.  I just decided to make it fun! 
As another persons has said: it's a very personal decision. But having been thru it -- and I loved my hair, it was gorgeous before! - I am glad I stopped the cold cap and just let it be.  Part of the change and healing process......good luck!