Cold Caps Users Past and Present, to Save Hair
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I never used a shower cap - just kept my head out of the water if I didn't want it wet. I do rinse - cold rinse - some days, particularly after exercise.
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I worked out 5 days a week and did not rinse daily. I washed every 5-7 days. I was not working so I did not care too much about how it looked.
As far as lashes....I did not lose mine until about 6 weeks PFC. Brows thinned but I never lost them all. I just didn't touch brows much. I did wear mascara daily through chemo.
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I worked out 5 days a week and did not rinse daily. I washed every 5-7 days. I was not working so I did not care too much about how it looked.
As far as lashes....I did not lose mine until about 6 weeks PFC. Brows thinned but I never lost them all. I just didn't touch brows much. I did wear mascara daily through chemo.
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Hi ladies....question, how did you get that "smell" out of your scalp? I'm washing so gingerly, I can't seem to get my scalp really clean and I can still smell that dirty scalp smell. Its so annoying but of course, I'll take it over not having hair. Just wondering if anyone has any tips. Also, everytime I was my hair, my scalp seems to have major flakes. Anyone else experience this? I'm using dermorganic shampoo.
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I used a shower cap, but putting your hair up with a gentle clip along with a head band works as well.
ndmk - I got the flakes - ughh! However, Geralyn had me add a TINY bit of vinegar to my shampoo at my next wash - flakes stopped after that! Make sure you are rinsing well.
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Re:
Shampoos - The dirty hair smell in my case was the oils coming back. I think DermOrganic was not getting my hair and scalp, in particular, as clean as it needed to be. Part of the problem was that I had to treat my hair so delicately and could not scrub it as I would have liked to, so I tried using Nioxin # 4 shampoo for "chemically treated and noticeably thinning hair" PFC and I think it helped a lot. Nioxin cleans wonderfully, tingles a bit and has a lovely light mint smell. My hair looked healthier, cleaner and thicker afterwards. I am back on DermOrganic because it has nothing we are supposed to avoid and sadly Nioxin products all seem to have them. I found both at TJ Max for much less than elsewhere.
shower caps - I used a shower cap all through chemo when I didn't want to wash my hair or chance getting warm water on it. Our shower-head is very high and showering without getting water on my head would have been difficult.
I was afraid a towel wrapped around my head might pull too much on my hair and I didn't want to stress it.
Brows and Lashes - I lost both my lashes and my eyebrows. My eyebrows vanished between my 3rd and 4th treatment but came back very quickly - how odd not to have them and how bland my face looked without them. I didn't dare use mascara, but one day decided I would only to realize I was down to about seven lashes between both eyes. My lashes at six months PFC are between half and two-thirds as long as they were and just as thick.
Vitamins - I was not allowed to take anything during chemo, but now I am taking Biosil liquid (liquid silica), Biotin and Iron which I had read were good for growing hair. While I cannot say they are the reason with any certainty, I have lots of new hair coming in fast and very thick. Liquid silica has been clinically proven to help hair grow more thickly. It takes quite a few months, so results are not immediate, but I definitely have quite a growth of new healthy hair coming in.
Instead of a light fringe of baby hairs across my forehead I have more of a waterfall coming down, it is so thick. Plus, I can clearly see new growth filling in between the hair that stayed on my head and I usually have a few inch and a half long tufts standing up on top which I am having to wait to grow long enough to bow over as they won't stay combed down, so I'm thrilled.
shedding - There were days when I was shedding, and I shed a lot for 16 weeks after chemo ended, that I wondered if I would lose everything or be left with so little it would look awful, but in fact I kept enough to cover my head and now what shed out is regrowing.
Quite a few people do not believe I went through chemo this past summer. Some have told me comfortingly that I was lucky to not have had it and are surprised when I explain that I did indeed have had chemo and should have been bald by now. They are amazed when I tell them about the effectiveness of Cold Caps and a few have asked for information about them, including my OBGYN who told me his sister was going through breast cancer treatment and was devastated to have to lose her hair. I hope he will pass on the information to any patients of his who might be facing.
I am going to contact Geralyn to ask if she has any brochures for Penguin Cold Caps because I could be handing them out to help spread the word.
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I used the silica liquid once a day all during chemo...my onc approved it. He gave me a prescription for Latisse which I used a couple times a week in the beginning and then once a week. I did not know not to use it during chemo until I went to the LGFB training so I stopped between session 2 and 3. My out brows have thinned a little but lashes are fine. 1 day PFC!!!
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Just changed my pic. Last day of Chemo 4/4 rounds of TC!!!!!
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Look at you schoolmom! You (and your HAIR, of course) look GREAT!!!
Hortense - happy to hear about your hair continuing to fill in. My spots are continuing to do the same. Oh, the joy of looking at my pics and going to parties, etc., where no one knows what I have been through - so nice to have anonymity when I want it!
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Yay, Schoolmom! Welcome to PFC!!!
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You all have been so helpful and supportive. I will check back in for the newbies. On to radiation. Met with RO today and get planning on Thursday. Start on 1/28 for 33 treatments.
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schoolmom, congrats on being finished with chemo! You look great! I started rads today - I also have 33 treatments. Hope it goes well for both of us.
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Thanks dancetrance...will try the vinegar next shampoo!
question....why should we not use Latisse during treatment? I've never been told otherwise but I would hate to compromise anything!
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Schoolmom, you look fantastic and just what I needed to see as I head into my first of 4 TC cycles on Thurs. I hope I fare as well!!!
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Hi y'all! I am a cold cap newbie, but a cancer veteran. 18 years ago I had Hodgkins and went through 6 months of chemo every other week, and 3 months of rad. Needless to say I never really thought I'd be doing his again. However..... Just diagnosed with stage 1A, triple neg BC. Had a double mast w/recon 3 1/2 weeks ago and tomorrow I start preventative chemo. (Taxotere and cytocin.... Spelling? For 6 treatments. Sigh. Anyway, having been bald once, I was SO excited to hear about the PCC! My shipment just came in today and my husband and I just spent an hour putting them on and taking them off to be sure we were ready for tomorrow. It's going to be an interesting ride! (It probably wouldn't ave taken so long, but there was a ton of laughing and I had to take a bunch of pictures. Lol!!
Anyway, I'm just starting to read through this thread but wanted to introduce myself. Hope everyone is doing really well tonight!! Deb0 -
welcome deb!!! So sorry you have to go through chemo twice but I'm glad you found out about PCC
The ladies on the this board are beyond amazing and they have given me the best support during this tough time. There are a few ladies who have done some really good writeups on their experience with the cold caps...look a few pages back.When does your treatment start?
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Welcome Deb! Glad you found us here! We will get you through this. So not fair you have to go through chemo a second time. At least this time you will keep your hair. Hugs and good luck!
Hope - good luck Thursday...knock it out!!!
Schoolmom...you are already done? Seems like you just started. Congrats - look at all that hair in your photo!!! Lookin' good!
My MO allowed me to use lattise during chemo...she wrote me an RX and said it was fine.
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Schoolmom you look fabulous!
Congratulations to all of you who have just finished chemo!
Skibunny - Thank you for your wonderful and information filled post.
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You look fantastic school mom!!!! So glad you were able to keep so much hair. Congrats on being done chemo. You and I are on a similar schedule. Meeting with RO next week to understand phase 2. Wonderful to be done with all chemo treatments!
Welcome Deb! So sorry to hear you are going thru this again! There are fantastic ladies here who can provide a lot of tips and guidance. From my perspective, I lost my length because the caps did not cover the base of my neck. Make sure you get the extra bands to cover this section.
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Deb, Good luck today! Hope, good luck tomorrow! The frozen caps are a little more difficult to handle, but after a few times, your hubby will be a pro. We found if we fastened the front 2 velcros before placing on my head, the cap change went a bit quicker. Of course we readjusted those velcros after.
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Help! I'm 20 days post my first treatment & I have thinned out significantly!! I still have full coverage, but extreme thinning around my ears & nape. My next infusion is set for this Friday. I believe PCC work, just worried my cocktail of TAC may be too potent. Any advice?
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LinAnn I was like you and I thinned a lot on top, round my ears and underneath. Saying that I could still wear a hat and look good but couldn't go out without it. Everyone is different and many have very good results. The one good thing is your hair will grow so fast after your last chemo it is so worth it.
My last chemo was may 2012 and two weeks later my hair was filling in also very thick.
Try not to worry I'm sure the thinning will slow down.
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LinAnnM12 - The caps do work, have faith. The thinning in those particular areas may be because the caps did not cover them completely. Some women use the Penguin brow saving gel bands snugged up against the bottom edge of the cap to cover what the cap doesn't. Do you have any brow bands? Wrap them just below your caps in back and along the sides instead of on your brows and it might help you keep what you still have.
Bands may not stop complete loss in those areas, but it may help the hair to grow back far more quickly. I lost hair on two frost bite spots and was surprised by how fast it came back in and how quickly the new hair blended in with the rest of my hair. You will probably lose your brows if you stop chilling them, but they will come back quickly, at least mine did.
Also at 20 days you are about to start the shedding period for all of the older hairs on your head. It will be heaviest around your second to third treatments. Try not to worry too much, although we all worry when it happens. Hair will seem to be dropping out all day long. Just remember we all have over 100,000 hairs on our heads and that will help you to keep what sheds out in perspective. As the shedding is general and not spot specific, you should retain coverage even if the overall volume thins out. Women not using cold caps would be going bald all over their heads by their second treatment, if they weren't already bald.
Best wishes and stay in touch!
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To clarify:Pinpointing the time when shedding will occur most is not possible-it is a compeletely individual experience. Some shed more after their first treatment, others not at all. Some have little shedding until after completeing chemotherapy. While the time frame for the beginning of shedding is known, 14-21 days after EACH treatment, the amount of shedding is not consistent. I found an excellent comprehensive article on all Cold cap use. Please share it with any medical practitioner's you come into contact with. We really need this not to be a 'secret' any longer... It's not fair to those following in our footsteps. http://www.medscape.com/viewarticle/737144?src=rss
This article addresses resistance within the medical community http://www.ncbi.nlm.nih.gov/pubmed/15952966
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@Hortense- I waited over a year for a brochure from the Penguin company and was very disappointed when I finally received them. They are not well done-they don't look professional. Try contacting the Rapunzel Project and ask for some of their handout cards. They are very nicely done and provide information about all cold caps.
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Hortense, Geralyn sent me quite a few Penguin brochures. PM me with your address if you would like me to mail you some.
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I believe I may be getting a reputation as a trouble maker......You may recall I've mentioned that I'm the first at my cancer center to use cold caps. My MO was very accommodating and, in fact, she and my BS have asked me to present the evidence/science to the Tumor Board later this month. In the meantime, I have talked to a couple of other women who will be starting chemo soon. One told me today that her MO has said, "no way" to cold caps because of his concern about scalp mets. She has done enough homework to know this is groundless but he's not budging. Her response? She asked for the name of my MO so she can switch physicians. Love it!
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Welcome Deb. I'm a fellow Hodgkin's survivor diagnosed with BC last July. It's been great to be able to try out cold caps this time although it was only my high dose chemo I had for my bone marrow transplant that caused me to lose my hair during HD treatment. My first two chemos didn't. I'm having the same treatment as you for the BC and so far still have plenty of hair but very thin on top. I've had 3 of 6 treatments - #4 on Friday - and hoping it holds out till the end! Best of luck!
Was your BC discovered through screening? I was having annual MRIs due to my mantle radiotherapy in 1998. Otherwise I don't know when I would have found it...0 -
I've heard that it's not a good idea to use the cold caps if you have a systemic cancer, like lymphoma or leukemia, or if you have metastasis. I could be wrong about that but it seems logical.
Word is spreading! MO said that he has another patient who was just diagnosed and was worried about her hair -- I said I'd be happy to talk to her about the cold caps.
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You're right cypher. I remember my mum asking about cold caps many years ago when I started chemo for lymphoma and though I don't remember exactly what they said, we were told it wasn't appropriate. After reading about cold caps these last few months, it seems they are not an option for haematological cancers. But Deb doesn't have lymphoma anymore, nor do I. :-)
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