Cold Caps Users Past and Present, to Save Hair
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Happy New Year, cold cappers!
I am almost 10 weeks PFC and just completed rads this morning!!
As I close out 2018, I finally took the time to create a collage of the photos from my cold capping experience and I wanted to share with you and future cold cappers. I did the AC + T chemo and knew going in that my success was not a given. I'd say that I lost about 70-80%, but I still feel that I was successful and would do it again (hopefully I won't ever HAVE to!!).
So here is the photo story with dates. I had lots of very thick hair to start, which probably meant that I wasn't getting great contact with the silicone Dignicap cap, even though I soaked my head each time. In late August I was convinced I'd be completely bald before I stopped shedding. I did start wearing my hair in very loose braids in mid September, and I feel that helped slow down the shed for me. I had already started some regrowth at that point. I've had virtually no shedding PFC and I did get the "rat tail" of surviving hair cut finally as my regrowth was making it look like an unfortunate, funky mullet.
I saved the braid so I can use it as a match when I color my hair eventually.
I'm so happy I was able to cold cap!
Best of luck to those of you still in treatment! I hope your SEs and shedding are minimal!
Bring on 2019!!
Kim
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kdrake-looks like beautiful, healthy re-growth! Thanks for sharing!
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I'm new here but have read every single page. I'll be having my 2nd AC tomorrow and then 2 more every 2 weeks followed by 12X weekly taxol. My first infusion was December 6th. I started shedding on the 18th and still shedding. Washing hair is scary and SO much hair comes out. Then all day I find it on my shirt. It's everywhere in my house. No clumps just single pieces of hair dropping uniformly from my head. I'm blonde and have stopped wearing black. Cause all you'll see is hair everywhere. Today has been 10 days of this continual shed. Does it end ? I feel like I'll be bald at this rate with 15 more infusions to go.
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Hi All, I had my second round of chemo using the cold cap. I think I have lost at least a third of my hair after my first infusion. As I said before, I started out with thick hair and it’s long. I went to my second infusion yesterday with hair still shedding from the first time. I'm told that I will have just as much shedding this time around and for my 3rd and 4th time, it will slow down. I'm finding that this constant shedding is so stressful and upsetting. I wish I never did the cold cap! I'm so sad seeing this hair coming out. I probabaly should have opted out of the expensive non insurance paying cold cap and went for the wig and hat. I will easily lose 50% of my hair if not much more.My Oncologist yesterday encouraged me to give it another try and if I lose too much this time around, then skip the 3rd and 4th.
I'm wondering if there is anyone else out there regretting their cold cap. I'm only reading about women saying to stick it out - it's worth it. I've also read that the shedding will stop after a heavy period of shedding for about 4 - 5 days. Mine is continuous.
I'm tempted to shave it off and be done with it - just embrace the baldness. Maybe that would be easier then going through weeks of shedding and crying. Anyone else feeling this way about the cold cap? I would just like to go a few days of no shedding!!
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I also had continuous, slow shedding, throughout the whole time I had chemo, and for an additional 5-6 weeks. I was encouraged to keep cold-capping, and I'm glad I did. It was worth it for me, and overall, the hair loss wasn't as noticeable to others as it was to me. No guarantees, but that's how it worked for me. I feel your anguish about this---you go through discomfort and expense, and hope for a good outcome, and it's one more difficult challenge, for sure.
Warm wishes from me.
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Hi All, and welcome to Breastcancer.org. It's indeed a very individual decision, and depends greatly on your results. You may find a few helpful nuggets of information here, from our site: Cold Caps. We're here for you
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CristinPaige and AnnieSF,
I can sympathize with where you both are right now. I can only tell you that I am so very glad that I cold capped even though I lost much more than 50% of my hair (see my photos above). I have a friend who had the same diagnosis and treatment that I had about 6 months before me. She finished chemo in late February last year but did not cold cap. Her hair is just about the same length as mine right now, and I finished chemo on October 25. So her 10 months of regrowth compared to my 10 weeks of regrowth is where I view my cold capping a success. Cold capping did not save the majority of hair on my head during chemo, but it has made a huge difference in the quality and speed of the regrowth.
CristinPaige, I too had AC x 4 and Taxol x 12. I had hair everywhere too and it was EXTREMELY frustrating and disappointing. What finally helped me was wearing a VERY loose braid. It kept the hair from shedding continually throughout the day. It did not keep me from shedding, but I combed every morning to remove the loose hair and then re-braided. The braid also helped with matting and kept me from running my fingers through my hair.
Good luck to both of you, and everyone else cold capping while in treatment. It's not for everyone and only you can decide for yourself if it's worth the effort.
Kim
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Kdrake1007Thank you. Did your shedding slow down at all? If so when ?
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I'm going to be on Taxol+Herceptin soon and plan to cold cap. Given it's taxanes it's been encouraged - but I'm not sure yet whether I'll have access to the machines (Paxman/Dignicap) or only the manual method.
If I have a choice based on the chemo center (there are a few diff ones I may end up at), does anyone know if any comparison has been made of the effectiveness of the manual caps vs. the machines? For ease of use the machines sound preferable (and ease of relationships as I think my husband would not be a great capping buddy / he agrees!). But I'd sort something out on manual if I had to - did anyone have to choose or see any research on whether the success rates differ at all?
I also know my insurance (Aetna) already recognizes the Paxman & Dignicap systems so are highly likely to cover it / plus my work is insisting they have to, but I'm not sure they would cover manual capping or would be more difficult about it, as that isn't FDA approved, right?
Thanks for all the great info and tips on this thread!
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Cristinpaige,
I had a big shed start on day 21 after my first infusion that lasted about 6 or 7 really tough days. Hard to quantify how much was really shed. It did slow down a bit after that, but it never stopped shedding until I was at my last Taxol. By that time though I think the braid had helped keep my hair from catching on my clothes and matting at night. From AC #3 to Taxol #7 I was using a lint roller at least a couple of times a day to get the hairs off the back of my shirts - I hated the feeling of those hairs tickling my arms! I do wonder if I might have saved a few more hairs if I had started wearing the braids a little earlier. Probably not, and I got a comment from the nurses every week about DigniCap recommending NOT braiding your hair.
I know it feels like you'll be bald shortly, but you do have way more hair than you think. If you'd like to talk, I can DM my contact info to you. I had someone local who did DigniCap who was a great resource for me.
Good luck!
Ki
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Hello,
I am desperately seeking any advice or suggestions and wondering if anyone else had the dignicap failed? I had the very unfortunate and devastating experience of being one of the first persons to use the dignicap at my infusion center, and the nurse had no idea what she was doing, so she put me in two different size caps, a medium silicone with a large over that, and both were too big, and were not eve my head, much less freezing it, during my very first infusion. I ask the nurse, ‘how many other patients had she fitted?’ She said, “we do this all the time.” I was a nervous wreck the day of my first infusion, my biggest concern was making sure things were done right with the dignicap. My 40th birthday was less than3 weeks away and had latched on to any chance or hope that I could save my hair, or at least half of my hair, was a glimmer of of positive, that I very much needed, after such a rough year, I felt some ease, thinking I wasn’t going to have to lose all my hair on my 40th birthday. On the day of my first infusion, the nurse seemed even more unsure of what she was doing. I had read every single thing I could about how to fit the caps and tips on the dignicap website, and watched tube videos, but I was so overwhelmed when everything was happening, things just happened to fast, and even when I asked the nurse several different times, ‘if the machine was on,’ or,’ explained that I wasn’t feeling very cold, and ask her how other patients respond to this, she said, ‘everything is fine’ ‘calm down and relax.’
Everything was not fine, and I woke up on my 40th birthday to 90% of my hair coming out in huge chunks. I was absolutely devastated. My insurance does not cover any of this, and I have continued to use the dignicap, because I do believe it would have worked if the nurse had known what she was doing and/or just been honest with me. If the nurse had just said that she was new at fitting caps, I would not faulted her at all, and then I would have been happy to help figure out which was the right fit for me. Since she lied, and then was so obviously unclear of what she was doing, this has made me a nervous wreck and caused serious awkwardness anytime I have to be at that infusion place. I have one infusion left, and I will use the dignicap again in hopes to keep the very thin see through layer of hair I have left on my head, safe from the taxotere and hoping my hair will rebound quicker and that my hair will fill in sooner. I am wondering if anyone else has had this or anything similar happen with dignicap or any cold cap and what should I do, or can I do? I am in shock that this happened to me, and the awkwardness that has followed with the nurse at the infusion place. I don’t ever want to go back there again, so I will be so glad to get this last infusion over with. My hair is so fragile and still continues to come out in clusters of full strands, on a daily basis. I can’t afford a wig after the money spent on dignicap and I fear my hair is too fragile for a wig. The amount of hair loss is basically 85-90% of my hair all over my head is gone except a thin see-through layer, and I have the very front of about a quarter inch of hair from the front of my face by my ears. Luckily it is very cold where I live and I can just wear a beanie 24/7, but I am still devastated and have no idea what to do. Please help, any tips advice is so greatly appreciated.
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ADDNinja78 Huge sympathy to you. I agree with your plan; keep cold capping and save what you have. So very sorry you had to go through this unsettling and disappointing experience. It added even more trauma to the whole thing. I'll bet everyone who sees you sees the YOU behind the hair loss. That's what people who love me have continued to say about all of my physical appearance changes throughout this battle. And you're probably darling in the beanie. I KNOW that doesn't help how you feel inside. I send you warm, gentle hugs and huge empathy.
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MtKushmore:
Belated thanks for the congrats about finishing chemo! Sorry I didn't see it sooner, I wasn't getting updates on this thread.
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hi just wondering about the effects of cold caps
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I had excellent success with Paxman. It took very careful sizing, and my inner cap was medium and the outer was size small, oddly, but that worked to cinch down really tightly. I was super careful with my hair and hardly ever washed it, and I think I actually kept maybe 80%---hard to know. My hair did thin, and I shed a lot during chemo and continuing for another month. Halfway through chemo, I rocked my own hair at our daughter's wedding, Photo #1
which made me very happy. 4 months PFC, no one can tell that it's a bit thinner, and during chemo no one could tell it was thinning. I didn't have to wear bald like a big "I'm having chemo" label, and that helped me manage everything a bit, psychologically, and feel that I was maintaining a bit of privacy. There was plenty of trauma going on anyway with my DX and TX, so cold capping and saving most of my hair was a positive that offset some of the negatives. Photo #2: 2 months PFC 
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Hi Nicnnat,
I used Penguin cold caps and had great results -- some thinning, no bald spots.The key was having a good partner who's not afraid to tighten the cap and who has the patience to do it for several hours. I was on weekly Taxol/Abraxane and my side effects were not too bad, so cold capping was relatively easy to tolerate. It served as a real distraction from chemo! For me, it was totally worth it.
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Hello Cold Cappers!
I was just PM'd by a member who was looking for reassurance and thought I would share again my experience, hoping to relieve some anxiety. I am 1.5 years out from AC x4 Taxol x12. I used Penguin Cold Caps and had pretty good success. At the end I had about 50% of my hair and it was easily put up in a French twist, a dust of Topix and things looked ok while the regrowth happened. My hair started growing in during Taxol, and I ended up with a mullet POOF that had to be gelled down for a few months, but overall, things worked out ok. I did not have issues with the cold or clumps of hair coming out. There is a bigger shed that occurs around day 20 but it stops. You just don't think that it will.
I don't know about the other caps but Penguin's fit close to the head and that seems to make a difference. I had one spot of frostbite, that is how close it was to the scalp.
I hope everyone is feeling well while on chemo and that your capping goes well. Keep the faith (even though it is hard to do!!)
Anne
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AddNinja78 - I am so sorry this happened to you. I would contact DIGNICAP to see if they have suggestions as well as finding out what kind of training they provide and require for faciities using their device. Maybe one of their trainers could come out and be there for you next infusion. Any health care service should be done correctly, placement of cap/when/how long and temperature are important. DIGNICAP was not available where I live, and one facility even refused to let me try cold capping, so I switched to another clinic that did let me. I used CHEMO COLD CAPs. ( I think CHEMO COLD Caps were the ones who got the FDA approval for DIGNICAP). While I was disappointed with how much hair I lost, my surgeon and oncologist were impressed with how much I still had. I was their first patient to try cold capping. I lost most of my hair on the morning of the 2nd infusion, there was more loss (but not nearly as much during the 2-4 treatments, and a little after it was all done. It came back quickly, and still has some of the "chemo curl". I think I might have lost more hair than most who do cold capping due to the fit of the cap. I have a rather large head. When I sent CHEMO COLD CAPS a picture of how the caps fit, they were also concerned. Even though their caps were roughy the same size, there is some variation since individuay made. They measured rushed the largest ones they could find, they arrived before treatment started. 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 CHemo Cold Caps (DIGNICAP not available). 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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Hi everyone,
I promised myself I would come back after treatment to post my cold capping results, so here I am, about a year PFC. I'm grateful to report that I lost no hair except for a band at the nape of my neck and near my temples/sideburns where the caps didn't touch. I didn't even realize I had lost that until it started growing back in. It was a painful and expensive process but worth it for me. I've posted before and after pics here. This is just before I started chemo and had just got my hair highlighted and cut blunt. I was very scared. The overhead light was a little odd so it changed the color a bit.
This was during a chemo treatment. As you can see, I helped myself to plenty of Ativan to take the edge off.
This was taken around 6 months PFC.
This was taken in October, about 8 months PFC. It just dried naturally that day so it's not as straight.
I'm happy to share additional pics if anyone would like to see them. I'm also happy to speak to anyone who has questions about the process. Please feel free to message me. I want to be there for others as you all were there for me. Much love.
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Hi
Im checking in with you ladies again. I am 8 weeks post my last chemo treatment and I used Penguin caps. Things went well during chemo. I did shed but no one would be able to tell. I am a little shocked because I continue to shed 8 weeks post and it's a descent amount. I feel like my hair has thinned out more in the last 8 weeks than it did while on chemo.
Did anyone else have this experience? If so how long did the shedding take place? When did you hair start to feel normal again?
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2018summersuck Yes, I also definitely did shed for another 2-3 months PFC. It felt shocking to me, too. Now that I'm 4 months PFC, I can finally see 1/2" of new growth everywhere on my head, filling in the thin areas. So, hang in there! I empathize. It's so hard to feel patient about this, on top of all the other issues.
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Thank you @hiking lady. I appreciate you sharing your experience. I do see new growth but surprised that i am shedding as much as I am. I thought once chemo was done the shedding wouldn't last past 3-4 weeks.
Your comment on having patience is well said. After the last 7 months my patience is at a low
Thanks again
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Hi summersuck18-I continued to shed daily for a full six months post final chemo. 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. My part filled in very fast. I couldn't really see the re-growth but all the sudden everything filled in. I also didn't think it would last so long and was very frustrated. I just keep getting it trimmed to help make it look thicker, and now my old and new hair are blending pretty well. Hang in there...it’ll go fast.
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Hi 2018SummerSuck and others: Thought I would post an update 8 years post chemo! I used Penguin Cold Caps and lost about 1/2 my hair, but it was thick to start with and no one except those close to me knew. Yes, I did continue to shed for a few months after my last infusion, but eventually it settled down. It wasn't the greatest texture for a while afterward but now, my hair is longer and better than it's ever been! I get compliments on it all the time now that I'm coloring it again. So there is much hope for those of you going through the process. ADDNinja78, so sorry you had a bad start. I feel for you and know how stressful and frustrating such an experience would be. But sounds like you are through the worst of it, and if there was cold for the later infusions it should help you with quick regrowth. Hugs to everyone.
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hello
I enjoyed reading your experience with penguin cold caps. I too would like to use them but I would like to know your thoughts on the risk of scalp metastasis? I don't want to say I should've??
Thank you
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hello
Congratulations! Eight years post treatment. I too am conferring penguin cold capping. What do you think about any risk of scalp metastasis?
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hi there!
Congrats on completing treatment. I hope all is well.I too want to use the penguin cold capping system. I’m worried about the risk of metastasis. I know it’s low but what’s your thoughts? Also can you tell me when and for how long you cold capped during chemo? Also what kind of chemo?
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thank you for your reply! Just wondering. Did you every wondered about the low risk of scalp metastasis? What did you onc say?
Thx
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thanks for the post and pics! Congrats!
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Nicnnat3 Re: scalp metastasis+ cold capping. That's definitely a question that you should talk over with your own oncologist. Mine said that the risk is "extremely low." We never discussed it further, so I don't know actual statistics on it. After chemo, when I received "future risk/survivorship" counseling, that wasn't on the list of likely/usual types of mets.
I used Paxman. My oncologist's clinic had the system (machinery that pumps cold water/hooked up where I sat for my infusions) all set up for me, and they helped size my cap ahead of time. I had to order the caps (inner + outer) and pay out of pocket. I'm in my health insurance company's claim system at the moment, hoping that they will reimburse me. I had excellent success, and looked normal through chemo. To me, it seemed that my hair was all falling out, and I had lots of shedding. However, no one looking at me thought my hair was thin, and no one could tell I was going through chemo. It was nice to keep my hair, since there was enough trauma just going through treatment. I am very happy I did cold-capping.
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