Cold Caps Users Past and Present, to Save Hair
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The cost of eighty pounds of dry ice was $76.
I just put on a before picture of myself and it was so easy. I still can't figure out how to post a photo on this part.
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bdavis
of course a doctor is going to tell you that if you use the cold caps you are denying chemo to the scalp, it's their job so you won't sue him later if something happened. My Oncologist told me that, but then said, the odds of scalp cancer are very very slim. He was not a believer in the caps based on studies from the past. He told me if I wanted to do it, he wouldn't stop me. I have now made him a believer because I went 6 rounds and have my hair! It's your decision of what to do. But, I was doing chemo as a preventative measure according to docs, so I felt I'd take my chances of denying it to my scalp. The thought of no hair for months and then it growing back for a year or even two gave me the courage to do the caps and I'm very happy I did.
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Sashette
Frank frowns on putting the caps in ziploc bags, it can damage the caps against the dry ice. I kept mine in the bins and had no problems. I purchased the dry ice the day before around 4:30pm keeping it all in one cooler. Then the morning of before getting in the shower, I transferred ice into 2nd cooler and placed caps in them. That gave them about 2 - 2.5 hours in the coolers before starting. I used pellets, not slabs. If you use slabs, break them up as much as you can so they surround the caps in the bins. All sides. Get a scoop to use to move the broken up ice around and where gloves. I used gardening gloves that were suggested by the dry ice place. And, yes, the caps on the bottom get the coldest. You'll need to move them around throughout the day to make sure the used ones get cold again.
As for numbering, I used painters tape, marked the tape with numbers and placed inside the lid of the bins.
Hope that helps!
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oh and for dry ice, I think I paid $1.60 a pound? Something close to that.
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bdavis: There is a greater risk of you developing leukemia from taking chemo, than from developing scalp mets due to cold caps. Chemo is absolutely getting through to your head and brain, it is not killing all of your hair follicles however. It targets fast-growing cells such as cancer (and fingernails, toenails, mouth tissues -- for which ice has long been used without worries about finger, toe, or mouth cancer). I researched this thoroughly before beginning. Ask your oncologist if, given the risk of developing leukemia in the long run, s/he would recommend you not do chemo?
That is the question I posed to my oncologist and she agreed with me. She was dubious that the caps would work, but now she's seen and has been converted.
The fact that the caps are now in clinical trial definitely helps convince some docs also.
Good luck! Let us know if you need more ammo!
Best,
Susan
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bdavis-I was wondering what exactly does, 'not the answer' mean...
Could you ask your doctor to show you studies that scalp metastasis is 'increased' if one uses cold caps? I believe your doctor is making an unfounded assumption. There is information about this on the Penguin Cold Cap website: http://www.msc-worldwide.com/scalpmets.html
We each have to make our own choices. I've seen too many women put ALL their confidence in their doctors, assuming they know more than they actually do. Do what feels right for you. Don't let fear dictate your choices, and by all means, 'Question Authority'.
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Ditto the words of Susan, Makingway, Michcon, Ang7 and Julia1969!!
I pay about $80.00 for 100# of dry ice -- mixture of slabs and pellets.
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I am doing the cold caps and although my hair has thinned I have coverage and one small bald spot that is easily hidden. My hair is still growing as indicated by my white roots so I still wear a scarf as my hair is very ugly but it is still there and I am done with my 4 rounds of A/C. My oncologist is ok with the caps, I am his first patient to use these and he thinks it is a success.
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BTW the research I have seen in a group of over 5000 women with BrCa ther were no incidences of scalp mets, I beleive the date is on the penguin cold cap website.
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Ang7... I don't know the other patient's situations and whether they were presented with options, or how advanced their cancer was or even when they had chemo... but even one case of no regrowth gives me pause... But not too into the stats on Taxol and neurapathy and long term effects. My husband said as a man, the decision would be easy (go with no hair), but that's just it, he's a man, and I am a 47 year old with great hair, and I'd like to keep it that way, at least at some point in the future... I can deal with temporary baldness, its the forever part I struggle with, especially since this is preventative chemo... for all I know I am cured as I write this... I am glad your doc was into the idea of cold caps... mine wouldn't say no to me, just suggested against it.
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Dear All,
I mentioned some time ago that the Washington Post was planning a story on cold caps and chemo. The story will appear in the Washington Post's health section tomorrow (Tuesday, Jan 10), but it is on-line now. My husband and I had seen the written story in advance (it was written by a friend of ours) but hadn't seen the video. We think both the written story and video are excellent. See what you think and please spread the word.
Here's the link:
http://www.washingtonpost.com/wp-dyn/content/article/2011/01/10/AR2011011006036.html
Warm wishes to you all!
Katherine
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Sashette: $1.79/lb seems really high for dry ice--we paid about $40 for 80 lbs of pellets at Airgas (an industrial welding supply place). We're in a small town rather than a big city but still...I'd go in person and tell them what you need it for and that you'll be buying it regularly, and maybe you can catch a break. We called a week before each treatment and asked for the pellets (nuggets) and they would order it special for us. Or look for another supplier. I know in our town two of the grocery stores carry the slabs; I never checked on the price there but assumed it would be higher. Good luck!
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Joykk
That is a great article. Very encouraging. I am so pleased to read it. I send the article out to my helpers. I like the video where it shows husband kneading with his elbow. Well done.
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We paid 55 cents a pound in Marietta Ga. As to the caps and the ziploc bags, what if we wrapped the dry ice in towels and left it in the paper wrap it comes in (2" thick blocks) then it would not touch the caps? Our first dry run we got 100lb - 60 in blocks and 40 in pellets. Three days later we stil lhad ice even though we leaft the coolers outside and the tops open. I even dumped it on the driveway to get rid of it and this was before our Winter snow and ice storm here in the Atlanta North area.
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What dose of cleratin and how often are people taking it for the nuelasta se? They are giving me the neulesta day of chemo. Caps will arrive today and chemo starts Thursday.
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Hello everyone -
I just did my first round of TCH and Cold Caps yesterday. I had a problem with the eyebrow wrap on the first cap - too low and my eyeballs were literally frozen. i was crying, then finally pulled it off and did not do it for the next couple of caps. I did manage to get the eyebrow on later (and much higher on my forehead). The day was Long and i have to say that I was kind of out of it....it was a matter of watching the clock, getting in and out of the chair for the cap exchange, then trying to warm back up. Luckily I had purchased an electric blanket (thanks Marjorie!!!) which saved my.
I know people said they played games and had a party. This was no party. However, I did manage to get through it and know that I can get through the next five. I just expected to be more active/fun. Oh well, I can save that for when this is all over.
When I got home I was sick with diarhhea all night (TMI!!!) and my temp was 96.4 I was cold! I took a bath and went to bed, got up for dinner, then went to bed. i thought I was going to have a steroid high and lots of activity. No luck.
Any thoughts or advice anyone? Is this normal? When does the shedding really begin? I felt like there was so much pulling and yanking on my hair all day...I was surprised there was not a pile of hair on my new silk pillow today?!!!
Thanks everyone, this really is an adventure. I found out that I am lucky #13 in Minnesota. Any idea how many others are out there in the US? Any early, early, pioneers to honor?
Annie
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Sashette: I took Claritin every morning for a week starting the day of my Neulasta shot (day after chemo). The type was one daily 24 hour pill. This seemed to really help w/ the bone pain for me (I know because the first round I had the Neulasta w/o the Claritin). Check with your doctor first though on any extra things you take. Good luck.
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Katherine~
Just saw the article in the Washington Post...
Way to go!!! What a great way to get the word out and I loved how it was written...
"chemo on the rocks" and "it is not about the hair - it is about having control in your life."
Thanks.
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Hi all,
Wecome to all you new people like me, on this course. My first treatment went okay, I haven't had any side effects to speak of yet, just a bit of constipation. No reaction to the neulasta shot yesterday, but I took a Claritan 24 hour pill right afterwards. I will do the same today. How long should I take them? How many days? I'm trying to stay hydrated, but it is hard, if you want to go out and move around. I was very tired yesterday, but I think it was because the Decadron kept me awake for days, got only 3-4 hrs. sleep a night. and have been trying to be active. I go for a walk every day. My experience with the caps has been difficult, because I don't know if the first day worked or not because the freezer at the hospital was not working properly. Frank never really gave me very specific instructions on how to do the caps, just to change every 30 min. Others seem to have had very specific instructions on how long to leave first 2-3 caps on, etc. I am using caps at home EVERY night for 2 hours changing every 30 min. I will continue until my next treaatment on Jan 27th. The caps are about -7 to -12 celcius directly from my home freezer.
I don't know if this will help or not, but if the first round worked it will, if it didn't work, I guess I'll soon find out. I haven't shed any hair yet. I keep hoping it worked.
Keep positive!!
Nancy
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Katherine~ Loved the article and video -- it was awesome. This is how I feel ... a few uncomfortable days of cold to delete one side effect is so worth it. Thanks for sharing this!
Anniemomofthree~ Think people are different when they would lose their hair without PCCs but majority of people with the TC and TCH regimines lose around Day 14-16 after first treatment. So for me this was what I was waiting for... then as Frank Fronda has said... if you make it to your second treatment (Day 21) you know the caps are working for you. I too was so exhausted after my first treatment I went to bed at 7pm and slept thorugh the night... mixture of stress, adrenaline, long day, etc... the steroids were over-powered that day!! But the second Tx was totally different... steroids won and up for three days basically. However, keep saying small discomforts today mean the quicker I can get back to my normal (and of course my exchange surgery!!)
I still can't believe how many of us Penguinistas there are now... what a family! And I too would be happy to wear a charm! Lisa
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anniemotherofthree,
Congrats on getting through your first day! Hang in there. It will get better. For me the most difficult days were days 3-5 post chemo when I had increased fatigue then bounced back after that. The shedding does not really begin until days 14-19 after your first treatment. If you can get through that successful then you know that it has worked for you. I am day 37 now and have all my hair with only very minimal shedding. I have had 2 out of 4 sessions of TC and will doing session 3 next Mon
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Thanks MJE - I just took a compazine and things are looking much brighter, no nausea. I really appreciate the sharing of experiences. Congrats on doing #3 of 4. You are so close to being done!!!
I think I will get more nervous around the 17 day mark for the hair.
Question - when do I wash it? How many times per week? What is the thought on washing and conditioning? Are we trying to minimize hair handling? Or are we trying to minimize products that my stress the follicles?
Annie
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anniemotherofthree,
I was nervous around days 18 and 19. Stay positive. You will see that is working for you and it is successful. I had no nausea at all as I used Emend and it was wonderful What chemo regimen are you doing?
In terms of hair washing I wash it once every 5 days except for chemo weeks when I wash it 2 days prior to chemo then not until 5 days after so that ends up being every 7 days on those weeks. Definitely minimimze hair handling and hair manipulation as best as you can as it does make a difference in terms of not traumatizing the follicles
Julie
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In case any of you are interested:
one of University of Pennsylvania's Business School, Wharton’s top professors is featured in the Washington Post for a story/video about her “cold caps” treatment to avert hair loss during breast cancer chemotherapy
http://www.washingtonpost.com/wp-dyn/content/article/2011/01/10/AR2011011006036.html?hpid=topnews
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Katherine!! fabulas article!! i loved it and i love the chemotherapy on the rocks! perfect!!!
annie! glad you got through #1 hang in there it will all go by quickly and you will be done in time for spring! hope you are feeling well wish you calm nervous for the next few weeks in hair anticipation you are going to be fine!
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Well, Hello again,
to Annie mother of three
Good for you you got thru 1, you'll get thru all. I only used the eyebrow thing at home, forgot about it at treatment day. I think I'm going to order generic latisse and try it for brows and lashes.
I still didn't hear from Frank and am kinda of upset. He hasn't told me when to expect to see if it worked or not.
If everyone is on board, I am going to try to find out about the penquin charms.
Time to do my caps again, good night all and good luck to everyone!!!
Keep positive!
Nancy
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Hello Penguin Cold Cap past, present and future user's.
I have dropped by this blog to review comments. I am so pleased to see all of the interest on this blog and how many success stories there are.
I have spoken to Frank Fronda and he would like everyone to be reminded that the instructions that you receive from MSC are to be followed precisely.
As Frank appreciates this blog, he certainly wants everyone to be aware of the following;
1.) The Penguin Cold Caps MUST be stored in a home freezer in their Penguin Cold Cap container's at all times when not being used on a chemo day. However, ONLY if home freezer space is an issue, you can place the caps in ZIP LOCK FREEZER BAGs and store them in the freezer.
2.) No FISH can be stored in the freezer with the Penguin Cold Caps.
3.) Under no circumstances should the Penguin Cold Caps, in Zip Lock Freezer Bags, be placed with dry ice in the coolers. This will cause irreparable damage. The Caps must be placed in their plastic containers in the cooler with dry ice on chemo days.
4.) Under no circumstances should the Penguin Cold Caps be in a cooler with dry ice for more than 2 & 1/2 hours before the first cap is used. Caps MUST NOT be frozen with dry ice overnight.
5.) If you follow MSC's instructions, elbows should not be necessary and MUST NOT be used for kneading the Penguin Cold Caps.
6.) It is normal during chemotherapy for many, with or without Cold Cap therapy, to wear warm clothing and cover up with a blanket. This is because the chemotherapy is being infused much colder than body temperature. The Penguin Cold Caps are on top of the head where most of the bodies heat is emitted. The caps temperature does not continue at sub zero temperatures due to the heat from the head.
We do hope this information is a clarification to all users.
Joyce
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Wow Joyce,
It might be helpful if you could sign on from time to time and answer some of the questions that the new ladies have that we are not able to answer. I know they get frustrated when they cannot get a hold of Frank...
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Hello again,
I finally heard from Frank and he said not to do the caps every day, at home, just 3X a week. He also said to wait for 21 days to see if it worked or not. Today was day five, counting Day of Chemo as day 1. I hope it has worked.
To Joyce Duffy:
What is this about fish in the freezer? I have a few frozen packages of fish-totally vacuum sealed- in my freezer. Noone said anything about not having fish in the freezer with the caps. I have had the caps in there with the fish for 5 days. The fish is not exposed in any way. It is frozen solid in vacuum sealed packages from Trader Joe. I wish the instructions were more uniform and clear to everyone. Is it okay to leave the caps in the freezer with the fish in this manner?? Please advise.
Nancy
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Can't wait to hear the reason not to have fish in the freezer. That is a new one.
I am very curious as to the impact that the size and quality of the cooler has on the freezing time. For example, those of us who had 14-16 caps had two LARGE coolers. There is just more space to cool and caps to get cold enough. Once the caps get to the low temps they will act as they own freezing mechanism -- but it took longer than 3 hours to get my caps cold enough with the coolers sitting outside in 70 degree weather. My coolers were Rubbermaid and I got them because they were on sale and had wheels. In hindsight I noticed that they got very wet/damp cold on the outside, something I don't think my Igloo cooler does (but it doesn't have wheels). Thus, I don't think they had the cooling power that a better quality cooler would have.
This is all a learning process for us. But if you read the entire thread it is amazing how far we have come.
Colleen
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