Cold Caps Users Past and Present, to Save Hair
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Cindymb, that was just my first infusuion, so I don't know yet. I think the first big shed is usually 2 wks out. I've also been taking biotin to help strengthen my hair (it's done wonders for my nails). I'll keep you posted, but I expect to lose some hair. I'm 58, and my hair has thinned and gotten more brittle the last few years. If your hair is in good shape and/or you’re younger, you will probably lose less.
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Appyfan, Thank you. Thin is fine with me. 😊 I hope you are handling the chemo with minimum side effects. 🤗
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Everyone has a different degree of success with cold caps. Some women say they’ve kept at least 80% of their hair. I’m now 6 weeks post chemo and unfortunately, I didn’t have that success rate. My hair is extremelythin all over and is still shedding. The positive is that I still have hair and new growth is coming in very fast. I definitely feel cold capping was worth all the effort and expense.
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Update: I saw my oncologist after 3 rounds of Taxol (dose once a week), using the Paxman cooling cap. The first thing he did was smile, hug me, and exclaim, "You have all your hair!" I asked him if I should have lost all my hair by now if I hadn't been using the cooling cap, and he said, "yes." Ladies, I have a totally full head of hair. So far, the Paxman cap is a godsend!
Note: I did not do AC before taxol.
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hi Maggie, are you taking hormone med like tamoxifen or arimidex? I’m taking arimidex and wonder if that’s contributing to the relentless shedding? I’m also still shedding daily.
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No, I’m not taking tamoxifen or other AI. The initial biopsy showed very extremely weak ER+. The final mastectomy pathology showed IDC Triple Negative. Both BS and MO feel it wouldn’t be beneficial for me. So I can’t even blame my continued hair shedding on tamoxifen
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Cindymb, thank you. My SEs have not been too bad so far. My jaw hurt the first few days (we had the cap chin strap on too tight), I have some mild fatigue, and sore mouth/throat (mild). Very mild nausea, which is alleviated by eating something. Some mild heartburn, and taste changes. This is Day 4. I echo what so many others have said-drink tons of water, eat small, bland meals, and exercise a bit. I was very fatigued this morning, but had a protein shake, rested a bit, then made myself go for a 10minute walk. I felt MUCH better after the walk. When do you start chemo
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I started TCH+P January 2018 and cold capped using Paxman. If I didn't tell people I was undergoing chemo, they didn't know. I did thin, and cried more than once because of how much would fall out. I never wore a hat or combed my hair over or anything. There was one baldish spot on the back, but hair hid it, and even then, I would have to point it out for people to see it.
I am exactly three months from my last chemo and my hair is coming in thick (and growing straight UP in some places). It hasn't shed in at least a month, if not more. I have colored it twice with 28 day coloring (the first time I was three weeks after the last chemo - I was so done with the grey) and had it cut once. I had it cut twice during chemo. I'm back to shampooing every day with whatever I have on hand.
Bottom line - for my treatment, it was six days out of my life to use the cold cap. It was completely worth it.
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Maggie-Dang, I guess this chemo just keeps on giving. I’ve had to change my part to cover a thin area. Are you still able to go w/o wig?
Anniescouch-thanks for the view from 3 months out. Are you taking tamoxifen or an AI?
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RE: size caps, fitting
I am using Paxman. I have size Medium for the inner blue cap, and it fits quite snugly, with the provided head band which I put around my hairline so it stays snug. The outer, neoprene cap, is a size Small. It cinches down much better than the medium did. I spend a lot of time making sure that my whole scalp feels tightly covered each time. The size Small blue cap didn't cover all my hair line. I get a snug fit with these two different sizes. I have Infusion #3 today.
I look like I have a normal head of hair. In fact, it has thinned, but not horribly. If I had to guess, I suppose I have 85-90% of my hair. I have washed my hair almost never--rinsed out the conditioner on infusion day, washed hair on Day 3 because (Penguin protocols say this) it's a day when lots of the poisons are coming out of the pores and cleaning hair that day can help scalp not react.
I do have ice on my hair when I take off the blue cap. I always bring a beanie or a snood or a kerchief to wear out the door after infusion, since I have that conditioner on, and a freezing cold head, even when it's 95 degrees outside, and my hair looks awful after being in the cap.
Just now fluffed and styled my hair for daughter's wedding--looked good! Didn't need the Plan B emergency wig---had plenty of hair to look normal in all those photos, and this was 4 weeks after 2nd infusion---I got one week off between TC #2 and #3 for wedding, so I could feel good that 4th vacation week. So, I'm halfway through infusions, and hair is hanging on well enough, at least for now, to look pretty normal.
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Thsnks,HikingLady, I m glad you were able to attend your daughter ‘s wedding with full head of hair!!! It’s a really a true gift!!
Great decision with sizing that’s smart
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Rwns - At this point I am not taking either. I finished with rads last Wednesday and my MO wants me to "heal up" from radiation. I told her that could take years
. Then she scheuled to meet with me in October for the Tamoxifen part of things (I still have Herceptin until January).0 -
Appyfan,
I go for my chemo class in two days and will find out then. We placed the order for the caps on Sundsy night. Anxious to get this all started.
🤗 Cindy
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Cindymb, I hear ya-the anticipation for the first one is crazy. I'm now on day 6 and starting to feel better. Fatigue has lessened. Didn't really have any GI issues or nausea, except for mild heartburn. I walked a little every day, and drank as much water as I could. My MO doesn't give Neulasta unless WBC counts go down. Crossing my fingers that my counts are ok when I go for my follow up this Thurs. I had some mildly annoying bone pain as it is (I figure that's my body trying to ramp up the white cell production on its own), I dont want to experience the Neulasta bone pain if I can help it. Cmon body-fix yourself! If I continue to improve, I could probably go to work tomorrow, but I'll wait to see my blood levels and go in on Friday if they're ok. I have a desk job, but interact with the public at times, and don't want to risk picking up something. Keep a positive attitude and take one thing at a time. Do something fun before you start!
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Appyfan : I do get a Neulasta "on-body" injection at 27 hours after each infusion. The next day, I start taking 1 Claritin and do that for 4-5 days. That apparently solves the bone and muscle pain, which I haven't had. Cycle #1 and #2 I felt very sick and icky days 3 and 4, but I think it was EVERYTHING, not necessarily the Neulasta. Coming off steroids, and the two anti-nausea "pre-meds" that were infused before the chemo have run out of their 2 day half-lives, and it's all still concentrated in my system....I try to drink 3 quarts of water Day-1, Day 1, Day 2 , Day 3 and all of that is supposed to help. Thank goodness, Day 5 usually is a turn-around Feel-Better day.
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Rwns, sorry for the delay in replying. My hair has become so thin and then with the gray growth, I have resorted to wearing a wig a few times. Luckily, I can usually just wear ball caps, which I prefer. The wig feels so foreign and very hot. My eyelashes have decided to really shed these last two days. I’m now down to just a few remaining on each eye. At least the eyebrows continue to grow in.
Tomorrow is my surgery to get rid of these expanders and chemo port and get the implants. I feel as if maybe there is some light at the end of the tunnel! I want to emphasize to all you ladies just starting out with cold capping, I am definitely happy with my decision to stick with it
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ladies, I talked today to Paxman rep , and she mentioned the ice on hair could be due to excessive spraying the head. Which I didn’t do! She said it should feel snug. Hopefully I did right sizing!!!
Hope all girls feel better from chemo! I m posting there in Chemotherapy topic in August Chemo 2018, feel free to join ther
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Maggie-good luck with surgery tomorrow! Lashes are zippo, but I find falsies are pretty easy now. I use ‘Lashes For Days-Natural’, easier than mascara.
And I too am so glad I did CC!
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Hi there cold cappers!
I need some insight and encouraging words from those who have been down this road! Tomorrow is Taxol #3 (weekly) and I did 4 DD AC Tx's using Dignicap. I have auburn hair and had LOTS of it, very thick and wavy/curly. Had the Big Shed starting right on day 21 and then it slowed down a bit. But shedding picked back up just before I started Taxol and really hasn't slowed down at all since then. I feel like I'm really slowly going bald. No true bald spots yet, but super thin.
I know cold capping does not work for everyone and I'm so grateful that I have any hair on my head at all right now. But is there a point where it will slow down again? I'd say I've lost more than 50% at this point and still have 10 Tx's to go. I've attached a picture below. You can see just in the last week how my bangs have really thinned so much! Really nervous to wash it tonight!!!
Is there hope that I'm not going to end up with the Gollum look in a couple of weeks?
Thanks for listening and any insight!
Kim
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kdrake- beautiful hair!!! I don’t see much of a thinning- it’s your imagination!🤗I heard cold caps are working better with T C regimen , and I m using Paxman caps they have machine at my hospital I start taking pics as well - will see how it’s goes!!! Good luck to us, to keep those beautiful Goldilocks!!
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kdrake, I agree with bostoniongal, I think your hair looks great. Keep it up. I hope mine looks that good on day 76. I’m only on day 7 and haven’t started to shed. Your part looks better than mine
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Kdrake-super pretty hair! I am 2 months post TC, and have been shedding a lot daily for a long time. I too have the widening part and very thin spots on my crown and thinning all over. I am pulling my hair up in a Barrett on the top of my head and it covers things up fairly well. Wash day is always the worst, but I don’t think that the washing takes the hair out… I just think it loosens up hair that has already detached. Could this current shedding be from your earlier regimen...delayed response. I think that’s what I’m experiecing. Do you have any new growth? I try to remind myself that it is amazing how much hair we have on our head, how much we can shed and still looks semi-normal.0
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Thanks for the replies and kind words!
I knew going in that the AC+T was going to be much tougher to keep my hair. But I figured what did I really have to lose. My daughter is getting married next June and I am not sure I can really rock the super short post chemo pixie look very well! ;-)
No new growth, although I have heard that you can start growing during Taxol after the DD AC. Fingers crossed!!
Kim
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kdrake1007,
Your hair looks great!
🤗
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Kdrake, I agree with the others. Your hair still looks very thick! I had my exchange to implants surgery two days ago and am wondering if the shedding will ever end. Unfortunately, the last of my eyelashes just fell out the morning of surgery. Rwns, thanks for the fake eyelash suggestion. While I’m recovering from this surgery, I can play around with trying to use them.
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hi kdrake...your hair looks sooooo pretty still
I have lost most of mine from the sides and underneath and what is left on top is pretty dried out. So I’m doing some creative braiding and just trying to let it go.
Keep your chin up and good luck!
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The last of my eyelashes fell out yesterday, but the eyebrows are coming back in. Strangely, they are growing back in places I never had eyebrows before, so I am actually having to pluck them to keep everybody in order! What a trippy ride this is.
Maggie, Good luck with the false eyelashes… I’ve actually gotten pretty good with them, just remember to leave yourself extra time to get ready in case you have to do re-dos.
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Last Saturday was our daughter's wedding, and here I am that day with my own hair on. Hair is thinner, but this photo is at the end of #2 infusion cycle of TC. I'm using Paxman, cinched down (inner size M, outer size S), and really babying my hair. Not shampooing very often, being gentle, and it is definitely shedding, but still mostly is hanging on.
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HikingLady - you look great and so does your hair! I am using paxman as well - still have most of my hair after round 3 - just some thinning on the crown which I’m using magic toppix for coverage where it’s a bit thinner - hoping I can get through another 3 cycles with minimal loss!!
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mmm- biking lady - you rock🎊🎉can't tell - such an elegant lady!!! Paxman rules!!! I hope I can achieve the same!!! !!
Bhegg- good luck as well!!!
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