Posted on: Jun 14, 2009 06:04PM
Posted on: Jun 14, 2009 06:04PM
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
Jul 28, 2012 12:46AM Hortense wrote:
For better or for worse I just started a new thread in the chemo therapy forum titled, "You can keep Your Hair!" I am hoping women who have not started chemo yet will spot it and look into cold caps. I would have loved to have found it whan I first visited this website. I hope I don't get flamed for putting it up. I still have chemo brain so it may not be written well, but it will get the idea across that there is an alternative to going bald.
Jul 28, 2012 04:56AM brax wrote:
Susan, Ang7, Geewhiz, Laura5, Luckynjmom, The Ladygrey, (and to anyone else I may have forgotten but not intended to):
I am not sure that you ladies will remember me, as I have not posted on this board in months. I wanted to thank you all for your support, time, and the knowlege you gave me when I began the cold cap process. I am so happy I found this thread and all of you when I did. I still remember the day I called and left a message for my MO to tell her I wanted to use the caps. She did not call me back, and someone else returned my call and said you can use them, but they don't work. Annoyed, nervous, and excited, I contacted Gerilyn to get things going. Annoyed because I never doubted that they worked after hearing your personal stories, I just wasn't sure to what extent they would work.
Throughout the course of my treatments, my MO never brought up the caps, nor did she ever acknowlege my hair! I was taken to a different area of the hospital for my infusions... "so that I would be more comfortable during my treatments" (um right) and I had to fight to get Herceptin last which I did get in time for second treatment. That may jog some memories. Well I went to each treatment and we did our thing and up until the very last treatment, not one of the nurses acknowledged that I kept my hair.
I am now 3 weeks PFC and have hair 4 to 4 1/2 inches below my shoulders. I am not shedding. The only time I really shed was after the second treatment. I did lose some hair over my ears and at hairline but it is growing in quickly and has been growing for some time. I long to use a a hair straightner. These curls and waves get tangled and knotted too easily. I have to say the curls I sometimes do not mind.
Thank you all again and again!
Jul 28, 2012 02:53PM Laura5 wrote:Good to hear from you brax! The part you wrote about having to fight to get Herceptin last did jog my memory. I'm glad you were persistent. Congrats on your good results with the caps, and I'm glad you are finished with chemo, YAY!!! Your MO needs to work on her bedside manner, or maybe she just didn't like the fact that you proved her wrong.
Jul 28, 2012 06:12PM - edited Jul 28, 2012 06:12PM by Hortense
Ang7 - Thank you for adding a comment! I hope others who used cold caps will also, so that it will not drop down the list and out of sight.
Brax - Congratulations on keeping your hair, and for having the courage of your convictions. Maybe your doctor and nurses will learn from you after seeing for themselves that you were able to keep your hair. It's a pity they weren't big enough to talk to you about it when they saw you were successful.
Would you consider posting your story on "You Can Keep Your Hair!" ? I am hoping women will spot it and learn about cold caps before they start chemo.
Even copying and pasting it pretty much as is would be great as you explain so much about what you had to do to be able to use cold caps. I had to switch oncologists and hospitals to be able to use them, so I understand a bit of what you had to go through. My first oncologist didn't believe the caps would work and told me the hospital, Memorial Sloan Kettering in NYC, absolutely would not allow them.
Jul 28, 2012 11:29PM Ang7 wrote:
I do remember you...
I am so glad you were able to use them and keep so much of your hair.
This is a great group of ladies. The best on BCO as far as I am concerned.
Jul 29, 2012 07:52AM sebm9 wrote:
Brax: I absolutely remember you, especially how your nurses took you to a different area for your infusions, and how you had to fight for Herceptin last. Your courage and strength in the midst of all this, is a testament to the power of always being one's own best advocate -- in health care and in everything. And you have had fantastic results! I'm so glad for all your success!! Congrats.
Jul 29, 2012 09:32AM dancetrancer wrote:
Brax, so psyched for you! Way to fight through and advocate for yourself!!!