Cold Caps Users Past and Present, to Save Hair
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Thank you!! Ii appreciate the encouragement.
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HI
This is for all of those that have asked about the cold caps. I used Penguin Cold caps and the service and support from them was AMAZING. They were so helpful. It isn't an easy process but for me it was worth it. I am a private person, and losing my hair meant everyone knew my business. I have ALOT of thick hair so it would have been quite a change for me physically. I didn't worry about metastatis. If I had a different kind of cancer than maybe, but I didn't. Not sure if that is right or wrong, but that's how I handled it. I am almost 9 weeks out from chemo and a i do have hair and no one would be able to tell . All my doctors were shocked. My hair is not the same but hoping the shedding stops soon and the texture goes back to what it used to be. Hope this helps
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For Nicnnat3 and others who may be concerned about scalp metastasis, see the article on this site titled "Cold Capping and Scalp Cooling Systems." It states that cold capping has been used in Europe since the 1970's, and studies there show that scalp cooling does not increase the risk of scalp skin metastases. That is what my MO said, too.
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Hi to all I used Penguin Caps thru 4 rounds of
TC last year- I kept 80% of my hair thru the infusions and lost another 5 percent thru ongoing shedding for 5 months post so ended up with 75%--was very pleased with that and no one could tell except my daughter who was my capping partner--bless her!sticking with the 7 hours of capping ordeal changing every 25 minutes was very difficult-daughter wouldnt let me quit-Highly recommend cold capping with Penguin-most important tip is cap must be very tight to head- I did lose some along nape of neck and along side hairline -didnt even realize till it started growing back in.
just passed 1 year mark on antihormonal - Letrozole- doing ok with it-started with hair shedding--mild--about 5 months in that maybe-hopefully is starting to level off . has not been enough to upset me but after all the work of the caps--makes me nervous
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I to, am using Penguin caps. I have started to see shedding and I have my 2nd TC infusion tomorrow. So far I am pleased but it may be a little early to determine if what I am seeing is a positive result. I hope so!
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So, today was my first normal hair wash since September. Normal temp water, normal shampoo, actual scalp scrubbing, normal shower spray strength - lololol. Felt great!! I am 9-1/2 weeks PFC. I colored my roots at 8 weeks PFC with Naturtint with zero issues. I used Paxman and lost almost no hair. : )
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@kalie, how did you wash your hair using the Penguin caps? I wash once a week with cool water. Today I had a large mat of hair come out, and I comb it with a wide tooth comb daily, careful not to pull on my scalp. I am shedding like crazy. If this keeps happening I am not sure I'll have any left. I have completed 2 rounds of TC so far.
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@MCanDoIt I am also dong the cold cap and have two rounds of TC left. I am shedding like crazy and wondering the same thing. I didn't think I would be so emotional but I feel like I have lost so much hair. It I continue losing at this rate I won't have any hair by the end of the wee
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I also had 4xTC, and I did Paxman. It seemed like I shed all the time, but it didn't look all that thin to other people. People on this thread said "keep cold-capping." "Don't give up."
One main reason I kept going, was that small % of people who permanently lose hair after chemo (Taxotere, especially, I think), and I figured, whatever hair I kept was worth it.
I almost never washed my hair---only Day 3 after an infusion. I think this definitely helped. I just wore a hair band or something like extra hair clips here and there instead of blow drying it and having fluffy hair. I figured, oh well, bad /flat hair for 3-4 months means I'll have hair. I wore a "snood" cap to bed, and certainly I did shed all the time. Even so, with lots of shedding, hair looked normal-ish to others.
I'm 4 months PFC and have 1" of new growth where the thin spots were. Makes my hair look fluffy again. I resumed normal daily hair washing, etc. about 3-4 weeks after chemo, and my hair stopped shedding by about 6 weeks PFC. New growth started at 2-3 months PFC.
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@iloveminnie I feel the same way. I washed it yesterday and had a large mat of hair just come out. I was devastated. But today is a new day, I still do have hair and some hair is better than none. My daughter and I are going to pre comb it before the next washing. I hope that will stop the mats. I am glad I cut it to a short bob before my treatments started. It's so much easier to take care of!
@HikingLady, I am scared to even touch my hair. I have thought about a headband but was afraid it would pull. So I basically spray it daily to comb through it a little and let it go. A bad hair day is better than no hair day. Thanks for sharing your experience! I am definitely not going to stop capping. I hate it but I've come too far to stop now! I can't wait to wash my hair like normal or even run my hands through it!
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Hi Ladies! I peeked in on this topic after a year or so, curious about the state of cold caps these days. I started my chemo and penguin cold capping in Jan. 2017. 12 weekly pacitaxol followed by 4rounds of A/C 3 weeks apart. I took the drugs sequentially so I could work longer and with hair. By 10 weeks of pacitaxol it was obvious I was losing too much hair so I threw is the towel with capping (which was kind of a relief). By week 12 I was bald.
The ONLY thing I cried about during BMX, chemo, rads and DIEP was my hair. I hated the thought of wearing the “I'VE GOT CANCER" scarves. Rarely left the house after I stopped working. Then I just got tired of it all, got a scarf and just didn't care anymore. Got a wig I ended up not liking and only wore it twice. What I found was that ppl were really nice when I was wearing the scarves. Ppl were sweet and generous and helpful. All my worries were a waste of dread and energy!
I still hated how I looked bald and worried about how I'd look during the loooooong grow out.
About 3 months after ending chemo my hair started growing. I went from straight shoulder length (dyed) blonde hair to bald to a curly salt and pepper pixie. I LOVED IT. I got so many compliments. Have you noticed how cute ladies look with really short hair? You will too! Its now 2 years later and I've still got the S&P pixie (but sadly no more chemo curls). It's liberating! It takes me 90 seconds to style it in the morning. Instead of paying to cut and color it, I'm rocking a bunch of cute earrings and brand new make-up.
So - all this is to say that losing your hair IS just aweful - it sucks. It's kicking a girl when she's already down. Its losing your identity. But - try try try to remember that if your capping isn't successful, being bald lasts a relatively short time in the grand scheme of things and frankly no one else is even giving it a thought. Once your hair starts growing back it gives you a chance to renew yourself or be a whole new you. You're all strong and you'll get through it wonderfully. Hang in there!
Lanne
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Iloveminnie2 and McanDoit,
I felt the exact same way! If you go back a few pages in the thread you’ll see pics I uploaded from before, during and after treatment. I used DigniCap. I had LOTS of hair to start but lost probably 75%. Kept cold capping and wore my hair in VERY loose braids for the last month or so. My shedding slowed considerably and I had very little post chemo shedding. The real positive outcome for me is that when regrowth started (about Taxol #7) it was real healthy hair, not wispy bird fluff. So while the cold capping didn’t save the majority of my hair, it did a great job protecting my hair follicles.
Umakemehappy - isn’t that first normal warm shower just the best!!!
Hang in there, cold cappers!
Kim
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To add to what Lanne2389 said...
I did have great success with PAXMAN, but I kept thinking how weird the whole thing was. Some days, I'd be walking around out there in the world with hair, but feeling like CRAP. Weak, exhausted, miserable, but my hair was there, so no one knew. This was ironically kind of un-helpful. If I'd been bald or rocking a scarf and obviously being a chemo patient, I think people's compassion might have been welcome! Instead, people probably wondered why I was walking so slowly and looking so grim some days. I was determined to be secretly going through chemo, just because of privacy, and it worked out. But, I can see the up side to being bald, also the cute new short hair is definitely darling on threads where people share it as it grows back. Everyone gets through this different ways. And, now that I'm out the other side (4 months PFC), I am getting my life and my stamina back. Sending warm wishes to anyone going through it right now. Hang in there, you'll get through it all, one day at a time.
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sadly my first two rounds of Paxman have left me resembling Ben Franklin. I am at my 3rd chemo today and not putting myself through it anymore. Had there been promising results I def would have but there is nothing I can do but cover the top of my jead. I am thrilled for those of you who had success. I feel my biggest problem is that I did not learn about it until too late and used one of the hospitalshead. The 1st time and relied on their knowledge of how to put it on etc. No luck. I shed A LOTby day 21 but was ok hairwise approaching my second chemo (tchp every 3rd wk. With herceptin in between weeks × 6) but after the second the shedding only picked up and I ordered my wig. Best to the others using it.
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I used a very gentle baby shampoo and conditoner every 5/6 days with tepid water --combed in sections each day with a wide toothed wood comb and minimized pulling by holding onto the hair next to my scalp--no brushing and fluff dried to get some of the wet out with dryer on low and then let it air dry. my hair is naturally wavy so just dried in those waves and I touched up just the ends with flat iron--
After my 4 infusions were over I used a paint brush to just lightly paint roots every 4/5 weeks for 4 months and then colored hair- all worked out for me. The post shedding stopped at about 5 months-so glad I capped-made ALL the difference for me in coping emotionally---be well, Kaylie
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@kaylie that sounds very similar to what I have been doing. I dampen my hair every morning and gently comb through it and gently wash it once a week. I usually have a large pile of hair by the time I am done, not to mention what I shed during the day. My 3rd treatment is next week. I just hope the shedding slows. Less hair means those caps are going to be colder!
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what cap system are you using- ? I used Penguin and pelleted dry ice- was all so confusing the first time as to how to manage it all but quickly fell into a routine with my partner daughter who kept me going in the 6/7 th hours each time when I felt I couldnt keep going- but am strong and was determined and kept most of my hair as a result and soooooo glad I stuck with the capping--best to you--lots of support here-hugs,Kaylie
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@kaylie - I am using Penguin as well. I only have access to larger slabs of dry ice, but we make it work. Yes it's difficult but worth it! My husband is my cap helper. He's been my rock through my mastectomy and now my chemo. I have about 60% of my hair and I have my 3rd TC infusion next week. I dread it and the caps as my hair has thinned quite a bit in the last few weeks and I know those caps are going to be colder than before. My shedding seems as if it's starting to slow down now. The past 2 days, I have lost less hair each morning when I comb through it. Chemo days while capping are very long but worth it!!!
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How I managed the FREEZING HEAD: Best was at the end when I thought of taking a Lorazepam ahead of infusion. Also good was remembering to take 2 Tylenol ahead of infusion time. Really good was when I thought of taking a Hydrocodone. Also helpful was super focused meditation for that first 10-15 minutes of freezing. I worked on COUNTING and just thinking of the numbers and nothing else, and that pushed "my head is freezing" out of my consciousness until my brain stopped complaining about the chill, which was always the case after 10-15 minutes.
Yes, Cold Capping makes the chemo day even longer. My hair thinned, and the most anxiety was always about HOW MUCH MORE WILL IT THIN, but everything was "just a bit" at a time. That was true for side effects, pain, discomfort, losing hair, etc. and I just focused on the Here and Now Moment whenever possible, which helped with that anxiety.
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@MCanDoIt. I agree I willcontinue to use it and I still have 60% of my hair. Still shedding. My next txmnt is in 2 weeks halfway thru and can't wait to be done.
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I am concerning using Paxman Cold cap because my insurance will reimburse at 100%.. only question I have, if I my hair really thins out I would want to wear a wig. can you wear a wig while using a cold cap. dont mind trying if I don't have to pay anything.
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No wig possible during cold capping. You could put one on again before you walk out the door, though. Cold capping is just for during infusion + a certain amount of time (1 hour or so) before and after, and you’re in the chemo infusion clinic. No one else would see you. Many patients iin there are bald. Paxman worked REALLY well for me. I wish you good success.
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Hi all. I was diagnosed recently; lumpectomy (clear margins); Sentinel Nodes (clear); Triple Positive.
So I'll be starting Herceptin and Taxol in the next month or so. Because I'm not telling my 90-year-old parents or lots of other people around here (I'm pretty private and independent) I'll be going the cold-cap route, though right now I know pretty much nothing about it.
Is there a source that explains it, any choices about it? Any worries I should be dealing with?
Thank you all!
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BatyaD, the "Rapunzel Project" has a website with lots of information about the various cold capping systems. That would be a good place to get some basic information.
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BatyaD: If your chemo clinic offers a system, that’s the easiest. That’s why I used Paxman. Once you’ve settled on a brand, they each have information on their websites. No guarantees, and success depends on the fit of the cap, and which chemo meds—-some are harder than others on hair. No one knew I was going through chemo. I still got the ‘tingling’ feeling during the usual shed times, and I lost a lot of hair. However, the amount I lost wasn’t really noticeable to others. I had good luck, and wish you the same
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BatyaD: I have same diagnosis as you, and told NO ONE except my sister, husband and my two kiddos. My best friends, in-laws (whom we vacationed with during all this), work, nobody suspected a thing. That was my first question at the start of all this: will I be able to keep it to myself, and I now know that the answer is YES! ; ) The reason I'm keeping it secret is that my mom is terminally ill and we need all focus to be on her. Also, if she knew what I was going through.. it'd just be too much for her to bear.
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Thank you RockyMountainGirl--I'll look into the Rapunzel Project (great name!)
Thank you, too, Hiking Lady. I guess they have some system or other, but I don't know the details yet. I'll find out from my Nurse Navigator.
And umakemehappy--so sorry about your Mom. that's double-tough. But I'm glad to hear no one figured out your cancer. That's important to me in my situation.
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I'm on taxol indefinitely for my Stage IV mets and have been doing Penguin caps now since October. My hair has thinned, but no one can really tell.
But, my question to you all is -- What's the advice for touching up my roots with the natural color I've been using for years? My color has faded and I saw photos of me and realized how brassy it looked. I really want to richen it up!
I'm not sure if coloring will have it come out more. I am shedding a bit with each washing and brushing, which I do infrequently.
Advice?
Thanks, in advance. :-)
P.S. I lost my hair once when I was first diagnosed in 2012 and it took forever to grow out!!
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Buddhahead: I think this type—spray, not brush-on—works really well. I went totally silver/natural a year ago and no longer use this, but when I colored my hair, this type did a great job of covering up between coloring appointments. Comes in several shades—can find at Target and Walgreen
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thanks hikinglady
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