letrizole/verzenio combo hair loss

[CatLady2022]

my hair is beginning to thin. I’ve been on this regimen for 8 months and I’m just beginning to notice more shedding. My question is, does the hair loss slow down at some point or will I continue to lose my hair until I no longer have hair? I’m starting to panic about it. I was bald the first time with stage ii and chemo in 2014 but this time around as stage iv, If I lose my hair, it will never grow back. What is your experience good or bad….

[Bettybuckets]

hello dear Car Lady,

I have been on Verzenio and aromasin for 7 months… and I was bald with my BC treatment like you… and I also think about how if I lost my hair now I might never see it grow back… so we are similar.

Also my hair has shedded too. And it is noticeably thinner. But still looks like hair so it doesn’t bother me much compared to the worry I have about losing my voice now that a vocal chord has become paralyzed and talking for long time hurts,… I’m more anxious as it is the night before my next PET scan. I am grateful each night that I am fairly comfortable not yet needing to take opioids —except for once recently… I’m spending tonight snuggled next to my daughter overnighting with her to be closer to the hospital… and we have had so many laughs and luckily she reminded me that I was not supposed to eat carbs for dinner even though I brought spaghetti and homemade sauce so she wouldn’t have fo cook for me after work

. Instead, My sweet girl made me 2 eggs and saved the day! I’m sorry I don’t have any words of wisdom regarding the hair but hope that you have some small blessing to focus on too.

[CatLady2022 in reply to Bettybuckets]

What reason has your vocal chord become paralyzed? Is that some side effect of a medication? Good luck with your Petscan! I get scanxiety a few days before my scans. I just had cts done yesterday and I’m thankful the news is my cancer to bone is stable or at least I think that’s what I’m reading. Will know for sure when I get the oncologist opinion on the scans tomorrow at my monthly appointment.

Of course I have more important things to be worried about and hair is just hair so it’s not that important but for me, I don’t like the pitying looks I get when I’m bald so having hair, for me, is knowing I don’t have to explain anything to strangers and since I don’t look sick, it stops my mom from worrying too much. I’m an only child you see and she is elderly. Being bald makes me look sick. I know im sick on the inside but being bald confirms that sickness to everyone who sees me. It’s hard to explain but I certainly understand where you are coming from. It’s only hair! I should just count my blessings and I certainly do but I still wonder if at some point the hair loss will lesson or if it will continue until I am bald AGAIN.

I’ve been on opioids since day 1. The extreme pain was the reason they found the breast cancer to bone metastases. I worry every single day about what the meds are doing to my body but I guess it’s no better or no worse than all of the other meds I’m putting in my body and all of the other strange things they are doing to my body to keep my alive. My NP told me there may come a time where the pain will subside when the cancer hardens in the bone but my oncologist says the pain is here to stay. It would be nice if they could come to an agreement on that but for now, I take the meds that keep me alive and free of pain.

Good luck with your petscan today. I hope you get good results or at least stable news.

[mariootsi in reply to Bettybuckets]

I wish you good scan results! We all know the anxiety . It's awful, but worry doesn't help us at all. I hope you can relax and enjoy your daughter. Snuggling helps everything!

[Bettybuckets in reply to mariootsi]

regarding my scan- I think I will post this as a warning to others… at her honestly I bet everyone is better at directions than I am.

Sadly I goofed. They asked me when I had last eaten and I mistakenly(because I am constantly so chemo brain foggy) told trh tech an hour later than I had actually eaten…. Which was too close to the scan… so it got cancelled and I have to reschedule. I tell this story hoping others will see and be more careful. So much energy goes into getting ready for a scan. You have to avoid carbs the night before and the day of… not eat for 4 hrs prior, I had to stay at my daughters the night before to be near the hospital. Plus we all have anxiety as we drive in to a big cancer center to get the scan. So I was so disappointed I am going to have to do it all over again.

[mariootsi in reply to Bettybuckets]

Omg! I'm so sorry! Also, I was told not to drink coffee or tea before a scan!

[Bettybuckets in reply to mariootsi]

I will try to remember for the redo next week. Thanks!

[CatLady2022 in reply to Bettybuckets]

hmm carbs never heard that one before. I have to fast (except water) 4 hours prior for cts. For petscans, nothing after midnight. Am I missing something about the ‘no carbs’?

[Bettybuckets in reply to CatLady2022]

I like you simple directions better. My printed materials say that my last meal the night before must be of protein and fat only no carbs- Morning same and no food 4hrs prior.

[Hazelgreen]

Hello,

I don't think you'll lose all your hair again.

I've been on Kisqali for about a year, and my hair is very definitely thinner and fly-away but I've not felt it necessary to buy a wig. There has been some very limited and very slow regrowth (I colour my hair so the regrowth is obvious) but I don't expect to ever have a full head of hair again at my age (77).

My guess is that Verzenio is somewhat milder a drug than Kisqali since you take it twice in a day. If that is the case, the side effects on average may also be milder...

Best of wishes, Cindy

[AvidBooklover]

I am on Ibrance and Faslodex and my hair thinned, but it is very thick so not obvious to most. It is growing again too. There is new growth of all lengths. Noticeable at my part, but I shake powder there to cover it up!

[bracelets1]

Hi! I am on Ibrance /Letrozole and have asked this question on this forum and on a facebook group I am in. It is just hair, but to me it is so sad that we are giving up another part of ourselves, isn't fighting for our life enough???? But to give my two cents, I have been on meds since March - my hair has thinned and is still thinning. I found all the answers I received to be very mixed. Some haven't experienced too much and/or it has stopped, some have thinned a lot to wear they are either wearing wigs or "toppers". I personally think everyone's body is different so there is no straight yes or no answer. So sweet of you to think about not upsetting your mom. I think that way too when it comes to my children. Lets hope it slows down for the both of us!!!

[25047]

I will add my experience being on LETROZOLE and I-Brance for 18 months, (first 6 months of i-BRANCE 125 then reduced dosage to 100mg because of side effects). i had beautiful hair but it became more like “very thin Phillis Diller Hair”, that for me, every time i liked in the mirror, made it a very constant and a very “public” display of my medical condition., and I really didn’t want to wear the wig i bought.

On a whim, as I have tried many topical things for hair loss, about 4-5 months ago I started taking Natures Bounty chewable Hair, Skin and Nails, I double the dosage to 4 chewable, figured what the hell, can’t hurt. Believe it or not, after several months, not right away, I noticed it has dramatically stopped my hair from falling out and stimulated new hair growth,, nothing like my “before” hair, but good enough to make me look and feel more “normal”. We deal with so much, with this disease, I feel any little thing that we can do to make us feel better, why not. ❤️ May the Force be with You

[Gerbo]

My oncologist suggested Rogaine which is Minoxidil 5%. I found this women's product at CVS Pharmacy, "Keranique Kit with Minoxidil 2% (includes: shampoo, conditioner, spray and solution. ) I decided to go with the lower dose since I read some reviews that if ou have allergies or sensitive scalp, it can leave burn marks. I'm happy with the results, my hair has reduce it's shedding within a week of using the product. I'm only on week 2 and now waiting to see how my hair grows back. Good luck Cat Lady!

[CatLady2022 in reply to Gerbo]

I had to use up my last appt with oncologist to get her to talk to my cousin, also a breast cancer survivor, because she couldn’t find anyone to take her case after she moved to Louisiana. I see my oncologist again Tuesday and will definitely be talking to her about my hair loss because it is getting worse and it’s irritating as hell! I have extremely thick hair so I wasn’t too worried at first but it’s starting to be noticeable to the people around me and I thought it would slow down at some point. No such luck!! I’m losing it faster it seems. I’ve ordered an attachment wig like thing to add to my hair but it hasn’t arrived yet. I’ve attended two funerals recently which means I’ve seen many relatives on both sides of family and they notice. If it’s noticeable to others, it’s not just my imagination. Thanks for the info!

[Gerbo in reply to CatLady2022]

Aloha CatLady.

My heart aches for your pain, as I'm way too familiar with the feelings- story you describe being around family, friends, funeral and having others see your changes . When I was diagnosed with stage 3 BC in 2018, loss my hair to chemo, mastectomy, radiation, medically pushed into menopause...I had a huge amount of hope and handled anything coming my way with strength and courage. I loved myself and was able to look pass my physical exterior aspects. However, once I received the news of the C metastasized now stage 4... I was devastated and fell apart. I loss myself for a few years with all a long list of side effects- being on targeted treatment. I gained 20 lbs, struggle to exercise consistently, my skin looks awful, fatigue kept me irritable, moody and in bed. Then quickly came the hair loss. I hated looking at myself in the mirror. I felt like a terrible mom to my now 6 year old daughter and my partner whom we barely can share an intimate moment due to the sexual disfunction that comes with menopause and my already deteriating self esteem. I'm still alive, however I hit rock bottom in another sense. A story too common ion this platform.

May 2022 was a turning point. I simply had enough. I was sick and tired of being sick and tired. It's been almost 9 months since I turned a corner and honestly still turning..... still working on my healing. I've learned one can not rush their healing as much as they try. There is no instant gratification, and if there is, it doesn't last. So step-by-step, trail & error and continuous research to pick up where my oncologist is simply not wire to do. I have explored what I can access in my mental and financial capacity, to see what works for my individual body.

My body has adjusted somewhat to Verzenio because instead of having diarrhea everyday for the first 3 months, I now have it once a week with the help of Immodian AD, but also a constant work to balance between diarrhea and constipation. My point here is BALANCE. There's not one solution. Our immune system should be cared for in many forms...

I seeked out and attracted a beautiful, knowledge, caring, compassionate nurse practitioner at the gynecologist office. Stacy not only listened to my long list of shortcomings, we had conversations and she ordered all sorts of blood work to unravel what areas I was deficient, which my oncologist didn't feel was necessary. His sole job was to keep the C at bay, however not much experience in aiding the quality of my life. Stacy helped me figure out what I can do to help me feel better daily.

Stacy recommended I take NutriLite supplement packs (Amway) which cost $150/month. This was not sustainable for the long haul, but it gave me a jump start for a few months to feeling better. Now I only spend a fraction on grass-fed organ supplement and broccoli sprout supplement (research and you'll find the multitudes of benefits). Supplements should not replace whole foods, they are only there to "supplement" so I enhanced my nutrition with a high fiber diet... 1-2 low carb organic smoothie (not juicing as it removes the fiber). One organic cup of coffee per day is actually beneficial to the liver. I cook more often and always try to shop for in season veggies and fruit to add variety of nutrition. If I have to eat out, I make sure its as clean as possible; organically source, pasture raised, no hormones, farm to table, etc.... Adding clean protein improved my red blood count, anemic, low iron, fatigue, etc.... Prior I was eating more plant base and less meat protein because I was going off what people told me to do. I removed GMO grains from my diet such as corn and wheat and added fermented foods. No seed oils which causes inflammation. Only use avocado, coconut and olive oil. Removed refined sugars, process food from packages, all chemical household cleaning and skin products. I replaced with non-toxic ones to help aid my liver and kidney functions. The liver needs all the help it can get since WE have to stay on conventional targeted treatment to stay alive. I was also low on Vitamin D like most people, so I now spend at least 30-60 minutes outside a day relaxing, walking, exercising.... I applied for SS benefit under the compassionate allowance program and also received financial assistance at the local YMCA gym, where I now have child care while I workout. The freedom of not working a stressful job is finally allowing me to put me first. Movement is high on the list. It was tough start, but I kept hitting the refresh button, showed up and eventually all takes care of itself. I would rate my exercise at the top of the list because my body, organs, mental health and spirit flow in alignment- becomes easier to make the right healthy choices in life for the mind, body and spirit. I turned off the news and negative social media because it does not serve my mental health. I did give in an asked my oncologist for for sleep aid though because of my insomnia. He did prescribed me Trazodone 50mg because its non-additive and doesn't make me feel groggy the next day. Sleep is another win.

My point here is, I stopped loosing hair. I'm spending time in a small town in Hawaii right now, country living for a few weeks. I'm using a cheap Suave shampoo because that's all that is accessible to me right now. I forgot to pack the Keranique shampoo and minoxidil 5%. No significant hair lost and by that I mean maybe 50 strands loss in my showers compared to 200-300+ in the past. I have loss 30-40% of hair and I can now see so many baby hairs continuing to growing back. There is not a one solution that fits all. Please seek out and find a way to get blood work done. Find out where your deficiencies are and that is the only way you'll truly know where to start. I guess this is also the part where we become our own advocate. I'm sorry for the long story, however I wanted to make my response sincere and honest from my heart. Keeping going, keep asking questions, keep finding your own truth. You got this!!! I love you, my sister. 🥰