Cold Caps Users Past and Present, to Save Hair
Comments
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I'm so nervous. 😡 am I crazay to just have my husnand
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My husband is my capping buddy and he is great even tho he is skeptical. I just explained how important this is to me and he gives it his all. He is calm and organized. You need someone who can be by your side and work with you for a full day each round. Once you sign up you will get emails with instructions you can read together, there's a how to video and you can practice together. I really like having my husband as my capping partner.
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my husband did my cold capping the whole time...he did great! The first few caps are a bit scary...but you'll be pros by the end of the first day.
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Thanks, pch! It does feel good to be on the other side and use the letters PFC. Now it's just figuring out when I can start going back to my normal hair routine. When can I go back to using warm water to wash my hair? When can I start washing more than twice a week? Any advice out there for PFC hair care? Thanks!
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Alibeths, there are two things I think are most important for cold cap success. The first is to make sure the caps are consistently cold enough. The second is to make sure the caps fit snugly to your head- especially the top of your head. You will get bald spots in places where the cap is not in contact with your scalp.
Make sure you practice fitting the caps and changing the caps before your first infusion.
I didn't ice my nails or change my part and had no issues with my nails or with frostbite.
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I used a thick strip of gauze along my part and the top of my head to prevent frost bite, it can get damp so it's best to also have a back up strip . I also brought along fresh slices of ginger to suck on when capping as it helped when the cold made me feel nauseous.
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i finally just opened them! They are all WHITE? I thought they r blue?
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And also, does anyone rec. a good video? We will be training the next 2 days!
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Look for penguin cold caps on YouTube or hopefully this link will work:
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OMG!! I am SO sorry i am taking over this board...i have a few questions! (again)
1-what type of cooler did you use to get the caps to the hospital?
2-while playing with these, i feel like the chin strap is choking me! Any tips? ANd did you put something there?
3-I feel like by my ears wasn't covered/tight enough....Is that normal or are we doing something wrong?
Mine are all white...Were all yours blue?
TTHANK YOU LADIES!!!!!!!!!!!!!!
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alibeths, please ask all the questions you can! I'm learning all this as you go through it too. Have my appt with my onc tomorrow so will bring up cold caps. Cross your fingers she's receptive to it!!!
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Alibeths,
1. I have 8 cold caps and I use two Igloo Ice Cube Maxcold Roller 70 Quart coolers.
2. We put a piece of suede leather under the chin strap.
3. To make the area by my ears tight, we apply the elastic straps that came with the caps on the area, very tightly.
My caps are white on the inside and blue on the outside
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Alibeths - My husband was the best cold capper. I was so glad to have him by my side and confident in his abilities. I retained 90-95% of my hair.
The coolers were Igloo Ice Cubes. We needed two, and they held the eight cold caps and dry ice perfectly.
You can loosen the chin strap a bit so it's not choking you, but it must be a snug fit.
Ears must be completely covered with no space between the cap and your ears. The cold cap should fit like a helmet and be snug on your head. The best video to watch is the one from the Penguin Cold Cap website (Google Penguin Cold Cap). It features the inventor talking while a nurse demonstrates. You may have to watch it more than once while practicing.
My cold caps were white on the inside and blue on the outside. If you have any other questions, please ask. Thanks.
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Hey ladies, does anyone have a direct link or easy access to the post listing articles and statistics about cold capping? My onc was less than amused or enthused when I brought it up but I still want to press the issue next week when i go back to see her. She said it's all hearsay and not proven to work. That it was popular in the 60s and can lead to metastasis of the scalp. I want to bring up this thread and mention that many of you are success stories, etc.
Thanks!
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StefLove, here is an article that discusses it in-depth and has links to a variety of studies, the best of which were probably those from the Netherlands. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC372064...
Here is the recent NYT article: http://well.blogs.nytimes.com/2015/03/09/keeping-y…
My oncologist was initially on the curious/slightly skeptical line and now believes. There is nothing to back up the scalp metastases fears in decades of use overseas and he had none of those fears even early on. (However if someone had a blood cancer, they'd obviously not want to cap.) Your onc should do some independent research, but the Netherlands studies are a good place to start. I was amazed that my rock star doc had never heard of it. People are skeptical about novel practices in the beginning, but I'd push on if I were you.
Best of luck!
pch
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Thank you, pch!!
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Oh and also, have her take a look at us! We're living proof
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Here are some helpful links to cold cap studies and other important information:
Cold Cap Studies:
Presentation, Impact and Prevention of Chemotherapy-induced Hair Loss
Wim PM Breed, Corina JG van den Hurk, Mijke Peerbooms
Expert Rev Dermatol. 2011;6(1):109-125.
http://www.medscape.com/viewarticle/737144Incidence of scalp metastases in breast cancer: a retrospective cohort study in women who were offered scalp cooling.
Lemieux J1, Amireault C, Provencher L, Maunsell E.
2009 Dec;118(3):547-52. doi: 10.1007/s10549-009-0342-0. Epub 2009 Feb 25.
http://www.ncbi.nlm.nih.gov/pubmed/19241158Eur J Cancer Care (Engl). 2005 Jul;14(3):223-31.
Hair loss with chemotherapy: at a loss over its management?
Randall J1, Ream E.
http://www.ncbi.nlm.nih.gov/pubmed/15952966Scalp cooling does not pose a risk for scalp metastases
http://ecancer.org/news/1632.phpScalp Hypothermia Minimizes Alopecia in Breast Cancer Patients Receiving Non-Anthracycline Adjuvant Chemotherapy.
Wills S, Ravipati A, Nguyen M, Dana Z, Jaiyesimi I, Margolis J, Decker D William Beaumont Hospital, Royal Oak, MI
http://www.abstracts2view.com/sabcs09/view.php?nu=SABCS09L_1975Effectiveness of the MSC cold cap system in the prevention of chemotherapy-induced alopecia.
Christodoulou C1, Klouvas G, Efstathiou E, Zervakis D, Papazachariou E, Plyta M, Skarlos DV.
Oncology. 2002;62(2):97-102.
http://www.ncbi.nlm.nih.gov/pubmed/11914593Breast cancer scalp metastasis as first metastatic site after scalp cooling: two cases of occurrence after 7- and 9-year follow-up.
Lemieux J1, Desbiens C, Hogue C.
2011 Jul;128(2):563-6. doi: 10.1007/s10549-011-1453-y. Epub 2011 Mar 24.
http://www.ncbi.nlm.nih.gov/pubmed/21431870
Other Important Studies & Information:ACOSOG Z0011: A randomized trial of axillary node
dissection in women with clinical T1-2 N0 M0 breast
cancer who have a positive sentinel node.Citation:Author(s): A. E. Giuliano,
J Clin Oncol 28:18s, 2010 (suppl; abstr CRA506)
http://meetinglibrary.asco.org/content/47842-74Pain after breast surgery: a survey of 282 women.
Wallace MS1, Wallace AM, Lee J, Dobke MK.
1996 Aug;66(2-3):195-205.
http://www.ncbi.nlm.nih.gov/pubmed/8880841Radiation Dose in X-Ray and CT Exams
http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_xray#5Environmental:
http://www.cosmeticsdatabase.com/
https://www.mountainroseherbs.com/
Breast Cancer Awareness Organizations:https://community.breastcancer.org/
http://bcaction.org/
http://www.breastcancerfund.org/http://www.breastcancerchoices.org/
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Alibeths - my cold cap rep said the new caps are white. I've used a couple over my last infusions and they appear to be the same. She also mentioned that there have been more complaints with them simply because they get dirtier easier being all white. I also do change my part each time. My normal side part seemed to thin from the one chemo that I didn't do this. Also, I don't wear the chin strap but that is simply because my cold cap rep doesn't want me to. She has me pull on the straps very firmly & hold while she adjusts and closes the cap. She starts at the front, then does the back and then returns to redo the front & top even tighter. Then she squeezes the cap all over to make sure there is contact everywhere. Then she has me release the straps. I'd say the more videos and practice you can do will help and make your hubby more confident in the process.
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Steflove - my oncologist at University of Penn was the one that suggested I try cold capping. I'm 5 weeks PFC and I still have lots of hair. They were definitely successful for me. I'm not sure of what drugs you will have but TC (which is what I had) worked. I lost approximately 25% of my hair but it's starting to fill in. Definitely check out pics on this site like PCH recommended, you'll be amazed. Best of luck tomorrow at your appointment. ♡Kim
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makingway, studies at the ready. you rock.
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I love this group! So many helpful, wonderful women always there for each other.
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Thanks pch! I recently sent this to a woman that I'm helping with the Elastogel caps. To date I've helped 41 woman with the Penguin caps, 3 with the Elastogel caps. Near as I can estimate, I've changed 2,280 caps-that's a lot of caps!
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Goldenpaw's oncologist was also my oncologist. I was her first patient to try cold caps and because of my success my oncologist now routinely recommends cold caps to her patients. I'm still trying to talk her into getting a freezer. Keep spreading the word ladies.....slowly but surely we're making believers out of skeptics in the medical community.
StefLove, a lot of us met with skepticism or outright resistance when discussing cold caps with oncologists. You may have to just tell her you have done your research and decided to use the caps rather than getting her permission. Some have also changed doctors. Was your oncologist actually practicing in the 60's?
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Can you guys help me! Can you post pics or tell me how far mole skin goes? Do I need to replace every time?Also did you cover ears? Thanks!!!!!!
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I let the moleskin go from my hairline to the top of my eyebrows, along the sides of my head and completely over my ears. Be sure to not let the adhesive touch your hair because it will pull some out. Unfortunately I learned that from experience the first time I cold capped. From this site I learned to leave a thin piece of the adhesive cover on the moleskin around the edge of your forehead and hairline. I replaced every time.
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you replaces every chemo? Or every cap?
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Every chemo Alibeths :-)
(Cap changes are FAST!) btw, my husband was also my capper and one unexpected great thing about that was that it gave him something to 'own'...he could do very little for me in terms of tx outcomes or SEs, but he could control this one thing. I think it was really helpful for him to feel like he was responsible for something. And he did great!! I finished chemo with 80% of my hair
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I don't cover the ears with anything except hair unless it is painful. If that's the case I use gauze folded over and taped with paper tape.
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I, too, don't cover my ears with anything other than my hair. And I use gauze or torn cotton balls on any "cold spots" around my hairline.
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https://m.youtube.com/watch?v=m87LHfAYf9E