Cold Caps Users Past and Present, to Save Hair
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This is the most comprehensive article I've found yet about cold caps/hair loss.
http://www.medscape.com/viewarticle/737144?src=rss
Here are a few others:
Scalp Hypothermia Minimizes Alopecia in Breast Cancer Patients Receiving Non-Anthracycline Adjuvant Chemotherapy.
http://www.abstracts2view.com/sabcs09/viewp.php?nu=p5040
Table Presentation for clinical trial above
http://www.abstracts2view.com/sabcs09/view.php?nu=SABCS09L_1975
Scalp metastases and scalp cooling for chemotherapy-induced alopecia prevention
http://annonc.oxfordjournals.org/content/17/2/350.1.full
Scalp cooling does not pose a risk for scalp metastases
http://ecancer.org/news/16320 -
Shipsgirl congrats on your success so far on ACT! I know it is harsh.
There was a great article recently in the Oncologist that I reviewed on the cold caps and none of the women had permanent hair loss (it is fairly rare anyway) - I will see if it is in Pubmed yet.
Have a great Monday everyone!0 -
Day 20! Had some more heavier shedding when I combed today. I am using a leave on spray in detangling conditioner, but I was only using when I washed. I used today to comb after I saw what was comming out with the tangles and knots I've been getting and it got much better!
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Quick update - tomorrow is chemo, freezer was broken over the weekend. Refrigeration expert fixed the freezer this morning and left. Clinic called me to say the freezer stopped working again. Expert can't be back today to fix so I'm arranging a delivery of dry ice for early in the morning on Tuesday. Gads - I just can't seem to cut a break on this freezer. But at least there's always the dry ice option.
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Remember caps need to be in dry ice cooler for 2_3 hours before chemo to get cold . i put the dry ice in zip lock bags to prevent freezer burns. Helpers will need gloves due to digging in cold cooler
and moving caps around.0 -
My very first bc.org post - but I have been reading a TON and what a great site
) Today is the day before my second infusion and have only had minimal sheading. I am so thankful to have found PCC before beginning treatment. Even though it is a LOT of work - I find it to be very worth it. I am a young professional and am still working throughout chemo; keeping my hair allows me to avoid questions I am just not ready discuss with EVERYONE. Thanks all just for being out there and sharing your experiences. There is so much value in knowing you are not alone.0 -
littlev welcome! glad you're having a good experience with the caps - thank you for sharing and giving us newer people hope.
tmb - seems like you're in the middle of your "big shed" - but things will probably taper off and stablize after that. i'm really concerned about tangles too. i got a blow out a couple of days before chemo to straighten it (even though the rules say not to use heat) - but i don't have a relaxer. so when i did my first post cap shampoo - poof... it was back to its normal curly natural state. we'll see how it goes with the next infusion i guess since i won't be using heat to straighten anymore.
amyq - you are a trooper. that freezer is refusing to cooperate but i see that you are determined. good luck with the next round!
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Thank you all for your help with articles and information. I will pass them on to my MO. I'll also include them in my letter to the centre administration.
Amyq, be sure to tell your dry ice supplier that it's for chemo. My supplier gives me a big discount and has been so helpful. (I took them a big plate of cookies last time to say thank you)
I'm nervous about switching to paclitaxel for the second half of my treatments. Oncologist visit is tomorrow and first T infusion is Thursday.
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My cold caps have started their journey back to Penguin, to give another woman the opportunity to save her hair.
All you ladies just starting or in the thick of it, I'm your biggest cheerleader. You will reach the end of chemo and you will have your hair! My worst shedding was the first wash after treatment #2 (out of 4); all other shedding has been annoying but not alarming.
Wishing you all health and hair! I'm so grateful to everyone who answered questions or alleviated anxieties on this board. It is the only online forum I have participated in and found it so positive and encouraging. Thank you!0 -
shipsgirl & SusieQ
Thank you for your advice and encouragement. Picked up two coolers and 8 caps from my rep. She's letting me borrow them since the freezer has been such a problem. I did tell the dry ice supplier it's for chemo and she was very helpful and offered a significant discount. I am so appreciative.
Congrats SusieQ - I hope you never need to use them again!!!
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SusieQ congrats on joining those of us who have been through it all and emerged with our hair! I keep coming to this thread as a cheerleader because i remember how hard and scary it was to be going through it during chemo and how helpful it was to hear from those who had gone before me. I hope you will still visit us as well.
LittleV - welcome! I used the caps for the same reason- I am a science professional and we could have lost grants or clients if anyone realized I was sick. No one has ever known what I went through except my "inner circle". The caps let us discuss it IF and when we want.
AmyQ you are a trooper! That stupid freezer will not get in your way! Good for you. I will be thinking about you during your chemo today. Good luck!
And shipsgirl good luck on Thursday. I had the paclitaxol and it was ok. Iced my nails as well as wearing the caps. One step at a time.
Tmb indeed you are right smack dab in the middle of the heaviest shedding period. I had some handfuls coming out then and really freaked, but had good coverage still remaining at the end. Hang in there if that happens and I sure hope your shedding stays at a minimum.
Kaydee I hear you- I had a lot of "bad hair days" and sometimes wore a loose silky scarf "headband" to keep my hair back and partially covered because it looked so icky without washing and styling - but still a bad hair day, to me, is better than a no hair day.
Hang in there ladies and GOOD LUCK to all.0 -
Thanks sciencegal. It seems to me my heaviest shedding when I comb is due to the tangles, so I am using a lot of the detangler. Lost about 1 handful today, but you would never be able to tell. And I am Day 21!!!
Chemo tomorow, but I am in a fairly good mood because of the CC success!
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OK- this is totally not my best look. I tried to get both my front an back in this picture using the bathroom mirror. I look decidedly odd but as yuu can see- I have hair. It's not my normal fabulous straightened hair- but I solute it!
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And by the way- this is more the way it usually looks!
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Thanks Sciencegal. My MO insists that I don't need to ice my nails with paclitaxel. She says with only 4 infusions, I should be okay. I got L-Glutamin and B12 to take. My MO doesn't like supplements but doesn't object as long as I don't take them the day before, of, and after infusion.
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thanks sciencegal for coming back and checking in. your experience is so helpful as we all try to navigate this process.
tmb - day21 yay! so glad you're seeing good results... hoping to be in the same boat soon. sending good vibes and hopes for a smooth infusion tomorrow.
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Just want to recommend Arctic Ice Cream to any central/south Jersey cappers. They are wonderful and they gave me a discount!!
They have dry ice pellets and you don't need to call ahead- they can easily handle 80 lb.
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Hello Ladies,
I just received my cold caps in the mail a few hours ago. My mom is set to start chemo tomorrow. We re-scheduled her appointment to get the cold caps. I'm terrified that I won't do everything right and she will lose her hair because of it.
Can someone walk me through the process? She has to have Taxotere and Cytoxan. She is set for labs at 7 am and according to the appointment schedule, she will start chemo at 9:30 - but we're dealing with Parkland, a county hospital, so it can be whenever they decide.
I'm worried about timing it correctly. When should we start putting them on? We're using dry ice because we do not have access to a freezer.
I'm just terrified of this whole experience for my mom. Any advice/comfort? I'm so upset she even has to go through this - yet I see how many strong ladies are in here and it gives me hope for her.
Thanks in advance (:
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tmb, you look fabulous! I love seeing pics. CONGRATS on making it to day 21! What a great milestone! I hear you on not looking like ourselves. I feel it too, but I'm sure that we notice more than anyone else. I've had to graduate to a ColorMark "magic marker tip" from the wand due to my gray roots that keep on coming in. Amazing...
kaydee, best wishes for a smooth treatment tomorrow and all that hair saying put!
I get a strange joy when the radiation nurses say "you had chemo? But you have hair?". It has happened two out of two times now. The puzzling looks are actually fun in an odd way....0 -
Chelsea I just saw your note. I just finished TC last week. My appts were usually around 9 or 9:30 and we would put the caps on dry ice around 2.5 hours prior to that. (my ice was delivered to my house the day before) My labs were always 30 minutes before my "start" time. The "start" time was for pre-meds with the real deal following those pre-meds. Feel free to send me a PM - I'm happy to talk you through it as it is very fresh in my mind.
My clinic did labs, then vitals, then meet with doctor, then infusion.
Startng with the second treatment, I would put on my first cap after they took my vitals. My husband would take it out of the cooler to warm when the nurse called my name. Twice I had a cap on while meeting with the doctor. By the time I met with the doctor and got my pre meds, it had been the required 50 minute pre cooling before the actual chemo started. I suppose all places are different in how they do things so this method may not work for all ...0 -
There numerous videos demonstrating the application, removal and care. But check out this link http://penguincoldcaps.com/how-it-works/user-guides/ for a step-by-step guide.
My local cold cap rep said to put the caps on 50 minutes before the actual chemo begins and continue throughout the infusions and for 4 hours afterwards, changing every 25 minutes. My son or husband come with me and are a huge help as it definitely cannot be done without a helper. Good luck and I guess the biggest key is keeping the caps in contact with the scalp so periodically pushing on them to make sure your mom feels the cold. The first 5 minutes are difficult as she may experience a headache but it goes away. Have her take a pain reliever about 20 minutes before application - check with her onc for what works best and will not interfere with the chemo drugs. Good luck - I will be thinking about you both
Amy
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tmb - you look beautiful!!!!! yay for pcc's!!!!
xo
curly0 -
ChelseaAshley, great advice above from AmyQ and SusieQ. One additional suggestion: make sure you PRACTICE with the caps tonight. Chill them in your home freezer, although they will be much colder tomorrow on dry ice. They will be hard to work with when frozen to the correct temperature. Hopefully you have received instructions along with the caps, and you have all the necessary equipment including the thermometer, moleskin, gloves, etc. When putting on a new cap, I pulled down on the chin straps (rather than fastening them) to help keep the cap in place as the velcro was being fastened. I had two helpers, one doing the front and the other doing the back. Some have mentioned fastening the velcro loosely before putting the new cap on the head, in order to keep from getting hair stuck in the velcro. Then you tighten up the velcro. It's important to keep the time to a minimum when changing caps, especially during the actual chemo infusion.
Most of us had a hiccup now and then, and we all started out as amateurs, but we still kept our hair. So don't get too upset if something doesn't go exactly as planned. Good luck to you and your mom!
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Chelsea, sebm9 has an extensive write up that she will email. Just send her a PM with your email address.
My older daughter who lives away, discovered cold caps, and my younger was my helper. What a blessing these daughters are. Your Mom is fortunate to have you, as I was to have my wonderful girls.
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I just heard methodist hospital in Houston is one of two pilot studies to use the new cold cap that has cold water flowing through so you do not change caps free to any patient wanting to use it!!!!!
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I hope this becomes the norm as it would relieve a lot of the stresses changing the caps, freezers that don't work and finding dry ice to chill the caps. Too late for me but I'm happy it's being tested.
For my quick update with my cursed cold caps and the on again off again freezer. I made arrangements for dry ice to be delivered to the clinic early this morning. When I got to the clinic for my infusion the broken freezer was fixed again and apparently in enough time to provide cold caps at their proper temp. Bottom line I got through all 6 hours of treatment and cold cap wearing without any difficulties.
Btw my rep let me borrow 8 of her chilled caps and two coolers. I put her cc in my home freezer overnight and then hauled them to the clinic waiting for the dry ice to keep them chilled and as it turns out I didn't need to use them but I was grateful to her for giving me a plan B.
So you can see why the cooling system being tested at Methodis sounds like the answer to my prayers - of course as long as it doesn't break!
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Chelsea - please be sure you mother ices her fingernails and toe nails during her taxotere drip to avoid any damage to them. All you need are ziplock bags and crushed ice. Not very hi-tec. Fingers get dipped into the ice, closed bags go over her toes. I also put bags under my feet to ward off neuropathy
If you have an electric blanket, be sure to warm it a bit beforehand so that your Mom can wrap up in it when it's already warm.
My experienced cold cap nurse had me take one Tylenol and one Advil 20 minutes before putting on my first cold cap. The first five minutes are the hardest, after that the scalp goes numb.
Best of luck to your mother!
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Chelsea good luck to your mom!!! That is a wonderful thing you are doing for her. You are a great daughter. I have a greatfulness to my friends who helped me do the capping, that I could never repay! Good luck today.
And good luck to all!!!
Amy, glad you got through okay- what a lot of added stress but yay in the end.
I agree the chilled systems would be really excellent. I think that centers which offer those would get a lot more infusion business.
TMB you look great- congrats!!0 -
schoolmom-Please follow the progress of user's of this machine if you can. I don't think the machine has good success. But, the concept is wonderful. Water freezes at 0.0° Celsius. From what I've read this is not cold enough to cause vasoconstriction thus preventing hair loss.
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Dr. Chang is the oncologist heading up this pilot program. A friend had her chemo there and was telling me about it.
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