Cold Caps Users Past and Present, to Save Hair
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I agree with this!! Too expensive!!! I am loving that I have hair still, but so conflicted since there are so many other things I need to spend money on and could do....it seems prohibitive. I am grateful but torn. So good when the Swedish Dignicaps come out in the US because I think that will be cheaper and more easily done. One application for whole treatment each time. It plugs in!! Has to be better!! I am grateful, don;t get me wrong.... but it is a LOT of money for a teacher to pay and I am sure others who can't even afford it...at all.
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Hello friends and fellow coldcappers,
I have posted this survey several times this past winter, and am getting ready to conclude it, but with a number of new people on this site, here is one more invitation notice to have a go at it.
Here is the explanation:
As a researcher, former cancer patient, and a participant at the bc discussion boards, I have become interested in learning more about patients' reactions to the information they receive as they are diagnosed and presented with treatment plans that involve chemotherapy.
This interest has led to the development of a survey that asks about experiences with patient education materials provided at oncology centers across the nation. This is a formal study, and the research protocol has been approved by the Institutional Review Board at Brown University, where I am on the faculty of the Division of Biology and Medicine.
The survey is anonymous and brief. It will take you about 15 minutes to complete the survey.
To participate in this research, here is the link:
http://www.surveymonkey.com/s/PatientEducationMaterial
Your participation will add to the body of information on this topic and is intended to contribute valuable data regarding patient education materials for oncology patients.-all the best,
Marjorie
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Oh, Annie. How exciting that you are finished today. I can't even imagine how excited you must be. No more of the poison into your system, no more steroids, etc. CONGRATULATIONS!!!!! You have been a blessing on this blog with your constant positive attitude.
Gotta tell you that I'm about ready to give up on these caps. They are just so much work and again I have the mats from not washing regularly and not combing routinely too. Don't know how I'll deal with them tomorrow. I did order the Nutrients shampoo but haven't seen it yet and hoping it arrives today.
Still haven't lost hair from the top (well a bit).
Have a great one ladies!
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Arlene,
I know it can be frustrating at times...but you are doing so great...
You can do this!
I'm hoping and praying that things get better for you!
Tori
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Tori: Thanks so much for the encouragement. I just keep thinking that even after chemo is over, I have to continue with all the cautions for months and my hair grows so fast that it might be back to a decent length by that point. I will continue on as long as I have hair and even if it falls out, I will continue with the caps to stimulate the growth. I definitely already have new hair coming in which is pretty weird but I'm happy.
Horrible SE day and I actually got up to let the cat in and pretty much passed out - it was quick and I fell over the couch and my hubby says "what was that all about" - I said "I got really dizzy" so he picked me up and put me properly on the couch and told me to just stay put.
Thanks for your support Tori and all the great information via email too!
Arlene
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Hi everyone,
Had my year-out followup today. While I was in the registration waiting area, the woman next to me was on her phone, clearly having a conversation with PCC about how to get started. I looked at her, mouthed "cold caps?" and she nodded. I nodded enthusiastically, gave her the thumbs up, and held up some of my long hair. "It works!" I mouthed. Her face lit up. I told her I was the first person at the cancer center to use them; looks like she might be the second! I was able to give her my card so I can talk to her this week.
But wait, it gets better. At my appointment, my doctor came in, we reviewed my bloodwork etc. And then she said "Tell me again about the cold caps. Do you buy them or rent them?" and she took down all of the info.
And to think, exactly a year ago I was starting chemo, hauling in those ice chests, the staff kind of tolerating my hijinx but not yet on board (but they would be before I was done with them!), and my doctor telling me every week through three chemos that my hair was going to fall out that week (which, of course, is the only thing she'd ever seen before).
A year later, I'm sitting in the exact same chair in the exact same room, and my doctor is advocating the caps and the patients are finding out about them. I am so glad this horrible journey can have this wonderful, wonderful side!
It was a hallelujah day.
Cheers,
Susan
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Today I am day 53 after staring taxotere and cytoxan. I had an appointment with the genetic specialist and a different medical oncologist to review the BRCA test information. I had never met this Med Onc. She could not believe it was my hair and I only had 1 more chemo to go. I said "cold caps do work". She said "no they don't.....none of the patients I have seen except you have kept their hair". I thought this was so odd. Are people using them wrong? I know some people don't have success, but it seems like from what I read most people have some thinning but keep most hair. I know there are different results for different types of chemo too.....I just told her "if people know how to use them correctly they DO work and I know lots of other women that have kept their hair too". So frustrating! She did say she doesn't discourge her patients from using them but I can't imagine her encouraging someone to use them if she thinks they don't work. They don't have a freezer or anything at that hospital where as the hospital I do chemo at does have 3 freezers and caps on site.
On another note...I treated myself to some human hair extensions for about $50 and I LOVE them! OMG! The color is spot on my color. I trimmed them up and I only put two in (there are 6 in the package). It looked so good! I wish I had known more about them before starting chemo as I never had thick hair to begin with and it looked so good today! I am excited to have them. They are light weight and easy to use. I got them at a local beauty supply store. They usually suggest teasing the hair before you put them in. I was not going to risk that so I just clipped them in and they stayed in for hours until I pulled them out tonight. My hubby didn't even notice them because the color was perfect. Check it out if you feel self conscious about your hair thinning. I probably won't use them every day as I am off work now and it's not a big deal for me but when going out or getting dressed up and wearing my hair down I will definately use them. I could even wear them with my hair pulled back in a pony tail and it looked natural. So excited!
Annie: Congrats girl! Good for you!
Arlene: I am sorry your hair is not cooperating better. I hope you can keep going with it and maybe the new shampoo/conditioner will help. I have thinner hair I guess...not matting or clump issues.
Seb: One doctor at a time hu? At least she is finally interested! That's a step in the right direction!
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I am DONE! No more chemo, no more cold caps. I have my hair, a bit thinner, dirtier, and a different style, but I HAVE MY HAIR!!!
I am off to bed...been a long day, but I just want to continue to encourage everyone!
Love to you all,
Annie
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CONGRATS to you Annie! You did it! Happy dance for you!
Go...get some much needed rest!
Tori
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HIP, HIP HOORAY ANNIE!
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Yea Annie!!!!
What a great feeling, huh?
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Yeh! Annie -- isn't being done (with hair) a wonderful feeling!
Colleen
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Congratulations Annie! Woo hoo!!!! Get some rest! You are done!
mdg: I encountered that. When I finally drilled down, I found two things: nurses/docs from about 20 years ago when "cold caps" were basically hair bonnets filled with ice, like an all-head ice pack; or (with apologies to those here to have had success) the Elasto-Gels, which seem to have variable results.
When my doctors and nurses saw the PCC version of cold cap, they'd never seen them before, and the results convinced them they are worth recommending. I know that the PCCs and the Dignicap system are both in clinical trial(s); does anybody know if there is a clinical trial of EGs? It would be so helpful to see the success rates and also establish the differences in the protocols.
Cheers to everyone,
Susan
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Hi Susan - great question on the clinical trials.
I took a quick look at clintrials.gov (official FDA website) and saw three trials registered for EG - two were old (2008) and do not seem to be active (one for alopecia, one for hand/toes and prevention of neuropathies). Northwestern Univ has another study, not enrolling yet, that seems to be active for limbs.
I had heard, through this thread, that there were many cold cap studies. I checked clintrials.gov for their status and found a Swiss study that is enrolling and will be completed in Dec 2012.
The other enrolling studies must be small, physician based studies that have not been registered with the FDA. Anyone else have any insight to these physician based clinical studies?
Annie
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Both the Penguins Cold Caps and the Dignicaps are being studied and UC San Francisco. The best cap up to date information is the Rapunzel Project site. They have links to recent articles and TV broadcasts. Makes an excellent place to start for those searching out information for themselves or others.
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Hi all:
Good news. I managed to get the mats out of my hair and didn't even lose that much....hooray. Guess I'm just dealing withwhat everyone is dealing with (regardless which caps you are using) which is loss in the back. Seems the majority of the caps just don't fit as well in the back. Realize I am only through TX#2 and have a long way to go but still hopeful. I do admit that I have been using the curling iron (VERY LOW temp) on my bangs or they would be an absolute wreck. Logically, I can't see where that is a problem since the hair is basically dead and I am doing it so far from the roots....thus far, no problems since I have lost minimal hair on the top and sides.
I'm staying very hopeful!
Round #2 SEs almost gone too.
Arlene
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Hi Arlene my wife Liddy uses 2-inch elastic straps about 24" long with velcro at both ends to press down the EGs to make contact all over the head. These were suggested by motherofpatient and they actually work quite well. Hang in there and good luck!0
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Thanks Sam. I'm using the velcros too but still not getting them quite tight enough. How is your wife doing?
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Arlene - we used the Cold Caps Eyebrow strips and put one on my eyebrows and the other velcroed on the nape of my neck. These go over the caps and the velcro strips, so in reality, I am not sure if this strip on the nape of my neck was cold enough. Psychologically, it made me feel better. So we did it!
I am done with my caps...so we will see how it goes from here. One of my friends just stopped by ( I have only seen her twice since January 10th) and she could not get over how great my hair looked. She was convinced that I had lost zero hair...it was a good reminder that people really have no clue about other peoples hair.
Hang in there...it is working.
Annie
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Just did my weekly washing and didn't lose any more than I would have if I counted up all the every other day washings but it is definitely SO much thinner. I do have a bald patch at the crown which does surprise me because that spot has been getting really cold. Tough to comb through though so I'll just let it air dry before I do much more combing and maybe just let the curlies take over.
Arlene
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Hi everyone:
Annie: Hooray for you--a big hurdle we have come thru!!
Sorry to hear of he harsh side effects some of you are experiencing. There are diff SE's for diff protocols.
Again If anyone in the greater N.Y./N.J./or Conn. area will be starting cold caps soon and want to have my 14 caps forwarded, please let me know. I had someone lined up and her Onc. discouraged her, so sorry about that! I am fnished and can send them out as soon as needed.
Evereyone: Please advise on what kinds of tests,etc. you have had to tell if treatment is working and if cancer is gone. My Onc.says I will get mammograms and ultrasounds, but nothing else. Please advise.
Thanks,
Nancy
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Nancy - I will have blood tests. No scans planned. Not sure if this is the norm...but my onco said that scans do not save lives. Not really sure what that means....but it makes my mind wander. I did have a BMX and chemo at a stage 1A.
Annie
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Nancy~
I will have mammograms on the other breast and "if I start to have symptoms, ie: cough that won't go away, hip pain, then they will do scans." Well, I have pain in my bones now but she said that is due to the chemo...
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Congrats Annie!!! I have a big scare going on 34 days PFC--I am lossing a great deal of hair!! Yesterday lost a clump of about 30 hairs!! Today during my gentle comb getting ready for work--lost about 20 random hairs---what is going on?? Has anyone else had this problem? Really nervous--have worked so hard to get this far with hair---would hate to be concurred at this point---):
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Hi! My first treatment is Monday. I bought the elasto gels cap. Do you like it? I am very nervous about this whole process!! Any info would be much appreciated!
Michelle
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Sashasz~ I have had a few "major" sheds since final chemo....felt the exact same way as you! Tomorrow is 14 weeks... And just now feeling like shedding is light. Not to worry....I think( just assuming) that there are hairs that hung on, but they are weaker ...those strong young hairs will be fine but the older ones keep shedding past PFC. Promise you, you'll be fine.
I love having my hair...it needs some TLC, and to thicken up again...but it's all there (no bald spots or anything) I feel like a Chia Pet... It's sprouting everywhere now :-)0 -
Michelle: Stick with the protocol and you should do just fine. Just keep in mind that you'll more than likely lose hair regardless which caps you use. I am using the EGs too and TX#3 is coming up soon and definitely losing hair but still have way more than I would have without the caps (w/o I would be bald by now) and I even see some new hair coming in which I find odd.
Ladies: When does the leg hair fall out? Mine is still coming in and I'm ready to not have hair on my legs (or underarms) so I don't have to shave.
Good luck and do keep us posted.
Arlene
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Arlene - hair on legs for me stopped growing pretty fast. I have been on 3 tx's so far and have only shaved maybe 3 times since 3/2 when I started. Same with under arms. It seems like everyone is different with hair loss patterns and shedding patterns from what I can tell.
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Darn: The one thing I don't care about might keep growing.
I haven't lost the down under hair either. I was really hoping to not have to shave my legs but with 4 TX's remaining, I'll probably still lose the other hair.0 -
Hi Arlene:
Sorry you are having so many problems w/ side effects and hair shedding. But it sounds like the top is hanging in there which is what happened with me. I had a big bald strip underneath, and a few patchy spots on the crown at the end. Mine started growing back later than yours tho, just after my final chemo. I'm 4 months out and I actually got a couple compliments on my hair last week! I'm going in to my hairdressor once/week for a careful flat ironing and she makes it look really good. I lost the hair on my legs and arms sort of gradually; about the 3rd chemo I just noticed it was finally gone. Underarm and hair down under came out earlier for me...
LmFlynn, I have a little of the Chia pet syndrome too! Sashasz--I shed until about 2 1/2 months PFC--I think it's the final effects of your last treatment. It should slow down.
Mplace, welcome and good luck! Lucky
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