Cold Caps Users Past and Present, to Save Hair
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tmb173 - You look fabulous! Thank you for posting these pictures. You look healthy and so does your hair. Its length suits your face beautifully. No one would guess from seeing you what you have been through so recently. Congratulations! It was well worth all the effort. Best of luck as you move forward.0 -
Jianchi - for information please go to:
Also the Doctors TV show archives for their May 2, 2013 show which had a segment about cold caps.0 -
Tmb your hair did well with the caps! You would never know you did chemo!!! Yay! Another success!
Jianchi I have some info about my experience on my blog.0 -
tmb, you look BEAUTIFUL!!!! No one would know what you have been through! Soooo happy for you!!!
big hug,
curly0 -
Thank you mdg. I saw the video on penguin cold caps. I have questions about how to store them in my own freezer and how long to rent them as chemo is on and off.0 -
Jianchi, check with your treatment facility to see if they would accept a medical freezer from the Rapunzel Project. I had my chemo in a facility with a freezer, and it was so much easier than dealing with dry ice! The caps were simply left in the freezer at all times, and I didn't have to lug them back and forth or buy dry ice. I don't know how quickly the Rapunzel Project could provide a freezer, or even if they have funding available at this very moment, but it's worth a try.
As for how long to rent the caps, you don't have to tell them at the time of rental - you just return them when you're finished with chemo. Do you know your chemo regimen yet?0 -
Hi PatinMN,
Thank you so much for your reply! I will ask the medical facility next week. When I look at the price on penguin cold caps, they can be rented monthly. I do not know the schedule of my chemo yet, and worry about it being too expensive to rent the cold caps - $580/month (?). I was told that my chemo will be on and off for 6 months.
Thank you very much!
J0 -
Jianchi, the monthly rental price of the Penguin cold caps goes down substantially after 3 months - I think to $150 per month. Still, if you need them for 6 months that is a lot of money. There is a type of cold cap that you can purchase - Elastogel caps. Someone on this board used them very recently and they worked pretty well for her. Others have used them over the years with (generally) less success than the Penguin caps. The woman here who used Elastogels recently is (I think) 4sewwhat. You could try sending her a message, or she will probably check in here soon.
If you're going to have chemo over 6 months, I would guess that you may be starting off with AC (adriamycin and cytoxan). The adriamycin is tough on the hair, and success with cold caps is maybe 50/50. When you know for sure what you will be getting, be sure to post here and others can chime in with their experiences. I had taxol weekly for 12 weeks, and the caps were extremely successful for me - I barely lost any hair. That is pretty unusual.
If you haven't done so already, I would highly recommend reading as much of this thread as you can - go back at least 6 months or so and read forward. I read the entire thread before I started chemo (well, actually it took me about 3 weeks and I started chemo before finishing reading), but back then (September 2012) there were a lot fewer pages!0 -
PatinMN,
Really appreciate your reply! I will read the thread as much as I can. I will have a better idea on what chemo I will be getting after seeing my medical oncologist.
Take care!
J0 -
Hi Jianchi,
It was me that did the Elastogels. Thanks Pat! I would be happy to share and be of any help that I can. You can buy them for a little under $600 for 6 caps and last I heard they were shipping for free. I also know someone that may have some to sell and I can check with her if you would like.
In addition to the caps you would need a cooler and dry ice for each treatment. Many places discount the ice when they know what it is for.
I consider myself to have had very good success with the caps. Figure I shed about 25-40%. it is so hard to really tell and some spots shed a lot and some spots not at all. I finished chemo on August 13 and stopped shedding a couple weeks ago. I have already colored at about 7-8 weeks post chemo with a semi perm color and am going to get it cut this week. I have trimmed bangs along the way.
I colored May 18th, right before surgery and then had my first chemo in June 14. I also got a hair cut shortly before starting chemo.
I have more pics to post to my blog but have been sorely lacking time between work, the kids and going to rads everyday!
Please PM me if you like and I will be happy to give you my contact info and be of any help that I can as you move forward.
I also hope everyone else is doing well at what ever point they are at along this too well traveled road.
Best Wishes for all.0 -
tmb, thanks for posting your photos. I think it makes it real for others.
I was telling a lady at church that I was about to finish chemo and that I was using caps, and she said she used a cold cap in the 90s when she did chemo. It was nice to talk with someone who was not skeptical when I told them I was doing chemo or give me confused looks when I explained the cold caps.
Last chemo is his Wednesday. My eyebrows are significantly thinned and I don't feel comfortable without drawing them on (which still looks bad). I am always studying peoples eyebrows these days, noticing the shapes, colors and thickness. Eyebrow envy.
Saturday night I went to a big swing dance where dancers from other states came to my town for a workshop weekend. I would have been too embarrassed to go bald and it would have been impractical to wear a wig. I did see one bald lady there and it didn't seem to stop her, and I didn't see a port scar so I don't know her story. I appreciate feeling like I can do normal things like this without being the "cancer chick". It was a workout dancing with those dancers...I look forward to building my stamina up.0 -
4sewwhat,
Thank you for all the great information you provided me. I am interested in the cold caps, but I am doubtful how persistent I can be ig chemo wears me out. I would like to know how much the person you know is selling her for if not too troublesome for you.
I am glad that it worked out pretty well for you.
Take care!
J0 -
Hello ladies. Just finished my last Taxol on Friday and sent those caps back early Saturday morning! It felt so good to see the inside of my freezer again. Can't wait to fill it up!
For all the newcomers and wonderers here was my experience: started A/C this mid-July. Had 4 treatments every other week. My hair did pretty good - started shedding right before the third treatment. Started Taxol beginning of September - 4 treatments every other week. Taxol tried to take me out! I'm not kidding - eyebrows (lost about 70%) eyelashes (lost about 80%) and the hair on my head (now probably have 30% or less). I was shocked and so sad. I didn't know going in that AC/T is the hardest to fight with the cold caps - it sure was. I'm glad I still have some hair, but these past 8 weeks on Taxol took a lot out of me.
The cost of the caps didn't go down after 3 months. It was $508 every month - for a total of $2500 since the very end of June (my chemo start was delayed 2 weeks). Don't forget to cancel the auto-pay on PayPal after you send them back.
I'm glad I tried to save my hair. I'm pretty sure my children enjoyed the science fun with the dry ice every other week more than I did wearing those caps on my head. I wish the results would've been better. Maybe with a different chemo drug it would be.
Best of luck to everyone - whatever you decide.0 -
annie,
Thank you very much for sharing your experience. I guess the result varies with different people. Maybe i should prepare myself by buying some fake eyelashes...0 -
Annie - I had AC, too, and ended up stopping the caps right before my 3rd treatment. I was losing hair by the fistful, not just shedding. I knew there wasn't going to be enough hair to try to save after another week, let alone several more months of chemo! I was sad, but I did know going in that AC was very harsh and not many people have good luck with the caps on it.
I still follow this thread and am so pleased to read about people having success! It makes me happy that this option is even out there, and that there are women like us who are willing to try. Even though they didn't work for me, I would have always wondered had I not tried.
Good luck to those of you currently capping or about to! I'm cheering for you.0 -
annie you should check on what you were charged. I don't remember the exact amount but the fee went down significantly the 4th month. I shared caps with another lady . I started first then she started 3 weeks later. I rented them and put them on my card. I trained her family after a former user trained me. Her hubby picked them up and dropped them off. I returned them. I shared the supplies I already bought. We split down the middle. Worth it if you check.0 -
I haven't posted - or even read updates - in several months. Busy living life:-) But want to offer encouragement for those thinking about using cold caps. My MO and surgeon have referred a handful of women to me; some of them have gone on to use the caps. In honor of Breast Cancer Awareness month, I've written a letter to the editor of our local paper offering info on cold caps. I have also revised, updated, and reformatted my research bibliography on the science of cold caps. If any of you would find it useful to share with friends, health care providers, or institutions, please PM me and I'll send you a PDF.
On another note, I got my hair cut last week. I'm now 10 months PFC. The stylist cutting my hair does not know my history. She made my day when she told me she needed to thin my hair to cut in the long layers I wanted:-) Best of luck to all. Cold caps made a real difference for me.0 -
301724 - How good of you to write your local paper about cold caps!0 -
Today as I finished my last carboplatin and taxotere infusion my nurse said there was another patient at VCU who started chemo recently and used the caps. She asked me if she could give her my contact info and I said sure. They had to run out for more dry ice, which sounds stressful to me. If you are reading know that I am thinking of you and hope you are doing well -- and PM me if you want.
We should both write letters to our oncologist asking them to accept a freezer from the repunzel project.
If anyone has some facts about cold caps they would like to share with me to include in my proposal to vcu please pm me.
Marsha0 -
Hi cold cap users. I thought I'd post my recent experience. I have my 3rd round of TC tomorrow. Had virtually NO shedding btw rounds 2 and 3. Had some definite shedding after round 1. But I still feel like I have a full head of hair, and no one is the wiser. But here;s the thing. Somehow got this (unrelated) rash on the back of my neck, and hands, etc., so I put my hair up in a ponytail - feeling very confident since there was no shedding. Guess what? About 100 strands shed out today. So the lesson learned is - - keep babying the hair. Hope that helps someone out there. Good luck all of you! So proud to be part of this pioneer group!0 -
Hi Cold Cap Users. I am new to this site, but I wanted to share my experience with using Advance Cold Caps. I just had my third round of chemo (taxotere, carboplatin and herceptin) at the Cancer Treatment Center of America in Zion, IL last week, and I still have a full head of hair!
I'm completely ecstatic about it!! I too, didn't want to put on a brave face and lose my hair. I didn't want anyone to know that I had cancer unless I told them. My husband offered to shave his head if I lost my hair, and I said, "Go right ahead and shave your head. I'm keeping my hair!" I just had my hair trimmed the day after chemo and the stylist was absolutely amazed at how much hair I have. I did have some thinning after my second treatment, but I think it was because I let my head get too warm during a workout the day after a treatment.
Anyway, I love the Advance Cold Caps because they are so easy to use. Last treatment, I used the caps myself without any help at all! I froze my butt off, but the caps were easy to put on and replace in the cooler.
I'm actually going to start being an Advance Cold Cap representative for people in MD, PA and VA who want to keep their hair. I just want to help as many people as I can, because for me, keeping my hair is such a blessing and it makes the whole chemo treatment time bearable!0 -
hi..
read this thread, some amazing responses related to cold caps, but i wonder...
spending on 2 or 3 wigs vs spending on cold caps, which one is better?
living with partially thinned out hair...partially lost becos of chemo and partially saved because of cold caps...also which one is better cost wise.
my chemo begins next month.0 -
One more tip - another cold cap user told me that kneading the caps (I use Penguin Cold caps) both before putting them on the head, and every 10 minutes when on the head will help to spread the cold out evenly and hit all the hair follicles. We were much more diligent at this after the 2nd tx, which is why, I think, I had so little shedding.
jewels, that is awesome news! Did you do anything noteworthy that can help the rest of us. I did work out after my 1st session, head got too hot, even spraying it with water, so I decided to stop until this is over.
BanR - there is no guarantee with the cold caps, for sure. It seems the TC chemo responds better to the cold caps than the ACT when you read these threads, so you should take that into account. I would read as much of this board as you can. The tipping point for me was that 6-8% of those that take TC will NEVER grow their hair back. If you go on other boards you will read the heartbreaking stories of women who are 2 years out from chemo and still don't have hair growth, or those that do and it is coming in white or some odd color. Again, a personal choice, that is best made with as much information as possible.
Keep reading and asking! Good luck to you! Starting my 3rd round of TC today. For those of you that pray, please keep me, and my hair, in your prayers!! Thank you.0 -
Good to hear more success stories! Keep them coming!
Jewels - it is a personal preference. The difference with having hair and having a wig was a huge thing to me. I exercise daily and teach aerobics....I would have had to do that bald.....can't see me wearing a wig to exercise and teach class. The other thing is once you get done with chemo you do have hair and you can move on with hair...not wait for a year for it to grow back. The other thing that MO's won't tell you is the risk of PERMANENT hair loss from chemo - specifically taxotere. I know of several women who have suffered permanent hair loss from chemo. They will never have a full head of hair again. Yes, cold caps are expensive. It is a personal choice.0 -
BanR - My hair never thinned enough that anyone but me noticed the difference. I started with a full head of long hair and had I not used cold caps and simply gone bald, it would have been close to four years before my hair would have grown long enough for me to look like "me" again. Short hair is not flattering on me and I would look awful with no hair - bald is not beautiful in my book. Plus I did not want to spend years, as my hair slowly grew back in, constantly being reminded that I had been a cancer patient each time I saw myself in a mirror or touched my head.
All of us have at least 100,000 hairs on our head. I probably lost far less than 30,000 in spite of shedding long after my chemo ended. I had to baby my hair, but it wasn't hard and it wasn't for long. I couldn't brush it vigorously, pull it back into pony tails or lighten its healthy new roots which grew continuously throughout chemo, nor blow it dry with hot air or wash my hair with hot water, but the trade off was absolutely worth it for me. Facing breast cancer looking like my familiar everyday self and not like a bald headed poster person for cancer made the whole long ordeal much easier. I felt confident and positive psychologically throughout my extensive treatments and recovery no matter how tired or sick I felt bodily.
To each her own, but I know that using cold caps and being able to keep my hair made me feel as if I was in charge of my life, not cancer. Had I been forced to go bald I would have felt that cancer had the upper hand. I firmly believe that staying positive is powerful medicine and keeping my hair, looking as I have always looked when I saw a reflection of myself in a mirror or store window, was key to my never feeling down or feeling the need to cry. I remained my normal glass-half-full self which also made the cancer experience much easier on my family as well.
Of course I am aware that my disease could come back, but I didn't need or want an extra reminder in the form of living with no hair at all through months of chemo, then having to wait more months for my hair to begin to regrow, then have to watch it grow at the glacial pace of half an inch a month for years. Instead, a year after all of my active treatments ended, I feel happy, healthy and strong again and am enjoying life and appreciating having my normal full head of long hair.0 -
Hortense-Once again, thank you for your inspiring words! You so eloquently capture the many benefits gained in saving our hair!!!0 -
Hortense-Thank you for your inspiring words! They've captured the many benefits gained in saving our hair!0 -
Agreed Hortense. I felt completely normal with my hair. I think my mental outlook was far better because I kept my hair. My MO said to me after my last chemo "you are not like my other cancer patients - you don't look or act like you have gone through chemo. Why do you think that is?" I said "I kept my hair (felt and looked normal) and exercised daily". I do think it was ONE thing I could control when everything in my world was spinning out of control. I returned to teaching aerobics about 3 weeks after finishing chemo with my hair. I NEVER had to tell the entire class I had BC. No one knew. I was not ready to "go public" and tell everyone I know that I had BC. I wanted to move on with my life.....so I did - with my hair!0 -
Hi Everyone,
Just started TC chemo on Thursday and used cold caps. Kind of a pain, but hoping they will work! Used the company Chemo Cold Caps. The rep even came down to Atlanta for my first session to make sure we knew how to do it right. Reading this board really helped me make the decision. Thanks ladies.0
