Cold Caps Users Past and Present, to Save Hair
Comments
-
Just went to yoga (for the 1st time since BMX/chemo) and my blond hair was all over the dark yoga floor, on my pants, falling down my arms. I am sure it was only about 10 pieces, but it felt like 100. This is just how it is, right? Came home and cried. I am thankful I still have hair, but it is still hard. Each day I come to this site to see the good news...anyone have any?
0 -
Annie...you will lose some hair. I lost quite a bit...but only I could tell. I went into a panic anytime I found strands anywhere. I am closing in on a year out of treatment. Yesterday, my son laughed and said there were blond hairs all over my back as he reached to wipe them off. I felt this surge of relief , joy and laughter to my bones....HAIR FALLS OUT!!!! It had nothing to do with chemo, just basic life processes. You will get to this point....trust me!!!
0 -
I guess we need to keep in mind the average person loses 100 hairs per day-----I know this doesn't help--because ours will need to start from scatch--for our hair to return----the good news--we still have hair--even if it isn't up to our usual glam status--I am grateful every day!!! Hang in there---I sure am trying too!
Sharon
0 -
Hi Sharon and Annie,
Sharon I am 31 and went into chemopause sweats and all....sweats have lessoned in frequency and im hoping will return to periods due to my age and wanting to have more children but none the less the sweats and change in body heat will not in anyway effect ur hair on ur head! U will be just fine!
Annie! I dont know if u have read my crazy theories on hair falling out but I'll fill u in on What I think, without chemo we never focused on shedding hair it was a part of our day I remember cleaning out my hair brush every other day and had tons of hair in it. While on chemo I never brushed my hair only combed so I always saw every strand Y hair shed right there on my comb making it more evident and made me crazy! But it was really the usual hair that normally fell out. It was hard when I washed my hair I did weekly chemo so I knew the three days post chemo I felt like I shed more but to this day 5weeks out from last chemo, I can't even tell the difference! Hang in there u will both do great and be so glad u did the caps keep it up! And yes it's normal to dream ur hair is falling-out I had that dream every week without fail! Now I laugh when my one year old pulls my hair when I hold him...I think geez it could have been bald right now...thank you frank!!0 -
Thanks for the nice words Jennifer! I have so enjoyed reading about your experience with cold caps. Love the pictures from a while back. We shared the same history, though i am much older at 43! I think it comes back to me focusing less on me!!! The hair is what it is...I am thankful to have hair, but still nervous every day.
Annie
0 -
Sharon,
Late in my chemo (and after) I began having chemopause night sweats - sheet-soaking, feverish, all-consuming night sweats. Five minutes felt like an hour. I didn't notice them at first because it was summer and I was working out alot, but then I added Tamoxifen and they intensified. My medonc assured me the first 10-12 weeks were the worst, then it would settle down. (It did.) I had not only night sweats, but sleeplessness and moodiness. No bone pain or weight gain; in fact, I not only kept off the weight I lost, but found that my continued exercise and workouts and martial arts have helped fend off the other side effects. But it did settle down after about 10 weeks. I'm staring down my 1-year anniversary of being cancer-free (post surgery) and probably feel the most content and happy and centered I have ever felt.
The good? news is that I've not been thrown into real menopause. (I had a partial hysterectomy 2 years prior to my breast cancer diagnosis, so already had been through some of that.) The bad news, I guess, is that at some point I'll go through nonchemical menopause. But you know what? I've just been in a battle to save my life from cancer. I'll be HAPPY to live long enough to go through a regular menopause. You have to stay positive! [Remind me I said that some day when I'm having a violent mood swing, okay? :-) ]
Just remember, when you go through these things, whether chemo-induced or natural, don't go through it alone! We're here to help and support each other. These experiences feel so isolating and all-consuming, but they are temporary, and you have many sister travelers on the bigger journey of living!
xo
Susan
0 -
Hi. I am joining the discussion as a new user. Friday afternoon is my first of 4 TC treatments. I'm nervous about that since I feel great now and don't want the side effects. So thankful to learn of PCCs! My husband will be my helper along with a friend. We did a practice run tonight with dry ice and the caps were not cold enough in 2 1/2 hours.
What size ice chests did you use? How did you fit 4 caps in their boxes with dry ice on all sides? Seems like only 3 fit bc wheels take up room. Tips on size of chests and placement of dry ice? How many pounds of dry ice?
Also the caps are not uniformly the same temperature. Some areas of the caps are too cold and other sections not cold enough. Different sections so can't knead the portions together. Advice?
Thanks so very much. I'm finding such encouragement from you, my new friends, who have traveled down this path a few weeks/months ahead of me!0 -
Howard-I've found it take approximately 4 1/2 hours to get the caps to the correct temperature range. Between -28 to -33 degrees Celsius.
I use 2 coolers-Igloo Ice Cube 60 qt. I prefer the square, rather than rectangle shaped coolers. They are easier to maneuver and hold almost as much as the larger more cumbersome rectangular ones.
I order 100 lbs of dry ice. I use 50 lbs per cooler.
The blocks of dry ice are size approx 12 inches square by about two inches thick. Each block weighs about 10 lbs. Be sure to use garden gloves and wear eye protection when working with the dry ice.
I put the whole blocks of dry ice (enclosed in their own plastic bag) into a 2 1/2 gallon Hefty Zip bag-DO NOT close bag.
Set aside 2-4 solid blocks of ice. After dry ice is in bags I break @ 60 lbs. into @ 1 inch size chunks with a hammer.1. Line Bottom of the cooler to completely cover with the chunky dry ice contained within the Hefty bags. It takes @ 1 1/2 bags to cover the bottom of my coolers.
Hope this helps!
2. Stack 2 boxed caps on top of the dry ice at the bottom of the cooler.
3. Place bagged chunky dry ice between boxed caps and sides of cooler-lining all 4 sides. It is not necessary to cover sides entirely. The ice can be crushed very small to fit this narrow area.
4. Place more bagged chunky dry ice on top of boxed caps.
5. Stack 2 more boxed caps on top of bagged dry ice.
6. Place bagged solid blocks of dry ice on top of boxed caps.
7. If there is any remaining air space fill with a towel. This prevents heat causing cold loss of the dry ice.
0 -
Howard: I am starting TCX4 in a few weeks so you will be just ahead of me! I am doing the caps too. We will have to compare our progress. I am nervous too!
My hospital has a freezer onsite but I am scared the temps won't be right. I don't know what to do.....I am tempted to bring some dry ice in a cooler to throw them in there if the freezer is not cold enough, but I don't know if that will work. Anyone do their cold caps at a place that had their own freezer? How did that work? Did you bring a cooler at all? HELP!!!! I have read some of these places don't maintain the right temperature in their freezer.......
0 -
Hi All,
It's been a while since I've read this discussion chain. It's great, as always, to read everyone's questions and answers, and to sense the optimism and support from everyone.
I used the Penguin Cold caps and finished chemo 11 weeks ago. My hair got thinner and drier during chemo, but I very much have a full head of hair. And the shedding has now stopped to a very substantial extent. (It was worse after the end of chemo - six rounds of TCH -- than after earlier rounds.)
I'd like to get my hair colored, for the first time since last summer. Any suggestions on what to ask for at my beauty salon? I gather some hair coloring treatments are gentler than others, but don't know what to request. If you've finished chemo and had your hair colored, I'd love your suggestions.
Okay, one other question while I'm at it: I'll have my second surgery (to remove the tissue expanders and put in the implants) in March and I don't know what to expect. I'm small breasted (still), 54, and quite fit. All that bodes well for the surgery, I suppose, but I'd like to have realistic expectations about the recovery process. What were your experiences with this surgery and with the recovery process? (When I had the port installed, it was GREAT to read about people's experiences -- so much more informative than what the surgeon told me.)
For those undergoing chemo, know that you will feel better after chemo. I felt quite lousy -- weak, tired, frustrated, bloated, worried about lymphedema -- for nearly 6 weeks after my final chemo. And then one day -- and it really was one day -- I felt way better. Since that day, my energy has come roaring back (and I've lost the water weight I didn't know I was carrying). In my aerobics classes, I have energy and stamina I feared I wouldn't have for several more months. Such a relief and so much fun.
Looking forward to words of wisdom and experience re hair coloring and re my the implant surgery.
Thanks so much!
Katherine
0 -
Hi girls, im poping in to say hello, I was on AC x 4 then Taxol x12, 16 treatments and i still have my hair, i lost all legnth and ended up with about 6 inches when i was done but it is very thick, i know it seems like a lot to lose but remember, i did 16 treatments, no one knows it just looks like i cut my hair short, i pin it up in the back, its so thick that everyone thinks its just all pinned up.. i colored it 3 weeks after chemo,(i couldnt stand it anymore) it did fine, i never lost anymore, it has been 3 months since my last chemo and i have colored it again, i highlighted as well, as for my eyelashes and brows, i never lost any,i used the Latesse everyday, i swear by it!!! i hope this bring you some encouragement, i know its hard to see your hair loss everyday but it will work!!!!
love to all
Chey
0 -
I seem to remember someone used the elastogel caps. Does anyone have info on these, how long they stay at -30C and how long it takes to cool them back to -30C after using since we have to use each cap twice for a total of 16 changes?
0 -
Motherofpatient,
I used the Elasto gel caps...I did not use a thermometer as you don't have to use one with these particular caps. I did keep a thermometer in the cooler though, to make sure the temp in the cooler stayed below zero, but did not have to take the temperature of the caps.
I re-used caps every time I had an infusion....The Elasto caps refreeze within 30-45 minutes after you use them....
Remember, direct contact with dry ice on the Elasto caps does NOT affect them in anyway. So, you can put dry ice inside them after you use them and they refreeze VERY quickly and NOT have to be kneaded. But, if you keep the dry ice inside them longer than an hour, they will more than likely need to kneaded before using them.
Please PM me if you have any other questions I can answer for you!
peace and prayers,
Tori
DE COLORES!
0 -
Hi MDG - I am on #2 of 6 TCH. I am 9 days out. I have a freezer at our office. Our temps did seem to bounce around, due to some cycling issue. So far, so good! I think I am going to follow up with our local person re the temps and see what they say...I will get back to you!
Annie
0 -
Hey Chey,
So great to hear how you (and your hair!) are doing!
xoxoxo
Susan
0 -
Thanks Annie. Do you have your own thermometer or do they have one there? I assume they have one.... Did anyone bring 1 cooler with dry ice to try to further cool the caps for a while on their own. Would that work? I don't want to get there and then find out the caps are not cold enough and lose my hair. I opted to have chemo and keeping my hair was part of that decision.....I am nervous...
0 -
Hello everyone,
I am 9 days after 2nd TCH round and feeling okay except for a little tingling in my toes and the funny taste in mouth got really bad the last few days. Can't eat fruit, it tastes like slime and water is very hard to drink and coffee tastes lousy too, but food in general seems to be fine. After many tries of adding flavoring to water, none of which worked, especially not the citrus flavors-because of bad taste of fruit, my husband suggested putting salt in the water and Whallah! it was drinkable with the salt!! I use the mouthwash and it helps, but it wears off and you can't always use it, especially if you aren't at home, so here are a few things that work as well.
Listerene Breath Strips-they are little sheets or tabs that melt on your tongue.
Peppermint Lifesvers-regular or sugar free.
Halls Mentholyptus drops or any flavor mentholyptus drops,such as lemon or honey or honey-lemon,etc.
Werther's Original Hard Candies-regular or sugar free-carmel flavor/carmelcoffee/or carmel mint.
I keep a large supply of all of these at home, in my coat pockets and in my pocketbook and I seem to be bearing it okay.
To mdg: Don't worry, the caps will work, even if they aren't exact temp. Check the temp on the outside door of fridge a day or so before you are scheduled for chemo. If it isn't -32 degrees celsius, ask the person in charge to adjust it. Frank doesn't want you to leave the caps at the hospital, but in our hospital, we do. No one steals them, or touches them. Each person using the caps during the same time period has their own shelf, and does the chemo on a different day. It seems to be working fine. I take 4 caps home after my chemo session and use them from my home freezer, which only gets them to -10/-11, or -12 degrees celsius. (They still work.) This is added insurance, so to speak. I return the caps to the hospital freezer a few days before chemo to be sure they get down to -32 degrees celsius for day of chemo.
As far as being able to stand the freezing caps, it is the worst with the first cap for the first 5 minutes, it is like a really bad ice cream brain freeze, and then you get used to it or your head is numb. The first few minutes of each succeeding cap is similar, but not as intense. At home, it is much less, because the caps are much warmer. I use the eyebrow band too, and this is also very uncomfortable for first few minutes and then you adjust to it. It is really worth it. Last night we had dinner with cousins who hadn't seen me in months and were very pleasantly suprised to see me looking so well. They said I didn't look sick at all. One of them is a Doctor, head of bone radiology at a big university hospital, and he was impressed about how healthy I looked and how I still had my hair!!
We are the Pioneering Penquinistas!!! More power to us!! Keep Positive!!! and Keep Walking!!!
Nancy
0 -
Thanks Nancy. My hospital also has caps there so I won't be getting any shipped to me. They just have them for patients because they participated in studies and still have them available for people to use. It is much cheaper for me to do this too, but I just want good results. I will be following up with them next week and finding out how I can check things out before. I know there is one other patient using them right now. I am going to see if they can put me in touch with her to see how it's been going. I don't know if they will give her my phone number/contact information. We will see.
0 -
My daughter has been using the PCC then I met someone who uses the Advance Cold Cap Services and, boy, what a difference! The helmet is a one piece that easily slips on. It gets cold quickly so re-use is easy. One cooler and 6 caps instead of two coolers, caps, cap boxes.Rather than having to stay at the center until 7 or 8 pm as in the past, we were able to leave at 3:30 and actually change the caps in the car on the way home. I have a Toyota Matrix so there isn't a lot of room once you get 3 adults and two 60 gallon coolers, towels, mole skin, lunch, electric blanket, etc. I was very skeptical at first, but after seeing them side by side, testing temps with my lazer thing, well, they one us over. It is so much easier that my daughter can do it herself if she needed to.
0 -
Motherofpatient-
Those are the exact ones that I used, except mine said "elasto gel" on them instead of "advanced cold cap".
Peace and prayers,
Tori
DE COLORES!0 -
I am skeptical on the effectiveness of using the Elasto Gel caps...There was one person who posted on here that she would be using them. She stopped posting shortly after. Just around the time one would start losing their hair... It was disheartening. She was so excited about using the caps. I really was hoping they would work. I looked into the Elasto Gel caps. I like the idea of being able to purchase them outright without having to rent them. They recommended purchasing 2 caps for the entire treatment. I do not see how one would be able to maintain an effective temperature for the duration with only 2 caps. Although the Elasto Gel cap seems easier to put on because it is a helmut, I think the Penguin Cold Cap, which has the velcro closures, offers a more secure tight fit, which is customized for each wearer.
What is the temperature of the cap when it goes onto the head and also what is the temperature of the cap when it comes off the head? How long does it take to chill a cap after it has been removed from your head? Do you use regular ice or dry ice? How long do you wear the caps after infusion has ended?
0 -
Following up on Nancy's posting:
Suggestions for hydrating:
CVS brand Ruby red grapefruit juice; gatorade -type drinks; iced tea/lemonade (aka the "Arnold Palmer").
For mouthwash, try the SmartMouth, the 2-solution stuff.. very powerful and effective.
0 -
Hi all,
Because the pages turn so quickly on the Board, I am reposting this url to the Patient Education Survey I'm conducting.
Those of you in treatment or past treatment, your submissions will be greatly appreciated!
http://www.surveymonkey.com/s/PatientEducationMaterial
Best and thanks,
Marjorie
0 -
Hi all,
To mdg: If your hospital has free caps for you to use, by all means, do it!!! You are way ahead of all of us. We rent them for a little over $500.00 a month for 3 months and just under $100.00 a month for all months over 3. The caps work, even at slightly lower temps. The Elasto Gel Caps are used at a lower temp and they work too!
If you need to buy an Infrared Thermometer, the best buy is at Amazon.com. It is called Mastercool Infrared Thermometer with Laser. It's temperature range is:
-58F to 932F and -50celsius to 500celsius.
It is about $46 or $48. All the others are more expensive. It works great!
Don't be afraid, it is easier than it sounds, especially in a hospital with a freezer.
To makingway: I belive that person is Tori "De Colores" who posted here just above your post, that the Elasto Gel Caps worked and she has all her hair and has finished chemo.
Keep Positive!!
Nancy
0 -
keeppositive:
I received very specific instructions for hydrating from my chemo nurses. Their rules were: a mix from several groups including 1. water, 2. broth/clear soup (with sodium), 3. juice such as apple juice (potassium) (but no citrus -- too acidic for the stomach lining, which is destroyed by chemo), 4. other such as jello, ginger ale to calm the stomach if queasy, or herbal tea.
The other food rules I was given: no raw fruits or vegetables (skin fruits such as bananas and apples were okay), no rare meat or fish, no sushi :-(, no spices or fried food, no blue cheese or moldy cheeses, no caffeine, no alcohol. I was on a three-week TC cycle, so that third week I could be a little more adventurous. However, after accidentally ingesting a single raw strawberry during strawberry shortcake season, and suffering the violent consequences for 3 days, I stuck to the diet hard-core. That was the worst I felt during the entire chemo, and it was totally avoidable. One of those "I feel great, what the heck" moments at a picnic. Sheesh.
The first three days post- each-chemo I was on a rice/chicken/cottage cheese/apple juice/banana type baby diet.
My tastebuds went aloha right away, though; around my second chemo I tried Biotene rinse and found it quite soothing, wish I'd had it from the start. I didn't chew ice during my first chemo and wish I had. I'm a foodie, so I missed those spring and summer flavors. I found salty foods and apples quite appealing (no pun intended!) and learned to make things like quinoa with apple juice, fennel, dried cherries, and pine nuts (one of my favorite recipe inventions from chemo).
My nurses wrote a book about going through chemo and all of its physical, emotional and spiritual effects, and how to manage it. I just moved into a new home and it's packed, but as soon as I unearth it I'll share the info. I found it invaluable and very forward-thinking.
A little off-topic cap-wise, but I hope it helps!
Btw, I had a very sore rib after rads. I thought I bruised it, but it kept getting worse. I was golfing, swimming, doing martial arts, all kinds of things, and blamed myself for straining it. Before I knew it I was schlepping boxes of toys at work (one of my duties is being in charge of Christmas at a children's hospital), and also packing to move to my new house. Sore, sore, sore. I just had my six-month visit with my Rad Onc, and she immediately took the blame for the sore rib, inflamed as a SE of radiation. I'm relieved it isn't something cancerous, on one hand, but bummed it is permanent. She said a daily megadose of Vitamins C,D,E will help the inflammation. Three days into that therapy and the pain is gone for the first time in six months!
Best,
Susan
0 -
Makingway---I used the Elasto gel caps for 6 treatments of T/C and am almost 5 weeks PFC and have a full head of hair.I certainly understand your skepticism, because they are definitely different from the Penguin cold caps, but they do work. It's true, that everyone is different and different chemo cocktails can change the effectiveness of the caps for each person. That is the same for both types of caps...Elasto caps are actually a helmet type cap that fit snugly over your head with a velcro chin strap. They recommend that you use extra Ace bandages to ensure a more snug fit. They do not require you to use a thermometer....you change them every half hour and they refreeze within 30-45 minutes using dry ice that you can directly put on them without causing any damage to the cap itself. You wear them 3-4 hours after infusion.I did research on my own (before deciding to go this route) and found out that these type of caps have been around since 1986 in Europe (just like the Penguin caps) ....there are also videos about them on YouTube. Looks like both Penguin Cold Caps and this Elasto gel have been working on this theory for a long time and both have come a long way! Thank goodness, right?So, really, it's the same concept for both, they just accomplish their goal in a different way. Both companies are doing great things to help women keep their hair, that is for sure!I am very thankful....peace and prayers,ToriDE COLORES!0
-
So does chemo mess with the lining of the stomach too? That scares me. I can't even take oral NSAIDS without problem......I will have to talk to my med onc about that. I have bad stomach issues. This should be fun......
My cold caps will cost $200 per week I believe since my doc's office has them there for rental and has a freezer. I know how lucky I am. I just hope the freezer is cold enough.......please cross fingers on that!
0 -
Dumb question about eyelashes since all of you gals know everything
Did you wear mascara during treatment? Were you worried it would pull lashes out when you washed it off? Comments? I always wear mascara....can't imagine going without it, but then again I never imagined having a BLMX either....whatever.0 -
Hi MDG - I would recommend getting all the stuff for the stomach - immodium, senna-c (for constipation), suck on ice during the taxol/taxotere for mouth, get the biotene mouthwash for your mouth, the sensitive toothpaste, TUMS, all of it! And take it! I spent the first 12 days sick with diarhhea and failed to take the immodium (dumb) because they had warned me so much about the constipation. Oh, and I did use A&D as well.
Mascara - I have long, thick lashes that have thinned. I am simply going natural there...i noticed a few eyelashes on my mascara and then decided that this was no big deal. I am going my first graders reading event this morning and just applied a thin coat to my upper lashes. I did notice that if I used mascara remover I was getting lashes on my cotton ball. It seems like people either wear thick lashes or no mascara...talk about options!!!
When is first chemo?
Annie
0 -
Good morning -
I asked my oncologist about this ... he mentioned that, because the scalp would not actually be "treated" he has seen cases where the cancer returned to only the scalp. That was enough info for me to decided to go without ... and I just wanted to share the answer to my question ...
Hugs and a Smile.
0
