Cold Caps Users Past and Present, to Save Hair
Comments
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SoCalLisa-Hello there! I would just like to add that I had early bc 13 years ago and just had a reacurrance. I guess the point is that with this awful disease that is the black cloud that follows you around thruout your life-worried about a reacurrance. I personally do not believe it had anything to do with cold caps.
The cold caps that were used 15 years ago were not the same as the ones we use today. There is a new inventor and new caps. Probably the only ones who should not use them is someone that already has mets-Stage 4 cancer.
dreaming-Iam using the penguin cold caps right now and Iam finished with 3 tx of taxotere and cytoxin and Iam having my 4th tx on Thursday. Both chemo drugs that Iam getting has the Se's of hair loss. So far I have all of my hair and feel very good about it. When I finish my last tx I can get back to my normal looking self right away and I won't have to deal with trying to regrow my hair which can be a long process.I wish more women knew about this! It takes the sting out of getting chemo!0 -
SoCalLisa-You know one person who used caps 15 years ago? And they had a recurrence? That is quite a leap to attribute your friends recurrence to cold caps. What about all the other recurrences for people who didn't use cold caps??? Where was the reccurence? These are not the same caps that were used 15 years ago. And the only possible worry of recurrence worth considering is scalp metastasis, which is <1%. I wish we had stats like that when considering radiation, chemo and hormone blockers whose risks for both recurrence and side effects are much higher!!! Why do women suck on ice chips when doing chemo? It's to prevent the lining of the mouth from falling apart,so to speak. And women who put their nails in ice water to prevent them from falling off. I guess we need to be concerned about metastasis to the mouth and nail beds also. Here is some information on scalp metastasis: Scalp Metastases
One of the considerations in scalp cooling is the incidence of scalp secondaries which if present may not be treated by chemotherapy. It has been suggested that if blood flow to the scalp is reduced delivery of chemotherapeutic agents is reduced increasing the likelihood of cancer cell survival.
In early stage breast cancer, the incidence of the scalp as the first site of recurrence is very low. Dean et al (1983) found only 2 patients with scalp metastases in 7800 women with breast cancer treated with mastectomy, with or without post operative adjuvant therapy, an incidence of 0.025%. Clearly, primary metastases are rare.
Does scalp cooling increase the incidence of scalp recurrence in early stage breast cancer?
The most extensive literature report on scalp cooling was conducted by Tollenaar (1994) who reviewed 25 publications (1973 - 88) with a total of 1282 patients. No case of scalp metastases was reported in scalp cooled patients receiving adjuvant chemotherapy. In their own scalp cooling study of 35 adjuvant treated breast cancer patients no case of scalp metastases was found with a mean follow up of over 4 years. More recent published studies involving scalp cooled adjuvant breast cancer patients have not reported any scalp metastases (Ron 1997, Lemanger 1997).The review by Tollenaar reported cases of scalp metastases in five scalp cooled patients with disseminated breast cancer out of a total of 96 patients. It remains uncertain whether these lesions would have occurred in the absence of scalp hypothermia.
Overall the problem of scalp metastases is very difficult to determine either way. There is currently no clinical or scientific evidence that the incidence of scalp metastases is increased in scalp cooled patients. The condition is very rare and the patient sample required to establish the answer in a randomised study borders on the impossible.
Literature commentary: Scalp Metastases
"...a practical concern is the risk of scalp metastases. This risk appears to be minimal. Fisher studied 7800 women with breast cancer treated with mastectomy alone or with post operative adjuvant therapy. Of these patients, only 2 experienced scalp recurrence (approximately 0.025%) as their first site of recurrence. Both these patients had positive lymph nodes and one received adjuvant chemotherapy. These date clearly indicate that there is a minimal risk of scalp metastases as the site of first recurrence in breast cancer patients........we believe that scalp hypothermia can routinely be used with a variety of solid tumours such as breast, ovarian, pancreatic, thyroid, gastric, osteosarcomas etc."Dean J.C. et all J Clin Oncol 1 33 (1983)
"It is concluded that the hair preserving effect of scalp cooling is mainly due to the metabolic effect of cooling, and only to a minor extent due to the flow reducing effect"
Bulow J at al Scand J Clin Lab Invest 45 505 - 508 (1985)
"None of the patients (in our study) that were treated with scalp hypothermia developed scalp metastases (mean follow up time 48 months) 5 cases of scalp metastases after scalp hypothermia of 96 patients treated for disseminated breast cancer were reported in two series. No case reports of scalp metastases after scalp cooling for adjuvant chemotherapy for breast cancer were found in the literature."
Tollenaar RAEM et al Eur J Cancer (A) 30 1488 - 1453 (1994)
"...nor has the literature yet yielded reports of any increased incidence of scalp metastases in the women that have undergone hypothermia in the past 15 years."
Ron IG Support Care Cancer 5 136 (1997)
"No reported scalp metastases after the cold cap in adjuvant breast cancer chemotherapy was found in the literature. In our experience, we have been using the cold cap for about 15 years and no increase in the rate of scalp metastases has been observed.
Lemanger M et al Eur J Cancer 33 297 - 300 (1997)
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Hi everyone!
For those using the Penguin Cold Caps, I'm curious how it is going. Are they working?
Thanks!
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bump
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From Cancer Research Fund website, UK
Reducing hair loss from chemotherapy (cold caps)
If you find the thought of losing your hair very upsetting, your doctor may be able to suggest a treatment that is less likely to cause hair loss. Sometimes there is a choice of drugs you can have. Your doctor will want to give you the treatment that is most likely to work best in treating your cancer. But there may be other cancer drugs that work just as well. It is certainly worth discussing.
Sometimes, the amount of hair that falls out can be reduced by using a 'cold cap'. While you are wearing the cold cap, it lowers the temperature of your scalp. This reduces the blood flow in the scalp. So the amount of drug reaching the hair follicles on your head is lowered too. As smaller amounts of the cancer drugs get to the hair follicles, the hair is less likely to die off and fall out.
Cold caps don't work for everyone. They only block certain drugs and are not suitable for use in all types of cancer.You can't wear a cold cap if you are having continuous chemotherapy through a pump either, because you would have to wear the cold cap all the time, 24 hours a day.
Unfortunately, even if you can have it, the cold cap may not work. You may still have hair thinning and some people still lose their hair completely. You can't tell whether it will work for you until you try it.
If you have scalp cooling, you will have to spend longer at the hospital having your treatment. You have to wear the cold cap for a while before you have your drugs. The cold cap will make you feel cold all over, so it can be more comfortable to wear a jumper or ask for a blanket. Hot drinks will help you feel warmer. You may find the cold cap gives you a headache.
Some doctors are not happy about their patients using scalp cooling for any type of cancer. They worry about the risk of cancer cells being left in the scalp. In theory, there is a risk that this could happen. But there has been very little research into the risk of cancer coming back after scalp cooling. So there is not enough evidence to know for sure whether scalp cooling is completely safe for most types of cancer. Some patients are not keen on scalp cooling for this reason, but others choose it. If you are interested in trying this way of keeping your hair, ask your specialist nurse if it is suitable for you. You can discuss the possible risks with your specialist if you are worried.0 -
Hello KarenVW, I just finished 4 tx of taxatere/cytoxin and I still have almost all my hair!! Yeah!! When I say almost all- I mean that I lost strands of hair after I combed it. Not much more than when I brushed it all day. No one can see a difference in my hair although I may have thinned a very litlle bit. Iam very happy with my results. Now that chemo is over I don't have to deal with trying to grow my hair back or wigs. I look and feel normal. Well Iam still fatigued from chemo and that's not normal! LOL!! Iam sure that all chemo drugs may have a different result and some may need longer post cooling than I had. But the hassle of changing my caps and drinking water, and I also chewed on ice to ward off the metallic taste in my mouth (which helped) was well worth it. I was a little cold but I dressed warm and it wasn't bad. My head was like a brain feeze for the first 5 minutes you put the cap on but then goes away and you don't feel it anymore. All in all it wasn't to bad and I would do it again. It was only one day every 3 weeks that I had to do it. If you need more info go to their website Penguin Cold Caps or pm me. Geri
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Hi Geri - thanks for letting us know about this. ~I am bumping this thread to help out our forthcoming September chemo thread - so glad for you that you had a good result.
best wishes -
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I have been helping a woman with the Penguin Cold Caps. They are working! She has kept her hair. There was a spot at the base of her neck where the cap wasn't tight enough the first time we used them, so, she did lose a little there, but overall she has all her hair! And most of all, she doesn't look like a 'Chemo Patient'. Here is a link to the website if you are interested in keeping your hair while doing chemotherapy. http://www.msc-worldwide.com/index.html
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This is great Makingway - thank you very much.
warm regards
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Taken from another post, here is info on one type of cold cap treatment top give you an idea of how it works
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I am the woman that "makingway" has been helping with using the Penguin Cold Caps and I confirm that I still have most of my hair 26 days after my first TC chemo and 5 days into my second cycle!
I did lose quite a bit of hair at the nape of my neck after the first chemo cycle, but I attribute that to unfortunate timing. We were only able to pick up the caps the same morning of my first chemo and they were not pre-cooled. We had to cool them with dry ice quickly and had no opportunity to practice. Also, because I have a larger than normal head, the caps did not fit as tightly as possible at my neck hairline. I could tell that the nape of my neck wasn't getting sufficiently cooled and fully expected to lose hair there, as indeed I did.
However, most people meeting me would never detect that I have any hair loss at all. The biggest clue for those who know me well would be that my hair is not as "styled" as usual as I am being as gentle as I can to my hair and not subjecting it to heat or styling products and am even washing it less frequently.
I felt that my oncologist's office staff expected my attempt to fail. They seemed surprised when I showed up with a full head of hair for my second treatment and warned me that sometimes the hair doesn't fall out until the second cycle. I lost enough at the nape of my neck to know that the chemo had it's effect with hair that wasn't sufficiently cooled. However, I had very little loss to the area that I could tell was well-cooled -- my main skull cap. They will likely be surprised when I show up with hair next time too.
At this point, I am a believer!
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Congratulations Lori!
My first chemo is tomorrow and I am booked for cold cap and determined to give it a go!
thanks for sharing the good news -
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Best wishes for no major SE from your first chemo Virginia. Since you're in the UK, I assume there will be professionals to help you with the cold caps and that they will have uniform coolness (harder to get when using dry ice in a picnic cooler).
Let us know how you do!
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hey there in California!
I am going to be using the thing that looks like a salon hairdryer but is actually the "fridge" hat as opposed to the frozen free ranging hats. I think in a lot of places they would prefer for something to fail because they don't want to faff around with preparing the hats. I haven't had that at my place yet, but have had several reports of this from other people in the UK.
Yoohoo world - I AM USING THE BLOODY HATS.....
best wishes to you Lori and continue to be
a cool California girl...........xxx
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Hello Everyone, I just popped in and Iam happy to see others trying the cold caps. They do Work. Iam 3 weeks post chemo and I have all of my hair!! I look like I never had chemo! they will be FDA approved someday. They are working on that. then everyone can at least know about them. Good Luck to anyone using them!! Geri
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Thanks Geri
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Hi Ladies ! I'm a brand new member of our little club. Had a lumpectomy on July 23rd, met with 2 med oncs and am about to find out if I can eek by with only radiation and hormone therapy or if chemo is a must. Waiting for the results of an OncotypeDX test and one last consult. If I do wind up with chemo (realistically, I almost definitely will) then I'm joining you clever individuals and definitely going with a cold cap ! (IMHO, why would anyone chose to lose their hair ?) Anyway, if I may, I've got 3 questions for those of you who who've already been down this road:
1) How far in advance do I have to contact the Penguin people & order Caps ? (If necessary, I'd like to start chemo the week after next)
2) Are the caps as effective with AC (Adriamycin/ doxorubicin + Cytoxan/ Cyclophosphamide) as they are with TC ?
3) Are 2 helpers necessary or is one quick handed and much appreciated brother sufficient. (Like Newport Lori, I'm single but I've got a wonderful brother who's been with me every step. However coming up with a 2nd helper isn't so easybut I will if it's necessary.)
Thanks. And, by the way, thanks as well to all of you for posting. Reading about your stories helps me to focus on the positive steps I can take while dealing with this PITA (pain in the...).
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Hi all! I have completed by chemo...finally!! I still have no bald spots and a full covering, even with my harsh treatments. I did thin, but my hair started to regrow 4 weeks ago and i have about 1/4-1/2 inch regrowth already where it did thin, especially noticable where the caps weren't fitted properly and the hair fell out around my ears. I attribute this to the cold caps and my hair follicles not being damaged that much. Even though I thinned, I would definitely say it was worth it and would use them again. Good luck to all that are using the caps or do in the future!!!!
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Geri and Can-D-I'm so happy you made the choice to TRY and keep your hair and best of all you WERE SUCCESSFUL!!
MTG- I don't think the caps are as efficient with Adriamycin. Go to the website.It shows the effectiveness based on the chemo drugs you're given http://www.msc-worldwide.com/index.html You don't need 2 helpers, just one will do. Watch the video on the website. It shows how to put them on. Have your brother watch it a couple of times. Have him practice putting them on you in advance. I would recommend getting them at least 2 weeks in advance, so, you can play with them to figure out how long it takes to get the Caps at the proper temperature. While at the Oncologist, I might find, out of the 14 caps we have in the cooler, only 1 or 2 are at the right temperature I need them to be when it comes time to replace it. I'm working on fine-tuning this.
Virginia-London- How cold does the hair cooler get that you are using? I'd like to see a photo of it. Is it like an old fashined hair dryer or is it like a bag filled with cold air. I'm curious...
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Hi there - I completed my first treatment with FEC yesterday. 16.66% of my treatment complete!
The device only looks like a salon hairdrey - there is rectangle floor standing freezing unit; tubes come from it to the freezing element which is soemthing like the shape of a big bathing cap and colouted nice shades of blue and green. Things like the elements from a fridge wind round within the "cap". The tubes are obviously providing cold and taking away warmth. The caps come in slightly different sizes. IT is put over the head, and then over that another cap with a chin strap and also another band tightens around one's forehad, all to make the cooling cap tight to the scalp. They turn the device on so it cools, and it was put on me about 30 mins before my tratment. I had it on all durinf the treatment and then for about one hour after. You can move around the room a bit if you want to as the tubes are long. ~The chemo nurse has workjed in the unir for a number of years and was very proefessional. She says it can do better than 50% succesful for most people. She believes my hair (long) will be likely to thin, but is optimistic as to the outcome. I could if I preferred have the other type of caps (which I think souhnd very likely the Penguin ones) if I wanted, but this way around I get to use a smaller room and I was on my own. But if I choose to change to them it isn't a problem at all and they are commonly used there. There are several different sized rooms at the chemo unit, all of which are bright and cheerful. The chemo nurses w3ere pro the use of cold caps, whilst nurses elewhere in the hospital in different units, tend to be more negative. I think that is purely becuase they don't know the real skinny. Also, it seems to be the overall mindset at the hospital to be extremely constrained about just about anything so my rule is to ignore pr3etty much anything negative I encounter!
Best of luck to all -
The entire process was perfectly ok. There were moments that it was a bit uncomfortable, but the nurse was with me all the time I was having the infusions, so that distracted me. By the time that was done, I felt find just to sit and read.
I would give the treatment a go whatever chemo you are on - at my central London hospital they let anyone try it and and can do no harm.
FEC is : Flourouracil (aka 5FU), epirubicin and Cyclophosphamide..
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Makingway - Thanks so much for your quick and detailed response. I checked the site and Penguins do work with AC, although I'm currently thinking about going with TC instead. (I had focused only on the shorter duration - every other week vs. every third week and hadn't realized that AC was a much harsher treatment.)
As for getting the caps to the right temperature, I spoke with Frank this morning (he really is a lovely man) and he suggested taking the caps out ten minutes before they're needed, kneeding them to warm them to the correct temperature and then putting them back in for a few minutes until time to flatten them out and put on.
Can-D - Congratulations on finishing Chemo ! I must confess, since I'm just at the start of the process, I am extraordinarily jealous of you and all those who have already crossed this hurdle. But this thread certainly helps me to make sense of things. I see you also used cold bands for eyebrows, can you tell me a little about them ? My brows never grew back after I plucked them as a teen so I'm concerned that if they fall out now, I'm going to go through life looking permanently surprised (i.e without brows).
London- Virginia - How great that you have the option of what sort of cap to use ! In the US, as far as I can tell, we can only get the Penguin Caps. Reading about the hair dryer version you're using, it occurs to me that you have the added advantage of not having to switch caps every 30 minutes and thus no worries about either the speed of the switch or the tighness of the replacement cap. Once on, yours stays on. ! That's a real bonus.
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CAN-D: thank you for creating this forum. I was recently diagnosed (5 weeks ago) and had my first chemo tx last week. Unfortunately, I learned about cold caps after my first tx. I would like to know if there are any cold cap users out there that have had success (minimal hair loss) with my same tx protocol: AC every 2 weeks for 4 cycles, followed by Taxol every two week for 4 cycles. I've heard that the cold caps don't do as well with Adriamycin. I don't want to go through all the effort if the prognosis is bleak! My next tx is Thursday so need to order the caps quickly if the outcome looks good. Would appreciate all replies. Many Thanks.
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Guys - why make such a big deal about trying the cold caps? Friends in Greece say the cold cap can work to a greater or lessed degree with any chemo.
I am completely confused by this you know. Nobody but nobody wants to loose their hair,
And yet I read again and again about people not wanting to be bothered trying. Why? It doesn't hurt, it is maybe an extra hour or so on your visit - just how busy are we all at the moment?
Ther is not actually any efrfort. The chemo nurse fixes it all for you, and you just sit there. It hurts a little tiny bit to begin with only in as much as you have a cold head. IT eases off.
I am sure the penguin caps are absolutely great too - they have the same type of thing at my hospital; I just went for the other thing because it puts me in a smaller room on my own rather than a general room.
Anyway everyone, good luck with everything -
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Although I'm new to this thing, I couldn't agree more with London Virginia. THERE IS NO REAL DOWN SIDE TO US, THE USER, THE CANCER PATIENT !! Okay, our heads might be cold and we'll certainly look ridiculous for a few hours and our "helper" does have to work pretty hard but if baldness is so easy to avoid it seems like a no brainer. I'm annoyed that this option is so unknown, esp here in the US and even more annoyed at the doctors and nurses out there who seem to have old or misinformation and just dismiss the cold caps as "they dont work". The various studies and this thread itself tell us otherwise.
Michele RS - call Penquin Caps immediately (yes, even on a Sunday), leave a message and ASK. While certainly it would have been better if you used it when you started, there is almost assuredly going to be some benefit and some hair preservation. I bet they can virtually quantify it for you
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MTG - I am so with you!
Cold cap is availablle here at most cancer centers and quite a few other places too. The most encouragement and info I discovered though was via a Greek poster on here - a lot of folk at her hospital in Athens had a good response. So it is a well tested thing. N.B. good cancer care in Greece.
Now, we can't say if any of us will do 100 per cent, but its worth a shot. Just need a wee bit of mental application but really, in the scheme of our journey with the bloody disease, so what?
A nurse I know who is also having chemo had to have a row at her hospital purely because the chemo nurses couldn't be bothered to do the thing. This woman just gave them what for and got her way. Good for her I say, and as we all know, that kind of attitude is not particular to any one country.
Frankly, it sounds to me that the stateside hospitals or insruance companies or whoever it is don't make enough money out of it to bother. Looking at the hiring tarrif here in the UK (I don't need to but others might) it isn't expensive enough to warrant any fuss.
Anyway, if you have the chance ladies, do it. At least you can give it a shot and if you just end up with thinned hair, well whooppee say I!!
Very best wishes to you all
xxxxxxxx
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by the way, one of my drugx is epirubicin, which I think is quite a toughy, but the nurse still reckons I can get away just with hair thinning.
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MTG -Thanks for your response. I did call Penguin and they indicated that my treatment protocol usually has very good outcomes. I, of course, want to hear about experiences from users similar to my situation. I have since talked to a couple of nurses, etc and they seem to be a bit skeptical about the product indicating that I should expect to have some hair loss and losing hair is only a temporary set-back. On the other hand, they are very willing to support me using them.
MrS
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Tsk! IT is your hair and so what if it only thins - better than the other! If it was their hair would they see that as just a temporary setback?
Good luck!!!
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Hello Cold Cap users! and Thinkers!-- Iam excited about the Cold Caps. I finished 4 T/C and lost very little hair. A bit of thinning but no one would notice. Can-D had a harsher tx and much longer and still has full coverage. Thinner is better than none! When chemo is over you will look and feel like YOU! Not a cancer patient! You won't have to deal with wigs and hair regrowth! Just get back into being you!!
Can-D- Congratulations on finishing chemo! I have been thinking about you! It's nice to be done and still have your hair!! Iam done too but am still feeling lack of energy!! I wish I did the brow bands, mine are almost gone but Iam using Latisse and I think it is working. PM me sometime and let me know how your doing! I've been camping (close to home) for the last 2 weeks and just got home. I'll talk to you soon.
London-Virginia- thanks for bumping up this thread! Looks like it is helping others give it a try!! Good luck with your chemo. I never heard of the caps that you are using.
I can't go back to the previous page but for the one who asked if one person was enough to help with the caps. I say yes if it is a guy! They seem to handle kneading the caps after they are -40 alot better than woman. My dh and df came and my dh dealt with the cooler and dry ice and kneading them better than my df. When we came home and changed my caps for 3 hours after my dh did it with no problem. DF was there more for support and to make sure my dh didn't choke me with the chin straps LOL!!
Good Luck and hope everyone is feeling good! Geri0 -
Michele_RS Keep in mind, these cold caps are a pain in the posterior for the nurses and doctors . You're there longer. You're making more noise that you'd be if simply reading quietly. And, most importantly, unless they hide you away in a private room, other patients will see you and want to know why they weren't given the opportunity to save their hair as well. In my humble opinion, I can see a riot starting. If I were facing the prospect of certain baldness while watching someone potentially saving a good portion of their hair, I'd certainly be leading the mob.
Of course, I'm also a highly logical person and want to hear success stories and see quantifiable results. If you ask the people at Penguin, they will put likely you in touch with women near you who have gone thru the process so that you can get direct feedback. The Penguin site also has an summary about their clinical trial. Check out http://www.msc-worldwide.com/clinicaltrials.html. I've asked them for more info. In addition, I have a copy of an independent Greek Medical Study on the Effectiveness of Cold Cap Systems. the study dates from yr 2000, which means that if a cold cap was good then it's even better now. If you email me I'll send you a copy of the pdf file.
Finally, if you are in Europe there are options other than the Penquin Cold Caps. One out of the UK called Paxman Coolers and out of Sweden called Dignitana and Dignicaps (Hate the name !). I didn't fully research these options since they're not available in the US.
With that said, I found out 2 hours ago that my Oncotype DX score was a 16 so I may opt for avoiding chemo altogether. Meeting with my surgeon who I highly, highly respect at the end of the week before I make final decision.
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