Cold Caps Users Past and Present, to Save Hair
Comments
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Hi, I'm a newbie from Brighton, UK. I am currently on 6x FEC75 and had my 4th treatment yesterday. I have been using the Paxman cold cap and for the first 2 treatments I found it to be awful for 10 minutes but then tolerable. I lost quite a lot of hair just after the 2nd one and since then I have been losing much less. I would guess I have lost 30% volume evenly with no bald spots as yet. The 3rd one I found more painful and distressing so I was dreading my 4th chemo yesterday. I was very distressed and felt nauseous the whole way through and felt traumatised and was sobbing on and off for the rest of the day as I have been today. I had 0.5mg Lorazepam just before and took ibuprofen/paracetamol. I have seen references to taking benedryl so was wondering how this helps and any other advice you ladies can offer to make chemo/cold cap day more tolerable as I am feeling so upset about it at the moment. I would, however, like to add that I would go through it again as baldness would be more distressing, so don't want to deter anyone from doing it, it's just not all plain-sailing, that's all! many thanks, Vanessa
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Foxybrighton: while I have only had one session with the caps, I took a klonopin before hand, I think similar to lorazepam, which i think is xanax. I found xanax made me emotional, klonopin merely takes the edge off. Similar drug, different feeling.
I also took a vidicon left over from surgery to help tolerate the coldness of the first few caps. Maybe a stronger pain med would help.
I don't know if you are taking steroids or not, but they had me in an emotional state. Once they are out of my system, I feel much better, which is today. I was a wreak with them, perhaps this is why you are feeling this way.
Hang in there. Sounds like you're doing great. Since I've only gone through my first treatment 2 days ago, I'm on pins and needles waiting to see if the caps are going to work. I'll know in a few weeks.
I also took a thermos of tea to make me feel a little normal, next time I plan on taking chicken soup.0 -
DebRox - i'm just a bit ahead of you ... and i have 16 weeks of chemo in total. i'll be done aug 2nd. I found my hair changed right away. YOu'll find by the next wash it won't be greasy at all. I wash once a week. And, like Maria and others have said, you'll dread those wash days! I only used conditioner at the very ends of my hair - just to help with tangles. If i went any higher, it made it too limp and oily. Hope that helps.
Susan - a big WOO HOO from Canada. Congrats on that mammo. We're all going to be just fine. I know it.
Maria - the extensions you bought ... were they wide strips that go across your head? or smaller piece that you can put 'here and there'?
Congrats Arlene on the shorter treatment. Lucky lady!
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Livcar: The extensions had several different sizes. Some went accross the back and had 3 clips in them and are about 7-8 inches long. Some were shorter - with two clips. Some were even smaller. I usually just wear the one longer one accross the back. It had 6 sets of extensions total in the package. They were 18 inches long so I had to cut them myself. There were less expensive ones but those did not look real to me. These are real human hair and match my hair color perfect. No one can tell I have them in when I wear them.
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Hi Everyone:
My sister in-law just called me to say she was watching a program on CBS and during a commercial break they said that tomorrow(Friday) on the 5 o'clock news program(in New York) there will be a segment called "Capping Cancer" and it will be all about cold caps. Try to find out if it will air in your local area. I will surely watch it.
We need all the publicity we can get!!
Keep Positive!!
Nancy
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Hi LivCar,
I have a writeup I send new users -- either those on this list and/or folks who are referred to me from Frank. The writeup is a PCC writeup as that's what I used. It contains lots of these tips but not coloring info (since I don't do that).
If anybody wants this, send me your email (it's too long to send in a PM).
Susan
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HI Susan - thanks, I think that will be really helpful for newbies!
Does anyone have a write-up on how to get this paid by insurance?
Annie
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In regard to insurance...I'm not having much luck on the phone with my BCBS plan. But they said I could submit the claim anyway. I did find the "CPT" medical treatment code for cranial prosthesis. It is: D5924. I will mail in the prescription, receipt, and some info on PCCs with a letter and see what happens.
They do pay for bras, by the way! I'm to turn in those receipts with a claim form and it goes toward fulfilling my deductible. And no limit on how many bras. Also, I've heard that Nordstroms will submit the claim for you.0 -
howard-
I wonder if Frank would consider submitting to our insurance companies for the caps, as Nordstrom does for the bras?? Thanks for the code! I was told by BCBS that they did not have any provisions for anything to do with hair or hair loss or hair replacement. I wonder if I should try again.
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Hi all you new Cold Cap users:
Here are a few tips I found worked best for me with the cold caps.
First, I used "Ear Pops" to cover my ears, they are ear muffs without the band across the top. Google "Ear Pops" and you will see what they are. They will mail them to you in about 2 days, and they cost about $9.00 with shipping. They work great!
Instead of chamoise cloth under chin, I used this tape from the center that stretches and sticks to itself. It is tan, but I don't recall the name. I put it around my neck and under my chin and stuck it to itself, therefore no need to hold it while we put the caps on and fastened the chin strap. It also worked great. They gave it to me at the chemo center. They use it on you after they sick you for blood tests or infusions to hold the gauze tight over your puncture wound to stop the bleeding and prevent black and blues.
I used CVS panty liners on my forehead, they were a bit thicker than the moleskin and also seemed to work better for me. You could probably also use them under your chin. Try different things and see what works best for you.
All in all you will do fine, and the caps will work--you will save your hair!!
Best of Luck to all of you!!
Keep Positive!!--Really it makes a difference!!
Nancy
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Hi all~
BCBS told me that they "thought" they would cover up to $500. I am waiting as they asked me to have Frank send a "more detailed" statement. They wanted the dates, the number of caps used per day and the dollar amount.
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Hey Susan - not sure if you sent me your list already - but i'd love to see - just in case. Send to pbmady@cogeco.ca0
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Ugh ... tomorrow is wash day. Shedding is constant. Anyone have any creative ways to keep the hair off my floor, food, clothes ... ??? Can i clip it up safely?
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LivCar: The dreaded wash day...mine is today and I've been putting it off. BUT, hubby and I noticed that I have new fuzzy hair coming in where the caps didn't quite work. I have one more treatment (I hope) so may lose it again but nice to feel the little fuzzies. Oh, just noticed little fuzzies along the base of my neck too. Yeah!
Arlene
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Darn....I wish I would have logged on earlier today and seen Nancy's post about the Capping Cancer story as I am in that. I found out that it aired today when I got a text message from a friend who saw me on TV. I'm taping the 11pm news just in case in airs again. My friend said it was a good story so that's the most important thing. Maybe someone at the station can send me a copy.
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Drim:Try to go online to CBS news.com and see if you can pull up the story there. I'm going to try that now.
Nancy
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For folks making claims with insurance: many plans do cover some amount of cranial prosthesis (wigs, for most) and this should qualify. If they deny your claim, the general rule -- and this is true of all insurance claims, for any types of services or treatments which are initially denied -- is to appeal at least 3 times. The insurance industry pretty much counts on people being discouraged and giving up when, in fact, patients should be reimbursed for these legitimate expenses which are covered by the insurance plan. It's just another way they stick it to us in order to make *extremely* large profits.
This probably sounds cynical, but I write from inside the system.
I'm sorry folks dread their hairwash days! I was always so happy to have my hair nice and clean. The wash was cold and gentle ,but otherwise I used Trader Joe's nourish spa (hydrating organic) shampoo and conditioner (to detangle and soften) and had great results. I tried to plan any big social outtings around the hairwash and post-hairwash days (as in, I always timed my hairwash after a big long hike in the hills and the day before a luncheon, or something like that). The other day the hot water was out at the gym (again) and I swear I had flashbacks taking a cold water shower! But, the mind is an incredibly residual thing, and I knew why I was over-reacting. And, of course, the cold water was actually good for my skin and hair.
You can clip it, hairband it, or even use a hairnet type thing (lets the scalp breathe, doesn't overheat, but keeps the stragglers from straggling all over the house). I didn't use one, but the idea just came to me.
ArleneA: yep, you've got hair regrowth already! DURING chemo! And just you wait, it'll come in fast! You are getting there, hang in! You're doing great.
I hope everybody has a great holiday weekend!
Susan
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Hi Again:
I could not find anything on CBS news site. Found the story on ABC and saw Dita in the ABC story. I don't know if it was CBS or ABC, I missed the news report at 5 o'clock, I was coming home from Radiation simulation and missed it. The Abc story was pretty good.
Nancy
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Quick question. I am 5 days post first chemo. Today my scalp feels itchy, tingly and crawly. Is this normal? I'm nervous about the days coming up, especially days 18-21 to see what happens.
I did wash yesterday, but the new organic shampoo I'm using did not do a very good job of cleaning my hair and scalp. I did not use conditioner on my scalp.
Maybe the oily build up is causing the itchiness. Any thoughts?0 -
Quick question. I am 5 days post first chemo. Today my scalp feels itchy, tingly and crawly. Is this normal? I'm nervous about the days coming up, especially days 18-21 to see what happens.
I did wash yesterday, but the new organic shampoo I'm using did not do a very good job of cleaning my hair and scalp. I did not use conditioner on my scalp.
Maybe the oily build up is causing the itchiness. Any thoughts?0 -
debrox-
My scalp tingled, itched, felt crawly.....did not lose my hair...hang in there....0 -
I had the itchies too. Sometimes, it felt like a little bug was crawling on me. It went away. I'm 4 days post treatment #3, and still have hair!
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If I have to do chemo again, I might look into this. I didn't really mind losing it once but I do mind losing it the second time around. If you are on permanent chemo, does it work for that too?
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Dear Geewhiz and others, Thank you for sharing and saying supportive messages! I have been reading this site for the last hour and it is so interesting. I am in San Francisco and helping my sister with the chemo process and the Penquin Cold Caps (PCC). The first round of AC chemo went pretty well, using the caps. I have 2 questions. We are at UCSF and they have the official Penquin freezer. After the treatment, we are supposed to take the caps home. How are people storing the caps (between treatments)? The literature does not say much about storing the caps. I think the PCC company's 'preferred way' is in Zip locks in the freezer, but that takes up a lot of freezer space. My other question is how long do we do the caps after the chemo infusion. Some places say (change the cap every 30 minutes) for 4 hours, and also read for 2 hours. What is best, 2 hours or 4 hours? It was hard for my sister to do the full 4 hours post infusion (so cold). Have a good 3 day weekend everyone. Thank you ;-)0
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ColdCapsUserSF: The caps should be stored in a regular home freezer between infusions; they can be placed in ziplocs to save space. When they are in the hospital freezer or in dry ice, they should be in the keep boxes. (I had an apartment-size fridge, and had to get rid of all frozen food so I could store the caps in there.)(It was worth it.)
Four hours post-infusion would be my recommendation (especially with AC, which is damn hard on the body and the hair.) Yes, after the first two caps (at 20 minutes each), the third cap goes on. Exactly ten minutes into the third cap is when the chemo portion of the infusion starts. The caps should be worn 4 hours after the chemo infusion ends.
My chemo infusion (TC) lasted about 3 hours. In addition 4 hours post-chemo (plus the two 20-minute caps in premeds), I had caps on my head for about 8 hours. It was absolutely worth it! The PCCs get cold enough that there is a "freeze" at the start of each cap, but then your nerves are numb from the cold and you just have a general sensation of cold. Some of the other scalp cooling systems don't seem to get as cold as the PCCs, and one of the effects seems to be more discomfort -- because the nerve endings aren't frozen (and don't stay frozen) as long and hard as with PCCs. Are you part of the clinical study at UCSF?
Thank you for helping your sister! The Penguin Helpers are rock stars in all this!
Susan
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Hey CoolBreeze~
I just spoke with my breast surgeon and she said that she would not be surprised if women in the future were given the choice to do Cold Caps with their chemo or not.
It would be really cool if everyone had that choice.
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Dear Susan (sebm9), THANK YOU so much for your prompt and detailed response to my questions about the cold caps. I had the caps in the Penquin freezer, and then on dry ice...but I'll get the zip-lock 'normal freezer plan' going tomorrow. I appreciate the 'pat on the back' for being a cold cap helper :-) Yes, my sister is a part of the cold cap study at UCSF. This is the Day 3 (post first treatment) for her, and she is still quite nauseated (even with the 3 medications to prevent nausea). Thank you for your support.
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ColdcapsuserSF - I'm on AC too ... and i have an 8 hour PCC day. Good luck to your sister. The nausea is tough.it'll get better in a few days.
Anyone know when the shedding slows down? 5 days after 3 treatment. Can't wear my hair down, it just falls and falls ....
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Hello ColdCap User,
You store the caps in between treatments in your home freezer. They must stay cold or wil get damaged. If you do not have room in your freezer for the container's than you can put them in freezer bags and store them in your freezer. then before your next treatment put them back in their container's. they must be in thier container's before putting them on dry ice or in the special penguin freezer.
Your scheduel will tell you how long to wear the caps afterwards. For most people it is 4 hours after. That is very important for your success.
All Then Best, Geralyn
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Thank you gmp300 and LivCar. I have all the caps in the home freezer in ZIp Locks. I will place them in the containers before the hospital pre-freeze, 24 hours before the next chemo day. My sister is feeling better today, less nausea, thank goodness. LivCar, sorry to hear about the shedding, hope you have a good holiday day.
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