Cold Caps Users Past and Present, to Save Hair
Comments
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Just wanted to post a final report on my experience with the Elastogels. I finished chemo on 9/20/12 (4 x T/C). I still have my hair. Think I lost around 35%. The shedding has slowed to what I experienced pre-chemo. Some shedding, but not much. The worst shedding occurred three weeks after my first treatment and going into my second.
If choosing the Elastogel's, follow the PCC protocol. Place the caps in dry ice the night before your treatment. ***It is very important to change caps every 20 minutes on the first use of each cap, then 15 minutes on subsequent uses (after re-freezing).*** Any longer and the caps are not cold enough. I ordered 4 caps for my 2 hour treatment. I suggest getting 5 if your treatment is 2 hours or more. This will ensure colder temps once rotation begins. I wore my caps for 1/2 hour before treatment, all through it, and then 3 hours after treatment.
For those who may not know, you will rotate your caps (wearing and re-freezing) throughout the day. It is important that you go in order, giving each cap the max time to re-freeze after having worn it.
I used 1 large cooler with a solid bed of dry ice at the bottom (8" or so deep). I put enough dry ice in gallon sized zip lock bags to fill the inside of the caps. I placed the caps onto the bed of dry ice (leaving each cap in its own zip lock). I then placed a zip lock bag of dry ice into the cavity of each cap, and also laid other zip locks of dry ice on top. Worked very well, and the zip locks made it easier to handle the dry ice as I rotated caps throughout the day.
On the first use of each cap on chemo day, I had to allow about 10-15 minutes for defrosting. The caps were very stiff after being in the ice all night. Once rotation began (2nd use of each cap, etc.), I did not need as much time to defrost, if any.
Try to have a test run before your treatment. Work out the kinks beforehand!
Also, the dry ice was donated to me. It certainly won't hurt to ask. My benefactor was happy to help, and indicated that the amount I needed was incidental in the big scheme for his business
Cold caps worked for me! I would have spent as much on a really good wig and instead I have my own hair.
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stayinhappy - Congratulations! What good news that you still have your hair! Your benefactor must be a lovely person indeed.
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Looking for some advice.......after my first TC treatment using cold caps, the front of my head apparently got too chilled - skin turned red and was tender/numb - is now flaking and still tender two weeks out. As I look ahead to next treatment next week, it has been suggested that I use gauze over the tender part. Has anyone done this? How much gauze did you use? How did it work?
Thanks!
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I had a one-year follow up with my Breast Surgeon at Dana Farber yesterday. What a difference a year makes! Last year when I asked about cold caps after having done some research, she said that they didn't work, and thought that I shouldn't bother. One year later, she recommends them to all of her patients, and has had quite a few use them! I love it.
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301724 - there are several previous posts in this thread on using gauze. You can do a search for that word and specify the "help me get through treatment" forum and they will come up. The search button is at the bottom of the menu on the left side of the page. I've had 5 of my 12 weekly treatments and one time the top of my head was pretty tender for a few days, but it wasn't red or flaking. The other times I've been really careful about changing the part in my hair each time a cap is applied (or pulling it straight back with no part) and haven't had the problem. One other thing I've done at the suggestion of my local cold cap "rep" is to attach small pieces of panty liner to the moleskin on my forehead, to extend the protection over all the small baby hairs at the edge of my hairline. It sounds like your problem is more extensive than just at the hairline area though. I know there are more experienced folks here who probably will have good suggestions for you! Good luck!
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Hi here in South Australia have had one chemo 2 weeks ago used cold cap only 3 more chemo treatments. I have hair loss all over scalp no bald spots yet(I have thickish hair) I hope the loss slows ? Do users think it will work.
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Willdo, Yes, the caps do work. Don't know what kind of caps you are using, but be sure to follow Penguin's protocol. If not using Penguin, some have recommended changing out caps every 15-20 minutes to keep them at the proper temperature. Good luck!
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Willdo results can vary also based on what type of chemo you have. I think AC is much harder on the hair.
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Hi ladies -
Heard from my MO last night and it looks like from my onco type I will be doing chemo. I am node negative but onco type 32. Where do i start. I meet with the MO on Thursday should I wait until then to contact penguin cold caps?0 -
Dakota, I'd go ahead and contact them. While success varies with the particular chemo protocol, you're likely to get some benefit no matter what.
On another note - to previous users - today is day 16 post first taxotere/cytoxan for me. I've started to shed body hair. Today was a hair wash day - first time I've noted any hair in the shower/comb - maybe 25-30 hairs. Is this normal? What should I expect over the next few weeks? I have second treatment on Thursday. Thanks!
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301724 - I just replied at length to your private message. I hope it helped answer your concerns.
But, to also answer here, I had the same flaking problem after getting frostbite spots from the caps being too cold the first time. We had to be sure the caps were exactly at the correct temperature each time and my helper started using two layers of gauze over the flaking spots to protect them. She also checked my head carefully between cap changes and used gauze on any spots that she noticed were getting darker than surrounding areas. She changed the way my hair was parted periodically to avoid any scalp area getting too much exposure, too. I had no more trouble.
As to shedding, you are starting the period when we all shed. Try not to let it get you too nervous. Treat your hair carefully as if it was very delicate, because it is right now. Comb through it gingerly and as little as possible, dont brush it. Wash it in the coolest water you can tolerate, don't scrub it, wash it as gently as you would a newborn's, and don't blow dry it with warm air, only cool. Some of us buy a dryer with a cool setting. Mine cost $20 at Target.
I would literally wet my hair, put the shampoo on my hands, rub them then just mush my hair with both of my hands, sort of patting it instead of washing it, simply to avoid tangling or putting any undue pull on the chemo stressed folicles. I knew from the bubbles that the shampoo was getting everywhere. I'd leave it on while I showered to let it soften the dirt and oil, then gently rinse it out. I never scrubbed my scalp the way I used to to get it clean. Surprisingly, the patting method worked. My hair always got clean no matter how foul it was from not being washed. My hair continued to grow throughout chemo and I now have roots that need coloring that are over 3" long three months PFC.
Shedding is nerve wracking especially when you start finding hairs trailing all over your clothing and seemingly everywhere around your house. I was told by my nurse that shedding starts between the 18th and 24th days and I found that to be true. I hadn't grasped what "shedding" means and was surprised by how much fell out. I googled "how many hairs are on a head" to remind myself how many hairs we all have on our heads - between 100,000 and 150,000 - and realized that I could lose an awful lot before I would go bald, and tried to stay calm.
Keep in mind that, while you are just starting your shedding period at two and a half weeks after your first chemo, you are only going to lose your oldest hairs uniformly all over your head, no matter how long you shed. People who did not use cold caps during their first chemo are going entirely bald overnight at the same point in their treatments. I'd rather shed, even if I end up with a thinner volume of hair, than be bald.
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Thanks, Hortense! PM'd you also but really appreciate your thoughtful reply!
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We used both types of caps. Penguins are by far the better choice because they have several tabs and flaps that allow for a tight fit to your head size and shape. Advance which are elasto gel, come in only 3 sizes and they gel doe not hold the temp for more than 15 minutes and is very uneven across the cap. Before going with Adv google Sandy Molenhouse and Mike Sweeny and Katria charity. They are opportunists and NOT medical people.
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I'm 33 days out from my first chemo (weekly Taxol) and still no shedding! I will have my 6th of 12 treatments on Friday. I have read that weekly Taxol is easier on the hair, and I guess I'm living proof of that. My gray roots are very prominent now - I must get to an Ulta store and find Colormark. For those who have used Colormark - can you use it on wet hair? I end up going to work with a wet head most days, either having washed my hair or rinsed it in the shower.
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Hi - new here. Background horribly emotional, verbal abusive marriage during the period both parents fell ill and passed away. I saw a mass and felt I had to get through a divorce first. Single now and enjoying every day.. BUT in September, 2009 I was diagnosed with stage 3b triple negative locally advanced interductal carcinoma. They did a biopsy that wouldn't heal and broke through the skin. What a mess. And stinky. I was started on Taxotere and Cytoxin October 19, 2009. Two weeks to the day I washed my hair and it all went into a ball on my head and couldn't be combed.. as I touched it, it just came out. All of it. Finished Tax and Cy in Feb, 2010. Had 4 rounds of adryomycin. Had 32 rounds of radiation June, 2010 finishing July, 2010. September, 2010 had left modified radical mastectomy. Jan, 2011 had recon (a pedical TRAM flap). Everything was going great. (By the way, April, 2012 I just had hair touching the bottom of my ear lobe.. not happy).. Around this time, I had a horrible fall walking my dog. After a few weeks I was still limping. May 15, 2012 I went for a normal followup at my oncologist. She saw me still limping and sent me for a CAT and bonescan on May 21, 2012. Two days later on my 60th birthday, I was called in and told IT was back. It was in my hip. She said she couldn't do very much for me and referred me onto a woman (witch doctor) that was doing a trial for triple negative. Met with her and she told me trial runs two years, and every week on Monday I would have to be in New Brunswick for chemo (taxotere).. She giggled when I asked about hair. I didn't find this amusing. At this point I almost had hair touching my shoulders - almost 3 years... I turned to Sloan Kettering... She has put me on 3 months of Vinorilbene. I bought the cold caps even though she said I wouldn't lose my hair. Info says you could lose it or some. I used the ice caps and have not lost a hair. BUT NOW I AM TERRIFIED. She knows I'm single and don't want to be stuck in the house.. but I don't want to hurry up to the funeral home either. My choices according to her are either Carboplatin and Gemszar or Taxol. I AM TERRIFIED. Aside from the physical effects of no hair, I find comfort and receive relaxation by twirling my hair.. and twirling a wig doesn't give you the same sensation. Do any of you out there know if the cold caps work with Taxol? According to the company they do, but I don't know if they are just telling me that... Confused... Any help appreciated.. Very scared... p.s. I'm sorry if this is hard to follow.. latest scan shows that it's in the femur, lower back a little, 10th rib.. and a lung nodule which now is 3 nodules. I have NEVER smoked, eat healthy, no processed food, exercise, am 115 pounds.. and have maintained a wonderful attitude. Everyone keeps saying you look so healthy.... HELP...
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mermaid, your situation does sound pretty scary, but I know that plenty of women survive for a long time with mets. I hope you can find some helpful advice from others in your situation on other discussion boards on this website.
As for cold caps and Taxol, YES, they do work. See my post immediately above yours. I am getting Taxol weekly and still have all my hair.
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Thank you so much for responding so quickly!!!! Great news for you!!! The doctors don't seem to understand that hair is very important as even if you don't feel sick, you go in the bathroom and pass the mirror and the reminder is THERE.. Even if you don't feel sick, you ARE... And I wish the doctors did not poo poo them like they do. Thank you and have a GREAT night.. and a GREAT life. XO
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mermaid_101 - You have had a very rough time, all in all. My heart goes out to you. Good for you to keep your head high. I hope things go better for you from now on.
Hair is very important, I agree with all of your reasons completely. However, will Memorial Sloan Kettering (MSK) let you use the caps? I had my lumpectomy at their NYC hospital last winter and was set for chemo in May, but when I said I wanted to use cold caps I was told they "absolutely" were not allowed there. After failing to change anyone's mind, I picked up my skirts and flounced across to NY Hospital's Breast Center where quite a few women have used them and had my chemo there instead.
I went back to MSK for radiation, but to one of its satellite facilities, and was just back at MSK in NYC Thursday for follow up with my surgeon. She was both surprised and interested that I had kept my hair and asked me lots of questions about my experience - like "Did they hurt?".
She said that she had spoken to my oncologist at NY Hospital (sometime over the summer) who had sent her all sorts of information about cold caps and about the results so far of the non clinical trial she is conducting on them - I am taking part in it. I gathered that Sloan is looking into cold caps now and she indicated that it may eventually allow them after some testing.
Perhaps if you make enough of a fuss it will help. Go to the top if you must. I am almost finished with a letter to my surgeon about cold caps as I felt more needed to be said. I am fairly sure she will share it or at least its content with others. I am also going to be writing the head of Sloan Kettering in NYC and at the Satellite office I went to. I think the more the hospital hears about why women would like to use cold caps the better.
My surgeon was actually quite surprised to hear that in May when I called Penguin about renting caps, that I was told it had also had inquiries from four other women from MSK in May about them. That meant five of us, patients from her hospital, that month alone wanted to use cold caps. I opted to leave to be able to use them - taking all that yummy insurance money with me. Did the others stay and go bald? Leave like I did? Or choose not to have chemotherapy, as I almost did? That last question made her shudder.
It was encouraging to hear from her that MSK might be considering allowing women to use cold caps, maybe you will be the catalyst that pushes them into action. Good luck!
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Hortense, my daughter had the same experience, one hospital against, the other uninformed but eager to learn. Onc doc said she could use them but they won't work. After she finished and still had hair, his practice got a Penguin freezer and have been doing it ever since. Pegnuins are the best out there - even temps and hold the cold.
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Calling all ladies who used Elastogels...I received a call on Monday from a women interested in cold caps. My chemo center had given her my number. She cannot afford Penguin and is interested in purchasing Elastogels and using dry ice. I used Penguin and a freezer, so I don't have the info she needs. She told me her computer just crashed so if anyone can talk to her, please PM me and I will give you her phone number. I tried PM-ing ArleneA and stayinhappy but have not heard back from either of them. She is due to start chemo very soon. HELP!
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Part of your reply is true. I used Elastogel Coldcaps so far, yes. Did the doctor sanction it? She kind of scoffed. She said MSK does not believe in them, they have not done any testing on them and therefore can't say "to go ahead and use it" but she would not stop me.
I have been told the biggest reason any place doees not want you to use them is because you need to bring your ice chest along with you and they don't want the extra piece of furniture around.
I have been using them, I get some looks from other patients. Sometimes in the waiting room, people ask if I am going to have a picnic. I tell them it's full of wine.
I have not seen anyone else using them, although the nurses tell me that they do see them on occasion.
Did you use yours with Taxol? That's crucial for me to know..
Thank you Hortense for replying!!
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p.s. The doctor said she goes to school to learn about cancer/oncology, she doesn't go to learn about how to keep your hair. WHY can't we get it through these doctors heads that many more women would seek treatment and earlier if they didn't have the additional fright of losing every hair on their bodies?
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I did not have Taxol, I had Taxotere/Cytoxan, so I can't tell you much, but quite a few ladies here have had it and used cold caps successfully.
I had the definite feeling from my MSK surgeon, Dr Heerdt, this past Thursday that Sloan Kettering was looking into them now as a realistic posibility. After she told me that she had spoken to my oncologist at NY Hospital about cold caps and been sent information about the non-clinical trial running there, she told me that she wouldn't be surprised if Memorial started running tests with them also which I thought was great news. So clearly, there has been recent medical staff discussion there about cold caps.
Back at the end of April the MSK oncologist I had seen told me several times, and with emphasis, that I "absolutely" would not be allowed to use them, that the hospital would not allow them if I brought them in, would stop me in fact. The reason for it, when I asked why, not was not medically based, but was just that cold caps therapy was such a "proceedure" between the caps, the helper(s) and the ice and that they didn't have the space. I thought that was a ridiculous answer considering all of the private rooms I had been put into by myself for various other "proceedures" and left to cool my heels in.
However, nothing I said made a difference - "we won't be disruptive; we won't make a mess; I'm paying for them myself". She was also reluctant to let me ice my hands and feet to try to prevent neuropathy and nail damage which was annoying as she had made such an issue about possible neuropathy. I had to ask three times before she said I could.
As she wouldn't budge on the use of cold caps and I was scheduled to start chemo with her on May 1st, I called Dr Moore at NY Hospital who told me she had 38 women at her Breast Center who had used cold caps already, and that she was running an informal trial that I was welcome to join. So, I cancelled at MSK and started chemo May 8th at NY Hospital instead.
I am so glad to hear you are being allowed to use cold caps at MSK and I wish you much success! You may be the first to do so there. I'm proud of you! You are breaking the ice.
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Hello Ladies,
Just a note to let you know I just sent the following to the Editor of UpToDate, a service for physicians. It's amazing the disinformation that's out there!
"Hello,
I am writing to question the following:
"Although scalp protection through cooling or tourniquet has been reported to minimize delivery of chemotherapeutic agents to the scalp thereby potentially decreasing the risk of hair loss, case reports of cutaneous metastases or spread in these settings prevent general recommendation for their use. Because chemotherapy-associated hair loss is transient and completely reversible after cessation of therapy, adequate counseling and psychological support before and during therapy should take precedence over the use of such devices. (See 'Decreased drug delivery' above.)"
While your article goes on to cite evidence stating that cutaneous metastases are rare, your statement that "chemotherapy-associated hair loss is transient and completely reversible" is untrue. There is an increasing scientific literature on permanent hair loss (Tallon, B. et al. Permanent chemotherapy-induced alopecia: Case report and review of the literature. Journal of the American Academy of Dermatology, 2010: 63(2):333-6), with some reports indicating a rate of 3-6% for some chemotherapeutic agents (Sedlacek, S. M. Persistent significant alopecia (PSA) from adjuvant docetaxel after doxorubicin/cyclophosphamide (AC) chemotherapy in women with breast cancer. Annual San Antonio Breast Cancer Symposium ,December (2006): 14-17.)
Your statement fails to acknowledge this evidence and thereby fails to provide patients with complete information on which to base treatment decisions."0 -
I am amazed seeing photos of women that say when they finished their chemo and look at their hair. I was 6 months out at least.. before I saw even 1/2" of hair. It came in so wavy that NO brush or anything could tame it until it grew. I finally have it touching my shoulders (after 2 1/2 years) so this is a concern... I'm sorry...
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This is the link to Elastogel products and their descriptions:http://www.elastogel.com/product-catalog/cancer-care/hypothermia-products
The link for Elastogel distributors is http://www.elastogel.com/distributors
They can also be found on Amazon and eBay.
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Really new to this going to see my MO tomorrow. Question do the caps fit in a regular freezer ?? Is a cooler enough?
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Thank you makingway. I am still hoping someone who used them will PM me so I can give them her contact info. She really would like to speak with someone who can give her pointers on Elastogel caps and using dry ice. I can't seem to locate anyone to help her.
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Dakota212 - My hospital in NYC had a large freezer donated to it by the Rapunzel Project, just for cold caps. Penguin shipped my caps to the hospital which put them in the freezer for me. They stayed in the freezer all through my treatments and were packed and returned to Penguin by my wonderful helper when I was done. My helper also brought dry ice in a large Coleman cooler each chemo day which she used to be sure the caps could be chilled to exactly the temperature needed.
Have you read through the www.rapunzelproject.org website? It donates freezers to hospitals that do not have them. Its site has lots of information, as does the Penguin Cold Cap site. If you haven't spoken to her yet, I suggest you call Geralyn, Penguin's distributor here in America, to ask questions. She answered a lot of mine when I first looked into them.
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Hello girls, im just popping in to say hi and give some encouragement , i used PCC's with dry ice, 16 treatments A/C x 4 and Taxol x 12 and i kept my hair, i would say i lost about 60 % of it. Now keep in mind i had 16 treatments! So my hair should have been knocked out 16 times.. Instead i just shed everyday... Those who didnt know me thought i just had thin hair,
i used Latesse on my eyebrows and did not lose them.. Silica vitamins is what Frank Fronda had me take and i swear by them,specially if you are on T/C .. One day at a time and soon you will be 2 and a half years out
Love and hugs to you all
Chey0
