Cold Caps Users Past and Present, to Save Hair
Comments
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This was reported on the CTV news site.
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Cold caps tested to prevent hair loss during chemo
Lauran Neergaard The Associated Press0 -
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!
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Thanks shipsgirl and makingwsy. I think this quote from the CTV site pretty much says it all:
Hair-preserving approaches need good testing, adds Dr. Laura Esserman, a UCSF breast cancer specialist.
"If it matters to our patients, it should matter to us," she said. "It's really not more complicated than that."0 -
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.
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SusieQ, that quote actually brought tears to my eyes. Finally, someone gets it. It is my sincere hope that future generations will look back increduously and say " You mean breast cancer patients used to walk around bald??!!" This may be the start. The more that women become aware of cold caps as an option, the more they will demand the therapy. Then hospitals, the FDA and insurance companies will be forced to act. Of course, that assumes they will still be routinely administering chemotherapy. I'm also hoping that advances in testing and targeted therapy and eventually vaccinations might will eliminate the need for that as well.
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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.
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WAy to Go Curly! radiation to follow? are you having a lumpectomy soon?
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Suzie Q Laurua Esserman is my doc too.
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Leslie, that's great. Tell Dr. Esserman we appreciate her work in this area. Show her my before & after pic I posted on this board! How are you doing?
shipsgirl, "last chemo tomorrow" are 3 wonderful words. Congrats to you! I cried tears of joy my last day and wish you a great day and good road to recovery!
jc, your post is perfect and I love your thought process!
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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.0 -
Curly that is beyond ridiculous!!!! Hope a solution can be figured out. I'm stunned...
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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.
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shipsgirl, YAY for being done tomorrow! I hope all goes smoothly and I know you'll feel so great when you take off that final cap. That was such a relief!
Curly - wth? That is unbeliveable...we ship them all over within the US, so I don't understand this. I wonder if they would let you hold them at no charge until they need to send them to the next Canadian user? They were able to get them to you, so it's PCC's issue in my opinion. You should reach out to Frank Fronda the inventor if you can't get anywhere...when I was having my deposit refund issues and couldn't get a reply, I emailed him and it was resolved in a day. You're not the first patient in Canada to use them so I don't get this. UGH!
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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.
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anniej76 is it cradle cap or frost nip? I had frost nip which peeled away on it's own after abour 10 days. It was similar to a sunburn with peeling skin. Otherwise I am sure you can google cradle cap for some suggestions but keep in mind you want to treat your scalp and hair gently.
I am a little anxious because I continue to lose hair and it's been 21 days PFC. I do hope it lets up soon. Anyone else have similar loss at this late date? It doesn't look like my hair has started growing yet as my roots continue to be about 1 inch long which they were when I started chemo in April.
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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.
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Amy, I continued to shed for about 8 weeks after my last chemo....some people do for some reason. It was very nerve ending but then one day it just stopped....about the same time I finished rads. Now I do not have hardly any shedding, even with hair washing. I am just past 6 months PFC and my roots on top are about 4-5 inches as they grew from Nov throughout chemo. Other regrowths vary from 1-3 inches I think depending on the shed. The shortest regrowth is at my forehead hairline and the back of my head. Longest regrowth is behind my ears and at the nape of my neck. Hang in there!
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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!
curly0 -
schoolmom and jc254: thanks for the words of encouragement and your personal experiences. It helps to know I'm not alone with this. Thank goodness I had a lot of hair to start with but I really don't like how thin it feels.
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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.
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Amy I too had long super thick hair before all of this. It has thinned alot but I think we notice it more ourselves than others. The good thing is we have hair and we do not look like cancer patients to strangers. It fills in gradually but I find myself now looking at other ladies in the stores and thinking my hair looks better than theirs! It's amazing how many ladies live with thin hair that you never really noticed before. It will get better and the good thing is that you are done with chemo!!!
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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
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Amy I am 7 weeks PFC and still shedding. However I'm also seeing growth where I lost my hair over my ears. It's not bald there anymore! I'm hoping shedding ends soon. It is annoying and a bummer to keep losing hair so long after finishing. Good luck!
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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
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I use Nutrogena TSal shampoo when I get scaly patches on my head. I've found that if I go for several days without shampooing I can get a buildup. You can also get salicilic acid in a squeeze on bottle and put it right onto the scaly patches. The shampoo can really dry out your hair so I try to use it only on the dry patches. I don't know how this works with the cap protocol, but I think if you have cradle cap you need to take care of it so it doesn't get worse.
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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.
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I just spotted this article about Black women not getting breast cancer treatment early enough.
http://www.nbcnews.com/health/why-breast-cancer-kills-more-black-women-theyre-sicker-6C10722276
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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.
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Shipsgirl - YES!!!!!!!!!!!!!!!!!!!!!!!!!!! HUGE congrats on being PFC!!!!!!!! Oh, I remember that day well. Such a happy feeling!!!!
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