Cold Caps Users Past and Present, to Save Hair
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KCcurls,
For best results, Penguin likes for you to have at least 1/2" of new, untreated, unprocessed hair near the scalp before starting chemo. Otherwise, the chemicals in newly processed hair may react unpredictably with the chemo you receive.
Don't color your hair this close to chemo. The chemicals used in hair coloring will still be in your scalp and in the hair shaft closest to your scalp. A former cold capper on these boards mentioned that she did exactly what you're suggesting - went in for one last highlight, or color job, I forget which - and then into chemo. She started to see a lot of hair breakage a few months later. She noticed that a tiny ball appeared on the hair strands right at the point where the new hair color + chemo occurred, and the hair then broke off. She thought the breakage ball formed as the result of chemical damage caused by the combo of hair color and chemo.
On the other hand, as far as the deodorant, I never stopped using my Secret antiperspirant from chemo thru rads. Penguin has some protocols that are really important, but IMO this one is not relevant to hair at all. My radiology onc pretty much dismissed it entirely when I asked.
Good luck! Cold capping is a challenge, but to me it was entirely worth it!
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I colored my hair about 10 days before chemo. Not that it is recommended, but I did and it still worked for me. I did switch to different deodorant right before chemo.
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agness, I'm so sorry that you're dealing with mets now. I hope someone who used elastogels gets in touch, but meanwhile have you checked Amazon and Ebay? Interesting that you would be allowed to use cold caps during radiation. Would you actually be wearing the caps during radiation or getting your head cold immediately prior?
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agness - will the cold caps prevent hair loss due to brain radiation???? Did someone tell you this?
I've never heard them used for that purpose. Not sure that chilling the scalp will make a bit of difference - caps work by keeping chemo from getting to the follicles. I don't see how cold would keep radiation beams from hitting the follicles. I would check with the founder of Penguin.
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I talked to my radiation oncologist about my use of Penguin CC during chemo. He was the one who suggested that, given the particular technology that will be used (tomotherapy) that the hair follicles might be protected from dermal damage by chilling the scalp outside of active treatment. The frameless masks they use hold your head rigid so there is no head movement and no cold capping then. I have lost half my armpit hair from proton therapy in 2014 but he said it was because of the dosage received and the angle.
Penguin CC won't know because this is a non-standard use. It is definately experimental but if there is more that I can do to try to protect my body from the side effects of treatment then why not.It looks like I will have to rent from Penguin again for 5-6 weeks. I only need 2-3 caps but they have flat rate pricing.
Thx.
PS - we were discussing on the brain mets thread and my RO said that there is no way to internally affect the temp of the blood supply within the skull, not with cold capping. My HER2 cerebellar met was very typical behavior for HER2, even the location in the brain is specific to HER2. I am a perfect case of what happens with HER2 when it spreads into the central nervous system -- cold caps had NOTHING to do with my disease spread, they thought I was stage 4 from the get go and they never scanned my brain since I had no symptoms. Unfortunately the standards were developed for all breast cancer patients years ago and the reality is that triple neg and HER2 with nodal involvement are more likely to have brain mets at the first site of mets in the body.0 -
agness, that is fascinating that this radiation works on a thermal basis. Wow! Must be different from how radiation to the breast works. You could cold cap prior to and post the rads, that way the scalp will be kept the most cold possible - how awesome would it be if it works to save your hair!!!!!
I agree, there is no way cold caps could actually cool the brain. The skull is way too thick, and the blood supply to the brain runs up into it deep through the base of the neck into the skull. Cold caps aren't going to be able to affect it. If they did, we would all pass out from lack of blood to the brain during cold capping.
Yep, HER2 likes to spread to the brain.
I am so sorry your cancer metastasized. I hope the rads works fast to get it under control! 0 -
Interesting. I am going to get the elastgel caps sent next week so just a couple of days where I will have to pinch hit with laying on ice packs but they will expedite my order and they are getting them in tomorrow.
I also spoke to the Penguin rep and she said that they have had others use cold caps during rads to the head and it is a little different than with chemo in that it is about ongoing chilling of the scalp outside of treatment and using fewer caps. So, they are familiar with this practice as well.
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KCcurls~
I switched my deodorant before chemo as my primary doctor was pretty adamant about it. My problems had all started as pain in my underarm which most of my doctors had dismissed. It could be a coincidence, but my primary felt that there might have been a tie in with my underarm pain, the strong deodorant/antiperspirant I was using for years and the breast cancer diagnosis? Who knows. I now use Schmidt's natural deodorant. It is strange as it comes in a tub and you use a tiny spatula to put it on, but it smells nice and I have had no problem with odor all day long.
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Agness - so fascinating! You're the first I can recall on this thread doing caps with radiation. Keep us posted!
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I'm feeling a little down. I was doing well on Cold Caps through four treatments of A/C, but the past two of Taxol have left me balding up top pretty badly. It's so excruciating (I had to have the caps on for many hours this week, due to them being so slow getting the Taxol started--we probably had them on 15 minutes too long before the Taxol) that I'm ready to give up. My co-worker is telling me I should start wearing a wig. I am balding on top but still have some hair on the back and sides, though it is really thin. I have two more Taxols to go. Biweekly.
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Aw, malonejen,
I'm sorry you're going through all this, and so close to the end of your treatments, too. :-(
Have you talked with Penguin again? They've worked with such a large number of cappers who've had both good and bad results, so maybe they can give you some idea of what to expect with 2 more treatments to go. I know that several ladies on this forum who capped and got very thin on top, used a mini topper until the thin spots filled back in. Would that option make sticking with the caps more feasible? I hear you about the misery of capping. I really do think those caps get harder to endure as the hair gets thinner, at least it was for me. Either way, you have to do what is best for you as far as continuing or not. We're here for you either way!
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Hi Malonejen - I know how you feel. My hair got very thin on the top after my 3rd treatment and I ended up wearing a hair topper (1/2 wig). My stylist colored it and cut it to match my hair and it blended in nicely. It made a huge difference for me. I also broke protocol and got my hair trimmed after my second treatment but it felt great. I am now 8 week PFC. I am not shedding as much as I thought I would PFC (possibly because I lost most of my hair already). The silver lining was I started to see some hair growth around the last treatment. I no longer needed my topper about 2 weeks ago. I know it seems really hard to keep at it as I wanted to throw in the towel so often but I am glad I stuck it out because 8 weeks PFC, I can say my hair is growing back and I have less of a way to go.
Not trying to talk you into staying with the caps. I just wanted to share with you my recent experience. We are here to support you with whatever you decide. Big hugs to you.
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Malonejen sorry to hear that your having a hard time if only we had a crystal ball to look into to see how it would all end up it would make these decisions easier.
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I had shedding too during and after chemo but by round 6 I had as much regrowth as gals who stopped two minths before me. Adjuvant Herceptin slows hair growth but after finishing treatment my hair is much longer and back down to my shoulders even as my stylist hacked off the most chemo-damaged of the lot. I definately protected my follicles and I don't regret my investment in cold caps.
As I posted on the Dr Susan J Love facebook page last week ago, for all you who are lurking and on the fence about cold capping:
"Hair loss is entirely an unintended side effect of breast cancer treatment and yet has been made into a badge of honor by oncologists and patients for years. It has never had any therapeutic value and in fact certain common taxanes are associated with a permanent risk of alopecia -- the hair never grows back."
PS - I tracked down and will be using two Elastogel caps during brain rads that a wonderful customer service rep is sending expedited delivery for Monday. Such a total relief. Time to save more hair.
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malonejen,
I made it through the 4 rounds of AC with literally all my hair (lost about a 1/2 a little ziplock bag) and now through my third low dose weekly Taxol (Thursday) I have lost double that. I was told it was a late shed and it would slow down. Since I didn't really shed on AC this makes sense to me. Is it disappointing, yes, is it frightening yes, but I am continuing to trust the process. I said from day one everyday I have hair is a day I would not have without the caps but to get through the "bad" chemo and then to have this happen is hard. I completely feel your pain.
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To everyone with real thinning on top and at the crown: some perspective from months out. I don't know what kind of hairstyle you have, or prefer, or look good in, but it does fill in pretty quickly. The spots where I visibly lost the most (around the part and crown) grew back in the thickest and fastest. You can use a topper in the meantime or Toppik to fill it in. It's imperfect in the moment and feels like it will never end, but I'm about eight months PFC and have almost three inches of thick regrowth at the crown. I've cut my hair six times to keep closing the gap between regrowth and my (now) collarbone-length hair. (Goldenpawskim and I call the new hair the Bozo undercarriage.) I also continued to shed a bit longer due to more surgeries (and probably stress). So I'm picking up what you're putting down re: nerves. But once your hair starts coming back in you have lots of options and instead of potentially a couple of years of getting back to a normal hairstyle, you may only be looking at months. So, like the others say, it's everyone's personal decision and should always be based on reducing your stress. But if you've got a decent amount of hair left to work with, the getting back to normal can be pretty fast compared to starting from scratch. Hang in there! And good luck!
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Each of you who reply seem to handle this with such grace and confidence. I have my 2nd of 4 AC treatments on Wednesday, and I am already getting a bit nervous.
I do not doubt my decision for treatment. I am also confident that trying the caps was the way to go for me. I know I can do this one if I made it through the last one. It seems my caps were frozen to hard (thermometer malfunction) and the estimated chemo start time was off by about 40 minutes (from time nurse gave us) so I wore the too cold caps way longer than necessary. New thermometer will ensure proper temp. Adjusted temp will be 2* warmer. (Gerilyn was a huge help even when I emailed during that 1st treatment.) Timing should be better since we have an idea of routine now. My husband has been incredible.
I'm taking a scarf for my neck as several of you mentioned. My ear bags arrived so I can swap them out for the ear muffs that go around the back of my head below my hairline but pinch after a couple hours.The pixie haircut I got before finding out about the caps is still looking very different but cute.
Will these treatments become so routine that I no longer feel any nerves? Any suggestions? I have set aside a couple magazines to look at. I've got my adult coloring book & I'll have my iPad.
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Leesa, if you'll be getting 12 weekly taxol treatments, I guarantee it will come to seem routine! Maybe even before then. Good luck on yourremaining treatments.
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Leesa-
I guarantee you I was anything but graceful and confident while going through chemo.
Now that you've been through the first one, you have a better idea what to expect. As you progress through treatments, it does get easier. You gain more confidence that the caps are really working. Make sure the cap fits tightly to your head, no gaps, and then try to relax. My best advice is to use your hand to push the cap down on your scalp while your husband is fastening the velcro straps so the cap doesn't pop up and lose contact.
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The second treatment with chemo was the worst as you knew what was coming, in a way. Actually I had it a bit more figured out by then and I didn't have a splitting headache so it was better-ish.
Look at it in terms of percentages. You are a quarter of the way done and soon you will be half done. There is a light at the end of the tunnel.
Hugs
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Oh everyone. Capping is a means to an end. You're in a foxhole right now and you'll have some good stories to tell and luck willing a decent head of hair. We are in the foxhole with you. And while we'd all like to be the Tom Hanks character, even he falls apart every now and then. Really, truly, just gut this out. However you can. (With dancetrancer's tips.) And like jc254 said, hold that cap down. It is a hell ride (to quote a BCO friend). Don't think you're crazy for thinking it. But you totally have it in you to get it done.
Good luck and hang in there.
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I had my last chemo on January 4. Typically I went on Fridays but that was New Year's Day, so they switched me to the Monday. It was my sixth treatment. Up to then I had been doing very well with keeping my hair. But it was utter chaos at the chemo suite.. I had an 11:30 appt., and they did not administer the Taxol until 4 pm. And the nurse was off by 50 minutes in his estimation of when the infusion would start. So I wore the first caps much longer before the start of infusion than I had previously. This resulted in me losing a great deal of my hair within two days of the chemo. The difference between the previous week (when we were taking photos for the holidays) and the day after the chaotic Monday chemo was unbelievable. A huge amount of loss in just a few days.
While the chemo centers say that they support cold capping, some nurses are more supportive than others. Make sure you are not scheduled on one of the busiest days of the year. It's not their job to care about your hair, and they don't view being super late with an infusion as a big deal. They are more focused (appropriately) on making sure your dose is correct, etc. So... we can do our absolute best. I wish I had known what to do when the nurse was so late with the Taxol, though. Take off the caps? You're supposed to start them 45 minutes before.
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If you can get blood labs the day before it helps to tighten up start times. If not, know that your doc has to order your drugs after seeing those labs and that might still take an hour. You can likely start capping after you see your doc. Keep bugging the nurses about your meds and do be careful about over-chilling and frostbite -- the goal isn't to injure yourself.
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I am on AC and Taxol. I found out today that I could have been on the TC regimen. A different oncologist reviewed my case and said she would have advised TC for me because in her opinion either would have worked for me. She said that cold caps have a poor record on AC. I made it a little over two months into chemo and still kept hair, but I lost much of my remaining hair this past week.
The goal here is to get healthy, and I don't fault the first oncologist. I am just disappointed that I didn't get a second oncology opinion from the outset. If AC/Taxol and TC would have worked equally well for my case and helped fight my cancer, then I obviously would have gone for the TC. . I am grateful to have had hair for Christmas, but it would have been nice to keep it through the whole chemo. I believe the caps work for those on TC.
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Yes, it's true that results seem to be better with TC when compared to ACT. My guesstimate is a 90% success rate with TC and 50% with ACT based on results reported by women on this thread. Keeping the caps on longer than necessary before chemo starts shouldn't have caused a problem unless you didn't change them every 20-30 minutes. You made it this far, do you have enough hair left to avoid a wig?
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I had my caps on for longer than normal for one of my treatments and it didn't cause a problem they were running late and we continued to change them every 30mins with no ill effect. I did stress about it though so I messaged my Penguin Cold Cap Rep to ask her if I had stuffed the whole thing up and she said no it was better to have them on longer that not to have them on for the required 50 mins. On another topic I need some old timers to tell me to stop being stupid this Thursday I will be 6mths PFC I've stopped shedding but am still washing my hair in the sink although with warmer water would I be safe now to wash it in the shower? I've also been using my straightener to with no problems. I think I'm just being a worry wort!!
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Aussiegirl - get thee in the shower girl! It's fine!!!!!! If your hair is surviving the heat of a straightener, why wouldn't it survive warm water in the shower???
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Aussiegirl, GO! It will be the best shower ever.
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Aussiegirl, I'm almost 8 months PFC and I still wash my hair in cold-ish water. But I'm still shedding, so that's another story.
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Aussiegirl - go for it. I did the same thing ... everything back to normal except for the warm water wash. I finally did it and had no problems. It will be the BEST feeling ever!! You'll be sorry you waited so long
Kim0
