Hair Hair Hair - Another question
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AEM47: I wish I had your eyes. Beautiful photo of you and your daughter.
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ok i lost track of who said what lol But i am compelled to give my 2 cents.
I was able to go topless 4 months but it was very very short, kind of GI jane so wore a hat most of the time, by 6 months looked like a normal short haircut and my head stopped getting cold.
I NEVER lost my lashes or my brows, 2 years PFC , 4 tx of TC. They got a little thin I barely notices it until I finshed tx and they started to get a little thicker again.
cold caps . . . I have heard from a few women that they work very well. I on the other hand was concerned that if the hair didn't fall out perhaps my head was not getting the full benefit of the chemo. I also really have trouble tolerating cold. I did not read any studies on this though. I had a very very unethical pushy salesman try to get my to buy them by scaring me and telling me I had a 95% chance that my hair would not come back, which really upset me as you can imagine and was totally untrue in any way. As soon as I hung up the phone I read the drug companies reports but was still very afraid. Needles to say hair came back, and fast same as it was.
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My MO was willing to do the cold caps but said even tho BC cells usually do not travel upwards, she was not comfortable with doing the caps saying it might prevent the chemo from getting to the scalp. - god forbid I ever have to revisit this nightmare again, I would do the caps....maybe i could put them on my eyes too since I'm now on my THIRD fallout !!!.
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Hi Everyone,
I am going to try the Cold Caps. DH and I have done a lot of research on this subject and feel it is worth a try. UCSF just completed a study on cold caps and sent me information on their study. 68% would overwhelming recommend the cold caps. A few others said it was a lot of work but it did the job it is supposed to do. Not one of their patients required a wig. There next study ( hopefully this year) is to gain FDA approval. Ladies, this is huge because maybe insurance companies will pick up the cost. Right now it is expensive and a lot of work if your treatment center does not have the right freezers, but it will only be six days of my whole life (at least I'm hoping I will never need chemo again). I'm praying for a cure so nobody will have to make a choice to use the cold caps or not. Wishing everyone here a speedy recovery!!0 -
If I ever had to do chemo again I'd do the cold caps- although I had 16 rounds of chemo not 6. Losing my hair has been a lot worse than I could have ever imagined it would be. You lose so much including your privacy which I have come to discover I am value extremely highly.
Good luck with the cold caps!0 -
Andrea: You and your daughter look beautiful!
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Thanks Nkb,
I checked into wigs, but where I live it can get to 100 degrees early summer and I figure that will be about the time I'm going back to work and my office is small with a lot of windows. If I would have had node activity I might have not gotten the cold caps because I'm HER2+ and 1/3 of metastic breast cancer that is HER2+ goes to the brain.0 -
Thanks for all the input! My eyebrows are finally growing back in, but my eyelashes are just now falling out. Just when I start getting hair back and eyebrows my eyelashes start falling out. I guess it's always going to be something. And from what I've read from everyone here the eyelashes seem to keep cycling around and falling out? I never really had thick or long eyelashes to begin with so I guess it's not too terribly bad, but I do miss them.
I need to figure out how to add pictures so I can add mine here when my hair gets a little thicker cause I love the pictures here.
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Hi AEM - I also had Cytoxan and Taxotere and I'm just over 2 weeks behind you in terms of treatment dates. I hope I am not jinxing it for myself, but I only lost my lashes once - which was two weeks after my chemo treatment ended (never lost my eyebrows). In addition to following the recommendations posted here (biotin and eating carefully) have faithfully been using Lumigan (aka Latisse) every night. I had my onc doc gave me a prescription, so my 3 month supply is super inexpensive since it is covered under my insurance.
Have you also used Lumigan/Latisse? I am wondering if my eyelash retention is due to Lumigan/Latisse or to lgood uck? I am curious to hear whether others have used Lumigan/Latisse and still suffered lash loss.
Hi All - Also, I checked into the cold caps. My onc doc said that I would need to have a trained person with me all during chemo in order to change the cold caps. Cold caps need to be replaced during chemo in order to keep the head "frozen". My doc explained it wasn't an easy process to change out the caps. My chemo area did have the freezer available for the cold caps though. My wig was super super expensive, so the cold caps and help changing them would have cost me the same - but I could not find suitable help in changing the cold caps. I am hoping the process improves in case I ever have to go through this terrible process again.
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Milo - go figure...I've been using latisse since the 2nd TC treatment.!!! I don't know what the deal is with them? They come back so thick and long...but this is the third time! The only thing I notice this time was there was a lot of 1/2 length lashes before the long ones fell out. That was different from the last 2 times when they fell out and the new ones were just starting to appear - which made it soooo noticeable. I'm thinking ( fingers crossed) that this may be the last noticeable time they fall out. My brows on the other hand only disappeared the one time as chemo ended ....I guess I should be happy about that :-)
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Milo, how did you get you insurance to cover your Latisse? My onc wrote my prescription but my pharmacy said that my insurance would not cover since it was for cosmetic purposes. I might call the pharmacy again to doublecheck.
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Hi = do you know of anything that can stimulate the eyebrows? Mine thinned badly the first time I had to go on chemo.. Now that I am back on it.. Well they look faint, I'm not really sure how much I have lost.. but I use a lot of eyebrow pencil.. Do you know of anything for the eyebrows? Thanks..
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Mermaid, I used Brian Joseph gel - it was pricey, but my eyebrows and lashes lasted through 4 AC and 12 Taxol, although they did thin. When I ran out of my second tube of it ($50 each), I used extra virgin olive oil - a dab on my eyebrows every night because I was also using it on my hair. Who knows if it really works or not, but my hair came back thick and shiny after the initial weird gray fuzz and my eyebrows & lashes are thick now - you would never know. Biotin is good for healthy hair growth too - I take 5000 mcg a day. But I don't know if you can take that while on chemo - i took it after I was done. If you need to fill them in, the Anastasia Brow Set is very good - it comes with stencils (@ Sephora).
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Hi everyone.....I have read some of you have or are using Nioxin....could you please tell me which type of Nioxin you are using as there are many types! Thanks sooooo much!
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Runnergirl, The system you should use depends on your hair type. The Nioxin website has a little quiz you can take that helps you choose the right system for you. Probably one of the ones for thinning hair (they are not described in terms of bald/post-chemo, but my thinking was the ones for thinning haor would boost growth more) Amazon had it at a very good price. I also used the Nioxin Booster Serum (also at Amazon). Search back on this thread for other ideas - ie; Biotin, olive oil massage, B-complex & extra B-12 - I used all that & more in addition to Nioxin. haha I guess the downshide of that is I don't know which, if any really worked - maybe it was just normal growth and I was using olive oil every night and going to bed smelling like a salad for no reason. Actually, I would have stood on my head 12 hours a day if it stmulated hair growth
And, one more thing - I have seen Nioxin at TJ Maxx and Marshalls much cheaper than at salons or Ulta, but usually just individual bottles and not complete systems.0 -
I am 2 1/2 weeks PFC and not seeing any new growth yet, getting very nervous. Taking biotin, using olive oil and hor growth shampoo. Did anyone else have a slow start to hair regrowth?
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butterfly- You probably won't see any growth for at least four weeks. Be patient, it will grow!
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butterfly - that wouldn't be considered slow regrowth. It can be up to 7-8 weeks even before any detectable growth...then it seems to just take off!
Some have some growth begin while on Taxol I believe, but you shouldn't worry at this point. I first saw a "five o'clock shadow" appear at about 7 weeks & it did seem like an eternity when looking for it every time I looked in the mirror...link below takes you to my photo journal (scroll on down to the end & view in reverse order to see how it went). Taking pics regularly once you see growth really helps you note the speed at which it comes back!0 -
Thanks sonson, just so afraid of being one if the few that doesn't get their hair back. Looking for hair growth is like watching paint dry....
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Butterfly- I agree. It is like watching paint dry. But like CAYH says once it starts growing you should take a picture each week just so you can see the difference because there will be a difference from week to week, but you won't see it since you look at yourself every day. And she says 7 to 8 weeks so if your hair is delayed beyond the four that I mention still don't worry, everyone's hair grows at different speeds. I'm hoping it's sooner rather than later though!
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Hi Butterfly! Are you seeing hair anywhere else on your body growing back? I noticed my leg and pubic area growing before my fuzz started.
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Hi tc9876 - here's the scoop. I've used Latisse since it first came out. But once I found out I had cancer, I searched through this website and learned that my $95 Latisse is the same product as Lumigan 0.03%. They are both bimatoprost. In fact, if you compare a bottle of Latisse to a bottle of Lumigan, you see the same plastic white container with the same blue/green cap. At one of my initial onc doc appointments, I asked him for a prescription for Lumigan. My onc doc didn't know about Latisse but he looked up Lumigan and Latisse on the computer while I was with him and realized they were the same product. He gave me a prescription for Lumigan 0.03% and he has since renewed it for a year. Lumigan is really used is for glaucoma so that's why it is covered under normal health insurance. Once Allergan realized it helped grow lashes, they slapped on a new name on the bottle and sold it as a cosmetic item and gave us the opportunity to pay full price for it. Ask your doc for a prescription for Lumigan 0.03%. Ensure you get 0.03% as there is a 0.01% Lumigan too. The 0.01% Lumigan is weaker and therefore not the same strength as Latisse. I used Lumigan every night all during chemo and every night since it ended. As I mentioned in my post to AEM, I only lost my lashes once - right after chemo ended. Latisse comes with a huge number of small brushes that you are suppose to use with the liquid. Those brushes absorb too much of the liquid. I have my own very small brush that I use every night to apply the Lumigan. This small brush came with some eyeshadow I had purchased (I had never used the brush for the eyeshadow) and the bristles absorb just the right amount of Lumigan and make application to my lash bases a breeze. I keep the brush clean and store it in a container so I can prevent eye infections (never had a problem so far). Once you get the hang of applying it to your lash bases (I use it on top and bottom lashes), it is easy and can become part of your nightly routine.
AEM - I am sorry Latisse/Lumigan has not been as kind to your lashes as it has been for others. It's not fair. It's so upsetting to lose eye lashes once, so losing them several times is too cruel. I hope you are now past the phase of losing your eyelashes any more times.
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HI Milo ad AEM, I had an rx of Latisse presribed to my by my derm. She explained it does NOTHING for hair loss, only growth. So you have to have eyelashes in order for it to grow. I have only lost my lashes once--about 2 months pFC and I am not 7 months PFC. My lashes are about what they were pre-chemo. Am thinking about using it now, since I have the RX , and no my insurance does not cover it. I, too, had T/C treatments.
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Thanks sonson, trying to stay calm.
JoJo - not seeing any hair growth on legs or pubic area either, so maybe I am on some weird cycle, hopefully.
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Milo, very interesting about the different names for the same product. I would like to add, tho, that my perscription card (through husband's health insurance from his work) does pay for my Latisse perscription, and it costs me about $20 a bottle. I do the same thing as you, using a small pointy brush that I bought specifically for Latisse application. I squeeze a drop into the lid of the Latisse bottle, and dip the brush into the drop and apply it to my upper lashes and also eyebrows. Sometimes I use one drop for each eye, sometimes I just use one drop for both eyes.
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Milo, thanks a bunch!!! That was very helpful. I had a prescription for Latisse. I'm going back to my Onc and ask for a prescription of Lumigen.
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My Hair Story... (if you're interested)
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When I was waiting for my hair to grow back in, I loved seeing progress pictures. So, I figured I'd post another one
) This is me before dx, during chemo, and now at 6 months PFC. It's growing in pretty slowly (3 more herceptin treatments to go!), but it's there and I get a lot of compliments on it now. Everyone's telling me I should keep it short, but I doubt I will. I miss the versatility of my longer hair.
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Thanks Juneau I'm at 9 weeks and my hair looks similar to yours at 9 weeks so that makes me feel good. Also makes me feel good to see your 12 week picture. I think if my hair looks like that at 12 weeks I'm going to go without the wig or scarf.
KristinFro- Your hair is absolutely adorable, but I understand about letting it grow out as well. But you can feel good knowing that while it's short now you look really cute!
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Wow, Junebug, love the timeline and exactly how did you make that? Very creative.
Kristin, you look great with the short hair and even bald I might add! My hair is now longer than I've probably ever worn it, the back is almost to my shoulders and the front is just a bit shorter. I am just going to let it grow grow grow. I'm having fun with it, and like the variety that the longer hair offers. It's easy to take care of, too.
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