Cold Caps Users Past and Present, to Save Hair
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Hi Heather: Welcome. We really hate welcoming new ladies to this site but glad you found us. You'll get lots of good information here.
Most here use the Penquin Cold Caps and their website is:
http://www.msc-worldwide.com/indexusa.html
I used the ElastoGels which are less money and they worked for me but perhaps not as well as the Penquin's.
Stick to the protocol established by Penquin and you should do just fine with your hair.
Arlene
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Hi heather sorry you had to be here. If go through the thread of messages there are posts by motherofpatient she has an entire word doc on the directions and temp changes for both elasto gels and PCC she used both on her daughter. Good luck & it's overwhelming but the caps where a huge distraction from all the other stuff going on.
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Hi Heathermomof2 - don't be afraid of any of this. i have 2 kids. 11yrs and 2 yrs. I just finished 4 DD AC treatments, and one Taxol. 3 more to go. I've been up every morning with the kids. We're in the pool, at the park. I haven't missed anything. All of this is manageable. The caps will have you focusing on your hair, and not the chemo. It's a great distraction, and it works. Follow the directions and ask for help whenever you need it. Don't go on the other blogs - it's depressing. Stick with this crew! You'll be ok.
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Brandy- thanks for the pictures! You look terrific and are an inspiration to all of us.
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Hi everyone and welcome to those planning or just starting cold caps.
Brandy, your pictures were great. I just had my 5th TCH, my hair looks a little dry and I have grey silver roots but am so grateful not to have had to wear a wig for the past 4 months. I went kayaking on So Lake Tahoe before my 5 th infusion and it was wonderful to feel my hair blowing in the wind: After having undergone masectomy, axdillary node disection, Tissue expanders and eventual breast reconstruction, chemo and possibly radiation, I can say that the cold caps for me have been worth the extra hassle. It is not just about the hair, having some control in this process and decision making helps and the caps are a welcome diversion while in the infusion room. I am more worried about the cap temperature and timing and it makes the infusion go fast. .
Snoopy- Re RESEARCH AND SCALP METS, I did a pub med search and also if you google "cold caps hair loss european studies, some abstracts will come up. Here are some links
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)
It seems to me ( as a RN researcher, my past job) that more research studies will need to be published to convince our FDA (generally USA FDA is slower to adopt new treatments than those in other countries ) about the efficacy and safety of cold caps. My onc said the risk was very very small and she was basically neutral about using them. What really puzzles me and frustrates me is the attitude of my fellow nurses. Their negativity and attitudes based on outdated information is not ok. At the major infusion clinic I go to, at least after a couple bad interactions the first 2 times about trivial issues about coolers/space, my "guests" who are the cold cap assistants, they are more neutral and basically ignore me. It is sad, none of them ask about it and I get the feeling they are just putting up with me. I have provided them with research articles but I get the distinct feeling they don't care at all whether it works or not. Perhaps they are concerned it will be more work for them and we, as patients will ask them to put the caps on in the future. My onc says I am the "poster child" for the clinic. I hope I can be. We should not have to put up with this I plan to visit a couple major hospitals, tumor boards, etc after treatment to discuss my experience. In any case, please do not be discouraged for those of you getting flak from nurses, doctors, etc. Change is hard for them but we are the pioneers. When I was a home care nurse, I had patients who refused chemo because of fear of side effects. and later died. We can do it, have great hair and help others in the future
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THANK YOU SO MUCH Serenitywisdom; this is very very helpful. Much appreciated:-)
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Hi all:
To Serenitywisdom: Thank you for all the data and your undying supprt of "our" wonderful cold caps. We are the pioneers of this system, and we are paving the way for the future, when it will be protocol here as it is in Europe and elsewhere!
To Heathermomof2:
Just Google "Penquin Cold Caps" and you will come to their web site. Watch the video and call the phone#'s listed. They are US #'s, but the company is in England, so be mindful of the time difference from US to England when you call. From N.Y. there is a 7 hour difference (they are 7 hours ahead of us.) Check what the diff. is from Chicago.)
The cold caps definitely work, and doing them makes you feel like you have some control over something during this ordeal we are all faced with! I found it an empowering experience. The caps give you a great distraction during chemo and this site will help you over any rough spots or questions you will have. We will help with anything we can--about the cap use/the care of your hair during and after the process/ special hair care products that have worked for us/ help with the side effects of chemo and anything we can do to help. We are your "sisters". Looking in the mirror and seeing a person with a full head of hair staring back at you is a great feeling and you look healthy and"normal", so you feel that way too!!
Frank Fronda, the inventor of the Penquin Cold Caps will give you all the info you will need to use the caps properly--he will base it on the specific chemo you will be getting, and your personal data as well. Best of luck, whatever your decision, but I hope you opt to do the caps, you won't regret it
Keep Positive!! Smile and Laugh When ever You Can!!
Nancy
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Snoopy73: I've seen no difference, hairwise, in 4TC vs 6 TC. The bigger factor seems to be whether your hair is thick or thin to start with. I went through 4 TC, have thick hair, and lost maybe a sandwich bag full of hair in the end. My neighbor, who I coached, had 6 TC. She had very thin hair to start, exercised little, and hardly shed anything -- nothing worth collecting in a bag at all. I met another woman this week, at 5 of 6 TC, who had lost hardly a thing. Frank has said that those with thick hair tend to lose more than those with thin hair. But those of us with thick hair have more to spare.
Re: scalp mets: the literature is overwhelmingly, in fact unanimous, in support of scalp cooling treatments. I did a PubMed search last week, just to refresh, and came across 73 papers analyzing various scalp cooling procedures including PCCs and the Dignicap system. (Some of the papers are from as long ago as 1973, long before the accompanying hair care protocol was understood.) There were several studies on scalp mets, and ALL of them recommended scalp cooling as effective and safe. There was even a study of two women with advanced stage cancer who had scalp mets, and the study concluded the scalp mets was not at all related to the caps (I believe they were leukemia cases where there is a higher incidence of scalp mets). Scalp mets with breast cancer is virtually unheard of, even with advanced stage BC.
The most amazing study was the one that showed that BC patients who used cold caps had a LOWER rate of scalp mets than those who did not use caps. Take *that* to those nay-nellie-nurses!
Brandy: you are a gorgeous goddess! Just beautiful. Congratulations on your fabulous results! What an inspiration all the women here are.
Susan
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heathermomof2: I am sorry you are traveling this cancer journey. Looking at your signature, it is very clear that you have caught your cancer early. This is important! You are early stage, hormone positive (that's good!), HER2 negative (that's very good) and no nodes (fantastic). Your prognosis is excellent. And believe it or not, the chemo journey is not as horrible as we imagine. The management of side effects is incredible.
Please PM me your email address and I can send you my writeup about my PCC experience as well as a wealth of other pointers and tips I collected from my care givers during my chemo a year ago. Many women tell me it has helped them enormously.
Most of all, congratulations on finding this great group. I was the first PCC user at my cancer center (I'm coaching the second user this weekend, recommended by my MedOnc no less! Woo hoo!) and it's been a sea change of understanding and acceptance in that year. It's still a new concept almost everywhere in the US. This group was *everything* in helping me get through it! We were the only women in the country who could talk this language! It's so much larger now, but no less important, and for me was a critical part of my Circle of Care in going through chemo and battling cancer.
Susan
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Hi, Heather,
I think you are the one that contacted me on ebay. Glad you found us! Also know that you can postpone your treatment date until you get all the cold cap stuff in order. Do not feel rushed.
What is your chemo cocktail?
Lee
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I am the one who contacted you on Ebay! I was going to call you.
I don't know my cocktail yet, I find out Monday. I am unable to postpone my treatment. We are trying to do as much as we can this summer due to work/vacation/school schedules. My husband is home much of the summer and his help has been invaluable!
I am still very interested in your caps. Did they require a special freezer? How did you use them? Did you find they worked even though they weren't "Penguin"? The Penguin ones are SOOO expensive! Thank you so much for your help and info. I truly appreciate it.
Heather
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Hi All - I feel so welcomed and supported! So glad to have found this site. The whole BC diagnosis has been a whirlwind. I found the lump May 13th, 2011. My OBGYN saw me that afternoon and it was like a starter pistol went off. Between 1p.m. to 6p.m. that same day (13th) I was checked, mammogrammed, utrasounded, biopsied, told I had cancer and that I'd need a mastectomy and chemo! My surgery was June 7th and chemo starts July 6th. I am so thankful for fast moving doctors who have been compassionate too. Still, it's been a shock. I feel like if I can keep my hair this would all be much more tolerable. So thankful for this site, this discussion and that it's not all doom and gloom! Thanks ladies.
Heather
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friends
any ideas of how much time for DD AC infusion? I know taxol goes in slowly, I can't find the info for DD AC and am trying to plan my day and let my helper know how much time to set aside. I know about 1 hour before and 4 hours after the infusion for sure.
I have my first treatment on Wed!
would you believe I have read almost every 120 pages of these CC posts, dear penguinistas?
you all have a wonderful attitude. even if I don't get to keep much hair with the dreaded adriamycin, trying this project makes me feel better.
brca1babe / skr
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Hi There:
Brca1babe: You must speak to your oncologist or at least the nurse to find out all the particulars, time or lenghth of each part of the infusion. If you are using Penquin Caps, Frank needs the info to give you the times required for the caps. He also needs to know the kind of chemo. If you are doing the elasto gel caps post all your info here and someone with the same treatment will respond with the proper info.
Usually it is for the hour of meds before the chemo ,but changing 1si two caps every 20 min. and then 10 min before the chemo starts is the next cap and then every 30 min during chemo and for 4 hours after, continuing to change every 30 min.( I'm not sure about the 10 min before chemo starts, because my helpers knew the routine better than me, because they did it.)
Good Luck.
Keep Positive!
Nancy
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brca1babe - When i was doing AC (also DD) Premeds and infusion would take about 3 hours in total. I just started Taxol and it's a much longer day. AC was quick. Don't forget - 4 hours of caps afterwards. If you've read the posts you probably saw Claritin for bone pain. THat's a MUST the day of your neuprigin or neulasta shot. Best advice!
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yes! got the claritin!
I amd doing PCC. I can speak with Geralyn tomorrow if needed, I just wanted to get the general idea of infusion time with DD AC. Geralyn had said to keep the caps on 4 hours after and the usual 50 minutes of caps (with changes at 20min mark for the first two) prior to the infusion.
thanks!
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Well said, DebRox. By the way, I am done now with CHEMO as of Friday June 24th! Still have side effects right now and nuelasta aches but done with 6 rounds. Still have hair- about 30% of original. Sent caps back already. Thought I could not get through the last cold caps business, honestly. So glad to be done with all of that. Now just more babying of hair for six months and hopefully out of these particular woods. Start Radiation July 1st. Did not think I would make it through sometimes but just kept going- just like in my general life sometimes. I am grateful to have hair- it IS great to have the choice to reveal that one is a cancer patient or not. It is very empowering. I agree wholeheartedly.
ANother thing- my infusion center was annoyed for the most part with all the fan-fare of the caps and the ice chests and all that....had strict rules about keeing them in the waiting room so my helpers had to go out there etc, but it all came together for me in that I was strong and insisted and I am glad I did. Interestingly, no one seems to want to make a big deal that I still have hair. One nurse has said I will be the first to keep it, if it doesn't fall out later, as 'it does with everyone after chemo is done'. I hope not, but I did tell her that at least then I would only have been without hair for about a month, since it will start regrowing, instead of five months. That seems better to me also. I am okay with this. Wish it wasn't so much money, work, and time but that is what it takes. (It will be nice for others in the future when the Swedish company DIGNACAPS gets approved- they have been doing studies in San Fran, from what I hear!- those just plug in-using only one cap, and stay plugged in the whole time!!). Sending the caps back cost a lot more for some reason (over $50.00 more than when I ordered them four months ago- same company- Fed Ex), and a lot for the dry ice of course ($148.00 each time for 100 pounds), and then if you have to pay a helper- could be up to $300.00 per session- then the cost of monthly cap rental, and the ice chests, and all the not-so- little incidentals such as monthly international payment fees at the bank, thermometers, large plastic bags, mole skin- Oh my gosh, it takes a lot to keep ones' hair, doesn't it? But even with all of that, I am so happy that I did.
Seems very strange when I have talked to a few women I have met who went bald and said it was very freeing to shave it off and why would I want to bother with all that just to keep my hair ("It's jsut hair!" they would say- and I get that one has to adjust....). A lot of others seem to be shocked and saddened that there is a way to keep hair, and they did not know about it in time. I guess we are all different and some of us just adjust better to such things....maybe younger women can take it best? I am not sure- interesting to do a survey. I would have been one of the ones that it would have bothered a lot.
Good luck with all that you have ahead, DebRox. I am moving on to the radiation site, for the most part now, though I will visit this site and try to add or learn more about this journey too. You know can call or PM me but it seems you are on the way to success!! YAY!! For all of us. 'We are warriors' to quote an observer of his wife who saw her continue to go into 'battle' with this cancer journey. I like that vision.
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Elizabeth - Thank you so much for your post and update; I am starting chemo July 7th (very anxious, scared, nervous etc etc...) and planning on using the PCCs. I am going to pace my order this week and hopefully get them next week before my D-Day:-) I will be getting 6 cycles of TC every 3 weeks, so will keep everyuone up to date.
Thanks again
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You know what felt good today??? The wind blowing my hair.....being able to say that 7 weeks PFC is priceless.....
A bad hair day is better than a no hair day. Hang in there all you girls still going through it and just starting....you will have the wind blowing your hair soon!0 -
testing out how the PCCs will work and how long to leave on dry ice to get them to the right temperature and noticed two things:
the temp across the cap is very variable - from -40 to -25 in the sides. we're going to try to get the icemore even around the box (we're using pellets).
tried a cap on. THAT IS SO COLD!!! OUCH! how did you guys do it? are you super strong resilient tough can-take-anything kind of gals??? I could not leave it on more than a minute. tried again later and was able to stand a few minutes.
I am worried I won't be able to tolerate it after all this. yikes!
I even had the thought - they may not work (I will be on adriamycin), so why all the bother/pain. ugh.
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Brca1babe: yes they are cold. I take a painkiller an hour before cold cap start time.
Also purchase an electric throw to keep you warm thru out treatment. Bring a flask of hot tea or soup.
And don't forget to ice fingers, toes and mouth. I'm not sure if this part is necessary for AC, I'm on TC so maybe someone can an AC can chime in here.
It's worth it. Debby
Edited to add: after 15 min you no longer feel the cold, scalp is numb. There is more discomfort icing toes than scalp.0 -
I had my first chemo tx on 6/16 so I am 11 days out and have not yet started the dreaded first shed. I am very nervous that my hair is going to fall out in huge clumps as my thick hair seemed to protect the nape of my neck and above my ears from the cap. Those areas never seemed to get cold no matter what we did. Using the cold caps was quite the commitment. My facility does not have the freezer so we had to get all of the dry ice and lug in the 2 coolers. But far worse than that was the way the caps made me feel. Every time they put a new cap on me, I felt like throwing up and/or passing out. This feeing lasted 5minutes or so and then 25 min later it was time to do it again. It definitely makes Chemo day very stressful but if it works I will take back every single one of these complaints! I imagine that I will start to lose it later this week or early next week. I'm getting interviewed for our local news tomorrow and I'm so tempted to curl it.
Did anyone take pre natal vitamins while going through chemo as those are known for helping your hair grow? Also there is a product named Ovation that has had good reviews and is free of the chemicals Geralyn told me to avoid. Does anyone have an opinion on this?
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Hey Sheila~
I know what you mean about the Cap changes. I used to abuse my poor husband each time we had to change a Penguin Cap. We finally agreed to work together, LOL.
I have been on pre-natal vitamins for 12 years. I just cannot remember if I was told to stop them during chemo. I can check with my onc. if it would help you.
Good thoughts being sent your way...
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BRCA: Ask your doctor to give you Ativan. It helps a lot, plus you'll probably get Benedryl and that helps too. The first few minutes are bad and then your scalp goes numb and you don't feel it.
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Sarah: When you put the cap on during your infusion, your pre-meds will already have begun and some of the sensation will be offset. For the first five minutes you have that brain freeze feeling, but after that with the PCCs you have frozen your nerve endings and will have a general sensation of cold, but not that initial 'bite' of cold that you had while practicing. It's totally fine to take a painkiller and/or Ativan or something similar to relax you, too!
If you've got an electric blanket, that's wonderful to fend of the shivers you might feel as the day goes on.
Every time the cap went on, I just screwed up all my courage, and I mean ALL, and thought how much I wanted to keep my hair, beat my cancer, and prove that these worked. I accomplished all those things and now I hardly remember what those four cold days felt like.
The other thing you can do to help yourself during that first five minutes is distract yourself! I was usually so busy getting settled back in my chair, putting my ice mittens/ice socks back on, peeing (because you drink such enormous amounts of water during the infusion), that I could make that first five minutes go very quickly. Also, remember that when the cap first goes on, knead it. As your head warms the gel slightly, you'll be able to press it closer to your scalp to ensure good coverage. I believe the instructions say to do this for about 30 seconds when it first goes on and again at 5 minutes, but I did it every five minutes or so throughout.
Yes, the temp can vary across the cap. My helper would "work" the cap by pressing gloved hands on it to warm up the cooler parts, and help spread the gel evenly. The cap only became workable at about -35C, which is the temp at which I had to apply it. There were times when I kept a cap on longer than 30 minutes because the new cap wasn't quite maleable yet.
Sheila: I never felt that the nape etc. got cold enough either. I did lose about an inch at the nape, but with long hair the loss was never visible -- my long hair just hung over it (plus it was a gradual loss, and began regrowing even during chemo). I concentrated on the front/top hairline and on the crown and sides, and it worked well for me. Now, it is hilarious, because I have super-fast-growing ringlets dangling at my nape. When I put my hair up this summer, it looks like I spent time with a curling iron making ringlets. Man, I would have killed in 1977 going to the prom to have these ringlets! :-)
I think the instructional PCC video understates the importance of the straps. I'd love that video to be re-made showing some of the strap techniques: I used three, one at the nape up along the hairline to the top; a second one around the crown to the forehead, and the third one wherever it looked like the cap was puffing away from my head. Maybe somebody could YouTube it!
Regarding the temperature, my helper always took the temp of the inside of the cap after removing it. There were quite a few times I was convinced the cap wasn't even in contact with my head. Taking the temp of my cap and of my scalp, definitely proved there was good contact. It's just that my nerves were frozen and I couldn't feel it!
Best of luck to everyone about to start. I remember exactly how I felt before getting started, I don't think I'll ever forget. We're all here to support you!
Susan
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BRCA: Ask your doctor to give you Ativan. It helps a lot, plus you'll probably get Benedryl and that helps too. The first few minutes are bad and then your scalp goes numb and you don't feel it.
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Ativan- Better living thru chemistry! I take it about a half hour before I put on the caps. It has also helped me get to sleep. I have had some insomnia since the diagnosis, surgeries, chemo, etc and the ativan helps to relax me. I do use it very sparingly though First used it when I encountered severe turbulence on plane flights when I was flying a lot and helped combat the anxiety and roller coaster feeling on a plane.
I too want to comment that after 5 treatments (15 weeks) it felt very good to have the wind blowing in my hair when I was next to the SF Bay this weekend. Last time we had a technical problem with the thermometer and not sure if temp of caps was cold enough. I hope that they were but even if I lose the hair it was great to have it this amount of time. Staying positive really helps.
A word about sunscreen- I learned the hard way just how sensitive skin can be when getting chemo. I was only out in the sun for about an hour and got burn on my legs when I was kayaking for only an hour which has now turned into a bad rash on my legs. My face also gets sunburnt very easily. Recommend using sunsreen and hat all the time.
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I took an ativan pill right before I left from home on infusion day so it was working by the time I got there. They also gave me benedryl and more ativan in my pre meds. I put my first caps on before they hooked me up for pre meds. Once I got the cap on the nurse would come in and start pre-meds. I was so distracted with her accessing my port and stuff, I did not have time to think about it. You can do it! There is nothing wrong with living better pharmaceutically!!!! The benedryl also makes you super relaxed and very drowsy.....for me the caps were not bad at all...it was the icing of fingers and toes! Also be sure to get the thick moleskin for forehead and temples and panty liners to cover ears. Keeping those areas away from the cold should help!
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Glad to see everyone abuzz about color-3 months PFC--still have about 40% of my hair new curly hair is about 2 inches--I need color bad---I trust everyones opinion on this cite so much
Please Advise--I have a appt on Thursday for color---should i or shouldn't I I have come so far----but hate the way I look--but in retrospect and so greatful to have some hair--please help me make this desision!!!
Sharon
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Mdg I sent you a PM..: )
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