Cold Caps Users Past and Present, to Save Hair
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YAY! Today is my big chemo party. Tomorrow I ship back those caps. Adios! Thank you for the well wishes. Honestly, I am glad I did chemo and I didn't chicken out. I am also glad I bothered with the caps. For all the effort and expense, it validates that my emotional well being is worth something. Before & After pics to come and hopefully a video of my party.
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Congrats WW! I'm so happy for you that today is your last chemo!! Enjoy your party!
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We took lunch and the kick ass cake that is my avatar. Champagne for us and sparkling cider for the nurses! They danced and sang a graduation rap! It was as fun as chemo can get!!
Have an awesome partay WW!!!
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Congrats Warrior Woman! Soooo happy for you!
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Congrats, WW!
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Congratulations Warrior Woman! Looking forward to the pics.
Summer70 - how is my fellow weekly taxol person doing? Any shedding? You must be nearing the finish too.
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Doing great, Patin- thanks for asking. I have definitely had some shedding but going into my 10th week, it's been fairly minimal. I agree with you that we had a much kinder, gentler start than those who began with AC. No neuropathy or major SE's so far. How about you?How are you finding the herceptin? Are you taking hormone therapy as well? Hope it's all going well.
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Congrats WW. So excited for you to be done with chemo! Thought I'd post an update on hair care - I colored, highlighted and cut my hair today. Feels great. No major shedding or anything. I'm 4 months PFC. I was really afraid to take the risk but it all went great!
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Thanks Everyone! As promised here are the before and after chemos and my party video.
Let's keep it going Cappers!
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Looking fantastic WW!!
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Awesome, WW! Congrats on making it through - you look incredible! Also, forgive me if this has already been posted, but I just heard that UCLA here in Los Angeles will be participating in the DigniCap trial and they are looking for participants. Spread the word!
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Warrior woman- congratulations! Great video, it made me emotional as we all share the same feelings. You look gorgeous! I really can't tell the difference. Wish you many great things from now on.
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WW you look amazing! Another PCC success!!!! Yay!
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Here's the link to the segment shown on CBS Channel 2 news:
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We need a "like" button makingway!!!
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The above link isn't showing the video now...You can still read the article. They probably got bombarded with hits LOL I hope they fix it soon!
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Warrior, I'm so so happy for you. What a relief that chemo is behind you. Keeping your hair (which looks great!) is a huge bonus. Every successful capper is one more person (and their team) who can spread the word that these things actually work. Congratulations!
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I feel like crap but I am so glad this is over. Now I can cheer on the others who are moving toward that finish line.
The DigniCap trial looks like a modern version of the PCCs. How long does it take to go from trial to FDA approval? I suspect too long. But one day we can tell the generations to come about how hard we hard it back in the olden days of schlepping dry ice.
Yesterday I went to my primary and instead of spending time talking about the reason I was there, the discussion focused on my hair as all of her colleagues piled in to witness the woman who isn't bald. Eventually I got my script and was out of there.
Oh, I forgot to mention... The nurse in my video is Nurse Ratched.
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Love the video WW! YOu look awesome and so happy for you that you are done!! When I got done, I finally gave myself permission to take it easy for a couple of weeks! You should do the same!!!
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WW - Congratulations! Your hair looks wonderful.
Re: aluminum in deodorants - My oncologist, who is well respected nationally, told me to avoid it as there is a suspicion that it may be one of the causes of breast cancer. I have been using one with the silly name of DeodoMom that I get on Amazon and it seems to work very well for me. I had tried several other brands, including Tom's, but found they did not do the job.
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Information about Dignicaps:
http://www.medgadget.com/2013/06/dignicap-to-help-...
Below is the government webpage with information about the Dignicap Trials:
http://clinicaltrials.gov/ct2/show/NCT01831024
There are two locations in New York City, one in San Francisco and one in Winston-Salem, NC. The cost of using the Dignicaps as part of the trial is nothing. It is hoping to enroll 110 people by September 2014.
United States, California San Francisco, California, United States, 94115 Contact: Hope S. Rugo, MD 415-353-7428 hrugo@medicine.ucsf.edu Principal Investigator: Hope S. Rugo, MD United States, New York New York, New York, United States, 10065 Contact: Tessa Cigler, MD 617-821-0726 tec9002@med.cornell.edu Principal Investigator: Tessa Cigler, MD New York, New York, United States, 10011 Contact: Margarita Gilyadova, MD 212-367-0181 mgilyado@chpnet.org Principal Investigator: Paula Klein, MD United States, North Carolina Winston-Salem, North Carolina, United States, 27157 Contact: Susan A. Melin, MD 336-716-2839 smelin@wakehealth.edu Principal Investigator: Susan A. Melin, MD Eligibility
Ages Eligible for Study: 18 Years and older Genders Eligible for Study: Female Accepts Healthy Volunteers: No Criteria
Inclusion Criteria:
- Female patients >/= 18 years of age
- Documented diagnosis of stage I or II breast cancer
- A planned course of chemotherapy in the adjuvant or neoadjuvant setting with curative intent including one of the following regimens:
- Doxorubicin 60 mg/m2 and cyclophosphamide 600 mg/m2 x 4 - 6 cycles IV every 2 - 3 weeks
- Docetaxel 75 mg/m2 and cyclophosphamide 600 mg/m2 x 4 - 6 cycles IV every 3 weeks
- Paclitaxel 80 mg/m2 weekly IV x at least 12 weeks with or without IV trastuzumab
- Paclitaxel 175 mg/m2 IV every 2 weeks x 4 - 6 cycles (without an anthracycline)
- Paclitaxel weekly and carboplatin AUC 2 weekly or AUC 6 every 3 weeks IV x 4 - 6 cycles and trastuzumab IV weekly or every 3 weeks
- Docetaxel 75 mg/m2 and carboplatin AUC 6 IV every 3 weeks x 4 - 6 cycles and trastuzumab IV weekly or every 3 weeks
- Targeted agents such as trastuzumab or lapatinib are allowed
- Plan to complete chemotherapy within 6 months
- At least two years out from the last chemotherapy causing hair loss with complete recovery of hair
- Karnofsky performance status >/= 80%
- Willing and able to sign informed consent for protocol treatment
- Willing to participate in study procedures including having photographs of the head before the first cycle of chemotherapy and 1 month after the last chemotherapy
- Willing to enroll in an extension protocol for follow up for 5 years following the end of chemotherapy treatment
Exclusion Criteria:
- Patients with female pattern baldness resembling picture I-3 or higher on the Savin scale
- Autoimmune disease affecting hair; e.g. alopecia areata, systemic lupus with associated hair loss
- A history of whole brain radiation
- Plans to use a chemotherapy regimen other than those specified in the inclusion criteria. Specifically, patients receiving a regimen including both an anthracycline and a taxane are not eligible for this trial (AC/T, EC/T, TAC, etc.)
- Concurrent hormone therapy with chemotherapy. Hormone therapy should be used as indicated following completion of chemotherapy
- Underlying clinically significant liver disease including active viral hepatitis with abnormal liver function tests >1.5 times the upper limit of normal, including alkaline phosphatase, AST, and total bilirubin. Patients with Gilbert´s disease (elevated indirect bilirubin only) will be eligible for participation.
- Clinically significant renal dysfunction defined as serum creatinine > upper limit of normal.
- A serious concurrent infection or medical illness which would jeopardize the ability of the patient to complete the planned therapy and follow-up
- A history of persistent grade 2 (or higher) alopecia induced by prior chemotherapeutic regimens
- Participation in any other clinical investigation or exposure to other investigational agents, drugs, device or procedure that may cause hair loss
- Intercurrent life-threatening malignancy
- A history of cold agglutinin disease or cryoglobulinemia.
- Evidence of untreated or poorly controlled hyper or hypothyroidism
- A history of silicon allergy
- American Society of Anesthesiologist Class ≥3
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Congrats WW!!! I missed the video you made-it was awesome! You should send it to all the media in your area.
Hortense-thanks for posting the info. on the trials in NY and SF. I tried to get info on the one taking place at UCLA but the links don't work. I left a voicemail and am waiting for a call back. Coincidentally I've helped 4 women who were patients of Dr. Hurvitz-the doctor in the news segment.
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WW, woo-hoo! I have so enjoyed following your journey and am amazed at how incredible your hair looks. Wow! Your spunk and sense of humor have made me kick my own ass in gear at times so Thank you!
And I have my own woo-hoo as well. I am home from last chemo laying in bed in cap. Two- three caps to go.... And I am done with this part of the journey. .... And did I mention I have hair.
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making way, I hope you get in. I think after all you have done for others it would be awesome to not have to go through the expense not to mention not having to change the caps. Not to mention, you would prob be the only participant with something to compare it to.
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Congrats, OneTexasDay!
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Texas - You did it! I remember the moment (not long ago) when I removed my last cap. My friends were jumping up and down but not as high as I was. Party on!
Hortense - I wonder when the day will come that the other chemo regimes can be managed to prevent hair loss.
MakingWay - I may recommend to my center that they promote the freezer they'll get to the local papers. Nobody around where I live knows anything about this. Had I not signed on to BC.org, I would not have known either.
Chemo is barbaric. Whatever happened to leaches and blood letting?
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Hi, I have never used a forum before so I hope I am doing this right! I am 42 and have stage 3 breast cancer. Does anyone know if the cold caps work when you have 6 rounds of chemo? I start chemo next week, 6 rounds of Taxotere and Cytoxan. I really really want to do cold caps but not if I will need a wig by the 5 and 6th rounds. HELP!!!
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3time - Hi. You posted correctly. The research I read indicates that the number of rounds of TC doesn't matter. I just completed 4 rounds and most of my shedding was early on. I doubt I'd shed more with more rounds. I have photos posted a few posts back. If I am correct, everyone on this thread who did TC had favorable results and did not need a wig. If you're starting next week please move quickly to make your arrangements. It may be your focus for the week to get your supplies organized.
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Thank you so much that is great to hear! Where did you find your information, I am struggling. Did you use penguin cold caps?
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making way - sorry the links didn't work. I am glad you called and hope you hear back. Dr Cigler in NY handled my chemo. The whole breast center at Weill Cornell in NY is so supportive of capping and thrilled to see women keep their hair.
3time - yes, the caps should work for your regimen. Quite a few on here have used them with it. I hope one or more will chime in soon. You may need a week to get organized which means putting off chemo a week, but that shouldn't be too bad. I did it.
I used Penguin Cold Caps as have most on here. They have to be rented. You can contact them here: https://penguincoldcaps.com
also go to:
www.rapunzelproject.org for more information
If you are in areas near NYC, San Francsisco or Winston Salem you might look into joining the clinical trial for Dignicaps - see info on page before this one.
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