Cold Caps Users Past and Present, to Save Hair
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Hi to all using Paxman, I spoke to my MO yesterday who is in constant contact with them. After looking at various boards, I wonder if my lack of success is in part attributed to not wetting my hair enough on my first round. My MO agrees it is likely possible and is discussing with Paxman. Paxman says to just dampen, but I have/had a lot of hair and perhaps it did not get through. Just putting it out there for those starting! Good luck!
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Hello ladies, it's been 2 years since finishing my treatments, however, I haven't emotionally recovered, and actually more anxious and sad than before. Recently I've been thinking about joining a support group and was wondering if such groups for post treatment exist.Has anyone post treatment joined a group or experiencing same feelings of fear of recurrence and loneliness. I live on Oakland/Bay Area. Kay
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KD-yes to all of that. I saw a counselor that was provided by the hospital where I’m being treated. They also have a breast cancer support group. Maybe ask your MO if they provide something similar. I just saw the counselor once and plan to check out the group. She assured me that feeling sad and anxious was very normal and that most people start feeling these things after the tough part of treatment is over. Just hearing her normalize it really helped
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Thank you Rwns. I’ll look into it.
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I previously posted on August 21, to report pretty good results with the Dignicap system. I'm now updating to report that I continued to lose hair for about two months PFC, not a lot at any one time, but enough so that the total losses probably were 25% or more of my pre-chemo hair volume. The losses were quite noticeable at the top of my head. I kept looking at the semi-bald place to see if something new was coming in, but it turned out to be surprisingly difficult to tell if there were any new little hairs up there. Every time I thought I saw something, it would vanish if I turned my head or the hand mirror. I am now three months PFC, and can report that I have a patch of little hairs about half an inch long sticking up out of the longer hair that's still at the top of my head. (It looks a little weird, actually.) My best guess is that it started growing sometime around the end of October, which would be 9 to 10 weeks PFC. So far, at least, it looks like the rest of my hair -- mousy brown and very straight. I was hoping for something more glamorous, since I have heard that sometimes hair comes back with a different color or texture, but apparently I am to be disappointed.
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Hi all - My mother missed cold capping on her first session due to grave hospital error. They pretty much delayed her session by 6 hours saying the cooling machine was being used for an emergency surgery (understandable), only to find out 5 hours later during pre-med infusion it was the wrong machine... It was too late to find another one and had to start chemo without cold cap. I held bags of ice over her head for a couple of hours but it was very ineffective.
She is on the TH regimen which is 12 weeks of weekly Taxol / Hercpetin (then Herceptin for a year). We have a chance of getting a Paxman starting the next session.
Q) Does missing one session render the remaining treatment useless? Or should we try with the cap forward? Any experience here? . This is not covered by insurance and unforutnately costs $6K here, so trying to make sure we have all the info to make the best decision. Thank you very much!0 -
Aw, this is so disappointing. In the grand scheme of things, treatment is more important than saving hair, but I'm so sorry about this experience. Maybe you could read through other chemotherapy threads on this site, looking for the same medications, and see what % of their hair people lost after the first infusion, without cold capping. If it's "some" but not all, I bet Paxman would help save hair from here on out, but I have no idea. At the point when most of it falls out, Day 17-21 in lots of cases, she'll have an idea of how much hair is left. If it's quite a bit, maybe it's worth cold capping.
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Bluedesert, so sorry this happened to your mom. I cold capped 6 years ago with the TH regimen. I would say it would be worthwhile to cold cap even after missing out on the first treatment. With other chemos, probably not, but I think she would have a good chance of saving most of her hair with weekly TH. From reading others’ experiences who did not cold cap, it seems that major shedding doesn’t start until week 5 or so, so you could use the Paxman machine until then and see what happens. I hardly lost any hair using Penguin cold caps. Keep us posted
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Here are my cold capping results with Dignicap. For reference, I started with thin, long hair down to my lower mid back, and my hair continued to look long despite being bald on top until after my 5th infusion. After my 5th infusion, most of the long ones fell out but I started to get regrowth on top by the time of my 6th infusion a month later. My first two or three infusions were spaced 3 weeks apart and the remainder were 4 weeks apart. It's growing back, which was my primary goal.
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Hi,
I used the penguin caps and am 5 weeks out from my last chemo treatment. I still continue to shed. Some days I think it worse than when I was actually on chemo. Anyone else have this issue? How long does it last?
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2018summersuck YES, this definitely happened to me. I kept shedding when chemo was finished. I had GOOD success with Paxman, but I had thinner hair at the end of chemo. Continued to shed for the next 8 weeks or so, but not huge chunks, just kept dropping hair. It stopped around 8-12 weeks PFC, and seems fairly back to normal.
Except....I'm on Anastrozole now, and I notice hair thinning is also going on. Nothing like as much as during and immediately after chemo, however.
My final look after chemo and continuing for a couple months was enough hair to pass for a full head of hair, but thinner, especially at the crown, and I have a rather wide part. It really passes for a full head of hair, though, even after all this!
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bluedesert - I'm sorry you went through that. I do not know if missing the first cold-capping treatment skews everything or not. Are you doing cold capping through the facility where they provide a device such as DIGNICAP or on your own such as ChemoColdCap/Penguine with dry ice? Given the expense, hopefully the manufacturer would know know about missed treatments and how they might affect the overall treatment. Even with complete treatments, results really seem to vary. I did cold capping on my own with lots of help from friends and family. While I lost a lot of hair, and felt discouraged, both my oncologist and surgeon were impressed with how much I still had. I was the their first, and the clinic's first, patient to try it. Search for Stephanies Terric Tips on getting through Chemo on this forum. Her post is where I found out about cold capping. Her other tips were great as well. My insurance would not cover it, but I had enough medical expenses that year, that I was able to deduct some of it from taxes. Several posts on this forum mention what people think helped (keep hair), such as minimal washing, avoiding products/ingredients or using specific products. I do take biotin, and notice thicker/faster growing nails, and I think it may help my hair as well. I did continue to shed for a couple of weeks after the last treatment, but not as much as during. Good luck to you
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals.
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Cold Capping using ChemoColdCaps/dry ice. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger.
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Shedding Report! After a full six months of shedding post final chemo, it finally stopped! I hope to encourage cappers that get woefully frustrated by the constant shedding, as I certainly did. I did have to use a little colored powder on my part for a brief period, but never had balding, didn’t need a cover at all. And my part filled in very fast. I couldn’t really see the re-growth but all the sudden everything filled in. But wow, I didn’t think it could go on so long! I’ll try to post a pic.
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Question - how soon after your final chemo did you start blow drying/curling your hair again? I’m 10 weeks PFC and I’m still washing in cool water and air drying but my hair is def curlier/ wavier than before (even tho I kept at least 70% of my hair) and had a mind of its own lol. Just curious of others experiences
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I know what you mean Bheg79. The texture if different and not sure how to make it look better with out drying it or adding product to it. I am still shedding and I am also washing it will cool water. I'd love to hear from others how long the shedding lasts.
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Bheg79-I waited until I stopped shedding to blow dry but I don’t know that you need to wait that long.
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Hi All,
Well here I go again, changing treatment, and back to cold capping! Anyone tried capping on the combo Carboplatin/ Abraxane? I am wondering what my success will be....I was pretty lucky with Taxotere..I was able to keep enough to not need a wig. I am wondering if this is a harsher combo. Anyone?
I hope you all are feeling well.
Amy
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Hello All,
I’ve had one chemo treatment (TC) using the Dignicap on December 11 and have my next one Jan 2. I will have a total of 4. I’m doing everything they tell me - wash once a week, satin pillowcase, no products, hair dryers. irons, and I’m using natural shampoo/conditioner. Needless today, I’m not looking too pretty! In the last 6 days I’ve notice a considerable amount of shedding. My trash can look so like I just cleaned my brush. I have a lot of hair to begin with and nobody can tell but me so far, but I’m wondering if it will continue to get worse. It’s discouraging and I also feel a bit superficial being so concerned about my hair. Also, I was told to wash my hair the day of chemo treatment for best results but my next time to wash my hair for it’s weekly wash is the 31st so not sure if I should wait and go 9 days without a wash, or just wash it today which is 5 days since my last wash and then wash again In 4 days. I’m trying to do everything by the books to preserve my hair. Does anyone have some advice for me?
I am also feeling depressed since starting chemo. Going through a bilateral mastectomy with reconstruction was hard and painful but I managed to keep my spirits up. Chemo is making it all seems so real to me - hard to stay happy - hard to explain. I wonder if others feel the same way.
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Hi AnnieSF
I used the paxman system which I think is similar to dignicap - I had 6 infusions of TCH and kept about 70% of my hair - i noticed my biggest shed right after my second infusion which left an very thin patch on the top of my head - I did shed everyday - I hated brushing and washing my hair it was so depressing - my last chemo was oct 22 and I am still shedding but definitely less - I was washing my hair the night before chemo and then once a week - just be gentle with your hair and yourself - I still haven’t usd a blow dryer or anything on my hair but I am washing twice a week now 😊
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Annie-I felt exactly the same way, depressed, anxious, and constantly reminded of my cancer with the constant shedding. I was told that people with thick hair will shed more, definitely was my case. I washed the 3rd day after chemo, and then about every 4 days. I did penguin cold caps, so instructions might vary. My cc attendant said that when you’re shedding after a wash or when brushing, you’re not pulling out healthy hair, you’re just removing hair that has already separated from the scalp. I kept trimming it as I went, and now have a short bob that makes it look a bit thicker. I posted a pic above. It’s amazing how much hair we can lose and still have adequate coverage. My cc attendant also reminded me that we normally shed 50-100 hairs a day, so some of the shed would be happening anyway. I actually counted them for a few days, some days I lost 300 plus! And don’t beat yourself up over stressing about your hair...most women say it’s the toughest part of this journey. Virtual hugs...this is no fun, but it’ll be over soon.
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I'm due to start THP on 1/14 and am considering cold capping (Paxman). My hair is already thin due to tamoxifen and menopause. I'm concerned that the shedding that is to be expected with cold capping is going to leave my hair too thin and that I'm just wasting my money. Have any of you started with thin hair and been happy with the results?
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I used Paxman. I really think that my success was helped because I was absolutely obsessive about a tight fit everywhere. Also, I used a lot of the provided conditioner to slick my hair down really well (near the roots).
I washed my hair only once every infusion cycle, on about Day 3-5, to get the residue off scalp skin from whatever chemo sweated out. I used warm water, not cool, but I was gentle. I kept my hair in a kerchief or a wrap or a scarf or lightweight hat if I thought it looked too bad. Washing hair every three weeks sounds icky, but really, it was not. Perhaps chemo dries out hair? Anyway, it looked a little scraggly because I wasn't fluffing it up with any blowdrying (except a few times for ultra special occasions, like my daughter's wedding, midway through chemo). I did not love doing the seldom-washing, because I really love the feel of a clean scalp. However, no one really could tell that I wasn't washing it, and also I was committed to doing whatever it took to trying to keep my hair. I absolutely did keep 60-80% of my hair, and it looked completely normal (to other people) all the way through. I DID constantly shed hair. Everywhere. Maybe 20-50 hairs a day, all over the place. As if a Yeti had moved in with my husband and me.
I highly recommend, to anyone who's wondering if it's worth it, to do cold-capping if this will help you manage everything better psychologically. It helped me feel a teeny bit more normal, through all the trauma of the mastectomies and going through chemo. And, I felt that it preserved my privacy. I walked around without the bald head which says Going Through Chemo, and that felt like a small help to the preservation of my identity.
My hair is medium short and layered. Even now, almost 4 months PFC, I have thin areas, and by strategic back-combing and styling, I can disguise them. My hair kept shedding, gently, the whole time + for another month PFC. And, even so, I still look like a person with a whole head of hair.
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Twiggy, I have had thin hair all my life, and I had a pretty good result with Dignicap. As I understand it, having thin hair is actually an advantage, at least at first when you still have all your hair, because it makes it easier to achieve a close fit with whatever cap you are using. A close fit is essential to cooling your scalp enough to make the system work, and apparently having lovely thick hair makes it harder to get the close fit that you want. I did lose 25% or more of my hair, and it got thin enough on top of my head to be noticeable. However, it never reached a point at which I felt self-conscious about going out in public without a hat or scarf to conceal the thin area. And like HikingLady, I felt better having my own hair on my head, even though it was quite thin. It is very hard to predict what any individual's result will be, and of course you will have to decide whether the result is satisfactory for you. But I would not rule out cold-capping just because your hair is thin to start with.
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Hi Rwns, thanks for your message. Good to know about the thick hair shedding more. I’m just hoping that it lightens up a bit. For some reason I’m not seeing your picture. I was wondering if I could get a trim. I have long hair and thinking maybe it’s too heavy - who knows. I just wish I could fast forward in time. My recovery time after surgery flew by. Time between chemo is dragging. 😞 Sound like you’re done with chemo. Congrats and thank you for your support😊
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Hi Bhge79, thanks for your message. Nice that your chemo is behind you and you managed to keep 70% of your hair! 😊If I can manage keeping that much, I think I'll be ok. I wonder how long we have to be cautious with our hair after chemo. My last one is Feb 13 and I'm going to hawaii for Easter (need something to look forward to) I'll have have to find out about swimming in both the pool and the ocean - might not be a good idea. I just hope I'm not bald. Going to Hawaii with my expanders is enough punishment
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Hi Annie, I finished four rounds of TC using the Dignicap in October and am still shedding over two months PFC. I lost about 25-30% of my hair. It’s noticeably thinner and there is a very small bald area on top which has started filling in as has my widow’s peak. I washed (and still do) my hair twice a week using Sojourn shampoo and Kenra spray conditioner, then put it up in a claw clip or a loose side braid.
Stick with the cold capping, having my hair made all the difference going through treatment.
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Hi Lavenderlee, I’ve been shedding for over a week but the last few days have been extremely heavy shedding and tonight, clumps of hair came out when I gently combed out a knot. My garbage can looks like I got a major hair cut and it’s just from 2 days of shedding. If I keep shedding like this, I will lose all of my hair and I have thick hair! I’ve only had one treatment and have 3 more to go. My next one is Wednesday. This is both discouraging and depressing. I don’t have a bald spot yet but the shedding is nonstop. I’ll stick it out but I wish I could know now if this Is considered normal.
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AnnieSF-pic is about 12 posts back...I can re-post. That was after 6 months of PFC shedding...pretty much non-stop. I was sure I’d be bald. Just be sure your fit is as tight as possible with full contact in all areas. Will be thinking of you on Wednesday!
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AnnieSF, hair is a good insulator, so it is possible that your thick hair made it difficult to get your scalp as cold as you would have liked for your first cold-capping session. That could account for extra-heavy losses at first. Once your hair is thinner, you may see that the losses slow down a bit. And I suspect that feeling that baldness is just around the corner has happened to most of us at one time or another, so you are not alone!
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