Ibrance and your hair

[Alnmouth]

It's taken nearly 5 years, that's how long I've been on Ibrance and letrazole, but now my hair is an absolute disaster . Any advice from anyone? Also I get easily short of breath and suffer dreadful fatigue. I feel I shouldn't complain cos I have no changes on my cat scans.

[Lynn-in-California]

I have the same three complaints. I've been on 125 mg. of Ibrance for over eight years and I've had a lot of hair thinning, breathlessness, and fatigue. I don't blame the breathlessness on Ibrance, but on tumors in my lungs, a fungal infection in my lungs (coccidioidomycosis, also known as Valley Fever), a pulmonary embolism from a few years ago, plus obesity. I'm 63. My main complaint that I blame on Ibrance is arthralgia (stiff joints and sore back).

It's totally okay to have grief for these changes and hardships we have. Once upon a time, I had a splendid figure, was a professionally trained dancer, and won "Prettiest Hair" in my high school out of a class of over 900 students. Now, I have pathetic hair and a dandy cane/chair thing that I keep in the trunk. Standing for a long time hurts my back, so I like being able to pop open my sit-upon. Honestly, I read all the research when I was diagnosed as stage four and never expected to last so long. I have outlived a variety of other people in my life who have gotten diagnosed with various maladies and popped off in months. Heck, I'm alive and I have SOME hair; that's the good news.

I am big on self-acceptance and trying to think kind thoughts toward myself. I don't know how much time I have left in life and I don't want to waste any time mourning that I look different or worrying about what people think.

Envision a cute photo of yourself as a sweet little child---and in your mind hold that cute girl on your lap and tell her you love her just the way she is. That's what she needs to hear.

I was super responsible and super hard-working when I was a college professor, before I retired. I still have an array of responsibiities in my retired life, but more and more I am giving myself mental permission to just put things off and not get things done. It's really helpful. (I think sarcastically, "If I were dead, that task wouldn't get done (!)---and the planet would keep spinning---so maybe I will just not do that task right now.")

I admit that I am rather touchy about the healthy, athletic people in my life who think it is a good I idea to suggest that I take Zumba or stretching classes or take a chair and sit and do sitting exercises in an exercise class. I patiently explain, "It throws me into a panic when I get breathless and that is one of the absolute worst feelings of torture for me, so no, I am past wanting to go to the gym and build my aerobic conditioning. I have stage four cancer with tumors in my lungs, so I'm trying to have gratitude for each and every day, but I'm also giving myself permission to be in this stage of taking it easy in life. This is kind of what people in a health decline do." I explain to help my loved ones by being transparent, and maybe it can help them with their own grief and their journey towards acceptance (about me).

Obviously, in this world, it's just undeniably better to have hair, be healthy, be pretty, be strong, be peppy, yada, yada. But ACCEPTANCE of what today feels like physically and emotionally inside ourselves is great to get in touch with. Be gentle with yourself and release yourself from some expectation you might feel to perform health and beauty to make other people feel comfortable.

I am on the verge of deciding to not go on any more airplane flights. Well, I'm pondering. It is just too much work and unfun to go on little jaunts to see family. I am not enjoying visits so much and I just think, "I want to go home." I am thinking, "If people care, they can figure out how to come and see me." Maybe I am disconnecting a little mentally in preparation for the great, inevitable goodbye. I have no progression, but I am slowing down fersure.

Anyway, I have probably overshared with this long post, but I mean to be helpful in sharing thoughts of self-acceptance and embracing taking it easy.

Having said all this, you might be surprised to hear that I am hosting 30 people for a going away party for a friend at our house this Sunday. So, I'm not exactly curling up my toes and dying quite yet. I'm girding my loins for a Costco run.

Sending you mental hugs.

[visitingnurse in reply to Lynn-in-California]

what a great post!! you made my day ! I am always comparing myself to before weight gain and bilateral mastectomies!! big difference, but like you said we are still here!! God Bless you, enjoy your party!!

[NPmary in reply to Lynn-in-California]

THANK YOU, Lynn. 🌺 Mary

[Alnmouth in reply to Lynn-in-California]

What an absolutely wonderful,heart lifting post. I have no words to describe how much better it has made me feel. how brilliantly it was written, how true the words are and what an exceptional human being you are. You have made me feel so much stronger. THANK YOU and sending you all my love.

[SMPG in reply to Lynn-in-California]

You do things right. I love it. We all are to be grateful for what we have and what we are right now. As for hair, my hair is thinner but I keep it pretty short and I stopped coloring it. No chemicals in my hair any more. Rosemary oil is good for hair. I apply some every now and then.

[kiwi67 in reply to Lynn-in-California]

What an absolutely brilliant post. It gives me a lot to think about, especially being grateful for how I am currently and not to listen to others who with the best intentions in the world just don't get it.

[love2golfwell]

I have been on Ibrance for almost 3 years and my hair has changed a lot, too. It used to be thick, coarse and easy to cut and style. Now it is quite thin and the texture is different and is hard to do any type of styling with it. I love getting it cut and colored as it looks nice for a few days after that. I have bought 2 wigs that I can wear when I go out. They look cute and make me feel pretty. I always get complements on them. One was relatively inexpensive from Wigs.com, the other was fairly expensive but I was able to get half of it reimbursed through insurance. I have not experienced the other symptoms you mention, and I am so sorry you are dealing with those. I am currently stable on the meds and am grateful for that. The hair issue is not great, but as long as I still have some and can put on a cute wig when I need to look nice, I'm good. I know others on here have mentioned products to use that might help with the hair issues and you can search other posts about that in related posts. Hope you can find solutions for your hair as well as the other issues you are dealing with. Sending you hugs and prayers.

[Alnmouth in reply to love2golfwell]

Thank you. I think I will get it cut

[love2golfwell in reply to Alnmouth]

You are welcome. I always love my hair when I get it cut and colored and styled, even it if only lasts until I wash it! My hairdresser also shows me how I can create the same style if I want to.

[Kcap430]

❤️❤️❤️❤️

[Kdiet]

It will be four years for me on Ibrance and Letrozole in November. Fatigue from Day 24 to 28 is still terrible. My hair is now ok. I take oral minoxidil.

[Alnmouth in reply to Kdiet]

So you think minoxidil helps?

[Kdiet in reply to Alnmouth]

I do. I used to apply the topical and that helped too but it also made my hair flat and greasy. I think the minoxidil helps about 20% but that is just enough to make me look ok....

[Alnmouth in reply to Kdiet]

I'm using these drops ,keratin I think they're called,daily but don't see any real difference yet. I had realy long blond hair and it was my best feature. I feel bad for complaining cos after all I'm alive.

[Kdiet in reply to Alnmouth]

It is ok to complain especially about hair; to me, that means you still have a lot of living to do...x

[Mumberly]

Well said Lynn lol. I don’t know how to follow that up 😁

I’ve been on Ibrance and Letro for a year (looking forward to saying I’ve been on it for 8) and my hair started to thin about 6 months in.

I already have an awesome wig from when I was on chemo, which I love better than my own hair anyway lol.

I’m not sure what services your cancer society offers but the Canadian Cancer Society offers a free wig loan program. You can check it out on line.

Look Good Feel Better is also an amazing resource for hair and make up tips.

I respect people who go without, but it’s just not me. It boosts my spirits and makes me feel younger and healthier. I keep a very positive outlook on my condition and I want other people to feel that way too.

There are lots of choices for head coverings, or to go without. I hope you find what works best for you.

Take care,

Kim

[Alnmouth in reply to Mumberly]

Thanks Don't feel I'm ready for a wig yet

[Totheriver]

I also had trouble with thinning scraggly hair so I finally buzzed it and wear a wig. Makes me feel a whole lot better when I look in a mirror. Hope this helps. 💕 Theresa

[morty87]

My hair has changed too - but I contribute that to it turning gray. It has thinned some, but I only seem to notice. I use salon quality products and I try to style my hair only once during the day. It's short, so this is easy to do.

I do have some shortness of breath too, but I contribute that to the extra weight I've put on, CHF I was diagnosed with after traditional chemo, and the letrozole. I have all the achiness that others have. I bounce when I need too as I currently still teach HS full time!

Good luck and God bless.

[Alnmouth in reply to morty87]

Thank you

[mariootsi in reply to morty87]

Bless u for still teaching. I taught for 38 years and can't even imagine being in the classroom with mbc. I really loved teaching.

[morty87 in reply to mariootsi]

Thank you! This is year 33 and honestly, I think it has kept me in better condition than staying at home worrying about MBC!!! Bless you for teaching 38 years. I hope to continue teaching as long as I am able.

[mariootsi in reply to morty87]

I hope it will be a long time! Your students need you.

[morty87 in reply to mariootsi]

You are so kind - thank you for making my day!!!

[Fiercelypink]

I had awful fatigue, terrible joint pain, awful brain fog and hair loss on Ibrance also. I've been on Kisqali for 3 months now. The hair loss is similar, but my mind is clearer, my energy is good, and I'm not having joint pain. Kisqali is supposed to be as effective as Ibrance, so maybe talk to your doc about a switch! I agree with Lynn below about being kind to yourself, but if you can have the same results with fewer side effects, why not?

[Tealkia]

Oh my goodness, Lynn, you made me cry. In a good way 😊 I agree with every word you said and also try to make the people around me feel at ease with my decline. When I have a difficult day I tell them so and cancel whatever might have been planned. Transparency works wonders I feel. To all of us in this shaky boat - onwards and upwards 😄🙏🙋‍♀️

[HelenWi]

I’ve been on Piqray for 8 months and my hair has thinned significantly both in texture and quantity. If I get it looking ok in the front, it looks bad in the back. 🤣. Ugh, I had good wavy hair.

I did find a shampoo/rinse that is leaves it feeling better — not sure about long-term improvement yet, but the salon owner said it helped her mom who had MBC. It’s by Kevin Murphy and called “Plumping.Wash — Densifying shampoo for thinning hair” and Plumping.Rinse. They apparently should be used together. They’re not cheap but if they help, it’s worth it.

Good to hear about no change in Cat scan … enjoy every day!

[Aging69]

I was on Ibrance/Letrozole for about 5 years. I had significant issues with low white blood cell counts and low platlets. Eating foods that increased white blood cells such as salmon and shelled seafood (lobster, crab, and calamari) helped me for several years. Taking Vit A and E supplements also helped. I did not get fatigued and my hair thickened.

[Alnmouth in reply to Aging69]

Thanks I'll try vit A and E.

[mariootsi]

My hair is a disaster too. So thin and frizzy.