Cold Caps Users Past and Present, to Save Hair
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Vent away -- and you can probably leave a corrective message at the bottom of that news story.
And there is no doubt that the difference of 1 year has made a huge difference in the awareness of cold cap therapy, as well as our community's discoveries of how to use them effectively given our lack of freezers and need to use dry ice.
Colleen
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Lmflynn - vent away! I'm totally with you. I'm sure it's really frustrating for your sister and in turn frustrating for you.
sashasz - I know you're going to do great. Excellent that you have that positive attitude. It's not easy as this is a stressful time so more power to you!
nancy - I hope your next experience with the caps will be a better one.
motherofpatient - I'm sure your daughter will look just fine. She will be able to wet her hair whenever she takes a shower if she wishes. There are some leave in conditioner products she can use on the ends of her hair if that will help her situation. As Lmflynn pointed out, your hair starts to adapt. My hair would have been okay if not for the massive amounts of gray hair which I did my best to cover up. The hair was not great but then again my hair was never that great. I have kinda frizzy hair and I managed fine so I'm sure your daughter will do even better.
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Hi everyone,
I saw the oncology nurse today, that was a little hard. She went over all the side effects--not all that woman on posts have discussed, but enough to scare me a bit. It all seems so overwhelming. I will begin chemo on Jan. 6th. All my Doctors think I have a great attitude--I am trying very hard to keep positive. But I am scared of the chemo and the SideEffects. Also all the drugs to take. I also have a big problem with the caps, I only have my husband to work with me so far. My best friend is in Fla. for the winter, so is my sister-in-law, who is a nurse and would help if she were here. My other friends are either working/sick with broken shoulder/ or also in Fla. for the winter. My other sister-in-law will try to help, but she has to go to work, she can come for a couple of hours. Does anyone know if there are any volunteers out there (in New York city) who can help with this? Do you think the Rapunzel Project would know of any?
Keep positive and have a wonderful holiday season. Nancy
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keeppositive,
Good luck with your upcoming treatment. I am day 17 after my first tx of TC x4 and using the cold caps. So far so good. No hair loss. I have only my husband helping me with the caps so it is definitely doable with only one person helping you. Hang in there. The chemo is definitely doable also and is only a temporary amount of time
Best,
J
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so my doctor FINALLY admitted that the cold caps work!! he came in today looked and felt my hair and smiled and said.....Jen you proved me wrong, merry christmas!! we were having a bet if i would have hair for xmass and I WIN!!!! 10 or 12 weekly taxol done...hair on my legs gone hair on my head staying strong!!
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To Keeppositive, and everyone still in treatment or just starting:
Please just PM me for a copy of the Tips Table, a compilation of remedies that are very specific for combating the major side effects of chemo. I developed this Table, and used these successfully to experience almost no "down" time. This is the only codified list that I know of that summarizes it.
I was as petrified as anyone could be entering into this, but the tools for vanquishing the SEs were gratifying.
Will be developing a survey soon, that explores the experiences y'all have had with "patient education".
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Motherofpatient
i had the same fear with how my hair would look and after the first few weeks your hair really does cooperate! i wear cloth headbands when i need to and i pull it back almost every day with a barrett clip the kind with hte prongs and it holds my whole ponytail and it doesnt pull my hair to get on and off like a rubber band would and then i wear it down to bed. i have very curly hair whihc i used to straightened every day so i was defiantely neervous but really no one would know and after the first few weeks my hair really did start to cooperate! im trying to post a pic but i cant figure out how to do it anyone know how??
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Hi everyone
One week post my third TCH and still have my hair. Lost everywhere else except my head. They are thinner which is a little upsetting and just look unhealthy or I should say tired but still there.
Can I use any conditioners or that Sea-Chi stuff that you guys are talking about during treatment?
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jpmercy~ If you go to help at the top right hand corner when you are in the discussion boards -- it will tell you how to put in pictures. It's a little complicated the first time but I did figure it out eventually. Sorry if I'm not more help don't think I could explain it very well.
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keeppositive: The list of SEs the nurses gave you is a menu of possible SEs: it doesn't mean you are going to experience them all. My onc nurses did a great orientation (in fact, wrote a book about going through chemo, which I recommend). The first thing they said was "Do you know how much nausea you are going to feel?" We all raised our hands, lots! Then they said "None, because we have medicines for you so that you don't feel that." They then went through the menu of potential SEs accompanied by remedies.
I dutifully filled all of the prescriptions they gave me, and basically had a big plastic box next to my toothbrush, filled with lots of stuff I never used. I used a little immodium and about 5 compazine total, but the rest went untouched. The worst malady I had to contend with during chemo was...my hayfever. Seriously.
If you are feeling good today, don't waste a minute of it worrying about what symptom you *might* feel during chemo, because if you do have any symptom, whether it's diarrhea or dry mouth or whatever, there is a means to relieve it. And there is no need to suffer through any of the SEs, so don't be shy about taking stuff -- it works!
The good news is, you've already discovered the path to relieve the biggest SE, preventing hair loss! :-) One good helper is definitely manageable; if your other friends can help in other ways -- bringing meals, running errands, helping your helper! -- that can work also. Don't be shy about asking for the support you need. People will be there for you in ways you couldn't have imagined, it's one of the beautiful things that comes from this awful disease.
jpmercy: isn't it a great day when your onc cries uncle!?! I wish I'd had a camera or video when my onc gave in. It was one of the most satisfying moments of my treatment.
Cheers to all my sister penguinistas,
Susan
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Hi All,
I went for a genetic test today, hoping I don't have that gene. Also had an Echocardiogram today too (pre chemo).
I asked about Muga Skans and they said it is similar to echocariogram, but with radio active dye. They don't seem to do them at NY Presbyterian Weill Cornell hospital.
To mtrii: got your list and am trying to fill it.
To sebm9: thanks for the pep talk . I'm hoping and expecteng to not need to use the remidies, but am just glad to know there are ways to combat the SE's, if they occur-which I'm trying to believe they wont!!
To everyone: Have a wonderful holiday and a Happy and Healthy New Year--may this year bring all of us sustained good health, completely rid of this awful disease for ever, long and healthy lives with all of our hair on our heads intact!!!Keep positive,
Nancy
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Good Morning - I hope you all are feeling well today. Can anyone explain to me what type of barrettes you use - I saw something about an "hte" barrette but could not find any info on the web as to what this means. I am assuming it is a type of clasp? Thanks
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Good Morning Everyone, I have a few questions.
1. where do you get the oscar blani and the colormark root touch ups? Is there a store in New York or Long Island that sells them? Also other hair care products or are they all online?
2. Can I wear hats during treatment, not tight knitted hats, but regular hats. For winter, I have hats with brims and wide soft straps to tie under chin that cover your ears for the cold, but still look pretty. I will be doing chemo over the entire winter Jan. thru April. (6x every 3 weeks). Will I be able to wear hats in the winter for the cold or will it be too warm for the hair? I need to go out and walk to combat the fatigue and to exercise for my overall health. With diminished immune system due to chemo, I don't want to catch cold etc.
3. Did anyone use the cold caps with a freezer? I need to ask a few questions about that.
Thanks all,
Nancy
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Queston on Dry Ice - web pages says it can to toxic if in an enclosed area over ten minutes - I plan to get it on Tues evenings for Wed Chemo. Do the leave the coolers open? Is is safe in a drive under garage or should I leave it outside? Caps arrived 10 minutes ago. Thanks
We are using a freezer to store them at home- an upright that goes down to 23 to 26 below zero and ice to get them to -30. Just got it Saturday so we are monitoring it carefully. Caps were at 9 degrees C when they arrived so they are in the freezer now. Frank wants me to run some temp checks for him since I got the caps 2 weeks early just to be safe.
I too have questions about wearing hats. My daughter will be getting 6 tx starting Jan 5, taxotere, carboplatin and Herceptin. Sounds like you two are on a similar time schedule.
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motherofpatient,
I get the dry ice the night before chemo and keep the dry ice in the coolers with the lid closed overnight in my garage with the window of the garage open. You can also leave them in the coolers lid closed outside if you want. I put the caps on dry ice in the 2 coolers approx 4-5 hours before chemo starts which gets the temperature well below the needed -30 degrees. The caps are in my regular freezer at all times prior to putting them on the dry ice.
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To motherofpatient,
Yes a young woman can do this and still look presentable. I just turned 31 and kept up with normal activities going out with friends and even taking a beach holiday and no one knew could tell. I too used lots of cute colorful headbands (by the way I just noticed there are tons of them for the holidays) or just left my hair naturally wavy.
To Keeppositive,
You can find oscar blandi and/or colormark at most beauty and hair care stores. If not, root touch-up also works and you can get that at any drugstore.
You can definitely get by with one helper. He will be busy but its totally doable. But I second enlisting other willing people to help in other ways. Perhaps someone can volunteer to drive you back and forth to the hospital, or bring over dinner.
Yes you can definitely wear hats, especially if you're outdoors.
I also kept my dry ice in closed coolers overnight and never had problems with toxic fumes in the house, but I did have issues while driving with the dry ice in the trunk. So make sure you drive with windows cracked open.
To everyone contemplating doing the caps, I echo all past PCC users in saying they work and they are so worth it. A lot of people have also commented that I looked "healthy" during chemo which I attribute to the cold caps since I felt much more inclined to go outside and be active given I looked completely normal.
To all penguinistas have a happy holiday season with your fabulous full head of hair!
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Day 14! hair still hanging! Just back from herceptin infusion----got swarmed by the nurses--they backed off somewhat today--but one of them said --"oh you must be one of those girls who will hang on till day 18--then be ready!" What nerve--since i did have a slight shed so far of course I am getting more and more parinoid----well on a happy note she did wish me happy holidays---
You All Have Been so Supportive---Happiest Of Holidays-----(hope I make it thru the dreaded day 18--and beyond!!!!
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sashasz3 - The nurse's comment is infuriating me! Can someone please explain to me what the point of comments like that are. Sometimes I really feel like people want us to lose our hair - and it's never the other patients - not even the one's not doing the caps. Like - "you are doing chemo - you are supposed to lose your hair." I would have laced into her if she said something like that to me. What have these nurses been doing to you? Are they annoyed by the caps? You show them!! Can't wait for her to eat her words when you have hair at the end!
To all of the penguinistas and other caps users and supporters - have a very very happy holiday!
Ditah
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sashasz3: you go girl! Those nurses will be eating crow next time you are in. It's very satisfying! My care team varied in enthusiasm at the start (with the exception of my social worker, who'd had another patient at another hospital who'd used PCCs; she was quite excited that I was bringing this to my hospital). Every time I went back, and up until the final treatment (and even now), they were amazed and ultimately converted. Remember, they've seen thousands of patients and they've all lost their hair, but you are the first person they've seen using PCCs, and even though other scalp cooling treatments have failed, you will be the first person they see who makes it a success. You are a pioneer. Some day, this will all be routine, but for now, it is patient-driven. Just keep your chin up and realize how many other women's paths will be changed because of what you are doing. Way to go!
motherofpatient: I got the dry ice the night before infusion, and had the coolers in the car overnight. (I had to climb three flights of stairs, otherwise, and didn't have the strength to haul three coolers filled with the heavy caps and the ice, up and down.) I left the spigots open so that the gas could escape, and left the windows in the car cracked open, so that as the ice "melted" into gas, the gas would not build up in the car. There would be a little pile of frost at the base of the spigot, so I kept a towel underneath so as to not damage the car seat.
Drim: I agree about outrageous comments from nurses. Yesterday I had an annual with my obgyn. The nurse who took my blood pressure commented on how well I did through my treatment (they hadn't seen me since the CBE last January after I discovered the lump). She then added that her mom had BC and went through treatment and then it returned 3 years later. The comment just hung there -- what am I supposed to do with that??
That kind of stuff infuriates me. It has nothing to do with me. It does not support me, it does not connect to my case. I train the volunteers at our hospital, and when we cover the topic of Boundary Issues, I always instruct them to not discuss their own medical experiences. It is very easy for the patient to confuse a staffperson's personal/family experience, with the medical info from their doctor or nurse. It would be easy for me to have left that exam feeling "I guess I should expect *my* BC to return in 3 years too!" Okay, now I've vented.
Cheers to all,
Susan
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Oh ladies .. it is so nice to read your posts.... I'm smiling and just what I needed... VENT AWAY!! Tx#3 was yesterday. YEAH - 3 down 1 to go for me. Feelinng really OK today ... need to take that steriod and dreading it. Want to have the OK feeling go through Christmas if possible. But I love the passion we all seem to have. I too am so amazed at the clinical community (one I've been part of for over 25 years - not as a clinician) My oncologist yesterday was still skeptical -- she said we'll wait unitl you're done and you'll be my test case. Now don't be disappointed.....She did ask me if she got a freezer would I do education for people who wanted to try it and help them and I said OF COURSE! Would love to. I would help their helper(s) the first time too and then they could do it. It would be a small way to give back when at the end I have my hair...
The best to everyone -- Merry Christmas and Happy New Year....
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Happy holiday to everyone celebrating Christmas and to those who aren't enjoy your vacation time!
I have a question, did anyone get a hair cut before doing chemo and cold caps? I would like to get one on Sun or Mon,which will be 10 or 11 days before I start this journey. I figure I won't be able to get a haircut again until after the chemo is over. Anyone know how soon after for a haircut? I know its 21/2 months after for coloring the hair. Also did anyone use a dryer with cold setting? If so, how did that work out?
Thanks and keep positive,
Nancy
I
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I am going in for my fourth and final chemo on Monday. (Happy Holiday right?) I am being given Taxotere and Cycophosphamide. I have used the cold caps, and my hair and thinned a lot, but at least I've had hair for Thanksgiving and Christmas! I've been very lucky to have been surrounded by a group of girl friends to help me through this. It's a party every chemo day with two friends at the infusion clinic and more at home. They do the caps for me, but have also rotated bringing food for the four hours at home post chemo. With delays it's taken up to nine hours of cold caps to get through the day.
My biggest problems have been constipation and a sore privates area. The clinic had never heard of this, but I was able to solve the lower problem by putting A & D ointment all over down there (yeah, that's the stuff I put all over the baby's bottoms with diaper rash in the day). This has help a lot. The constipation actually put me in the hospital the first time. The stool softeners and senna have helped "keep this moving" and recover faster. My biggest thing is to keep moving at the gym. I have also invested in some massage. I had done a couple of massages in the past. My impression was that it felt nice, but wasn't worth the money. With the chemo, my impression has changed. The massage affects last several days. I sleep better and feel like doing more.
I am on blood thinners, so I've had to watch my diet for a few years. Add the changed tastes related to chemo therapy and my clinic says nothing raw, which cuts another set of foods, I know I haven't been eating like I'd like.
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I gave in and several feet away from the furnace register to dry my hair. At that distance it is not that warm, and not that hard of air flow. I was desperate to have my hair look a little better and that was my compromise.
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Merry Christmas Everyone!! I would love to give this nurse what she deserves--but at day 15--still really scared--shedding alot today--so in the future you better believe---The whole team will watch me walk --in my hair swaying side to side----I do have a good feeling about the PCC----Rock the look in the infusion center----Pray it works well for me!! My outlook is One Day At A Time-!!!
Mery Christmas To One And All--Thank You So Much For Being My Rock!! Love This Forum!!!
Sharon
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Just got Highlights for the Holiday Season...
Gotta love that hair!
Merry Christmas to all of you...
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Thanks for the reply. I have been trying the caps since they arrived. We bought a freeze that goes down to -23C. I know that isn't cold enough but I wanted to experience some of what my daughter would go through when she uses thte caps. I gotta say, you girls are very tough cookies. Wow! It did get better after a few minutes but the weight of the caps on my deteriorating neck vertabra was a challenge. You all have my deepest respect for your endurance. Good luck to all.
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Thanks for the reply. I have been trying the caps since they arrived. We bought a freeze that goes down to -23C. I know that isn't cold enough but I wanted to experience some of what my daughter would go through when she uses thte caps. I gotta say, you girls are very tough cookies. Wow! It did get better after a few minutes but the weight of the caps on my deteriorating neck vertabra was a challenge. You all have my deepest respect for your endurance. Good luck to all.
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Ang - congratulations on the hair. It must look beautiful. I just blow dried/flat ironed my hair for the first time yesterday since the caps (I've had it done professionally 3 times). My hair feels back to normal but now I can notice the whole sideburn thing. The hair fell out there. When it grew back it wasn't stubbly so i didn't really notice. One day it was just there...but now I see that the length is short (3 inches or so) and they stick out when I blow driy my hair (since I'm not a pro at all I'm obviously having issues that the pros don't). In any case I'm really happy that the condition of my hair is good and I'm definitely having less shedding then I remember in the last 10 years.
Julia - welcome to our group. I noticed you are HER2+ so you're probably doing the herceptin too. You're one of the first people I noticed that did the TCx4 like me instead of TCH. Sorry that you had those side effects but at least it's over now. Congratulations. The H alone is definitely easier. I don't have any side effects at all except for a slightly runnier nose than usual.
MERRY CHRISTMAS!
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motherofpatient:
I just sent you my coldcaps flyer and tips, but PLEASE have your daughter wrap herself in the electric blanket, nice and warm, BEFORE she does trial runs with the caps. She should also use the moleskin (directions on the flyer i sent you via email). These are KEY steps for comfort during cold cap use!
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Also, it is true that the caps are heavy. ONE solution i found was to get one of those small squishy pillows and lean against that, in the chair or bed, while the cap is on. It makes it much more comfortable than balancing the cap on head with no support!
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