Cold Caps Users Past and Present, to Save Hair
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I doubt the Taxol infusion will be 3 hours. Most of the women using the caps do wear them all day. The day flew right by with woman I helped with the weekly Taxol. No other infusions to wait on. The actual Taxol infision took only 1 hour. The inconvenience was having to go weekly over a longer period. Make sure to take a pain reliever of some sort i.e., Tyleno, Ibuprofen etc. and an Ativan might help if you have any naseau. Ask your doctor what is okay for you to take.
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I have an update! After some moderately gentle persuasion (and a glimpse of the pile of study abstracts that I brought to the appointment), my MO has relented and will permit me to use the PCC, YAY! I have to give a huge shout out to my husband who calmly explained to our doctor the extent of the emotional distress he anticipated that I would experinece if I lost all of my hair. I think he's the one who really sold the idea to try the caps.
You ladies are my first support group and I want to thank you again for the empowerment. I never thought support would make me feel so good! I hope to give as well as receive.
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Trinity - that's awesome. I am glad you at least won't have to fight your Med Onc about this as you move forward. I can tell you that doing the caps made me feel normal when my world was SO NOT normal. I went to the gym every morning and worked off the stress of it all...I did not have to be bald there and broadcast my condition or try to exercise in a wig. My 4 year old son never had to see "sick Mommy". He doesn't know I had chemo or what it is.... We are all here to support each other. BC is a difficult thing to go through and it can get very lonely as most people don't have a clue unless they have lived it.
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YAY TrinityMom!
Yes, know that we are here to support you as other Cold Cappers supported me when I used them...
Hugs to you.
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@Trinity-You're more powerful than you give yourself credit. Give yourself a pat on the back girl!
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TrinityMom - YAYYYYYYYYYY!!!! I'm very impressed and so happy for you!!!!!0
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What is it with this country? Sometimes I feel it is completely backwards! The cold cap is used routinely in Europe, particularly in the UK where it is free to patients (of course). My best friend lives there and had chemo with the cold cap for her BC and never lost her hair. I may need to have chemo (waiting for the results of oncotype testing). I have already made it clear to my skeptical oncologist that I will take my "business" elsewhere if he doesn't approve it.
Another thing that makes me really mad is that the stupid FDA still hasn't approved cohesive implants that have been used in Europe for years! They are safer and look much better. In this country, no one seems to care that 50+ women have to look like Barbie dolls!
And i'm not even going to talk about insurance coverage. That some women have to deal with huge hospital bills on top of everything else makes me sick.
It's nice to vent once in a while! But I am getting that cold cap even if I have to go to London for it!
Caroline0 -
You said it Caroline...
Hope you can get the PCC's if you need them.
I am STILL waiting for some type of reimbursement from insurance for my cold caps.
BCBS said if they were a "head prosthesis" they would be covered.
Last time I called they said they needed to speak with Frank for "more information."
It should not be this difficult to get some money back.
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That's great news, TrinityMom! I'm so glad for you. Your success with the caps will hopefully convert your MO into a fan, so that he can recommend them to other patients. I cannot empahsize enough what a huge difference it made, and continues to make, that I kept my hair through treatment! I see the conversations of my fellow BC survivors, how so much of it is about hair regrowth and feeling anxious about going "topless", and it makes me sad and angry. Why should any of us have that additional stress to go through as we try to recover and reenter "normal" life??
Caroline, I agree with you 100% on the FDA. Don't even get me started on their reluctance to ban BPA, when Europe banned it two years ago.
I am starting my attempt to get reimbursement from my ins company also. We'll see how it goes.
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question for ladies on Herceptin: do you think your hair is growing slower than before BC and do you notice that your nails are weaker?
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soccergirl, I finished chemo in Dec. and will finish Herceptin in Aug. My hair seams to be growing about the same as before. I had very good luck with cold caps, though. After chemo, I noticed my nails had 4 or 5 white lines running across them, and I would get a hang nail at the top line, way too low to cut off. They seem to be doing better now though, so I feel it was a chemo thing, rather than Herceptin.
fmaury, I share your opinion of the FDA. I think they answer to money, not what is best for consumers.
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Laura5: thanks!
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Congrats TrinityMom for fighting for your right to wear the caps. I wish you the highest level of success during your chemo.
Fmaury, don't even get me started. You are so right to vent. I could vent for days on it.
Reneerodin, I did the AC & T. Let me know if you have any questions. I did Taxotere instead of Taxol. But if I did do Taxol, my onc would have put me on the 4 DD every two weeks. I liked that better than 12 because of the fewer infusions which meant fewer days I had to wear the caps. I too wore caps for around 8 hours. I just took it one day at a time.
I just had my BMX 3 days ago. I am home recovering. So far so good. Honestly, not as bad as I anticipated. I am now 7weeks PFC! It is still amazing to be able to say that. I can't believe I'm done with chemo. My hair is holding up very well. Very little shedding and I'm noticing regrowth. I am so happy I did the caps.
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Congratulations on finishing Chemo!! My surgery was two years ago but like you it really wasn't that bad. Thank you for your advise on taking it one day at a time. I usually enjoy summer the most but I can't wait for this one to be over with. Did you have more shedding with AC or Taxotere?
Renee
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I had more shedding with A/C. It is a harsher medicine on the hair. That being said, more of us have had success with it recently by following the penguin cold cap protocol. I'd say I had the most shedding between my 3rd AC Infusion and my 2nd Taxotere. I think it was the combo of both meds still in my system at the same time. But after the 2nd Taxotere (which would have been my 6th infusion), things really stabilized.
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Thank you, it's good to know that the shedding might slow down during Taxol. I have done really well so far and have followed the PCC protocol to the letter.
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@victorious2- Are you sure it wasn't Taxol that you had? I haven't heard of Taxotere following AC... From what I understand Taxol is less harsh than the Taxotere.
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I am about to start my first round of chemo, and really want to try the cold cap. Why does it seem that everyone is trying to persuade me not to use them? Every medical person says that they do not relly work. I want to know the real deal, though! I have heard so many good things from people on these boards and in the media. What's up? Should I try it?
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My doc said they wouldn't work either. He was going on his experience from the 70's and 80's. We've come a long way since then! I've have 3 rounds of chemo so far (TCH), and, knock on wood, I've still got my hair!
Mind you, you WILL shed more than you normally would. It doesn't save every single hair on your head. However, the majority of women I've seen report on this thread say that no one else can tell that they have lost some hair. I know you can't tell on my hair.
There are some women here, however, who have lost a lot of hair even with the caps, so, to give an honest presentation, you need to know that not everyone saves their hair. However I do believe the majority do.
Here's a pic of my hair today, 13 days post 3rd TCH.
P.S. You can see a small little white line on the left side of the crown of my head. That is a cowlick. I had it before chemo. Usually could get rid of it with blowdrying or a small curler to give the area lift. My hair has always been thin and flat at the crown of my head. It's not hair loss.
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@2360lara- you absolutely should give it a try. Yesterday I finished my last chemo treatment (YAY!!!) and still have a pretty full head of hair. There was some shedding early on ( I did A/C x4 and Taxolx12), but it has become much less more recently. Having my hair through this whole ordeal has made a big difference for me and my family. My Dr. was pessimistic at first also, but after seeing what this has done for me, I think I've turned him into a believer. You can do it!!
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Hello,
I am finished with round 2 of A/C. When did you shed the most round 2 or 3? I have been doing really well except for one bad day #20 from the first chemo. I still also have most of my hair. Did you lose your eyebrows?
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@reneerodin-I think I shed most inbetween round 2 and 3 of A/C. I did not lose any eyebrows with the A/C but they thinned out a bit with the Taxol.
Hope that helps!
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Thank you!! That is great to hear. The most I have lost so far between 2-3 was maybe 250 hairs in a day. I have been using Latisse on both my eyelashes and brows. I will let everyone know if it helped when I am finished on August 17th.
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My onco was ok with me using them and now has referred me to three other woman, that I was able to help. Spreading the word is powerful. I finished my last chemo (tc x 4) on may 17th. I still have my hair. It has thinned quite a bit but it's mine. It's kind of like having a bad hair day every day. It's dry, really needs to be colored and then gets greasy, as I try to only wash once a week. I have been wearing it up in a clip and as the weeks went by my clips got smaller and smaller. I still would suggest to anyone do it. Even though your hair is not the same I felt it was better than being bald. I am taking biotin supplements, iron and silica but I am still shedding about 50 hairs a day, the most shedding occurs on the days I wash........I hope it ends soon. I can't wait to coler it again and get it cut. I also spoke to my salon who suggested a pure henna from India, vegetable coloring. They said it was 150.00......seems pricey but it's only temporary.
I to have been using latisse....all through chemo as well on both brows and lashes. Both have thinned but are still hanging on.0 -
Thank you to those who have posted about their experiences with "shedding". I have learned a lot.
I am now between my 2nd and 3rd Taxoterte/Cytoxane treatment and I still have my hair. It's exactly four weeks after my first infusion, and I was getting concerned about shedding until I read through the last four or so pages of this thread and saw the picture Dancetrance posted of her hair. Thank you so much for posting it, DanceTrance! I feel much better and will try not to worry so much when I pick dozens of long blonde hairs off my sweater... T-shirts, socks, pillow, couch, etc. My shedding started slowly about the 18th or 19th day after my first treatment. It was just a few hairs at first, but now, at 28 days, it's much more.
I washed my hair yesterday which may be why more seems to be coming out today. There was certainly more on the bathmat than I have ever seen before which shook me a bit. I've kept them, so may try to count them later. On the other hand, someone posted that she lost about 250 hairs a day which made me realize that, honestly, 250 a day from a head of over 100,000 hairs is not that bad.
I guess I really had no idea what "shedding" meant. Was it six hairs at a clip? Fifteen hairs? More? Apparently, it is more. I often have several hairs hanging off the ends of other hairs, which looks ridiculous, and my sweaters are often covered with them. But, I do have a full head of hair still, which is good.
It's not the beautiful long hair I have been used to all my life, the hair I washed every other day and blew dry into the full, glossy mane I was so proud of. This has been humbling. Now, I have to wash it extremely carefully and gently, and I am not supposed to blow it dry - at least, not on warm. I have used the "cold" button on my dryer a few times just to help dry it as I was shivering with long wet hair that wasn't drying. My hair's certainly still there, but since I can not groom it the way I used to it looks rather flat and ratty, I would say. Perhaps others are better at handling their cold cap hair than I am, but if I had to go to work each day I would be a mess. I can put a scarf over it to go out and no one can tell. All they see is the blonde hair framing my face and coming out below the scarf, so I look normal. For that I am grateful.
Untangling my hair after washing it is a big problem, probably compounded by shedding, but I am learning to rinse it so that it ends up hanging as straight down as possible which helps. I found a wide toothed comb to be a major pain to use and each of mine by Conair actually seemed to pull out more hair than when I carefully use my wet hair brush with its few widely spaced nylon bristles, exceedingly carefully, to comb my soaking wet hair straight.
I tried using the DermOrganic conditioner Frank's Penguin Cold Caps website recommended but found it simply did not do any good at all. It left my wet hair feeling very rough and very tangled, rather than smooth and tangle-free as conditioners ought to do. Conditioners are supposed to lay down the little shingles or plates that are along every hair's shaft so that each hair feels smooth and doesn't catch on other hair and tangle, and DermOrganic conditioner isn't able to do that job, at least on my hair. So, after calling L'Oreal and being told my regular conditioner, which comes with my Prefference hair color, was PH balanced I have been using it again, very carefully. I gently blot it on after mixing it with a bit of water, then rinse it out very gently and thoroughly in the shower with a hand held sprayer on the softest setting.
I am using the DermOrganic shampoo, though I don't like it either. It may be PH balanced, but the way it strips my hair of dirt and grease immediately and without rubbing tells me it's very strong. I do think it may be harsh. It's similar in effect to Neutrogen's shampoo which is supposed to be used only occassionally to strip away product build up.
I tried finding Kenra products, which are recommended by the Rapunzel Project, but was unable. They are not available in the NY area yet, or so a Kenra representative told me.
If anyone can suggest a truely gentle, effective shampoo that's widely available, I would appreciate it.
I have enjoyed reading everyone's posts. It's nice to see how you all are doing, how you share information and encourage others to try Cold Caps. I've been feeling whacked since my treatment and can baerly sit here now, though I am doing better every day. I am happy to have found this forum and this thread. I wish everyone the best.
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Oh no Hortense, my hair looks VERY flat - especially in the front. It has always been that way, I have always had to blow dry my hair upside down, use a curling brush or curlers/etc to give it some body...so yeah...not being able to style it...I look pitiful from the front, LOL! So I can relate! And yes I'm so glad I am not working right now...I often wear a bandana over my hair, especially once it starts getting oily/dirty...it's better than it used to be, but it still gets dirty fast. Glad my pic helped - I was thinking how much it helped when I saw some other ladies' pics, so I posted mine.
My hair is really fine and thin, as you can see, yet even with a fair amount of shedding, I still have good coverage, IMO. My suspicion is that those of you with thick hair shed even more, b/c you have more hair to try to get cold and more hair to lose, percentage-wise. That's just my personal theory!
I've been using Nature's Gate shampoo - jojoba - "fortifies damaged hair". I found it at my local organic health food store. Someone told me Whole Foods sells this line as well.
I have not been using conditioner b/c I use a spray-in conditioner to help with the tangles (I think if I used both it and regular conditioner my hair would be an oily mess). I will share what I am using with the disclaimer that it is "off protocol" - it's not the Kenra spray in - so, use at your own risk. I used this spray in in the past to heal my hair when it was damaged, and it did a fantastic job. As soon as I started using it during my chemo/cold cap experience, my hair started looking significantly healthier. This product is Joico K-pak Liquid Reconstructor.
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Hortense, you can buy Kenra products at amazon, I am not sure exactly what you are looking for but check it out. I am in nj and couldn't find anywhere either.
Dancetrance, your hair looks good.....thanks for sharing.
Are you guys washing your hair in the shower? I have. Been doing mine in the sink, I thought it would be easier to use cold water there rather than in the shower, I hate being cold.....although when I have my hot flashes I wish I were in a cold shower.
My hair to is so knotty, very hard to get out, that's when I loose a lot.0 -
Leveled - yep, I use the kitchen sink with the sprayer. I, too, shuddered at the thought of taking a cold shower....brrrrr!!!
That spray in that I use really helps with the knots. Are you using the Kenra spray in?
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Dancetrance,
No I have been using aveda shampoo and conditioner, sometimes I switch to organix. I just found Kenra on amazon but may switch to your suggestion as well, anything to loose the knots, it's so stressful to wash my hair, I cringe every time I have to it. How are your eyebrows and lashes?
Leveled0 -
So far, so good...knock on wood...BUT, I've heard many women say they lost them weeks AFTER chemo <sigh>. So I won't feel comfortable saying I've kept them until a couple months afterwards. I don't wear any mascara, b/c I am afraid that trying to take it off would be just asking for trouble. So maybe that is helping, but who knows.
The spray in really made it so much easier to comb out my hair without pulling as much out.
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