Cold Caps Users Past and Present, to Save Hair

This was reported on the CTV news site.

http://www.ctvnews.ca/health/u-s-researchers-about-to-put-chemotherapy-cold-caps-to-the-test-1.1377538

I saw the video related to the links makingway and shipsgirl posted- I was waiting for the elevator at work and there on the newsreel I saw a woman with a cold cap on!  I was so excited to see this getting more press.  I posted a comment on the CTV site to support the effort.  The Montana woman pictured on the CTV site was someone I contacted when getting started and she was great - her hair looked fabulous only 2 months pfc and she gave me a lot of good tips.  I'm glad to see the study on the dignicap, too that would be a much easier option if they can get good results and eventually FDA approval.  I think we are all real pioneers!

Susie - that quote meant something to me too.  My GP had suggested I wait until my chemo was done before writing my letter to the cancer agency (you may recall we were scolded for having coolers and were told cold capping was likely going to be disallowed).  Well this article comes at exactly the right time and my letter begins with that very quote.

I believe that the British Columbia Cancer Agency really cares about what matters to patients and that the scolding was just that one woman who didn't like the "disruption" to the routine.  My letter is coming at it from that presumption which I think is a more positive approach than complaining about the one woman.  But I will be attaching the article with key quotes highlighted as support.

I'm glad I listened to my GP. I'll be delivering the letter when I do my last chemo tomorrow. 

I went to the CTV site (where I got the article) and in their "news tips" section, I suggested that they do a followup article about where Canada is on the subject of cold caps.  I told them how I'm only the second person at the Cancer Agency in Vancouver to do it, but that others have come after me.  And I told them how it's free in the UK and standard procedure there, and other places in Europe.  Hopefully someone will take up the ball and run with it.

Suzie Q Laurua Esserman is my doc too.   

Leslievilla - lumpectomy was in feb. Chemo done - thanks! Rads start mid aug.



Shipsgirl - good luck tomorrow and yay!!!!!!



Now how's this for uttterly annoying - I sent the caps back last friday. They are now returning them to me because they are stuck at the border between Canada and the US because they won't accept them in because they are not FDA approved. Helllooooo???? They were sent to me from the U.S., they called Geralyn for more info and then called me back and said nope. Can't accept them. How's this for the most ridiculous thing ever? So here i am with the caps being charged daily to me and i have to figure out how to get them back to the U.S. Very dumb.

Curly, WTF? How do they even know that it's a medical device? I don't see how this is any different from cold packs which are sold in every drug store across the country.

HELP!! I have cradle cap!! So gross. Did anyone else ever have this? It's just in the front. Any idea what I can do make it go away? Thanks for your help.

Amy, I'm almost 5 weeks PFC and I'm still shedding.  I've lost more hair in the past 5 weeks than I did during all 4 rounds of TC.  I'm trying to ignore it, but it's making me anxious as well. 

annie - I had major cradle crap, especially at the front. It was gross. The lovely ladies here told me about apple cider vinegar. I use it with every wash - just a few drops mixed with water and shampoo and it really helps. Minimal flakes, although now I find my scalp to be super dirty due to the minimized washing. But at least those big gross flakes are mostly gone.



good luck!



curly

thanks curly!  i know when my daughter had it as an infant we used oilve oil and massaged her scalp.  just wasn't sure i should do that on myself.  i also saw an old suggestion of tea tree oil.  but i'll certainly use the vinegar.  hope it doesn't spread!  i appreciate your advice.

  If you click on this little icon you can see a slideshow of my hair the morning of each chemo with the dates including 6 months pfc.  It starts with the most recent and goes backwards to Nov when I started chemo.  I put the dates on but it does not show them.  I am not sure how I did it but it seems to be there.  As you can see, my biggest shed was between Dec and Jan, chemo 3 and 4.  The last chemo is the lime green shirt.  The first chemo is the blue and white striped shirt.

Dx 9/12/2012, IDC, 1cm, Stage Ib, Grade 3, 1/3 nodes, ER+/PR+, HER2-Surgery 09/28/2012 Lumpectomy (Left)Surgery 09/28/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 11/05/2012 Cytoxan, TaxotereRadiation Therapy 01/28/2013 External, 3-D conformal external beam radiationHormonal Therapy 03/21/2013 Arimidex

schoolmom - thank you so much for sharing your pics. you are well on your way to getting your beautiful thick hair back - and you didn't have to start from scratch - that's terrific! you look beautiful

Putting diluted shampoo on my hair and allowing the wet solution to soften the cradle cap, then washing gently to loosen it worked for me, though it took several shampoos. I think it happens because oil builds up as we cannot wash our scalps as thoroughly as we used to during chemotherapy.

I am officially PFC.  Wooooohooooo!!!!!  I'm sitting here in my second to last cold cap, hardly believing it's over.  For those just starting, there really is an end.  You'll be there before you know it.

It was probably the best chemo day yet.  I was sent down to the "resident" ward.  They handle chemo overflow and were having a quiet day.  It was a great big room and they welcomed us to have our coolers in the room.  The nurses were impressed that I still have hair, interested in the cold cap process, and friendly as heck.  The article has shown up on the news and in the paper so suddenly people know more about it.

We had a happy friendly time.  I told them how many places in the States have a bell that people get to ring when they're done and how much fun I thought that would be.  (my cold fish onc didn't think that was a good idea at all)  One nurse disappeared and after searching everywhere, she found a "service" bell - you know the kind where you tap the top button to let someone know you want service.  So fabulous!!

When my IV came out, I went over and rang that bell with great joy.  And then I had my mother and brother ring it since they've been through this ordeal with me. 

I don't even care that I have to ride out side effects still.  I'm just full of joy that it's over, gratitude to everyone who helped - including all of you here, pride that I did it with strength, and relief that I still have hair.