Cold Caps Users Past and Present, to Save Hair
Comments
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I'm just about to start with Cold Caps on Tuesday and am grateful for all of the information I have found here. I'd like to ask the Moderators, and will try to contact them, to post a sticky about Cold Caps to make it easier for women to find out about this method of saving hair, understand what is involved and make a decision about whether it is something they would like to try or not.
Something brief, not an entire thread which is so hard to go through. Perhaps it could guide people to this thread and to the Cold Caps thread in the Chemo section where they could learn much more. I sometimes have trouble locating each of these threads when the topic drops down the list. From all of the posts asking about Cold Caps it seems there are others having the same problem.
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Hortense, I think that is a good idea. It's tough navigating all the information available on this site sometimes...especially when you are overwhelmed!
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FYI-You can add any topic to your 'Favorite Topics'. It's a small link near the top of the page, above the Topic Title. That way the next time you can just click on your 'My Favorite Topics' Tab instead of searching through the many topics.
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Cousinitt! I love it! Good luck to you - you will keep your hair - but you will lose some to shedding - I lost about 30% or more - some ladies on this blog didn't lose a lot at all - I sure hope you're in the latter group - take care,
Lucky
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Leveled,
I colored (using Aveda salon) during and sooner than 3 months pfc - I'm not sure if it made any difference in the shedding - I kept my hair - no bald spots - but did have significant shedding (about 30% or so) - from what I understand there are a lot of women who shed - even those who didn't color had shedding - lots of us -
I can't advise you to color - but I really don't think it made any difference in my shedding - and it sure made me feel better to cover the gray! Good luck - Lucky
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Hortense, Great idea about contacting the Moderators. As makingway stated you can add a thread to your "favorite topics" to make it easy to find, but for someone who is new to the site and has never heard of cold cap therapy, something on the main page just to let women know they have an option to save their hair would be a Godsend to many women. At least that is how I felt when I found out about them.0
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Mamacath,
I've used the caps with A/C ad now Taxol. I've shed some, but if you didn't know me prior to chemo, you wouldn't know. I'm being treated in Niles,IL.0 -
Mamacath,
I've used the caps with A/C ad now Taxol. I've shed some, but if you didn't know me prior to chemo, you wouldn't know. I'm being treated in Niles,IL.0 -
Wow, that is good to know Mishyp! I keep reading that Adromycin takes the hair caps or not. I am going to try the PCC-starting the end of the month. Are you with oncology specialist in Niles?
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Geralyn told me that they used to not get good results with PCC and Adromycin, but they've had success more recently (me!!!!). I have been very careful to only wash once a week, not stand directly under the shower stream, etc in an effort to save as much hair as possible. I have 5 more Taxol treatments so the end is in sight!
I am treated at Illinois Cancer Specialist onGolf Road. How about you!0 -
I have a friend who is going there too-Bruce Kaden is her MO. I am w. Oncology Specialists at Lutheran but haven't officially started yet..am getting a second opinion at U of C next week. How long/frequent did you do Adromycin/Cytoxin? I will do every two weeks for 8 wks and then 12 weeks of Taxol (weekly)
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mishyp, YAY for you!! Keep it up
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Mamacath, Bruce Kaden is my MO also. Small world!
I did the A/C every two weeks fr 8 weeks and 12 of Taxol weekly.
Where do you live?0 -
Hortense, that's a great idea. When I started on the CC road, I asked the ladies here to post their top tips on using the caps and it was enormously helpful. That starts on page 167 of this thread. You can go quickly to that page by replacing the page number in your url line in your computer with "167". I also suggested to the moderators a while back to implement a page drop-down feature to make it easier to navigate threads like this that have great info over many pages. I think that I'll ask if they can create a sticky on this forum for Cold Cap tips.
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I have a question for you ladies using the cold caps who did Adriamycin......did you manage to save your hair? My onco is a doubting Thomas about the cold caps. It was just a few weeks ago there was a big spot on the evening news about them, like it was something new they had just come out with and I said Oh, women on the message boards have been using those for a long time.
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Have any of your MOs told you not to do cold caps due to risk of scalp mets?? Mine told me that if the chemo is warded off to save the hair follicles, it is also not getting to the scalp, one location mets can go.
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Betsy, yes, it is a risk - but a very low one. My onc did not feel it was a large enough risk to say no I couldn't do the caps. Scalp metastasis from breast cancer is very rare - according to this study, only around 1%, whether you do cold caps or not.
Abstract
Scalp cooling is an intervention used to decrease the degree of chemotherapy-induced alopecia. The objective is to determine the incidence of scalp metastases among women with early breast cancer who received neoadjuvant or adjuvant chemotherapy. We conducted a retrospective cohort study of women with breast carcinoma diagnosed between June 1, 1998 and June 30, 2002. The median follow-up was 5.8 years (±1.7) for the scalp cooling group (n = 553) and 5.4 years (±1.7) for the non-scalp cooling group (n = 87). The incidence of scalp metastases was 1.1% (6 cases out of 553 patients) among women who used scalp cooling in the neoadjuvant or adjuvant setting and 1.2% also (1 case out of 87 patients) among women who did not use scalp cooling in the neoadjuvant or adjuvant setting. The incidence of scalp metastases was low and no case presented as an isolated site of relapse.0 -
HI All! Has anyone that has used the caps experienced nausea and/or vomiting with the caps? specifically, in the changing of the caps? I had my first treatment the other day and had horrible nausea/vomiting every time we changed a cap- even w/IV anti-nausea meds. Any comments, suggestions, etc would be welcome! : )
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ccb2, I do not experience that. So sorry you do, it sounds awful! I believe someone on here recently posted this happened with their daughter who was using cold caps... maybe scroll back and see if you can find it? Or perhaps they will post soon. I wish I had some suggestions for you!0
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Hey all, the Mods are trying to limit/condense the # of stickies on the site, so how do you feel about starting a new thread on Cold Caps Tips?
Please add your contributions to the thread, and let's help out the new gals using caps!
http://community.breastcancer.org/forum/6/topic/786991?page=1#idx_1
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Ok luckynjmom, so there is hope I am shedding like crazy........I have one more treatment to go, but what scares me is the shedding pfc, my hair is really thinning.......I have been on these threads all day, gave myself a whopper of a headache. What treatment center did you use? In nj correct?
Lisa0 -
ccb2
You may want to try a scopalamine patch. I'm not sure about any drug interactions so you would definitely want to check. It's an anti-motion sickness med that can be effective for non-motion nausea.
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Thanks Dancetrancer & CousinItt!! Will do some more investigating & report back! Next round of taxotere & Cytoxan is 5/22.
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Ccb2..... I had TCx4, and only at the first infusion I got very very nauseous at each cap change .... I still think it was the cold on my head...not the chemo...but each of the next three I never got nauseous and no different drugs used ...I did get zophran in my IV Each time ....so hopefully you will be the same ...I think much of it was the stress of the whole situation and the unknown.....that first infusion
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Leveled,
I'm in MO - not NJ - understand the confusion - my kids' names start with J - we call them JNJ - don't work for JNJ -
I had moderate shedding during chemo - and lots after chemo! It started to slow abotu 10 weeks PFC - then really slow 12 weeks PFC - then stopped at 15 weeks PFC. I was seriously scared that I would go bald (I believe that's a common fear) but I didn't . While it was shedding - new hairs were growing in . I"m now 16 weeks PFC and I had my hair colored and highlighted yesterday. No problems with any of it - I have stayed pretty close to the PCC protocol i.e. cold water washing - no direct showering - no hot blow-outs - all through-out this time. During the last week - I have shampooed in the shower with warm water. Feels fantastic!!
I am using black currant seed oil - which I think is helping my hair come in thicker - saw this on Dr. Oz - you can get 1,000 mg capsules at Whole Foods - or pretty much any health food store - my Onc was ok with it. My hair has come in a lot darker than normal (normally med/drk blonde)- everywhere - very strange - but it's still hair - so I've gone with a medium golden brown dye and I like it - one thing with bc is that you've got to roll with the punches -
good luck - PM me if you have any other questions,
Lucky
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Lucky - thanks for the update - always love to hear PFC CC reports!
I washed my hair on Fri (3 days post 2nd TCH). This time I did not have nearly as much shedding as when I washed it 3 days prior to my 2nd TCH. Here's the difference. Pre 2nd TCH I had to be somewhere after I washed my hair. I tried to let it air dry before combing, but it still was a bit damp by the time I went to comb it (carefully, of course). Post 2nd TCH, I didn't have to be anywhere at all. I let it air dry over 24 hours (yep, just walked around the house with knotted hair. I don't care...whatever it takes!). So, when I combed it out, I shed MUCH less. My hair is definitely stronger when it is dry. This article also supports that: Wet hair needs gentle care
I have not read this in any of the tips anywhere...but I really think it helps! So if you can wash your hair and not need to go anywhere that day...let'r dry tangled, IMO. Comb out as long after it dries as possible. Just my opinion, hope it helps someone!
Oh and I used a tiny amount of vinegar mixed in with a small amount of shampoo in a dish with water...easier to get my whole head feeling clean with less shampoo this way. No major flaking noted now... yay - thanks all for that tip!!!
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Dancetrancer,
Thanks for the tip! good luck with the rest of your treatments!
Lucky
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Ccb2, yes I experienced nausea with each cap change that got more persistent as the day went on, it happened in the first 6 or so of my treatments. What I found to help was oral nausea meds, plus I take Ativan AND Making sure I had food in my stomach before starting chemo meds...so I eat during ore meds.
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I shed for five weeks post chemo and then it all of sudden stopped. I am having my hair dyed Wed. with vegetable dye. I am currently 11 weeks post chemo. Hang in there--It works.
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Thanks essex!!! Hangin' in!
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