Cold Caps Users Past and Present, to Save Hair
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Hello ladies,
I was wondering if anyone has tried cold caps during dose dense AC treatment with success? My oncologist told me they don't typically see good results. I start chemo next week and trying to decide if it is worth trying. Thank you!!
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hi Mer - I did dose dense ACT over 16 weeks. First four treatments were AC every other week, followed by four taxol over eight weeks.
I successfully used cold caps. I lost a considerable amount but never needed a wig. The last few weeks I did have to camouflage a thin spot on top with very wide headband. Stressful? Yes. Great looking hair? Nope. But full head and no one knew unless I chose to share my story.
Very happy to have used the caps.
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Hi ladies!! My shedding has started at about day 17, what can I expect?? I remember reading to expect a big shed around this time. Will this be a continuous shed for the rest of the time? Will it be more for a few days and then tamper off??Just trying to prepare myself mentally. 😃
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Hi mypinklife,
It seems that everyone has had different experiences. I can tell you that for me, it's been constant but felt like it slowed down the last couple of days. I've only had 2 rounds of Taxotere so far and I'm scheduled for round three on Tuesday.
I wish I would have started a hair bag, just to get a real sense of how much hair I'm losing. Did you start one?
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I did put my hair in baggies, my friends thought I was nuts. I ended up with one bag for AC and one bag for Taxol. My biggest shed was in the early weeks of taxol which they attributed to the AC still in my system. Then I just stopped shedding. This week is Taxol #10
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the shedding will slow down after the initial big shed around day 20. I shed a lot day 20 -30, but hang in there! I am 7 months PFC and my hair is thick and growing like crazy. The hair I did lose, especially around my hairline is coming in thick and wirery. The new hair is only 2 inches long so it reminds me of what I'd look like now if I didn't cap! Good luck! It's worth it
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Hi everyone,
I'm about to start Taxol with Herceptin next week. I've been researching the cold caps. My oncologist recommended them. What I'm reading a lot about is that they must be worn an hour before treatment and an hour after treatment. Is this true? Also, I use sulfate free shampoo normally called Sudzz, has anyone else used this during treatment? And has anyone else used Taxol with Herceptin and cold caps? If so, what were your experiences? Thanks!
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ELrunner I used the penguin cold caps and I was told to cap for 50mins before chemo, during chemo then 4 hours after chemo. Most people on this thread did it this way.
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ElRunner2,
Are you doing weekly taxol or dose dense? That will make a difference in how long you cap. On weekly Taxol I did not cap 4 hours. The new theory is that we know 4 hours works and is the gold standard but is it necessary. In Europe the standard is much less time then in the US at 45 min to one hour from all all the studies I have read. While the AC was still getting out we capped the full time. Cut that in half for a few weeks and then down to an hour. I am one of the few on here to do that but I have a full head of hair with no bald spots
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LRFTexan,
Wow, that's great that you have a full head of hair and no bald spots! I'm doing once a week Taxol for 12 weeks. I'm waiting to hear back from the Penguin Caps representative. It's recommended to wash hair once a week. Is that what you do? Also, did your hair still grow during chemo? I have bangs that are constantly in need of trimming and I was told that you can't cut your hair either.
Thank you so much for the info!
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Aussie-girl...
Thank you so much for the info. I'm waiting to hear back from my local Penguin Caps rep. When my oncologist told me there was a way to keep my hair during treatments I was really surprised and happy.
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elrunner2
I'm doing taxol weekly for 12 weeks with herceptin.
I'm not using the penguin caps but the paxman system. The cap is on 30 minutes before infusion, taxol then takes one hour and then it's another hour with the cap on, thus in total around 2.5 hours. Caps are not changed with paxman as its a constant temperature set by the machine.
I'm about to have taxol number 8 tomorrow and the results have been amazing, I have no bald patches, yes a bit of thinning but hardly noticeable . Shedding started from taxol 5 onwards. I do have thick hair.
I wash once a week and use a wide tooth comb.
My oncologist highly recommend the cold caps for my chemo plan and I'm so grateful that I still have my hair.
I've also found the chemo quite tolerable overall too
Best of luck with everything and I think it's definetly worth the effort
Angie
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ElRunner2,
I wash my hair twice a week and yes I definetly have growth on Taxol. Remember every single one of us is different. I went into this thinking every day I had hair was a day I wouldn't have otherwise and I could lose it at any point. For me, chemo cold caps has been the greatest blessing
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ELrunner2 -- I am on Taxotere (and herceptin and perjeta) and have been doing cold caps for 40 minutes before infusion, the one hour of taxotere infusion, and then 4 hours after. I have only done 2 of my 6 rounds, but so far it's great. I had shedding after the second round but it has stopped already, and I really can't tell that I've lost any hair. It's amazing! I have been using Yes to Carrots shampoo and conditioner. On my off weeks, I wash about every 3 days.
Good luck!
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Has anyone done ice on their fingers to prevent neuropathy? I have only had 2 of my 6 rounds of Taxotere, but I'm worried that I'm feeling just the slightest numbness in my fingertips already. I want to try the ice. I've seen people use frozen bags of peas or cold gloves. Can anyone provide advice? I'm not exactly sure how to do it. Do I just hold my fingers in a bag of peas for the one hour of my taxotere? Thanks!
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ELrunner2, I had 12 weekly Taxols and Herceptin and I did Penguin cold caps. I had mine for 50 minutes before chemo, during of course, and then 3.5 hours afterwards. My hair is on the thin side. I never had any bald spots. It thinned a little, but to this day nobody can tell I went through chemo.
There is a great thread that Dancetrancer put together with a lot of practical advice: https://community.breastcancer.org/forum/6/topics/836476?page=1#top
Also, you can check out some success stories with pictures from previous cold cappers here: https://community.breastcancer.org/forum/6/topics/835766?page=2#top
I used Dermorganics shampoo, but I think as long as it is sulfate- and paraben-free, you'll be OK.
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JCS28, I did not ice my fingers or toes because I was told by my MO's nurse that I should avoid extreme temperatures to avoid neuropathy. I know that some ladies did ice and they did well, so as usual - there are so many discrepancies in what they tell us to do or not to do.
Anyway, I avoided neuropathy, mostly. My hands are completely fine. About a month after finishing chemo part of my foot went numb, but it didn't even follow the usual pattern. My toes are OK and the numbness is on the side of my foot, starting at the heel and going about halfway to my toes. It doesn't bother my walking at all, it was just annoying for a while until I got used to it. Also, throughout my chemo and for a few weeks afterwards I was taking glutamine powder and vitamin B6. Some claim that this prevents neuropathy, but I don't think it has ever been proven, so I don't know if I avoided neuropathy thanks to those supplements, or if I was just lucky,
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Has anyone used Arctic Caps based out of Philly? I'm trying to decide between them & Penguin caps.
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Cold Caps made the San Francisco local news last night. The word is getting out! http://abc7news.com/health/new-device-helps-cancer-patients-prevent-hair-loss/1211292/
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JCS28, Chemo this week? I'm booked for tomorrow at 9:45am...almost halfway there.
I've read about L-glutemine for neuropathy but I'm not sure if it actually works. I did by some and I'm going to try it. But It's best to speak to your MO before taking any supplements.
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hi all
for those that have finished treatment and retained a fair portion of your hair, when did you go and color your hair?
My roots are terrible, my hairdresser uses chemical free organic color, so I'm hoping I don't need to wait too long after treatment finishes
What's everyone's experience been?
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EstelaLorca -- Yep, chemo on Wednesday! I have to be there at 7:30 AM. Yes, almost halfway there. But I'm not calling myself "over the chemo hump" until my 3rd round side effects are gone, so hopefully in about 7-10 days. We can do it!
I'm wondering about glutamine for neuropathy as well. I'll ask my doctor tomorrow. I think I originally heard about it from one of my chemo nurses.
I had to get my driver's license renewed today. It's every 5 years. I was so thankful to have my hair when I took the picture. It was worth every penny and every minute of a cold head to not have to look at a chemo picture for the next 5 years. I'm sure you all understand. Thanks.
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So glad to see so many new cappers. Just some random responses to recent posts...
I had my hair colored at three months PFC. It was pushing protocol a little but I was attending a wedding and wanted to look like myself. My hairdresser applied the color but didn't use any heat. We just let it sit on my head longer. I was a little nervous, but it turned out fine.
I perfectly understand about the drivers license picture. I bet a couple of years from now, no one looking at that picture would have any idea you were going through chemo at the time. That's the power of cold caps in action!
Chemo cold caps uses ElastoGel brand caps instead of Penguin Cold Caps. Not pushing one type of cap over the other, but you should check the cold caps FAQ's- tips for newbies thread to educate yourself about the difference between the two brands before making a decision. There's a link a few posts above.
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JCS28, I know what you mean, drinking my 8th glass of water already trying to flush out the chemo. I felt a little tired today afterwards usually the steroids keep me energized for a couple of days. It also seemed quicker this time round, which is good.
So great you had hair for your license picture! This is the 2nd time for me and I had to get my passport photos done with a wig. It was ok, but still a reminder every time I saw it.
There's a couple of threads regarding L-glutemine on here if you want to research it a bit before talking to your MO.
Good Luck tomorrow!!!
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Hi capers! I start chemo on Thursday, Taxol X 12/ Herceptin. I am using PCC and was reading over all of the information e-mailed to me. It mentioned that I would receive capping instructions and hair care instructions with my caps...however, I didn't receive the hair care info and can't find it on the website. Does anyone have a link to the official PCC hair care instructions
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So I know I posted about this already, but I'm just worried about my hair today. It's been 2 months since my last TC chemo infusion. Cold caps worked great through out my 6 treatments. I really only had minimal hair loss, like 30%. Not really noticeable to anyone but me.
3 weeks ago I had my bmx and since then I've lost about 40% more hair. Everyday I'm shedding so much more than even through chemo.
I'm so worried that all my hard work to keep my hair will be ruined soon. Is there any way this could be caused by the Herceptin I'm still getting? Or is it just really stress from the surgery?
Thx ladies.
Mel
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Stars, it's not unusual to continue shedding PFC for months. Like you, I didn't shed all that much during chemo, but I continued to shed, sometimes heavily, for four months post chemo. It got a little scary and the women here had to calm me down a few times. Finally, it just completely stopped and my hair still looked fine. I don't know how surgery affects shedding, but it may not be a factor at all, Hang in there...
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Stars,
From what I know personally, and reading others' posts, your experience is similar to a lot of ours. Please take heart - you will keep enough hair and you will be fine! Really!
I had one big shed after my first chemo, and then things calmed down until I finished. Then guess what? I shed slowly for 12 weeks pfc. Twelve lonnnng weeks!! It sucked! Included in that 12 weeks was my port removal surgery, which I think caused the shedding to increase for a couple of weeks. But everything still worked out fine. Although my hair thinned during those 12 weeks, I still had full coverage and never needed a wig. And at some point following week 12, it just abruptly stopped. Which is good, because I didn't think I could stand it anymore :-)
But I totally get your anxiety. I worried more about my hair pfc almost more than I did during treatment, and it really, really bummed me out at times until the shedding stopped.For weeks, I was sure that I was only prolonging the inevitable and it was just a slower way of going bald. There were several wonderful ladies on these boards who provided me with encouragement and commonsense logic during the pfc shedding ordeal. Long overdue thanks to dancetrancer, mdg, pch, wpmoon, and jc254 - you helped immensely, and thank you so much for your patience in keeping me sane!
You might stop shedding at any point now. I've seen lots of ladies on this thread who stopped somewhere between 8-12 weeks. And here's something nice to think about. All during that time you're shedding, you're also starting to regrow the hair you lost earlier in the process. It starts coming back in the order it fell out, more or less. So the first hair you lost is probably already growing, you just can't tell yet. I didn't realize that until about 5 months pfc, and all of a sudden,I started finding new hair of all lengths all over my head, from 1/2" to 3-4 inches (a lot of it was hidden in my long hair.) My hair stylist was laughing at all the different lengths I have going on.
Hang in there. You will be fine!
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JCS, regarding icing fingers, my oncologist recommended that I not do it .... I followed her advice and didn't have any problems.
Angiesgo - I colored my roots with all natural products 2 months after chemo. Everything was fine. I finally highlighted my hair and trimmed approx 3-1/2 months after my last chemo. All went well and I'm happy to say that on March 12, it will be ONE YEAR SINCE MY LAST CHEMO TREATMENT. Yay. Hair is growing like crazy and I've been back for months doing all the normal things again (color, cut, blow dry, straight iron, etc) You all can do it ... just hang in there. PCC do work. -Kim
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I talked to my oncologist, and she said icing fingers was fine. I just put on gloves and then help my fingers in a bag of frozen peas for the one hour of Taxotere. I had been taking glutamine also but I saw a research article that possibly links HER2+ cancer to increased glutamine metabolism. My oncologist said it was all theoretical right now, so she just didn't know. But she also said the recommended glutamine dose was 10g twice a day. That's a lot! So, for now, I'm skipping the glutamine and going with the icing fingers. It's the same principal as cold capping.
Also, I just have to announce that I am halfway through cold capping! I am not going to say I'm halfway through chemo b/c the side effect for this third round won't start for a couple of days. But I'm over the cold cap hump! Yippee! And I even made a picture. That's me in my cold cap yesterday!
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