Cold Caps Users Past and Present, to Save Hair
Comments
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Hi everyone, I did not wear mascara, wore it for the first time last night. My thinking was most mascaras have chemicals/metals like deodorant and thought that may increase the incidence of lash loss. But then again, many people lose their lashes up to 6 weeks PFC. Today is one month PFC for me...yea!!! Feeling more myself every day....my hair is also not shedding nearly as much...but seems like a little more than pre- chemo.
Cheyenne ...it was great to hear from you. I remember reading all your posts and know you were on a tough protocol...so glad to hear your success.
Re: scalp mets.....the medical community should be ashamed to make statements that are not clinically proven or studied. Anecdotal information is just that. All research that has been done..and granted done in Europe mostly, and retrospectively ...shows no difference for those that have worn caps and those that did not.
Day 85....;-)0 -
Oops counted wrong.....Day 91! The days are flying by now!
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Glad the days are flying by...91 is alot of days!!!!!
Congratulations!
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Thanks for the encourageing words everyone--just pulled off my last cap--just finished TCH #4!! Only 2 more to go--I have gotten an extra ten pounds on me yukk--ankles swollen legs swollen--water weight--I am now on lasix and potassum --hope this works I can't believe this all came on in less than a week--steroids my Doctors believes----going to turn in soon--it has been a long day!
Keep on penguining!!
Sharon
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Yeah Sharon - 2/3 done. 66% done. On the downward slope...Woohoo!
Rest peacefully, if you can with all the steroids on board!
Annie
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Re scalp mets:
Scalp mets is so unbelievably rare that if a doctor had seen multiple cases, let alone any, the medical community would make a bee-line to his/her door to study it as a cancer cluster.
Studies show that there is not an increased risk if using scalp cooling during treatment. In fact, one study showed that those who used scalp cooling had statistically less chance of developing scalp mets.
Here are two abstracts of recent relevant research on scalp mets and scalp cooling. Both reach the same conclusion, even with advance stage BC treatment (4 or more nodes involved): no need to caution against scalp cooling.
These are just two studies. Hope these help! Any physician worth his/her salt can pull these articles, and more, off a simple PubMed search in less than 30 seconds. If they can't/don't do that, I'd have serious doubts about what other aspects of treatment and care they aren't keeping up with.
Susan
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EPIDEMIOLOGY
Incidence of scalp metastases in breast cancer: a retrospective cohort study in women who were offered scalp cooling
Julie Lemieux, Carl Amireault, Louise Provencher and Elizabeth Maunsell
Abstract
Scalp cooling is an intervention used to decrease the degree of chemotherapy-induced alopecia. The objective is to determine the incidence of scalp metastases among women with early breast cancer who received neoadjuvant or adjuvant chemotherapy. We conducted a retrospective cohort study of women with breast carcinoma diagnosed between June 1, 1998 and June 30, 2002. The median follow-up was 5.8 years (±1.7) for the scalp cooling group (n = 553) and 5.4 years (±1.7) for the non-scalp cooling group (n = 87). The incidence of scalp metastases was 1.1% (6 cases out of 553 patients) among women who used scalp cooling in the neoadjuvant or adjuvant setting and 1.2% also (1 case out of 87 patients) among women who did not use scalp cooling in the neoadjuvant or adjuvant setting. The incidence of scalp metastases was low and no case presented as an isolated site of relapse.
Keywords Scalp cooling - Scalp metastases - Breast cancer
Ned Tijdschr Geneeskd. 2010;154:A2134.
[Allow scalp cooling during adjuvant chemotherapy in patients with breast cancer; scalp metastases rarely occur].
[Article in Dutch]
van de Sande MA, van den Hurk CJ, Breed WP, Nortier JW.
Leids Universitair Medisch Centrum, afd. Klinische Oncologie, the Netherlands.
Abstract
OBJECTIVE: To investigate the incidence of scalp metastases in high-risk breast cancer patients in order to assess whether caution is warranted with scalp cooling during adjuvant therapy.
DESIGN: Observational study.
METHODS: The incidence of scalp metastases and the disease course were studied in 885 very well evaluated high-risk breast cancer patients. These patients, who had at least four positive axillary lymph nodes, were treated in a randomised study with either classical chemotherapy, or the same chemotherapy followed by high-dose chemotherapy and autologous stem cell transplantation (the so-called N4+ study).
RESULTS: After a median follow up of 110 months, 403 of the 885 patients (46%) had relapsed or developed metastases. 25 patients (3%) had developed skin metastasis; 4 of these patients (0.5%) had developed hairy scalp metastasis. The scalp metastases always occurred at the same time as or later than metastases elsewhere.
CONCLUSION: Scalp metastases occur with a very low frequency and not as the first sign of metastatic disease. It is therefore unlikely that scalp cooling (to prevent baldness) decreases the local working of chemotherapy to such an extent that the risk of scalp metastases increases.
PMID: 20735874 [PubMed - indexed for MEDLINE]
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Thanks Susan~
My onc. gave me similar studies before I started my chemo.
It does bother me a bit when ladies get on the thread and talk up the scalp mets. Don't you think we would have looked into all that before we began the Penguin Cold Caps?
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The elsato people have two types of caps. We had the helmet, not the cranial cap, at the last chemo. I used two thermometers to check the 6 caps before and after use. We also used elastic bands to secure them tighter, even though it was the small size helmet and fit well. Helmets do come in sizes and are $85.00 each. The way Mike designed his cooler was unique - it had rigid pockets on the bottom, sides and top with air vents so you never have to move the ice around. Although this keeps caps from touching dry ice, the caps can be directly on the ice without being damaged. They recool quickly and you can put a bag of dry ice pellets into the helmet if needed for a quick cool.
We did 50 min pre-chemo and four hours post chemo. The big advantage was that we could drive home and my husband could change the helmets while I drove. It cut our day in half and was much easier on our daughter.
My daugher, with her designer-inventor mind, had several suggestions about having a helmet with a little longer part covering more of the neckline hair, placement of elastic bands for a closer fit, etc. and redesiging the mitts so the coldpart is only where the finger nails are. The current mitt is for arthritic hands.
The Advance people bring the cooler - only one and much smaller than the two 60qt ones needed for cold caps - to the chemo site or ship it to the house.Since they are in Marietta, Ga, we pick up our cooler the day before. Another patient in Rome, Ga is using helmets and they take them to her center each time and help her because she doesn't have a helper. So far, so good, but we are being cautious about keeping the temps cold throughout. I might change her helmet every twenty minutes next time and monitor the after use temps more closely.
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I completely agree...this issue of scalp mets seems to always get brought up by people who choose NOT to do the cold caps. I suggest, they go to the therapy thread and talk amongst people who have different views there. It is frustrating!
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I told someone yesterday I was going to use cold caps and was told it didn't work for her sister a few years back and that her hair got all tangled and knotted from the caps and when she tried to get the knots out her hair came out. So if that is true, how do you prevent your hair from getting matted and knotted on cap days? I have long hair....it is down to the middle of my back. Suggestions? Comments?
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Hi MDG - I think I go back to the person that said "if the hair is going to go, it will go." The tangling is annoying. Here is what I did. Most people go to a totally new/natural shampoo and conditioner that does not have all the harsh detergents. Some us spray on conditioner, etc. I did a trial run on the different shappoos before starting chemo. What I found was that some of the products made my hair really course and tangly (esp the sea chai). I then tried to comb my hair our and the tangles were so bad that I could not get through them. Some of my hair came out - this was before chemo!
I then bought other stuff...tried it and did not have the tangles. I ended up with a product called Harmonic by Intelligent Nutrients. I poured a large handful of the shampoo and patted, rubbed it into my hair and scalp. I did the same for the conditioner, a large handful. I was able to comb through the hair without a problem.
I started chemo and did this process. My hair did not tangle. It was nice and smooth. No issues!
However, I am the person with the large head. I am tall...my head is not that freaky!
I just lost all my hair behind the ears and nape of my neck (it is ok, the other hair covers it). We had made the conscious decision to focus on the front of the hair and sides. So, I am on #2 of #6 TCH. Just washed my hair two days ago. Did the same procedure with the products. This time, my hair, because it was coming out did tangle in the back. I lost a lot. But, the hair was already on its way out. It really was not due to the tangles, it was due to the hair was all coming out.So...my two cents! I think you need to try your products first before chemo. Figure out what works for your hair type. Most people will not have the large head issue. The cold caps work. I have all kinds of gray hair (it is growing!) and baby hair around my face (it is growing!). Also, know that your hair will not seem like your "normal" hair - which is a common them on this discussion board.
It is going to go great! You will worry, but that is part of the process! We will be stronger women for it...and you will continue to amaze and confuse people because you will look (and feel) so good!
Annie
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Ladies - I need to apologize ... I am new(ish) to these boards I have seen how frustrated you all were with the comment I had left ... I came to your thread to learn about the cold caps - after I had read about them, I went to the doctor (my interest was raised) ... the hospital that I go to is easily a Top 10 - it is possible that my onocologist has seen what he said he saw ... I did not realize - as a new member - that this thread was not a place to just discuss your thoughts ... in no way did I intend to sway and opinion or start an arguement ,,, maybe we can all agree that Cancer loves anger and misery .... and that is certainly nothing I would want to delilver in the Boards that I respect so much. I WILL stay away from your thread (it is the only negative place I have been during this past 3 weeks) and wish all of you the best.
Sincerely.
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So after you got done doing caps, did you just comb through your hair? Did you wet it or condition it that day so you could get the comb through it? I am thinking of switching shampoo/conditioner now prior to chemo to something organic. Right now I have been using Frizz Ease by Jon Freida products because my hair is a bit frizzy. I just want to be chemical free so I am going shopping this afternoon for organic hair care products. I would say normally my hair does not get very tangly, but I use hair care products (shampoo, conditioner and a styling spray before drying my hair). I don't have really thick hair or anything. Did you continue to use some type of styling spray/gel/mousse after you wash/condition hair during chemo? I assume hairspray is not allowed (?) during this process too but don't know for sure. I do already have dry hair so I am worried about it getting worse. How can I keep it moisturized during this? I know I have so many questions....I just want to do this right so I can keep my hair.
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Hi MDG - I did what some of the others did...I used my normal products (to help with frizz, etc) and did minimal styling. I figured that I was not going to wash my hair for days and wanted it to look/behave as normally as possible. I did wash and put no product on it a week or two ago. My hair seemed like straw. Others have discussed the straw texture their hair gets due to chemo. From my perspective (just one person!) it may be due to lack of products - like smoothing products or mousse. My hair seemed really dry and flyaway, especially being inside due to cold weather. Bur if i think back to days when I did not use product, it was the same straw texture.
Hope this helps! I will PM you...with my cell number!
Annie
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Annie, I think there is some truth to that. A few months ago we took a 10 day vacation to the Bahamas and I was in the pool, sun and all the swimming had my hair unprotected...the conditioner would rinse out. When we got back my hair did look like straw and I needed a trim bad - the ends were fried too. A few weeks later after using my recular products and remoisturizing my hair it was much better. I can't imagine having nothing in my hair as it is so dry on it's own anyway. I know chemo isn't the same as sun and chlorine, but my hair was so different once I wasn't in the pool all day unprotected. I am going to try some new organic things prior to chemo that are hopefully gentle and see how that goes. I hate all of the unknowns....but BC is full of them isn't it. I got your PM. Thanks! I will probably take you up on that!!!
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My stylist claims it is the lack of being able to blow dry your hair that makes it so straw like when heat is applied to the hair it smooths the cuticle--but since we can not do that----a good conditioner is in order--I am using sea chi products--can not really say I am thrilled with them--it was expensive so, I am using them-anyway------------seems like the lasix is working a bit, down,three pounds and no swelling or aches in the ankles so far---can not wait to finish todays steroids--so red and jumpy today! Trying to put my pent up energy to use getting some much needed housework in--before yesterday TCh tx starts in on me!!!! Always something huh????
Sharon,
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Have to admit...I am drying my hair a bit on warm. I tried to rationalize that if i was in warm air in Tahiti or Hawaii it would be the same warm air as my hair dryer. Seems to be working!
Yes, dreaming of Tahiti...Hawaii...anywhere warm.
Stay warm - or cold if you are doing caps today!
Annie
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Hey fuzzylemon~
I was not trying to be negative. It does bother me when a doctor states something and my doctor said something different. I was not trying to make you feel that you can not post here. Anyone is welcome...
The ladies using Cold Caps like to come here for the support. We try to keep it upbeat.
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I'd like to second Ang7~ in no way trying to be negative..and especially not trying to hurt anyones feelings....think it is the frustration in the oncology community that made my statement seem negative. I'm all for information given to patients but full disclosure...and not opinion. Permanent hair loss from taxotere is close to 6%, leukemia is 1-2%, but do they tell you that ...No. Every oncologist I asked, plus two surgeons said hair grows back. But ask about the caps and sooooo many will say "scalp mets" or even more incorrectly state "brain mets" I'm still so impressed that the 3 oncologists I saw..and one from the #1 cancer center in the world..MD Anderson...said they probably won't work but go for it..... My sister a year earlier had a much different experience.
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Our experience has been that the older docs and nurses who saw the failed cold caps in the 80's or 90's are not up to date on the new methods. My daughter's somewhat younger surgeon was all ears and very interested when he heard but the 59 yr old onco was a "well, try it, but it doesn't work type" until he saw my daughter with hair on Wed.
Nurses seem bothered by the activity and the space needed to do the cold caps routine and the two coolers. And complained that the other patients were asking what was going on, but HIPPA prevents them from saying. Well, we told the nurse just to tell them; we are certainly ok with that.We'll sign and information release. We want people to know they can save their hair, and we are trying to find a less expensive way for others to be able to do it.
We are now trying the elastogel helmets using extra tightening elastic and velcro straps (we made these with $15 from the fabic store) and with only one cooler needed. And the helmets are much easier to put on. Being a born doubting thomas, I checked helmets with 2 temp gauges to make sure they were at -30C at least and follow the pre and post cooling times.
Maybe if we reduce our "footprint" in the chemo room, the nurses will be more accomodating - even though we are in a separate room away fromt eh main chemo area.
As for scalp mets - I worried about that, too. But everything I found in th eoncology journals, not popular press stuff, say it is a 0.02% risk and seems to be related to having other mets already.
So many things to consider. I read the MD Link Onoclogy journal reviews - very good peer reviewed studies.
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Tori,
I think it is wonderful that you took the chancew and used elastogel caps. I am working with the manufacturer of the elastogel caps, to try and spread the word about them. Do you mind sending me your phone number so we can chat a little bit about them? this is a lot cheaper of a route for cold cap users, and a lot easier of a cap to use! I am a nurse, and do not work for the company, just am helping people find a better way to keep their hair, penguin caps are hugely expensive.
Thanks,
Jill Cooke
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Hi All,
Just wanted to add a few things to the thread. I have found that breaking the blocks of ice in half in a zip lock bag really helps make it easier to lift the ice to get the bottom caps, also, I have found breaking the ice does make the caps get to temp faster, especially when you are starting the second round of caps after using all eight, this is when temps can vary due to not enough time back in the ice, breaking the ice really helps get them colder faster. I break some into chunks and put behind the caps and around the other caps when I have one out of the cooler. I have 9 down, 3 to go.
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Hi there everyone,
Glad to hear all are doing well and handling SE's and keeping hair.
I have been having trouble with a bad taste and I think my husband found a way to alleviate it. He said try to drink salt water--lots of salt. It makes the water drinkable and seems to help alleviate the problem for a day or 2. I can't eat fruit, because it tastes awful, like a slime is on it, but after drinking salt water a few times, I can tolerate it and coffee too. I think it does something to regulate your taste buds. I don't really know, but it has worked for me. I also use the mouth washes--Smart Mouth/Biotene/and Oasis. All are good. Mints and hard candies help too, but the salt water helps the most.
I washed my hair on Friday, and got a little tangle and because I was in a hurry, instead of putting more spray on Alterna Hemp conditioner before combing that spot, I just tried to comb it and the whole clump came out! Real scary stuff!!! I'll never do that again!! I had sprayed all over with the Alterna, but didn't do a little extra where the tangled clump was, big mistake!!! By the way, I also didn't care for the Sea Chi, it was too thick and left my hair hard and stringy. It is also way too expensive. I only used it once, If anyone wants to buy it from me, I'll be gald to send it. I think it is better for thick, long hair. The Alterna is great and much cheaper. Somewhere between $12 and $18, depending on where you buy it, its in beauty supply stores and some fancier pharmacies.
Keep Positive!!
Nancy
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Hi again,
I got a private message from a gentleman who is looking for cold caps for his wife, who starts chemo on Feb. 17th. She would like to try cold caps, but hasn't been able to reach Frank. They are worried about whether or not Elasto Gel cold caps work, ToriGirl, please assure him, his name is Sam and his wife is Libby. Also, are you the person who was willing to ship the Elasto Caos to anyone who wanted to try them? I'm sure they would be willing to pay something for them. I will try to find out where they are and what protocol she will be on.
Nancy
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Hello Ladies;
I wanted to comment about using cold compress for taxotere for the extremities. Many friends have gone thru treatment and developed neuropathy. I bought lots of flax seed cold packs and tried it for my hair and extremeites. It works for the extremities and I am going to continue it. The Cold Caps seemed to expensive and too much trouble in addition to sitting thru the long hours of chemo. I now regret I did not do them! However I have two whigs which I like. Receontly I developed chemical burns of my eyes. Horrible! I was advised by my doctor to use the cold packs during the entire treatment for my eyes. I've had to improvise with velcro and these flax bags but it's worth saving my eyes. I understand that taxtore can cause stenosis of the eye tear ducks and it appears to have started that way on mine. I was horrified but will try the cold since so far so good it's saving my hands and feet.
Anyone else out there using cold compresses to help other side effects?
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Hi there Everyone~ It's been awhile since I've posted anything but I am so glad to read that everyone is doing so well. I have had a pretty good result so far. Full head of hair but lots of thinning on my sides above my ears. I wear my hair in a ponytail a lot and I stopped until I discovered the BEST product for anyone experiencing this thinning. My sister in law who is a fantastic hair colorist found this product and carefully examined the ingredients for me. It is available on QVC. It is the "Joan Rivers Great Hair Day Fill In Powder with Brush." It's $29.50 and it comes in 5 colors. I ordered the blonde even though I have brown hair with honey blonde carmel highlights. I think the brown color is too dark unless your hair is super dark, almost black. I can't believe how amazing it works. It stays on and doesn't come off unless you shampoo it out. My family never thought my thinning was obvious, they just look at all my hair and are blown away but I have a little grey patches on each side with major thinning and because I cannot color my hair this product is perfect. I am almost 1/2 way done. I haven't been sick but bad headaches and a little indigestion here and there. With the AC I didn't gain weight or get puffy. I find myself nauseous until I eat and then I'm fine. My last 4 are Taxol. Does anyone know different side effects from that? Is there anyway to adjust the cold cap to reach the sideburn area? Hope everyone is doing well. ~Nicole~
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The person looking for caps should email to Frank, but also to Geralyn Pewarchie who is VERY helpful and efficient about seing to the caps transaction.
Also, PM me because i know someone RIGHT NOW who is done with them, and looking to send to the next user.
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nikki44- The Joan Rivers powder looks like something that will really help with the thin spots until I can color and/or grow out my hair. I checked prices on E-Bay and other websites and the Joan Rivers direct one was the least expensive. They have a Buy one Get one free thing (2 for $19.99) but then they nail you by doubling the shipping. (from &7.99 to $15.98). My ego needs a boost, so I think I'll try it. Thanks for the tip.
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I will be finished with my caps on March 2nd if anyone is interested in using them. I live in the Nashville area.
Jill
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Does the powder cover the gray as well?
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