Cold Caps Users Past and Present, to Save Hair
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Schoolmom - Your hair looks super fantastic!!! Wish i had similar success. I have lost 60 - 70% of my hair with most missing on top(bald spots), around ears, and around nape of neck. My hair is very thin and its noticeable to everyone. The most hair I am holding onto is around my face. My hair experience is exactly as Hortense stated. Just finished 3rd treatment and shedding has picked up again with last wash. On a positive note, I do have grey hair growing in around my part which would never have happened without cold caps. Just hoping I don't lose more with 4th and final treatment!
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Hang in there Loafer! You may be losing more than most report on here, but at least as you said, it is already growing back. It should fill in much faster than had you not used the caps! Fingers crossed for your 4th!
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ecarol, are you er/pr+? Did you have the oncotype test? You didn't put down whether you were node positive, size of your tumor, etc. so it's hard to have much of an opinion.
Brows, sigh, I still have some of mine, but very little. What i have is so faded that they completely blend in with my skin. I draw them on -- it's a hassle but it is totally doable. Also, since i have the hair on my head, it partly falls over my eyebrow area so my lack of skills in the eyebrow drawing area is somewhat masked/distracted by my other hair. I am starting to grow them back -- inconveniently, the only ones that seem to have reappeared are the ones where I definitely don't want them, so I pluck them out. THey are distressingly pale ... I'm a brunette and invisible eyebrows don't suit me.
I find it odd how few people (I mean re my medical team) comment on the fact that I still ahve my hair. I'm doing radiation now and no one comments on it. Women in the waiting room do though (they assume I dodged the chemo bullet). My hair couldn't possibly be a wig, it's too ... messy and imperfect (but I LOVE that it is still there!)
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For the ladies in here going to radiation after the first of the year, will there be a different board to post on. The help and support in here for chemo has been remarkable and would love to keep it up when I go to radiation in the end of January!!!! One more chemo on Jan 7. YEAH!
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Hi Charlotte14 ! And welcome, I am glad you found this thread! I learned so much from the ladies here. It helped me make the decision to try cold cap therapy. I was skeptical when I started, but I can tell you now that my chemo is over, it really does work. I kept my hair although it thinned out in overall volume due to shedding - which means loss of the oldest hairs.
First you should go to:
www.rapunzelproject.org for information and instructive videos on keeping your hair and how cold caps work by a non-profit foundation.
www.msc-worldwide.com (Penguin Cold Caps website) for information about renting cold caps.
You can rent eyebrow bands from Penguin, but I was not successful with mine as the two layers of moleskin I wore to protect my forehead from the caps held them off too far to be effective. They grew back within two months. Other people have had good success. I also lost my eyelashes, or most of them as I was down to about five lashes on each eye. Everybody seems to lose theirs, but they also grow back in a few months.
Most of us on here have used Penguin Cold Caps, which have to be rented, but some have used other brands such as Elastogels which can be bought or rented. It is my perception from what I have read on here that Elastogels do not always work as effectively and that some of the rented ones may not be in the best of shape. You might post specifically asking about them if you are interested, but first, read through the Rapunzel Project site.
If you do use eventually cold caps - and they DO really work, be sure not to dye, lighten or otherwise chemically treat your hair during the month beforehand or you might end up with serious hair damage and breakage. I ignored that warning and suffered the consequences.
I do not know what GCSF is, but I had Cytoxan and Taxotere this past summer. Be sure to ice your fingernails and toes during the Taxotere drip so that you do not end up with nail damage which is loss or disfigurement of your nails, or neuropathy which is nerve damage.
Icing's easy. Just put crushed ice or frozen peas into ziploc bags. Put your fingers into the ice above the first joints and try to keep them there throughout the Taxotere treatment. You do not need to do it during Cytoxan. You can take them out to warm up briefly if they start hurting, but put them back in as soon as you can. Put a folded towel down on the floor to insulate the ice bags, put the ice bags (or you can use frozen gel packs) on the towels, then put your bare feet on the bags, finish by covering your toes with bags of ice to protect their nails.
It's cold, but well worth the effort not to end up with your nails turning black, or falling off completely or having them become thick, warped and yellow. You also do not want to have nerve damage in your feet or fingers which can become permanent, either. So ice!
Best wishes!
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Cypher - I am er+, pr - and Her2 neg. Node negative. Size: about 4 cm ( they seem to not be sure as it appears larger on the MRI than sonogram/mammo, but my onc said this could be due to swelling from the biopsy)
I am having neoadjuvant chemo starting in Jan - goal is to shrink tumor so I can have a "reduction lumpectomy" instead of mastectomy. But as I understand it, being ER + ( and very strongly) - there is a chance chemo may not work well on my tumor.
My regimen has been changed to TC, 4X, which I understand is easier on the hair - I have long hair and I plan to use the Penguin Cold caps - My center in MArin does not have freezers though. Trying to get a 2nd opinion appt at UCSF , since they have freezers.
Does anyone know if there are offical helpers in the Bay Area that can help with the caps? I am a single mother ( work full-time) and am overwhlemd about how I am going to manage all this.
Thank you everyone
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Hi Gals - I also have my last treatment on January 4th and move onto rads. Haven't yet made arrangements for this part of the journey. Not sure how long after last treatment before rads begins. Would love to keep in touch through the next phase.
Hortense - I have not iced my hands during tax treatments. Not sure I can handle both head and hands. If I have no problems through 3rd treatment, are my odds good that i will ot have this SE?0 -
Loafer, I am starting rads in January, a bit ahead of you. I met with the radiation oncologist last week and she says 33 treatments for me, which she says is "standard". However, on these discussion boards I've sure seen a lot of treatment numbers smaller than that! Maybe I'm getting 33 because I'm HER2 positive or something. I have my set-up appointment, which includes 2 CT scans and 2 tattoos, on 1/2, and will start rads sometime the next week. I think it's going to get old, especially on days when we have snowy roads.
I am still not experiencing any shedding to speak of (knock on wood), at 12 days PFC. I do think my 12 weekly taxol treatments are much easier on the hair than the TC most of you get. Although I had 12 chances for cold cap "user error" as opposed to 4 or 6. I bought the color wand thing you recommended, Loafer, but haven't used it yet - I'm using up the last of the Colormark one I already had. My hair is so long right now, but I guess I can get it cut sometime in January. Can't wait until I can get it colored!
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To all starting rads soon-if you have much of a drive to your rads center, try listening to a book on tape. My daughter suggested that to me, and it made my 35 1 hour round trips just fly by.
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Loafer-My last chemo is also on 1/4. I'm still on the fence about rads vs. bmx, but I may be joining you on the rads board as well. Damn BRCA-sure makes the decision process difficult! Have you met with RO yet?
Hair is holding on well. Saw my MO at Stanford today (getting chemo at UCSF) and she was surprised at the amount of hair I've kept. I told her how wonderful it's been for me to be going through tx with a full head of hair and tackling cancer on my own terms. Not looking sick sure goes a long way in not feeling sick. I tried to encourage her to sponsor a study at Stanford, but she showed just about zero interest. It's unfortunate and disappointing that doctors don't place more value on how much our mental and emotional health aid in healing. I almost feel as though they think it's frivolous for us to want to save our hair..."because it eventually grows back anyway." Ugh!
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Has any on had to use cold caps with nevelbine/herceptin? I did one round of T/C and it did not go well onc maybe changing my treatment. I've heard some women say that they just having thinning.
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Loafer and Tlym I am right behind you. My onc told me 3 weeks inbetween chemo and starting rads. I already got on the winter rads board that sonsan started and have started collecting info. I guess I am lucky because I only have to go 5 minutes to the facility in Houston winter weather.....it was 80 today. I plan to make afternoon appts and run in after work and head home to rest. I am going to try to go back to work after #4 chemo day 3 just to check in and end my 12 week leave. Then continue to take 2-3 days off a week or maybe work 1/2 days.....at least until rads are done or I have the energy. I have a conference in Dallas the first week of March and wonder even if I finish with rads will I have the energy to go to a 3 day conference????
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To those about to start rads, while it is much easier than chemo by far, the thick creams you have to use to moisturize several times a day do a number on your shirts. I used Aquafor, which my rad center recommended and also a Calendula oil the rad nurse recommended, but I suspect most any brand of protective creams would stain.
No one explained the pesky clothes staining problem to me. That greasy stuff doesn't come out no matter what you do! Oxyclean all night made but a small dent. Tide was utterly defeated. I spoiled quite a few shirts before I realized what was happening and got smarter. I started wearing older shirts that I didn't care about or the ones that I had already stained. I also learned to use tissues layered over the thick creams or oils - some women use cloth squares - to protect the shirts a bit. Both stick very well to the moisturizers.
Bras do become uncomfortable as they can rub and breakdown your skin creating open sores. Going without solved that problem for me, but I'm small breasted so that might not work for everyone. The nurse gave me some large nonstick, Telfa type gauze pads to wear during the last two weeks as my arm rubbing against the side of my breast was causing a problem and they protected me perfectly. I did wear a bra loosely over those to hold them in place.
I blistered a little bit in one area from radiation and my chest looked like I had a 10" x 12" deep redbrown square across my breast like an odd tan, other than that I had no problems. The small blisters healed quickly and now, two months later, the color is fading although I can see the tan-ish borders in places. I still have to moisturize or my breast can feel like cardboard if I forget, although that is getting better.
Like Laura 5, I also had a long drive to my 35 rad treatments (30 plus 5 days of boosts to the tumor bed). It was almost an hour and a half each way depending on traffic, and boy did they get mad when I was late as they really pump patients through on a tight schedule! The radiation itself took about ten minutes each time and usually didn't feel like anything. Twice in the beginning I felt a bit of warmth, but that was all. I did find I got more tired toward the fifth week of treatments, so I would break up the drive home with stops to look through stores, for lunch or coffee. The week after it ended I think was when I needed some extra rest.
I second Laura5's very good suggestion to get some books on tape for long drives. I have been addicted to them for years and many libraries have excellent collections of them.
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Something else that will prevent oils and creams from getting on your clothes: Saran wrap. Just place a large enough piece over the area and it will stick for hours.
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Escarole, you should PM sebm9 – I think that’s her name – she lives in the bay area and is a huge cold cap advocate. If you scan back a few pages you will definitely see her, I think she posted recently.
My tumor looked larger on the MRI than the mammo, and turned out to be larger than the MRI. Or it grew because it took them so freaking long to get me in for surgery, one or the other.
The science on the er+ thing and chemo is very confusing! If you ask your doctor what does he say?
SLB, I don’t know what nevelbine is but I had herceptin and I kept my hair. I mean I lost some, but I kept enough.
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Hortense, thanks for the helpful advice on radiation. My RO said they would "give me" Miaderm; I imagine it's pretty much the same as what you used. It's winter so if I end up going braless at least I can wear sweaters to conceal the jiggle.
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Thanks all for the info. Wow! Saranwrap....great idea.
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schoolmom - some also report wearing a tank top with a shelf bra in it turned inside out is more comfortable than wearing a bra.
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Tylm - i live in California too - in the Sacramento area . I am starting on TC dec 27th . I ask mo about cold cap and he said the efficacy of it had not been proven but that I coud do itmifmi wanted to . Can u advise the best place and website to research ? I think there is a place in so cal but I would need to hurry ....
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For anyone who wants it, I have a reference list of 50+ scientific articles about the use of cold caps/hypothermia. It's in Microsoft Word format. If you'd like it, PM me.
I'm using it to prepare a research talk for the breast physicians at my cancer center (they asked me to talk in January). At that time I'll have a PowerPoint presentation that I'll be happy to share.
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"An hour ago dancetrancer wrote:
schoolmom - some also report wearing a tank top with a shelf bra in it turned inside out is more comfortable than wearing a bra."
dancetrancer - I was told to get a bra shelf tank top also, but not your excellent idea of wearing it inside out with the outside against your skin as protection from the shelf's elastic. Brilliant!
I tried a few on the regular way and realized that the elastic underneath my breasts, even in larger sizes, would have worn through my skin during radiation when it became delicate. I did not think to try wearing a Telfa type non stick pad as protection from the elastic, but it might have worked. My nurse also said many women simply wear tank tops under their clothing as a layer of protection, however I now know that the tanks will become grease stained so only use ones you won't mind tossing. A tank might make wearing a bra over it possible for a while.
cousinltt - I like the Saran wrap idea! I never thought of that.
Some ladies cut old tee shirts into large squares to use over their creams to protect their bras and clothing. You would probably need 12" x 12" squares, judging by my tan lines, however the greased area went beyond that in the beginning as I didn't know the dimensions then so I put grease everywhere to be safe.
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Sandra60-I'm in the Bay Area and receiving tx at UCSF, where they are doing a cold caps study. Are you looking for a supportive infusion center or the cold caps supplier? With chemo on 12/27, you would need to order your caps ASAP from Geralyn at Penguin http://www.msc-worldwide.com/indexusa.html. They will fedex them to you, but with the holidays, you should get working on this today. There are also other supplies you will need if your infusion center does not have a cold caps freezer; Geralyn can supply you with the list. Tell your MO the caps definitely do work! I have completed 3 rounds of TC and still have a full head of hair. I would estimate my loss to be in the range of 10-15%. Best of luck to you!
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sandra60 - If you can not get caps for your date, push it back a week. I did.
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Sandra60, I also pushed back a week or two waiting for the freezer.
When I did rads, my center gave me Aquafor, but I read on these boards about ladies using Emu oil. I used it and it worked great for me. I ordered it from Amazon.
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I'm really disappointed with the attitudes of some doctors and nurses that I've read about on here. My onc was fine with me using the caps. I am not sure if it would have been offered to me though had I not mentioned it, but it was mentioned in a written guide on chemo they gave me which was produced by the hospital. I can't remember who wrote a few posts back about their doc refusing to accept the free freezer for PCCs. Why?! That's just being mean and ignorant. No, hair isn't as important as life and if we had to choose between them I'm sure we'd all be shaving our heads right now! But if you can keep your life and your hair, why not?! Ugh, it makes me mad.
I asked my onc's assistant yesterday if I would be completely bald by now had I not used scalp cooling. I'm sure I would be but she wasn't so positive. Said that most women usually have a lot less hair than I do currently but not always totally bald. What do you guys think? I've TC #3 tomorrow so am 6 weeks since starting. Just extremely thin on top where cap doesn't fit well and that area feels very vulnerable. Last hair wash I had minimal loss. Must try and press down on front of cap tomorrow to protect that thin spot but it's easier said than done for four hours!! I need a bigger head!0 -
Michelle, Be careful of your thin area on top and don't get frostbite. Consider using gauze strips over that area - then pull the cap tightly. You can tell if the area is getting too cold - it will hurt like crazy (after the first 5-10 minutes when everything feels cold). I did this my last 3 treatments and prevented any additional frostbite.
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Thanks 301724 (it feels weird addressing you with numbers!). I combed it all back so my fringe kind of covered it. Plus, as it's the bit that barely touches the cap I don't think it gets cold enough, hence why it's thinner than the rest. Worried about what happens this cycle and the following three. I say I can cope with just losing that but because headbands may still cover it up, but I will look really stupid! Especially if it grows back Afro like last time I lost my hair!
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michellej19, In answer to your question, when I first talked to my onc about chemo , he told me that I would lose my hair after the first treatment.
As others have mentioned, it really irritates me when the doctors, nurses, etc. act like they don't really notice that you still have hair. Do they feel like we proved them wrong or something? Ugh! Get over yourselves naysayers!
I pray you don't lose anymore hair
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I had a med onc argue with me that they don't work when I was a few months PFC, sitting in front of her with a full head of hair....nuts! THen she finally said "your the only one they work for". Glad she was just the genetic counselor MO and not my MO.
A nurse at my new MO office (we moved so I switched docs) said to me on my first appointment "do you think they really work?". I was sitting in front of her with a full head of hair down to the middle of my back less than a year after finishing chemo. I said "well what do you think? This is not a wig - it's all mine". She still was not impressed.......I give up!
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I am not having the success that many of you seem to be having. My hair continues to fall out in handfuls after 3rd treatment. I have now lost roughly 75% of my hair and have large bald spots on top and sides. Areas are too large to try and comb other hair over. I also constantly feel back of head, fearing there is no hair left because I can feel a breeze, which I never could before.
I still have grey growing in at my part and around face. Worried these bald spots will not have hair regrowth. Has this happened to anyone else?0
