Cold Caps Users Past and Present, to Save Hair
Comments
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I just talked to my PS, who said to start the Laticce immediately so that the new lashes will keep coming in as the old ones fall out. I start chemo tomorrow but should have the Latisse in a few days and will start using it immediately.
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Eyelash questions
I used Lattise after chemo and it worked so well. The only problem with using it all through chemo is that chemo can cause your eyes to water and Latiise can make it much worse. I waited until I was done with chemo and used it. Most people's lashes thin regardless if they used it during or after. It does work for quick regrowth. The 4 or 5 lashes I kept were so long! It was hilarious. You can buy generic lattise online and it is pretty cheap.
I am 4 months post pcc and have just recently colored my hair and Im using styling tools. I am so glad I used the caps!!!
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Soccer girl, thanks for that but I have tried to look for it in England and you can't get it. Great news about your hair I can't wait till my chemo is over, one down seven to go hehe.
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ali68,You can't get Latisse over the counter here either, it is by prescription. Have you asked your Dr.?0
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Not yet, but I read it wasn't in England and some people had asked their doctors and they hadn't heard of it. Will try and google again.
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Tried again it is not available in England.
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Hi. I am on my second round. I did 3 months of Taxol/Herceptin and did great with my hair. I just started FEC for 4 rounds... and I guess I am seeing that my chances are not good? Anyone done this aggressive routine and had success? Most the studies I see say that it is not a good outcome? I hate the thought! thanks so much.
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I eead the active ingredient in latisse is bimatoprost. Try to see if you can find it in England under that name. I googled. Hope that helps!
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I ordered generic lattise (bimatoprost) from online and it came from India. The woman who started this thread( Candy) had FEC. She posted pictures and kept her hair.
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mdg,
Where you using Latisse throughout your chemo - or only after lashes were lost? Also, what chemo regimen were you on?
thanks,
Lucky
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Soccergirl,
I'm 3 weeks pfc and my hair is still shedding like crazy - did yours shed a lot during or after chemo? Hate to think I might go bald at this point! yikes!
thanks,
Lucky
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I finished my last TCx4 yesterday! And my last cold cap session! Hooray! I've had some shedding around day 21 after each session, and notice some hair missing from the back of my neck along my hair line on the left side, but not on the right. No one else can tell and while I can tell a difference, no one else can. I'm so happy I used Penguin cold caps.
I hope I won't have long term shedding, time will tell. It's my understanding that I should continue the special washing routine for several months after the end of chemo. How long did you guys keep it up?
Thanks!
Lisa
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Lucky - I did TC X 4 and used latisse a little during chemo but then stopped as lashes seemed normal. Once I noticed them thinning I started using it nightly. By the time my lashes fell out I could see tiny one's growing in. For those 2 weeks I wore a lot of eyeliner on top/bottom. I swear within about two weeks lashes were really coming in. Before chemo, I had very long/thick lashes. At two weeks they were not as long as my normal lashes, but normal looking. I remember when they fell out I was worried because we were going on vacation in a few weeks and having family photos being taken by a photographer and I was worried I would have no lashes. I was shocked that they grew so fast and I had lashes for the photos! THe other day somone asked me if my lashes were fake.....
I did shed through chemo and for quite some time after chemo but you can see my results were still good! Hang in there....Cold caps do work!!!!
I kept up the once a week washing in cool water for a few months post chemo. I still only wash two-three times a week to keep my hair healthy. It doesn't get greasy anymore since chemo. It's odd! I even workout daily and sweat like nuts and hair still does not get greasy. That is a bonus!!! I am LOVING my post chemo hair. I got it cut shorter and really love the way it looks - better than my long hair pre chemo.
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Lucky, I shed the most after chemo 3 and 4. I started taking iron and my shedding stopped at week 5 post chemo. If you have an appointment with a doctor coming up, request blood work and make sure your vitamins levels are good.
I am 4 months post pcc and my hair is doing very well. My major obstacle from chemo was dryness. I cut my long hair a little above my shoulders because it felt horrible. No matter what conditioner I used, my hair was fried. I did a big chop and my hair bounced back. I am so grateful I did the caps!!!! You ladies will be at this place soon!!!
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mdg and soccergirl,
I can always count on you for good information that helps me to keep it together when I'm getting ready to have a meltdown about this. thanks again! I will keep with the gentle routine and keep using the latisse. Thanks again! You ladies are fabulous!
Lucky
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Lisa,
congratulations! You and I graduated from the same course a few weeks apart. I'm shedding a lot - and my hair has thinned considerably - but no bald spots - although I am combing it creatively. I'm 3 weeks PFC and still shedding daily - but my hemoglobin is low - so that could be a contributing factor.
I am taking iron supplements (mega dose 325 mg - by script only) and silica (per Geralyn at PCC) and black currant seed oil (per Dr. Oz' show) to stimulate growth. I'll let you and everyone on the blog know how it goes -
This has been a scary process for all of us - and we made it! Good luck to you!
Lucky
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Hola,
Just came across the trailer for Pink Ribbons, a documentary being relased tomorrow.
http://www.nfb.ca/playlist/pink_ribbons_inc/
Many folks here have struggled with the "I hate pink" feelings, and the film (or the trailer, at least) looks like it gives voice to the frustration that our disease is being used for marketing rather than finding a cure.
Thought I'd pass it on, I'm very interested in seeing this.
Susan
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My last chemo was Tuesday, January 17, I mailed the caps back on Friday, January 20 and my deposit was credited on Thursday, January 26.
I'm impressed! I thought it would be weeks not days!
I am having very little shedding. I am currently on an annual beach vacation with my husband's family- were it not for the Penguin Cold Caps he and I would be sitting at home comforting ourselves with talk of next year.
I still can't quite believe I get to keep my hair. I feel like I got away with something and if "they" catch me they are going to make sure I lose it. I think about half the people I tell I am in treatment for breast cancer think I'm lying.0 -
Wow! Thanks sebm9. I just watched the trailer. It's an eyeopener for sure!
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TheLadyGrey, When I read what you wrote about getting away with something etc., I had to smile. Those are my thoughts exactly! I am so thankful my daughter found out about these incredible caps. I still can hardly believe I get to keep my hair either.0
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Susan,
Thanks for posting this. It seems to underscore something I've suspected for a while. I refuse to wear pink - I am not defined by this disease, and especially not by the marketing around it. Not to mention that I was pretty annoyed with Komen this week.Glad they reversed themselves. I don't know what they thought would be gained by limiting funding for BREAST CANCER SCREENING for poor women. Sorry for the rant - needed to get that off my boob-free chest.
Lucky
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TheLadyGray: Congratulations and enjoy that trip! and congratulations Laura5 too! My best advice is: pay it forward. (Or, as one person said to me, don't hog your cancer: give back to the many women who will, unfortunately, be following us until a cure is found.)
For those with PFC shedding, try adding some iron supplements. It often slows or stops the shedding within a few weeks. (This is relatively new advice, and was not available 2 years ago when I did the caps, but this is how progress happens!) And continue with that cool-water babying-the-hair routine until the shedding stops. Once the shedding stops you are back to warm water washes and your regular hair care routine!
luckyjnjmom: it's been an eye-opening week. I didn't realize so little of the SGK funds went to actual research, and I also didn't realize how large a portion of PP work was dedicated towards cancer screening (including pap smears).
Today is the 2-year anniversary of my DX. And I'm in such a good place, physically, mentally and spiritually, and so much of it due to the PCCs.
To everybody just starting out, you will be in this same good place soon, just take it one day at a time and give yourself a lot of space to heal at all levels.
Best,
Susan
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Hi to everyone, had second chemo and cold cap yesterday. Pleased they found a good vein this time and went well. Cold cap was very cold this time so I was glad it was over. My onco made me laugh she kept looking at me and smiling. I said what you looking at she said my hair looked great and so much of it. She said again get a wig but I said I won't need one. She said I looked good and healthy and my blood count was good. The nurse who took my blood said the same and kept looking at my hair.
I must say this time it was very cold but I kept thinking I'll have my hair and that's everything to me.
Hope everyone is doing well and keeping warm it is so cold in England.
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sebm9, thanks! I am spreading the word about the caps. There was an event held about an hour from where I live with proceeds going to Rapunzel. Rapunzel contacted me and asked if I could give a little speech, or at least write something up for the event. I knew I would cry if I read my story, so my two beautiful and incredible daughters went with me and read my story. I am sure it made believers out of everyone there, because they could all see that I still have all of my hair. I am hoping there were doctors and nurses in the audience, because they are the first line of defense. They showed a video clip featuring Shirley and Nancy from Rapunzel, Frank, and someone I didn't know. I wondered if it was you, as I know you have spoken at several events.0
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Ali,
It sounds like you're going port-free. I did as well. Still am, as I have 12 more infusions of Herceptin. I had two chemo nurses who could start the IV with little problem - and the others had to poke me 2-4 times to get it. Thankfully, I had only 4 rounds of chemo so that nasty is behind me. I think the chemo nurses get out of practice with IVs, as so many people have ports. I just didn't want a medical device in my body 24/7 for a procedure that (at least now) is 1 hour every 3rd week. It can be tricky with the chemo drugs. If they leak from a poorly placed IV they can cause damage to the surrounding tissue - depending on what drugs you're on. Some are a lot worse than others. My advice would be don't be shy about asking to have a nurse with whom you've had good luck getting IVs going do the insertion each time. Starting an IV is a developed skill that requires practice to maintain. Good luck.
Susan - I totally agree with your philosophy to pay it forward - we owe it to those who came before us to help those who, unfortunately, will face this in the future.
Lucky,
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ali68: I had TCx4@3. Every week until round 3, my doctor said "You look great, your bloodwork is perfect, but do you have a wig in a drawer somewhere?" I just said "I'm all prepared." By round 3, she stopped saying that. By round 4, she hugged me, and she now recommends caps to her patients.
It is enormously empowering to watch the world around you change in this way! Enjoy every moment of it.
Laura5: It might have ben gerilyn? I have never spoken at a Rapunzel event. In fact, early on when I contacted them about a freezer, they said they didn't donate freezers :-( I was kind of put off by it, but I understand they now do donate freezers. Sure wish I could have got one for my cancer center, it was 2 years ago.
ali68: I didn't have a port, and my nurses advised having lots of broth and salty things the day before infusion to "plump up" my veins. It definitely helped.
Have a good weekend everyone!
Susan
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sebm9, Rapunzel donated a freezer to my facility. They did not want to accept it, but persistence paid off and they finally said they would. Then, when my treatment was over, they did not want to keep it. I think they don't believe anyone else will use cold caps and need it. None of them had ever heard of them until I used them. I asked my onc to tell other patients. He said he would and I gave him PCC brochures.
The video they played at the event I attended was a collection bits of videos from different events, not necessarily Rapunzel events, some from PCC events as well.
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Congrats Leesa Ann, Lady Grey and others just finishing up Chemo
. Just one more step behind you now towards normal life. Congrats Susan on your 2 yr. anniversary, I'm glad you are doing so well.
Ali, my second chemo was 4 days ago. I went in the day before for the blood work and the nurses said "You still have your hair!" I know it would be coming out in clumps right now if I didn't have the caps. I feel like a cancer patient in disguise when I'm out and about. The cold and extra labor on infusion day is worth it now. It has thinned and I lost hair underneath at the nape of my neck on the right. I have started taking iron which my nurse ok'd.
My nurse mentioned how Latisse can permanently change the color of your iris, which I had heard. I only plan to use it on my eyebrows if they come out. I have the prescription but will wait to fill it. I will just wear eyeliner and maybe my glasses full time if I lose my lashes.
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Hi to everyone, got up on Saturday morning felt ok so did some star jumps to get he blood flowing. Went into kitchen to make a cup of tea and do the dishwasher. Turned the tap on and felt a terrible pain in my lower back I couldn't move only screamed for help. I had two daughters and a hubby at home who came to see if I was ok My CAT. Hubby and girls helped me into bed the pain is so bad I will never say I have backache again.
The doctor came and said it wasn't the chemo but I must have pulled a muscle. All I can say is this is worse than breast cancer, I can't move and when I do I scream. Doc gave me strong pain killers and I'm in bed and having to get up walk for five mins to get mobile.
The funny thing was when I spoke to a doc on the phone he said do you have and problems apart from this back pain. I said no then remembered ow I have breast cancer, he thought that was funny I had forgotten.0 -
I feel for you Ali, I have also had lower back trouble a few times. It is the worst! Hope it heals soon.
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