May 7, 2012 05:01PM mdg wrote:
I used PCCs and I put tips on my blog. Link below.
All Topics → Forum: Managing Side Effects of Breast Cancer and Its Treatment → Topic: Cold Caps Usage Tips
This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.
Posted on: May 5, 2012 06:12PM
Now that the Cold Caps thread has over 200 pages (yay for all of those CC users!), I thought that it would be helpful for new users of the various caps to post your tips on usage. We know that there are some very helpful things that got us through using the caps (like using an electric blanket, etc.), so let's help out the new gals with tips and strategies! Please include in your post the type/brand of caps or machine that you used and your chemo regimen/dates. Thanks!
Posts 1 - 30 (59 total)
May 7, 2012 05:01PM mdg wrote:
I used PCCs and I put tips on my blog. Link below.
May 8, 2012 11:35AM - edited May 8, 2012 11:36AM by ckk
Here's the things that I found most helpful when using the caps (I used PCCs and had 4 rounds of T/C):
1. Ask for Ativan in your premeds or take by mouth before the first cap.
2. I bought moleskin sheets in bulk from Amazon.
3. I used waxed paper to draw a template of my hair line, and used that to cut moleskin in the shape of my hair line.
4. An electric blanket, layers, and fingerless gloves kept me warm
5. Change the part in your hair between cap changes
6.Eat something before the first cap - cuts down on nausea
7. Delay going home until right after a cap change...minimizes stress.
May 8, 2012 11:48PM Lmflynn wrote:
I used the Penguin Cold Caps, dry ice in coolers from 11/2010 - 1/2011. I had TCx4 @ 3 weeks. I kept 70 - 75% of my hair. I was 45 and mostly a vegetarian..some poultry and fish....I mention this because I shed for a long time after chemo....until June/ July ... And many times thought I'd lose all my hair...I did not and no one could tell but me, and now they know that iron may help shedding. I used the caps 2-3 times per week for an hour (2caps @ 30 minutes each) out of kitchen freezer b/n treatments.
Best tips .... 1) Trust your helpers...and two is better than one..unless you are one of the greatest DHs ..that some have ... which I did not. 2) Electric blanket. Life saver for me! 3) Ativan in my IV..stressful enough and it helped me! 4) Dr. Scholls moleskin to protect forehead. 5) Change your part at cap changes to protect bare scalp 6) eat something b4 infusion... 7) drink, drink and drink more water during and after for two days.... 8) remember if the cold feels like its too much it will go away after 3 minutes....the first is the worst and it's all easier after the first time..... 9) have faith.....
May 14, 2012 04:36AM KCD wrote:
A comment on hair care, I used the recommended kenra conditioner spray and I would always spray it on my comb along with my hair, it helped get the comb through my hair without pulling.
My forehead is where the pain from the cold cap was the worst, I found using a base and top layer of moleskin padding with a thin pantiliner sandwiched in between worked really well to reduce the pain.
May 14, 2012 04:51AM - edited May 14, 2012 04:51AM by Sian65
May 14, 2012 04:56AM - edited May 16, 2012 09:25PM by Sian65
May 14, 2012 07:49AM makingway wrote:
@ Sian65-Not many are aware that this technolgy exists-here in the US, and apparently in Sweden as well, or you would have known that there is cold cap which is manufactured there in Sweden. It's the Dignicap, made by the Digitana company. They just finished a clinical trial for those caps in San Francisco, CA. We don't all feel the same about losing our hair. Some are okay with being bald and having short hair. For others like myself it would take years to grow my hair to the same length! Sometimes the hair never grows back!! There is @ 7% chance of that happening with certain chemo drugs. Another good reason for using the caps is that it allows you to maintain your privacy-no one would know you're a 'cancer patient' unless you tell them. You look healthy-you feel healthier :)
May 14, 2012 06:33PM makingway wrote:I put this list of video links together for those considering using the cold caps. I will be posting it later on the website. Please visit the site for detailed instructions on hair care and tips while using the cold caps. www.penguincoldcap.net/
Texas News April 2012: www.nbcdfw.com/news/local/Froz...
San Francisco, CA: abclocal.go.com/kgo/video?id=7...
Tucson, AZ-April 2012 www.kvoa.com/news/tuscon-woman...#!prettyPhoto/0/
Beaumont, MI-November 2008: www2.wxyz.com/dpp/news/health/...
October 2010 GMA: abcnews.go.com/GMA/OnCall/vide...
Burbank CA-Peggy Hickey: www.dailynews.com/ci_19148455?...#f3d03d7670b745
Oprah artcle: www.facebook.com/photo.php?fbi...
May 14, 2012 07:07PM Ang7 wrote:
I noticed the comment about being on iron.
I was on a high dose of iron after chemo due to anemia and I did not have much shedding at all.
Not sure if those are connected...but it does sound like many people do shed.
Hot tea, and a special blanket that you heat in the microwave helped me through the PCC's.
(Also ativan and a supportive Cold Cap husband!)
May 14, 2012 07:37PM pamelahope wrote:
I am reading with interest about these cold caps. I have not started chemo but was told I most likely will need it prior to surgery to shrink the tumor. I have not been officially diagnosed.
I care more about my hair than my breasts. What is off putting is the amount of work required to keep my hair. I don't have anyone to help me and my husband has to work. Is there anything less labor intensive. I don't know if I will have extra energy for all this when sick from chemo, yet I want my hair? Any other options?
May 14, 2012 08:06PM mdg wrote:
Pamela - most of the work for the hair is done on the actual chemo day. Usually someone goes with you to chemo so maybe whomever takes you to chemo can help do the caps. It involves dry ice, coolers and someone helping you put the caps on. You may also consider letting us know where you live and will be treated because some of us gals that used the cold caps have helped others. Good luck to you. I know this is all very overwhelming. Hugs!
May 14, 2012 09:41PM makingway wrote:It's much, much easier when using a freezer than it is using coolers and dry ice. The Rapunzel Project will donate a freezer to your chemo facility, but this takes time. You have to find out who the contact person is that will accept the freezer at your facility. Here is a link to the Rapunzel Project's website:http://www.rapunzelproject.org/
May 15, 2012 02:56AM Laura5 wrote:
Pamela, It is work, but I am sure everyone who used them will agree it was well worth it. Dealing with the caps was actually a welcome distraction. Good luck, it is all so overwhelming at first.
May 15, 2012 03:08AM Laura5 wrote:
Sian65, There are many of us in the US, and Europe as well, who care about losing our hair. It is about loss of privacy, and many of us feel, loss of dignity. Your remarks were very insensitive.
May 15, 2012 03:26AM mdg wrote:
Sian - it is a personal preference and personal choice however this thread is for people that want to find out about using them. It's not about vanity - it's about privacy and also normalcy. My 4 year old son will not have images in his mind of "bald and sick mommy". He does not even know I had cancer or what it is at this point. I felt no need to teach him the words "chemo" and "cancer" since I was stage 1. Now I have the choice to tell him when he is old enough and not scare him and he can see I am just fine. I returned to work after my disability leave and no one knew I had cancer - it was my choice whether I wanted to tell people or not. I returned to teaching aerobics 3 weeks after chemo with a full head of hair - my class never knew I had cancer and I did not have to teach a fitness class and stand in front of a full room of people bald. I was just "me" as I was before BC. These things were important to ME. Each of us has many decisions to make in the BC journey and this is something many people are interested in learning about. I preferred to spend my money on keeping my very long hair - not scarves. Again, a personal choice.
May 15, 2012 05:13AM Ang7 wrote:
I so agree with all of your comments ladies...
It was great to have the choice to keep a part of me that the doctors kept telling me I would lose.
With 4 kids, I also liked being able to tell them how much information I wanted to and not having to wear wigs/scarves.
We all choose what is best for ourselves and our families. Keeping my hair made me feel "not sick."
May 15, 2012 12:41PM - edited May 15, 2012 12:44PM by dancetrancer
Sian65 - I respect your choice to shave your head. Please respect our choice to save our hair. Please refrain from making judgements about what is indeed a very personal choice. A little sensitivity to other's feelings goes a long way in this world.
And yes, there is a 3 to 6% chance of permanent hair loss with certain drugs. Most doctors do not tell their patients about this. That was not a risk I was willing to take, no matter how small it was, if I had an option to prevent it from happening.
May 16, 2012 09:35PM Sian65 wrote:
May 22, 2012 06:59PM - edited Feb 15, 2013 04:53PM by Hortense
I am using Cold Caps after discovering their existence on this website. I started T/C chemo on May 8th and tried to use every tip I could find on chemo and Cold Caps. I filled a notebook with suggestions. The one I should have paid the closest attention to was to NOT chemically treat hair for three weeks before chemo. I have since learned the hard way that it is best to go into chemo with a bit of length of natural roots which are much stronger than hair that has been weakened by coloring, straightening, or any other chemical treatment. I foolishly lightened my hair six days before chemo and ended up with a lot of breakage months later, at the exact point between my new healthy natural roots (which thanks to cold caps grew vigorously throughout chemo) and the lightened area. It was totally avoidable.
2/16/13 I want to add that I kept my hair and look like myself. Cold caps really DO work.
I have to say the caps are very cold, colder than I expected. I was surprised when the first one was being put on, and after a brief moment of panic, decided I could do it. It does get bearable, especially with all the meds being given. I will use a double layer of moleskin on my forehead next time as my forehead did swell up a bit afterwards.
I went in prepared with two layers of long underwear bottoms and a comfortable elastic waisted exersize pant. On top I had a long underwear shirt, a long sleeve T-shirt and a medium weight cotton turtle neck sweater toped with a zip front fleece jacket. I sat in the chair wrapped up in a twin sized electric blanket which was lovely and comforting. My core body stayed warm, so warm that I didn't need socks, nor did it bother me to put my feet on frozen gel packs and wrap my toes with them during the Taxotere treatment's hour. I also iced my fingers in bags of frozen peas. I must have looked ridiculous.
I was careful to change my hair part every so often and I kneaded the caps as they were on my scalp to be sure they stayed in contact with my head as they warmed with my body heat and changed shape a bit. I have long straight hair and I was told to leave it hanging naturally as the caps were put on. I did pat and smooth it down before starting to be sure the caps would have the best contact. As I had been advised not to wash my hair for three days before treatment, it was pretty easy to get it to stay where I wanted it to stay. I did not wash it for three days afterwards, also as advised, which was not terribly charming as normally I love clean, shining hair, but I am trying to do everything to save my hair.
I figure, to get my hair back to the way it looks now, to the me I recognize, would probably take three to four years. If it even came back the same. I am reading that chemo hair comes back curly and that is definitely NOT me. Having cancer is enough, I do not want to be reminded of it every time I look in a mirror, see my reflection in a window or touch my head. Keeping my hair, if I can, will do wonders to help me fight this disease psychologically and to feel I am living as normal life as possible.
7/20/12 update - I finished my T/C treatments last week and while my hair has shed a lot and become considerably thinner in volume, I still have it. Most people would have no idea that my hair is thinner, much less that I have just gone through chemotherapy - unless I show them my poor abused left wrist with its angry veins, but that will go away. I am so glad that I found out about Cold Caps on this website, and that I was able to use them. They do work.
8/2/12 - Three weeks post chemo and I am feeling like myself again. My veins have healed and my hair looks amazingly normal considering all I have been through. I probably lost 35% of it to shedding, but I had a lot to start with so I look fine. I had colored my roots six days before starting chemo, which is not recommended, so some of that shedding is probably my fault. I now wish I had not done so. Roots are not a big deal, keeping hair through chemo is.
As for shedding, you will lose the oldest hairs. Don't panic. Cold caps help preserve the rest. I found that I started shedding at about three weeks after my first treatment - when most women go entirely bald - and had the most shedding at four weeks, just after my second treatment, then it slowed down although it did not end. I still shed, but I am now doing so fairly close to what I used to before chemo. I know that because I kept samples of what I lost during shampoos before chemo and during it.
My hair kept growing right through chemo, I have the dark roots to prove it, and I also have small bristly hairs coming in all over my head which are probably replacements for what fell out. It truly is amazing.
A tip for women with big heads like mine. Order some extra headbands, which are normally used for saving eyebrows, and have your helper wrap them around your head below the cold cap so that you won't lose hair where the cap does not cover entirely. In my case, at the nap of the neck and near my ears. By using them I have not lost the hair in those spots although I have read that others did. Fortunately, my helper had exeprience with the caps as she helps many women with them and knew that trick. It's a good one.
May 23, 2012 02:03AM LeesaAnn wrote:
A tip I want to share is about washing your hair. Before I get in the shower, I use a wide tooth comb to make sure my hair is tangle free. (I have long hair) I use a sulfate free shampoo, and it does not lather like regular shampoo. After I wet my hair I rub the shampoo gently over the top layer of my wet hair. I do not 'scrub' my scalp like I used to, in the past when I did that my hair would get all mixed up in lather and I'd have tangles afterward. Now I leave the ends hanging down and gently move the shampoo across my scalp. It doesn't take a lot of rubbing. I was amazed when I realized very little 'washing' was required to get clean hair. I rinse my hair and its tangle free. This is a really big help when you comb it afterwards, when you are trying to keep from pulling out hair. I use Kendra's sulfate free Platinum shampoo for color treated hair. It's very watery in consistency, but does a great job!
May 23, 2012 02:54AM Laura5 wrote:
Hortense, Just click "Add to My Favorite Topics" and you won't have to look anymore.
Your thoughts on the psychological aspect of keeping your hair were mine as well. Both the staff at my MO and RO's offices told me how they thought my positive attitude helped me throughout treatment. I told them I had a positive attitude because I had hair.
May 23, 2012 03:28AM BouncingBetties wrote:
Laura5, that is how I felt about keeping my hair. Losing my lashes and brows was hard and looking in the mirror made me cry but then I'd see my hair and look at my poor unused wigs on their stands and suck it up. It's also easier to move on after treatment when you have your own hair. My onc was so excited each appointment. He'd actually say "Look at your hair!" and smile the biggest smile. I ended up giving both him and my onc nurse info on my caps, plus several of the day care unit nurses and other patients who approached my parents and me. One lady was using the Elasto-Gel caps, like mine, when I had one of my last treatments and one of my nurses asked if I could come talk to her. I said, "You mean, show her my hair?" and she said "Yes, could you?" The other patient was sitting there in her cap and I hadn't put mine on yet, so she could see my hair. When I told her, she was so happy and relieved she almost cried.
I used Elasto-Gel Cranial Ice Helmets that I ordered online from Ice Wraps. I had six caps that came to just over $100 per cap with shipping and the exchange rate. I used a Coleman Party Stacker cooler with two large Cryopak ice paks and kept the paks and caps in my freezer for a minimum of five days before each chemo treatment.
I had 6 rounds of weekly Taxol and kept my hair. It thinned a tiny bit but only a bit. I didn't need dry ice or any special cooler for my caps.
The cap instructions said to wet your hair first but I have naturally curly hair that I straighten. My parents would help me with my cap changes and I would put the first one on as soon as my i.v. started and change them every 30 minutes or so. We'd put the warm caps in a bag until I'd made my way through the frozen ones. I'd leave the last cap on until my flush was done. I didn't need anything special for comfort, except during my first treatment after my week off my caps may have been in the freezer a few days longer and would be a bit colder - so an extra warm blanket from the warmer was helpful.
The education dept at my cancer centre loaned a set of the Elasto-Gel cold mitts and booties to me for my last 5 txt. And it did help with the neuropathy a bit. Although, boy, was I chilly when I first put on the cap, mitts and booties. And I was entertaining the other patients and day care unit nurses.
I have to say that as my hair grew in, some of it was straight (which I had wished for my whole life) but some of it is still curly. So, while I kept my hair it still can affect your follicle shape, colour, etc. I had trouble dying my hair four months after chemo ended. I used an ash shade, having read comments on the board about hair coming out too red or brassy from golden or red tones. Imagine my surprise when ash did the same thing, but found that John Frieda's Precision Foam Colour (colour 4N) worked wonders. I think it works because it's meant to cover 100% of greys so it was able to colour my Taxol roots.
For anyone who's onc has said no to the use of cold caps, do some online research and find reputable medical studies supporting your desire to use the caps. My onc said that he had no concern regarding scalp mets, as some oncs claim, but did suggest I purchase a wig in case they didn't work. So a great team, Elasto-Gel and Ice Wraps helped get me through chemo with hair intact. I only recently complained about a bad hair day but I'll never complain as much as I once did because I am happy to have my hair!
May 26, 2012 11:04PM LAZ wrote:
I just started using Penguin Cold caps yesterday for my 1st of four chemotherapy treatments TC every 3 weeks x4. Has anyone had trouble getting the caps to -32c with the dry ice method? I followed instructions perfectly, but I had to take some of the caps from the keep boxes and put them in freezer bags to get them cold enough.....and they were very unevenly cooled even with plenty of kneading. Now I have to wait a couple of weeks to see if it is working. Its so much work, I hope its not for nothing!! Thanks for any advice.
May 26, 2012 11:14PM dancetrancer wrote:
LAZ, we have no trouble getting ours cold enough. In fact, when DH first pulls them out, they can be -40 Celcius. He has to let them warm up!
Are you putting the caps (in their keepers) into the dry ice 3 hours before chemo starts? We get 100# dry ice the night before, get up at 5:30 a.m., and put the caps in the coolers with the dry ice then so that they are ready by 8:30 a.m. We actually usually don't get started until around 10:30/11:00 a.m. after waiting for bloodwork, etc. to be done and premeds started. They are definitely cold enough.
We keep the caps in their keepers in the regular freezer between treatments.
Note we get 100# instead of 80# b/c we found that near the end of the 4 hours after chemo the caps were getting too warm.
May 26, 2012 11:37PM LAZ wrote:
Thanks for the reply Dancetrancer. I am new to this discussion board, in fact this is the first time I have ever posted a question! I got the caps the day before and put them (still in their keeper boxes) into my freezer. I put them on dry ice, 80 lbs in the recommended coolers at 1pm. My infusion was delayed and did not start until
6:30 pm. We were really worried that they were going to be too cold and get damaged and at first we thought the thermometer was not working right. We had to randomly go through the cooler and find the coldest caps and put the warmer ones in ziplocks too cool them down. Yesterday was 90+ degrees so maybe that didn't
help. I hope too much damage was not done and I didnt just give myself a mohawk or something! I will try more dry ice and pack them earlier next time....if I still have hair!
May 27, 2012 12:11AM dancetrancer wrote:
LAZ, welcome! (Sorry I didn't say that earlier!) I find it so odd that you had the caps in dry ice for 5.5 hours, and they did not get cold enough...I am perplexed!
And I have to ask...your infusion started at 6:30 p.m. in the EVENING on a Friday night? I'm amazed an infusion center would be open that late...mine is closing the doors at 5 p.m. or earlier if they can, LOL! That is unusual!
I hope your hair has survived as well!
May 27, 2012 05:07AM LAZ wrote:
My infusion center closes at 9pm. My appointment was at 3:30pm but I think things got delayed because they were a little befuddled by the caps. I was supposed to be put in a private room, but one was not available when I arrived. It was a long day ! Hopefully things will go smoother for infusion # 2.
May 27, 2012 01:27PM Laura5 wrote:LAZ, Dance said "Note we get 100# instead of 80# b/c we found that near the end of the 4 hours after chemo the caps were getting too warm." That is your probably your answer right there. That huge delay at your chemo center, interferred with the timing of the dry ice . I would make it VERY clear before my next infusion that you are following a strict protocol and it is crucial to stay on schedule, as delays have a very negative impact on your very expensive caps. Unless there was some emergency that day, your 3 hour delay was ridiculous.
May 27, 2012 02:51PM ckk wrote:
I also got 100# every time, in slab form. The extra slabs were broken up and fit around the boxes in the spaces that the intact slabs didn't reach. Laz, it occurs to me that part of the trouble might be that you got your caps only the day before use, in hot weather. Perhaps they didn't get cold enough in your conventional freezer first? Are you now storing them in the freezer?
I don't know if caps ever "go bad", but if it were me, I'd get a small amount of dry ice and cool down one cap like you're about to use it. If it's at the right temp after 3 hours in the cooler, you're good. If not, I'd call Geralyn ASAP.
May 27, 2012 03:05PM dancetrancer wrote:
LAZ, I hope things go better for sure next time for you. Can't believe they infuse until 9:30 p.m.! Those are some hard working nurses!
Y'all my dry ice guy told us that you lose about 50% of the dry ice cooling ability in the first 24 hours. We asked b/c my 3rd TCH this past week was supposed to be Tuesday, but when we arrived, dry ice and caps ready, we had to delay my tx by one day b/c of blood work issues...can you imagine? So, we put the caps back into the regular freezer for that day, and at the end of the day went back to the dry ice guy and had to buy 50 more # of dry ice to make up for what we had lost. Oh well, it's just money (and time and stress!). The caps were perfectly cold the next day, we had plenty of dry ice.