Hair
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Thank you. I think my hair probably would have been okay, if not slightly thin after chemo. I had a rough time with Tamoxifen after chemo but my hair did okay. When the cancer came back the Verzenio or possibly the Verzenio/Faslodex combo has been the one wreaking havoc. I agree with Serendipity, though I fantasize about quitting the Faslodex, this combo has kept my cancer stable and that is the priority. My last PET was read NEAD though there is evidence of the tumors still being there on my MRI and bone scans. Either way, I can't risk progression for the sake of my hair. I did really well bald. The strategy right now is to grow long enough to pull back into a ponytail. If that looks tragic, I'm buzzing it. I'm just done with the struggle, there are too many bigger struggles with this disease already.
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losing my hair was extremely traumatic- it fell out with original chemo 10 years ago. grew back same texture. was thinning in the front on AI, got really thin on Ibrance. very thick and luscious on AA- I don't think I ever saw any hair in the shower or on the brush!
Then I got severely anemic and lots fell out- right when I was starting Xeloda- wasn't sure if Xeloda was part of it- but, it came back when anemia resolved- I would say that it is thinner with Xeloda, but, nothing like the thin of Ibrance.
Losing my hair became a privacy issue for me- people started telling me awful stories about friends dying of cancer etc- lots of weird advice. I don't like wigs- but, I got lots of compliments while wearing one !! I did best with the baseball hat with hair- most comfortable. Having Hair is so convenient
Xeloda is starting to fail and I will have to start IV chemo soon and will probably lose my hair again- it's not vanity - it is sense of self, privacy, I don't have whatever it takes to rock wigs
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NKb - I'm sorry you are having start IV chemo again. Don't know what you will given, but I hope your hair does not fall out.
I agree. it is a sense of privacy and self. My hair was a big part of me and I loved my hair. I was blessed to have great hair. However,I know I'm blessed to be alive right now.
I cry when I have to get ready to go somewhere that requires me to dress up. Since covid I really haven't gone out anywhere, but last Friday I went to dinner with friends and doing my hair and make-up was very emotional. First my hair is short, compared to to the 12 inches of thick curly hair I had; second, it's dark so I look very different, friends and family don't recognize me. I always had highlights and was blonde and it looked good on me; now it's just dark brown, Iu'll highlight it after I stop taking Xeloda; and third I don't know how to style it. I know all of this sounds like vanity, but it really isn't and I'm truly grateful to have hair.
As mentioned in above posts, the Xeloda is really thinning it out. I'm currently on two week break from the Xeloda, but I can see the difference of how much less it's shedding.
I hope all goes well for you! {Hugs}
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serendipity- you can get highlights while on Xeloda. I continued my natural hair color treatments the whole time - it would really help I think. I don’t know how to style hair either- I wonder if a great cut would make it easier.
You are right - just having hair is wonderful.
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Thanks Nkb! The MO told me I could, but I was scared to do it. Now I will. I completely agree in that I think it will help. I just don't feel like I look myself. I know different is good, but not this different, lol.
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even though IV chemo is around the corner for me- delayed a few months while I get new spots zapped- I just colored and cut my hair again - feels so much better! My hairstylist and I have been together 30 years. She went with me to the wig store to try on wigs and match color 10 years ago when I got the first chemo and lost my hair- and will go again with me I am sure- in the meantime I am living for today and not making dates to cut it all off or get a new wig. Just going to enjoy having hair right now and mayb dip my toe into researching cold caps.
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Nkb--I have similar treatment history to you. Scheduled for 1st scan on Xeloda in Feb, so have no idea how it is working. What IV chemical you expect?
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Nkb - that's all we can do...live for today! Good for you for getting your hair cut and dyed. I need to make my appointment, my girl books out a ways. So excited to go blonde again.
There's a clinic here that does cold capping, however it cost $500 per session. It would've cost me $8000 to go that route. I didn't have time to research doing it on my own as I started chemo literally 2 days after being diagnosed.
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Nopink2019- my MO mentioned Doxil as a first choice. She said it was once a month so less exposure in the hospital etc. She said I will be cycling through them all eventually- which I guess we all know. I am not sure if she mentioned that one due to thinking it would be most efficacious or easiest or ? She mentioned MUGA scan for my heart beforehand. It is early slow growing progression but, she said two PETs in a row showing new spots was a pretty clear indication of failing. No hurry- but- gotta switch. I met with RO yesterday and we will zap those spots which will buy me some time and prevent pain and fracture. It has worked 22 months.
Do you do TMs? Mine decreased significantly after 2-3 weeks on Xeloda.
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I wasn’t on the Zoom call, but thought I would chime in. I loved reading everyone’s hair stories!
I knew I would lose my long hair with chemo so I buzzed it to about a quarter inch before chemo. The place where I got my wig actually did it for me when I picked up my wig. I didn’t go completely bald —a few hairs hung on for dear life. It looked so awful I considered shaving my head, but decided against it. My hair started growing back when I finished chemo, but it was slow growing since I was on Herceptin. When Herceptin ended last August I had short hair with a very thin patch right at the crown with frizzy kinky hair but the rest of my hair was mostly straight/wavy as it was before chemo.My eyebrows and lashes also came in sparse and not as long.
I’ve noticed that periodically my scalp will be tender and my hair sheds more than usual. I tried switching to a different kind of Tamoxifen to see if my hair would stop thinning. When it didn’t, I switched back and started taking Biotin with my MO’s approval. I didn’t notice a difference right away, but my stylist is amazed at how fast my hair is growing. It’s already shoulder length!
Biotin also seems to be helping my weak nails which have been prone to splitting with the slightest pressure. I wish I would have started taking this earlier since it takes some time for it to work.
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Nkb, lab changed marker they use so not much to compare with now. MO said let's skip Jan and do all mid-Feb. In other words, Keep Calm and Carry On. 😃0
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Nopink2019- always a good plan, my Tms went down monthly for a year and then fluctuated and now go up a bit every month- they are still lower than the lowest they ever were on Ibrance or Afinitor.
getting radiation starting next week and still on the Xeloda for now- trying to keep calm and planning to go to Yosemite and see some friends and hope I can make it to a quilt seminar in Asilomar in March. Lofty goals I know!
lovely spring weather here - hope you are all having a good day
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Nothing to do with hair but Nkb I just wanted to say how I love Asilomar! Teachers in Santa Clara Co.used to go to a reading conference there many years ago. I really loved those conferences.
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Has anyone tried a semi-permanent hair color? My hair is definitely much thinner on Ibrance/letrozole, and I'm thinking of coloring it a wild purple or blue just because why not. The products I've read about all say they don't damage the hair since they just coat the hair and wash out in a few weeks...but I wonder if that really applies to, you know, Cancer Hair.
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SFCakes- I have used semi-permanent color for years and definitely all through Ibrance etc. it is not blue, but, it fades over a few months depending on how much sun you are exposed to and if you wear a hat outside it lasts longer, my hairdresser does it and I don't know the brand.
why not?
Exbrngril- looking forward to it- looks beautiful. I love Esalon also.
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SF-Cakes -
I have used semi-permanent hair color for over 30 years. I understand that while permanent dyes contain peroxide, even dark shades, the semi ones are better for hair. They make hair feel thicker, too.
For the past 10 or so years, I've been using Clairol's Natural Instinct, in dark brown or black. Only my roots show after time, and I use a L'Oreal Color Spray on top so that I don't have to color as often.
Recently, I bought a fall (or partial wig, or crown hair piece, or other name) that sits on the crown of my head. I comb some of my top hair over and it is a dramatic look. I don't like a full wig because it feels claustrophobic. I wish I knew how to show you before and after pictures.
- Anna
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Thank you Nkb and amontro! I'm going to talk with my hairdresser about starting with a more pale, pastel-type color and see how that goes. I like the idea of brilliant blue hair but have read it will turn green (which I really don't want!)
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SFcakes- good idea. I remember my hairdresser helping my kids fix their color after it came out a surprising green.
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Well, I had my hair cut yesterday. Since my hair came back after chemo, I went through a stage where my hair can only be described as going through what I call the "Sophia" stage (think Golden Girls character). The back was tight curls that only loosened a wee bit on the rest of my hair and after quite a while my hairdresser told me that she doubted that I would get my old texture back which was curly but a 2b/3a curl, which was definitely less of a tight curl than what I had. I have some restricted movement in one arm from radiation so I have a harder time styling my hair then I used to and I really don't like to spend much time fixing my hair any way. Yesterday after my hairdresser finished my hair, she said that she had officially cut out the last of the chemo curls! I finished chemo December 31, 2019 so it took a while.
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Cowgal- yay! I hope you get your arm mobility back soon-not so you can style your hair though. yoga helped me
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Congrats cowgal! I am getting my hair cut Wednesday. A good hair cut is always a nice feeling.
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Thanks Nkb and emac. My hair is thinner and has more gray than before but I'll take it!
Nkb - My lymphedema therapist who is also a regular physical therapist tried to help me get more movement back in my left arm last year but told me that we got as much as we were going to get. I will keep trying to do stretches but it probably is what it is. I am not sure if yoga would do anything different than the stretching I do or not. I am unable to put my hair in a ponytail due to my left arm but I have watched some videos of how Bethany Hamilton (the surfer that lost her arm to a shark many years ago) puts hers in a ponytail and I will need to work on making my attempt look better before it gets hot.
emac - I know your hair is been a bear for you. I hope the haircut makes it more manageable for you and hopefully eventually your hair will revert back to close to what was normal for you prior to chemo.
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cowgal - I'm having the same issue of barely being able to put my hair in a ponytail or clip because of my arm. I had lymph nodes removed and have this tightness under my arm that won't give. I've been in PT (LE certified) for over a year now, massage therapy hasn't helped and last week when I had shoulder surgery my ortho tried to manipulate the arm/shoulder while I was under to see if he could help alleviate that tightness..nope, he said he could not get the arm above my head, it's stuck. I was hoping to wake up and be able to move that arm at least above my head
I wish there was something they could go in and clip/cut and allow my arm to move again.My hair grew back such a yucky brown color (yucky on me, that is IMO). I know getting it colored would make me feel good.vI was going to do it, but I just restarted Xeloda yesterday after having a month off and saw quite a bit of growth during this time off and know that it's going to slow down and/or start shedding again, I pray not, but should probably wait until I'm done.
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cowgirl- I had double mastectomy with lymph node dissection both sides followed by radiation both sides and my pecs felt like they had no stretch left in them- I did briefly get some cording, but, got that massaged out and never got lymphedema. It took years of yoga and home stretches to get good mobility back- so maybe don’t give up yet. Daily stretches- lots of opinions on what is best- my yoga teacher is married to a sports chiropractor and studies body mechanics deeply so she tries lots of different stretches to see what works best for folks - we are all so different. I didn’t end up getting reconstruction - I was afraid of lymphedema and it would have been a lot of surgery on muscles that felt made of steel. Shoulders are tricky easily injured joints. More mobility allows more strengthening also.
Serendipity- I would go for it-
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I am actually coming to a place of resignation about my hair. Having always had curly hair, I never had to really work to style it because it would do what it wanted anyway. I wore it long and usually up in a folded over ponytail or twisted back. Now that I am thinning on top and that section also seems to have come in with a slight wave but mostly frizzy and straight I can not simply air dry and expect it to style itself. I am learning to use a curling iron to curl the straight pieces and that helps. I still have some noticeable thin/bald spots. The worst one is towards the back. I decided since I can't see it, I try to forget about it. Out of sight out of mind, right? I am hoping my hairstylist will have some suggestions for me. I discussed options with my MO's nurse practitioner and unfortunately I think the Verzenio or the Faslodex, probably both, have won this war for the time being. I'm trying to flex and work with it the best I can. I work in a hospital. At least I can wear scrub caps and still fit in. LOL.
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Well, that hair appointment was a major bust. Yesterday I was devastated but today I'm just angry. I had waited three weeks to get that appointment. When I got there I wanted to do something short, easy and practical. My hairstylist, whom I have known for years, wouldn't do it. She said it would make the balding/thin areas look worse than they were. I got really teary because I just can't keep fighting with it every day and I told her that. She thought I should just keep growing it and tried to talk me into these beaded extensions that would attach to my hair and stay in. You wash them and style them just like real hair. The problem is, my hair is curly, the extensions are not. So I would still be curling them to make them blend in to my head. Not to mention the process is between $500-600 every six months or so! No. I'm not playing that game. I left in tears. At least she didn't charge me for the appointment. She didn't do anything so why would she? Still, I sobbed all the way home. Not just about hair but just cancer in general. I hate it. I hate that it takes so much from us.
I have a friend who does hair and I am going to see if he has any ideas and if not, I'm going to ask him to buzz it. I'm done. I just need to be able to wear a hat and protect my head from the sun and the cold without having to worry about a lot of time styling or crazy unflattering hat hair. There are bigger things to put effort toward than hair. I'm so done.
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Please excuse me for posting on the Stage IV forum, but emac877, I have a suggestion for you. When my hair started growing back after chemo, I had a "monk ring" where the sides grew in faster than the top. I was terrified that my crown was going to be thin with bald spots, but it finally started filling in. In the meantime, I tried a product called "Toppik", a colored powder that has fibers in it and is sprinkled on the scalp to give the illusion of thicker hair. It really worked for me. There are several different brands, including a type that comes with a brush to apply directly to the "bald spot." I found that the application lasted from shampoo to shampoo, and didn't smear off on my clothes or pillowcase. You can find several brands on Amazon for reasonable prices.
This brand "Joan Rivers Great Hair Day" was my favorite... https://smile.amazon.com/dp/B01DV51WHU?ref=nb_sb_ss_w_as-ypp-rep_ypp_rep_k0_1_8&=undefined&crid=X0T5BX8GB152&sprefix=joan%2Briv&th=1
Another suggestion--ditch that hairdresser. You get to choose how you want your hair. Good luck to you.
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em- I'm so sorry! I'm mad for you too. I hope your friend can come up with something. He probably will. Cancer is such a crap-show. Girl, and if you get it buzzed, get some pretty earrings and put on a bright ass lipstick and rock it! (again I know easier said than done, Lord knows I looked like Uncle Fester whenI had no hair, lol) but I'm glad you've decided to focus on other things. There's only so much we can do and when it doesn't work, then moving on to the things that do work and that will give us joy is best. This coming from someone who cries for least an hour every time I have to get dressed up because I don't know how to do my hair.
Whatever you decide, keep us posted.
I was typing wile LW was posting. I've heard really good things about the fillers that LW mentions.
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EM- so sorry! Crummy. Can you find a hairdresser with a specialty in curly hair?
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emac, I'm so sorry you had this experience. It's really outrageous that what you wanted was just dismissed. And that the hairdresser's suggestion was to do the opposite of your request, and offer extensions! Good grief. I hate it when I've made up my mind about something and feel good about the decision, and then someone tries to talk me out of it.
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