Cold Caps Users Past and Present, to Save Hair
Comments
-
ndmk - You are at the normal time for heaviest shedding, and the normal time for doubt and fear. Try not to worry. Losing 100, even 200, hairs a day is not going to leave you without hair as you started with at least 100,000 on your head, and possibly more. Even at 200 hairs times 30 days, you have only lost 6,000 hairs. Shedding will slow down as soon as most of the oldest hairs fall out, though most likely it will continue at a slower rate for a while. Try to accept it as a natural part of saving the rest of your hair.
It is very upsetting to shed. I know it bothered me a lot to always have hairs sliding off my head and stuck to my clothes, as well as to see them everywhere around my house and in my car, but I kept full coverage in spite of my losses. During chemo, it often appeared to me that I had less hair than it eventually turned out I actually had, and that was discouraging at the time. That was because usually my hair was oily from not being washed thoroughly and not blown dry. It lay flatter and was pretty awful looking, plus I had two bald spots where I had gotten frostbite the first time I used Cold Caps. I felt pretty sorry for myself one day so I went to google to find out how many hairs each of us have on our heads and the answer put my losses in perpective: 100,000 - 150,000.
Once chemo ended I began to wash my scalp a bit more normally, though still very carefully. Throughout chemo I'd just been wetting my hair in cold water and patting on shampoo, then mushing the hair to get it sudsy before rinsing gently so as to not stress any follicles. I am fairly sure I had build up of some sort as my hair and scalp didn't feel right. After chemo, I did some research on shampoos and bought some Nioxin shampoo # 4 for Chemically Treated and Obviously Thinning Hair (I was lucky to find it at TJ Max). It did an amazing job of cleansing my scalp and leaving it feeling clean and fresh.
After I got my scalp clean and began to blow dry my hair with cool air, I was surprised to find my hair looked a great deal better and fuller. I also had much more hair than I had thought I had. My only regret is that Nioxin has parabens in it, so after using it up, I am back to using DermOrganic brand again. However, now I can wash my hair and scalp more normally without fear of pulling any hair out.
Please keep in mind that women not using cold caps would have been completely bald by three weeks after their first dose of T/C. But, you still have your hair and you are well past your third dose! You are just shedding your oldest hairs which the T/C weakened. Those follicles will rest, then regrow. I have a dense crop of new hairs that are about 2" long right now at almost six month post final chemo. They are quickly filling in between the hairs I kept and making the overall volume look thicker. The rest of my hair kept growing steadily all during chemo, and I have the dark roots to prove it.
Penguin Cold Caps do work to save hair. Some of us lose more volume than others through shedding - I was one who lost about 35%, but what we lose comes back pretty quickly and thickly. It fills in what we saved and gets us back to looking as we did before chemotherapy far faster than if we had lost all of our hair and had to regrow it.
Again, try not to worry.
0 -
ndmk - You are at the normal time for heaviest shedding, and the normal time for doubt and fear. Try not to worry. Losing 100, even 200, hairs a day is not going to leave you without hair as you started with at least 100,000 on your head, and possibly more. Even at 200 hairs times 30 days, you have only lost 6,000 hairs. Shedding will slow down as soon as most of the oldest hairs fall out, though most likely it will continue at a slower rate for a while. Try to accept it as a natural part of saving the rest of your hair.
It is very upsetting to shed. I know it bothered me a lot to always have hairs sliding off my head and stuck to my clothes, as well as to see them everywhere around my house and in my car, but I kept full coverage in spite of my losses. During chemo, it often appeared to me that I had less hair than it eventually turned out I actually had, and that was discouraging at the time. That was because usually my hair was oily from not being washed thoroughly and not blown dry. It lay flatter and was pretty awful looking, plus I had two bald spots where I had gotten frostbite the first time I used Cold Caps. I felt pretty sorry for myself one day so I went to google to find out how many hairs each of us have on our heads and the answer put my losses in perpective: 100,000 - 150,000.
Once chemo ended I began to wash my scalp a bit more normally, though still very carefully. Throughout chemo I'd just been wetting my hair in cold water and patting on shampoo, then mushing the hair to get it sudsy before rinsing gently so as to not stress any follicles. I am fairly sure I had build up of some sort as my hair and scalp didn't feel right. After chemo, I did some research on shampoos and bought some Nioxin shampoo # 4 for Chemically Treated and Obviously Thinning Hair (I was lucky to find it at TJ Max). It did an amazing job of cleansing my scalp and leaving it feeling clean and fresh.
Once I got my scalp clean and began to blow dry my hair with cool air, I was surprised to find my hair looked a great deal better and fuller. I also had much more hair than I had thought I had. My only regret is that Nioxin has parabens in it, so after using it up, I am back to using DermOrganic brand again. However, now I can wash my hair and scalp more normally without fear of pulling any hair out.
Please keep in mind that women not using cold caps would have been completely bald by three weeks after their first dose of T/C. But, you still have your hair and you are well past your third dose! You are just shedding your oldest hairs which the T/C weakened. Those follicles will rest, then regrow. I have a dense crop of new hairs that are about 2" long right now at almost six month post final chemo. They are quickly filling in between the hairs I kept and making the overall volume look thicker. The rest of my hair kept growing steadily all during chemo, and I have the dark roots to prove it.
Penguin Cold Caps do work to save hair. Some of us lose more volume than others through shedding - I was one who lost about 35%, but what we lose comes back pretty quickly and thickly. It fills in what we saved and gets us back to looking as we did before chemotherapy far faster than if we had lost all of our hair and had to regrow it.
Again, try not to worry.
0 -
I am going to try the Cold Caps. DH and I have done a lot of research on this subject and feel it is worth a try. UCSF just completed a study on cold caps and sent me information on their study. 68% would overwhelming recommend the cold caps. A few others said it was a lot of work but it did the job it is supposed to do. Not one of their patients required a wig. There next study ( hopefully this year) is to gain FDA approval. Ladies, this is huge because maybe insurance companies will pick up the cost. Right now it is expensive and a lot of work if your treatment center does not have the right freezers, but it will only be six days of my whole life (at least I'm hoping I will never need chemo again). I'm praying for a cure so nobody will have to make a choice to use the cold caps or not. Wishing everyone here a speedy recovery!!
0 -
I START AC CHEMO IN 3 WEEKS AND I WOULD DO ALOT TO MINIMIZE HAIR LOSS. WAS READY TO GET COLD CAPS THEN MO STATED HER CONCERN WAS COLD CAP WOULD PREVENT CHEMO FROM GETTING TO BRAIN. THE CAPS MUST AFFECT THE BRAIN BECAUSE THEY ARE USED IN OTHER CONDITIONS. COMMENTS?
0 -
Hortense thanks so much for your post today, I needed that! I have had minimal shedding up until three days ago. Now more hair is coming out when I brush and I'm finding hairs everywhere!! I'm going for round three of ACT on Tuesday. Reading your post comforts me to think I might just be shedding old hairs right now although my scalp has been feeling tight and tingly lately.
0 -
forest, I imagine your MO was concerned about chemo not getting to your scalp, not your brain. The chances of increasing mets to the scalp are miniscule. Everyone's MO on this thread has researched the caps and have given their patient the green light. A few ladies had opposition from their MO so they switched MOs.
0 -
Forest,
My MO's office didn't say anything about the brain, but they did say it could affect the scalp. I have read somewhere ( and I'll try to find it ) that there is less than 1% that have cancer in their scalp after using the cold caps.0 -
hope49 - I washed my hair at the kitchen sink (sprayer worked great!)...couldn't bear the thought of standing in the shower with the cold water splashing me...brrrrrrrr for sure!
Regarding the bands, I did not order them b/c I didn't want the extra expense, and I figured since I have long hair it would cover any loss behind the ears/back of the head. I did lose that hair but didn't even realize it until it started growing back. It is now curly under my normally poker straight hair. I don't mind at all...actually kinda like it b/c it gives me some body/nice waves underneath my straight hair.
YMMV.
0 -
Rhonda - so glad you'll be trying the caps! I also had the same thought - the 4 long tiring days were definitely worth having my hair now!
Forest - I will echo what the others have said. The cold caps keep the chemo from going to the SCALP b/c they reduce blood flow superficially to that area. So yes, there is a tiny risk of mets to the scalp - around 1%. Compare this to a 3 to 6% risk of permanent hair loss...that's what convinced me to do the caps.
They do not limit chemo to the brain, and that is a moot point anyways b/c to my knowledge, chemo never gets to the brain b/c of the blood-brain barrier.
0 -
Having second treatment on thurs and wonder if could wash hair tomorrow being that it would be 4 days out from treatment or should I wait till next mon after treatment.? Also I seemed to read where extra gel bands are good to have but they didn't have anymore so I was wondering if there is any substitute that I could get. I read on the boards about velcro straps at walmart someone use. Would that be a substitute or not? Also where are the extra straps put on the head?
0 -
Question for you, ladies...did you use the caps on non-treatment days cold from your freezer? I saw that on sebm9's write up and my consultant said it could help...called stimulation therapy. I did 2 caps 30 min each right out of the freezer the 2 days after tx, then skipped today since I washed my hair. Just wondering if anyone else did anything similar??? Trying everything I can to hang on to any hairs I can
.
Dancetrance, thanks for the tip about kitchen sink -- I never thought of that!0 -
Grace533, You don't want to wash your hair any closer than 3 days before then wait another 3 days after. I can't think of any substitute for gel bands, I think you are confusing them with the regular bands. The gel bands are frozen and are placed next to the perimeter where the cap does not cover.
3131, I never used a brush, only a very wide toothed comb.
Hope, I did not use the gel bands with my first treatment. I lost hair just above my ears and at the nape of my neck. I have shoulder length hair so it did not show. I ordered them and used them for my subsequent treatments and my hair started growing back during chemo. I did not use cold water when I washed. I don't know what Penguin says now, but when I used the caps they said to use tepid water.
0 -
I didn't hope49. I just couldn't bring myself to do it! I'm impressed by those who did...
0 -
ndmk-Many have used the cold caps successfully with that same regimen-TC X 6.
BTW-Protein is protein. There is absolutely NO difference in the success of those who have used cold caps based on whether they eat meat or are strictly vegetarian. I have helped quite a few vegetarians using the cold caps and they had great results!
hope49-A woman I was helping with the caps gave me the pH Miracle shampoo because she didn't like it. I used it and didn't like it either... I wouldn't recommend because it has peppermint oil in it which can be irritating to eyes and skin. Taxotere often causes eye problems-tearing and blurred vision. No reason to add to that. The woman I got the shampoo from switched to Trader Joes Nourish, at $2.99 a bottle, and did wonderfully after 6 treatments. You don't have to wash with cold, cold water-tepid (room temperature) is fine. Read the shampoo instructions on my website http://penguincoldcap.net/. You should also wash 2 times per week. This keeps the scalp clean and removes any toxins. The headbands are essential in retaining hair around the temple and nape areas. While it's too late to prevent the loss as a result of your first chemo, you can resume growth in those areas.
0 -
hope, I did pull them out of my freezer from time to time but it was summer and quite hot. I don't know if it made any difference but it helped with my anxiety a bit! I think once i figured out I wasn't going to lose all my hair I stopped bothering. I lost quite a bit, but i still have a fuller head of hair than a lot of women, chemo or no chemo!
I did 6 treatments of taxotere carboplatin.
Re protein, I was told 80-100 g/day. I couldn't do that without eating meat and dairy but that's just me. That was to support my system re the chemo, not the pccs in particular.
Rhonda, I'm glad you're doing them. It's a PITA on those 6 days, and to some degree the other babying you need to do. But I imagine having to deal with a wig every time you poked your head out your door for -- what, 8 months? I mean you have chemo for 4 then it takes awhile to grow afterwards, right? - - is a hassle as well. IMHO it was great not to feel like a cancer patient, and thanks to the PCCs, I didn't have to.
0 -
3131 - my scalp felt tight and tingly at times too, and I have read posts by others who reported the same feeling. You should be fine.
Rhonda2 - have you looked into getting a freezer donated to your center by the Rapunzel Rroject? www.rapunzelproject.org The hospital I went to had one and it made using cold caps much easier for those of us using them as we could leave them there in it between treatments.
Forest and Rhond2 - I am PMing you both my doctor's phone number as she heads the Breast Center at New York Hospital where she has been conducting an onging study on cold caps which she has shared with other doctors at other hospitals. It might be helpful if you doctors spoke with her as she is highly regarded professionally.
0 -
Hortense,
Thanks for the info. I'm waiting for my MO to do a little research and tell us "no", but so far we have not heard back from him. I'm also gathering up research to show all the good cold caps do, so your information will be an added benefit.0 -
Also, where I live we just got a new cancer center and my MO will be moving in about six month or so. I'll ask about the freezer donations and see what they say.
0 -
Rhond2 - Please tell your doctor that being able to keep our hair is powerful medicine. It truly is. Looking normal, the way we are used to seeing ourselves, helps us to feel good about ourselves and feel emotionally stronger as we go through the unpleasant treatments designed to save our lives. It's not vanity to want to keep our hair.
Keeping mine has helped me stay positive and strong throughout treatment. I have never once felt the need to cry or felt depressed. I credit that to my looking somewhat normal even on my worst days - dirty hair, ashen skin, chemo exhaustion and all. Now that I am past all that, I can look in the mirror as I brush my hair and see myself recovering steadily. Having hair that looks as it always has done has let me confidently move on, back to my normal life.
I think many women here feel as I do when I say that if I had gone bald, I would have crumpled emotionally. I would have felt both humiliated by its loss and defeated by cancer. Having to wait for hair to sprout again and grow back slowly would only have been a painful daily reminder that I had been so sick, and it would have taken several years to get my hair back to where I like it. The long regrowth period would have been a constant and unpleasant reminder of the illness. As it is, I look like myself and most people have no idea I just finished extensive cancer treatments. That's as it should be.
0 -
Thank you. I plan on doing just that, plus give him the information that you PM'd me.
0 -
Hortense, Well said! My sentiments exactly.
0 -
Well said, Hortense!! Agree with sentiments about hair. Walked into RO office today and he said oh, you have real hair, you must have used cold caps! I laughed and said it's either my hair or a really bad wig.
I think it's everything you do to maintain any sense of normalcy that helps get you through this emotionally. I didn't do a port because I only had 4 treatments - again another very good decision for me - since I don't have to get one removed now.
Tomorrow, I'm going for the clinical rads trial to see if i qualify to reduce rad duration from 6 to 3 weeks.
The more control you have over your treatment plans the better your emotional well being.
Good luck to all you ladies just starting out!0 -
I AM RESEARCHING WHETHER AC CHEMO CROSSES BLOOD BRAIN BARRIER BECAUSE MO CONCERNED ABOUT RISK OF BRAIN METS. LOOKS LIKE DOXORUBICIN DOES NOT GET TO BRAIN BUT CYCLOPHOSPHAMID CROSSES THE BLOOD BRAIN BARRIER. I AM AWARE OF RESEARCH PROVING SCALP METS NOT A BIG CONCERN. I AM REALIZING THAT LOOSING MY HAIR IS MOST OF MY ANXIETY AND STRESS. I AM 68 YEARS OLD AND NOT VERY CONCERNED ABOUT APPEARANCES BUT BEING BALD IS JUST DEVASTATING. I LIVE IN A VERY AFFLUENT PHILADELPHIA SUBURB WITH AN EXCELLANT CANCER CENTER AND NO ONE HAS DONE COLD CAPS!!!!!!!! MOST OF THE CANCER PATIENTS HERE ARE EDUCATED AND HAVE GOOD FINANCIAL RESOURCES. SO JUST DO NOT UNDERSTAND WHY IT IS NOT BEING DONE. I AM PRAYING FOR WISDOM AND DISCERNMENT. HAVE ALL OF YOU USED PENQUIN COLD CAPS CAPS? COMMENTS PLEASE.
0 -
Forest,
It appears after some further research on my part that some chemo drugs do cross the blood brain barrier (my bad, sorry). I believe cyclophosphamide is one of those, according to this article:
http://www.sciencedaily.com/releases/2009/12/091217115830.htm
Researchers also hypothesized that chemotherapy drugs known to cross the blood-brain barrier would be a bigger threat to brain cells than drugs that do not cross the blood-brain barrier. To test the hypothesis, they investigated the effects of routinely used doses of cyclophosphamide and fluorouracil, which do cross into the brain, against paclitaxel and doxorubicin, which do not.
Really, though, the question that has to be answered is can the caps actually cool the brain itself? The cold would have to penetrate the bony skull plus whatever hair, etc is on the scalp. That just seems like a ridiculous thought to me and not possible.
Apparently, the authors of this study agree with me and cite another study to back up their thoughts:
Fear of undoing the effect of chemotherapy on (micro) brain metastases by cooling seems unrealistic as the current cooling techniques do not cause a significant decrease in brain temperature [60].
from: http://annonc.oxfordjournals.org/content/16/3/352.full
You will of course have to make your own decision. The reason many do not use caps in the USA, IMO, is b/c they are expensive and not covered by insurance. They are used widely in Europe. In addition, I think docs and nurses also discourage use b/c
1) they have not seen success with them (old scalp cooling methods failed),
2) it's a pain for them to have the extra fuss/equipment in the chemo room
3) it's not their hair
Yes, I have used Penguin Cold Caps.
0 -
Forest, The majority of women on this thread have used Penguin. A few have used Elastogels, and a few from the UK (where the caps are offered as part of chemo treatment) have used Pacman I think. Penguin are the best. If you decide to use caps, go with Penguin.
It does not matter how well educated or how affluent your area is, the reason no one at your center has done cold caps is because no one has heard of them. They have only been in the US for a few years. When I used them in the summer of 2011, I think there were only 100 or 150 women using them in the US, now that number has skyrocketed. My onc, as well as many others had never heard of them. They did their homework, and wished us luck. Good luck to you.
0 -
I used Penguin -photos and such on my blog. I know the previous scalp cooling devices did not work and many MO's think these are the same. Another reason they don't encourage it is because we take too long in their chemo chairs and it creates a commotion with the coolers and such. I also think they have the mentality that "I am saving your life and all you are worried about is your hair".... Well what they neglect to tell you is that with taxotere there is a 8-15%of permanent hair loss.....The data varies, but I had lunch today with one of my friends that is dealing with this. She had long, thick, beautiful hair. Now she has thin hair that won't grow longer than an inch and a bald spot on the back of her head. Ican'teven begin to understand what she is going through. People also don't realize this is NOT about vanity. This is about dignity and a sense of privacy. I don't want to shout my medical diagnosis to the entire world. When people have AIDS, kidney disease or heart conditions - they don't go around carrying a large sign telling the world. When you are bald from chemo- it's like shouting from the rooftop "I HAVE CANCER".
0 -
mdg - that is just awful about your friend.
0 -
Forest, I used Penguin cold caps and I'm very glad I did. I was 60 years old at the start of treatment, and my hair is not long or particularly beautiful, but as others have said, just the privacy aspect of keeping my hair made a world of difference to me in my daily life. is there a reason why your MO is concerned about brain mets? By the way, my facility has a medical freezer from the Rapunzel Project but the docs and nurses do not even mention the possibility of using cold caps to save hair! You have to find out about it on your own, and thus the cold cap room goes unused most of the time. (It's a separate small room with the freezer, the chemo chair and a couple chairs for helpers.)
0 -
Forest - I am 64, so close to your age. I understand how you feel about wanting to keep your hair as I felt the same. There is no reason you should not try to save it just because your doctor is not familiar with cold cap therapy. Plenty women on here have been the first at their centers.
You also might consider traveling to New York for treatment. I did that and I live about as far away from there as you do. My husband and I would stay at a hotel for two nights so that I could have chemo one day and get a Neulasta shot the following day. It worked very well. I also hired an experienced helper who was recommended by my center to handle the cold caps. She was expensive at $750 a day, but absolutely lovely, supportive and worth it. I Private Messaged you the center's contact information earlier today.
From what I have heard, patients being treated with T/C do better at keeping their hair than those on the harsher AC-T regimen. There have been ladies on here who have done pretty well with AC-T, perhaps one might chime in.
Cold caps are VERY cold, colder than you can imagine. The first five minutes are not fun at all, but as soon as the scalp chills down close to freezing they become bearably cold. They may not be for everybody.
Also, it is natural with cold cap therapy to shed the oldest hair strands during and sometimes well after chemo, so some hair loss is inevitable. A few lucky people hardly shed at all, but most do. Some can lose from 10% anywhere up to 30%, even 40%, of the total volume of their hair - as I did. Shedding in itself can be a very stressful process as hair seems to be constantly falling out for months.
If I have learned anything since being diagnosed, it is that along with being patients with a nasty disease, we are consumers. That means we can take our business elsewhere if we don't like what we are being told. I voted with my pocketbook and took my business to another doctor and hospital. I would do it again in a heartbeat as I got the same chemo treatment and I got to keep my hair and my dignity.
Good luck!
0 -
Hortense-Your words are wonderfully written! The benefits to well being, which one gains by using cold caps are extremely under rated. I posted a great article a few pages back. It was one of the best I've read-comprehensive overall. In the article it touches on the subject of 'why' cold cap use is so little known.
0
