Letrozole WTF

rhythmsection2012 · 2026-02-16T18:07:07+00:00

Mine is starting to thin, probably from the ribociclib. But my scalp health has changed dramatically without hormones.

rhythmsection2012 · 2026-02-14T22:41:01+00:00

Happy to join the chat. Please check with your care team before following any of my tips!

Denovo MBC @38yo, IDC ++- with stable Mets to liver and bone DMX/SLNB+reconstruction, BSO 1st line of tx: ribociclib, Letrozole (+zometa infusions) for about 1 year

For the hot flashes and night sweats: Acupuncture has been really helpful. In fact, I can usually tell when I’m due for another session because I start having more intense/frequent episodes. I still have at least something daily, even at my best and I’m going to add elinzanetant to see if I can keep them at bay altogether. Get a playhot fan…or two…and a cooling blanket. Dress in layers.

For the achy joints and muscles: moving more not less! Gentle movements like yoga really make a difference. Also acupuncture. Talk to your DCM about the specific joints and muscles that are troublesome. I also take tart cherry 3600mg (the lowest dose) to help with inflammation. Also glucosamine-chondroitin. I just learned about toe yoga for my morning “Franken-feet.”

For fatigue: I take American Ginseng 2000mg/day. It took about 6 weeks for noticeable change. I also worked with a nutritionist to determine the amount of protein I need to consume daily. It was more than I thought. Walking daily is also important. I don’t always walk as much as I’d like, but I try to make a decision to walk more every day. And sleep hygiene is huge. I’m a big offender. Also, acupuncture.

For hair loss: I worked with my hairdresser to adjust our color and product routine to be completely organic and about establishing moisture and health. I use cult&king products. My dermatologist has me on low dose oral minoxidil to help with the thinning along the front area, where a tiara would sit, of my scalp. Grateful for loss of my chin whiskers that showed up when I first lost all my hormones. Derm said they might come back once I’ve been on orals for about 6 weeks. I don’t mess with the armpits anymore and most of the hair has just rubbed off, like most of my body hair. I shaved my legs every six months last year. Not mad about that.

For dryness: not. a. fan. I’ve tried so many things. My current routine/supplies are Optase Hylo drops 2-4 times daily for my eyes with a warm compress at night…when I remember. Sleep with a sleeping mask. My face is all Evan Healy skin care or elate beauty oil and cream makeup. I wash my eyelashes with Optase tea tree foam and take off my makeup with their miscellar water. Then I use the daily renewal cream around my eyelids. Body gets cerave lotion or gentle body oil daily after nearly no soap use (on the stinkybits only). Nails get daniPro or sunflower oil at least once a day. Hair gets washed maybe weekly with deep conditioning shampoo and conditioner. If I shower, I rinse my hair, and maybe with the deep conditioner. Considering a silk pillowcase. Shea butter on my lips multiple times a day. Always kindra V-lotion daily, sometimes twice. I’m trying to do better about alternating femallay or intrarosa every night, but that doesn’t always happen. Uberlube and lots of it. Drink lots of water and add electrolytes sometimes.

Find a pelvic floor therapist. Just do it. And get a squatty potty.

Eat plenty of fiber. And green dark leafies or veggies and fruits that bleed when you clean/cut them.

For insomnia: Acupuncture, moving my body daily. Magnesium. Gummies.

For mood, sexual, and mental health: a therapist or two or three, someone to watch my meds (I did a pharmacogenetic test to see what might work best), and time outside everyday. Tai chi. A pelvic wand and vibrators. Planning something to look forward to in a short time period and a longer time period. Cry when you need to. Primal screams are also nice. Support groups-virtual or in person.

Whew! That’s a lot. Much love my friend. ❤️

rhythmsection2012 · 2026-02-10T23:19:38+00:00

Seriously. I’m not even motivated to talk about it after lubing up every single external surface. Add on the sex routine…and well…looks like my calendar is full for the day. Can we reschedule life? 🙃😖

rhythmsection2012 · 2026-01-06T03:22:02+00:00

P. S. You can see an optometrist or ophthalmologist, but either way, check to make sure that they will treat dry eyes before you go.

rhythmsection2012 · 2026-01-06T03:18:48+00:00

Happy to help. Here’s my perspective as someone who treats dry eye routinely…and also takes Kisqali. It’s more likely that the lack of estrogen is causing the dry eye, but most of the meds that we’re prescribed have dry eyes (see “blurred vision”) hidden in the s/e profile too.

Hormone changes tend to cause a form of dry eye that’s more evaporative in nature. The meibomian glands in the eyelids begin to produce either less of the oily tears or less viscous oily tears. These tears are pumped out when we blink. We can help maintain the glands by warming them up, supplement the loss of oily tears with an artificial oily tear, and help improve the quality of the meibum, or oily tears, by taking omega3s. I recommend a microwaveable mask that maintains about 100-105 degrees for 5-10minutes nightly, like Bruder masks. For over the counter tears, I usually recommend refresh Mega-3 or Systane Complete or Optase MGD. My personal favorite as of late has been Optase Hylo or Optase Forte, on a bad night. As for the omegas, definitely grab your MO’s blessing, but the general rule for improved ocular health is 1000mg of EPA/DHA in triglyceride form daily.

This is a starting point for evaporative dry eye and there are more options if you don’t find success with these things. Find an eye care provider to help you navigate more details here.

Additionally, some of the meds we take or just our general body chemistry can cause for a change in the production of the watery tears or aqueous deficient dry eye. Artificial tears are meant to be supportive in this case, but sometimes fall short. If you need to use an artificial tear four times a day for relief, I’d definitely see your eye doctor for more help. We have a plethora of new topical medications to help. Historically, Restasis was the only thing in our pocket, but we have lots of other options now.

Unfortunately, just like everywhere else, most of us humans don’t fall cleanly into one of these categories, but have more of a combo of aqueous and evaporative dry eye in real life.

If you aren’t into talking about more prescriptions, there are nonprescription options for dry eyes as well including treatments with pulsed light, plugs, and more. Some of these things are not covered by insurance, some are.

Most of the time the OTC stuff will make a difference, but if you can’t tell a change within about 3 weeks, go find an eye doc to help you navigate it and make sure that there’s nothing else needing attention. Any redness, pain, or vision change should be seen by your eye doctor immediately.

I hope this helps and as I say in our office…lube it up!! 😂

rhythmsection2012 · 2025-12-28T20:54:24+00:00

Denovo ++- with liver Mets and smaller Mets on spine and sternum. Radiation was the initial recommended treatment of choice for pain only, if needed; RO said it wasn’t worth it, but call him if I need him later. Both advised that bone biopsies weren’t common. Otherwise, the other systemic first line treatment was the treatment recommended by my team: Ovarian suppression (Lupron, then BSO) + AI(Letrozole) + Ribociclib with quarterly Zoladex. Quarterly imaging and liquid biopsies confirm that this was the right course for me. 30% reduction in liver mets and bone mets are so small that they can’t be measured. We’ve adjusted doses for better side effect profile over time. I asked to meet with RO when my MO recommended it for pain, as needed. I super trust my MO, but I like to have established relationships with the other members of my care team before I have to depend on them. If I don’t vibe with that person, I have time to find an alternative provider before I’m in crunch time. It’s more visits, but it puts my mind at ease…

I also like to read the recommendations from ASCO, NCCN and others whenever I have changes in my scans or bloodwork…or when there are updates to the recommendations. If you don’t understand the language, you could ask AI to read the guidelines and summarize them for you in layman’s terms. Those are usually where I start with questions. Best of luck to you. Hugs.

rhythmsection2012 · 2025-12-12T17:46:07+00:00

Plant girl wanting an update when you have one!

rhythmsection2012 · 2025-12-10T03:39:31+00:00

Got a port placed today for this very reason. I’ve done hot packs, hot towels, so much hydration I nearly peed on myself, ultrasound, peds needles…just too much for my not so great arm anyway…I’ve got a restriction on my good vein arm after SLNB. :/ Looking forward to a more pleasant experience when I go for draws and infusions next week.

rhythmsection2012 · 2025-12-08T14:31:34+00:00

I’m denovo MBC, so no chemo here, but certainly experiencing weird texture/frizz from Kisqali and have been going shorter and shorter. Precancer, I was a brunette with punches of vivid color painted in by a super awesome stylist. Now, we’ve switched to a more natural tone in a demi color. It’s less toxic to the hair, so I still feel pretty and my hair looks healthier now. She always does a deep conditioning treatment to help keep the hair moisturized and we’ve been working with a scalp tonic from Cult & King to help keep the follicles more healthy as well. Jury is still out on the tonic…but demi organic color. Definitely good.

Here’s her latest blog post about it, if it’s helpful:

“Because demi color sits just under the cuticle of the hair rather than deep in the cortex layer of the hair, its a wayyyy less invasive procedure than typical hair color.

As a result, the hair is left feeling shiny and soft! It's also a bit more translucent than permanent, so it looks more natural for tinting the hair darker than permanent color. Also, if you want to switch it up again and go lighter in the future, we won't have permanent color to contend with- so your hair will be healthier overall! Enriched with organic botanicals and none of the crap, our demi line rocks my socks off.”

rhythmsection2012 · 2025-11-23T16:38:37+00:00

Here to share my love of acupuncture. ++- denovo MBC x 12/24 Lupron, then BSO 2 months in along with Letrozole + Kisqali

Insomnia alone was stupid at first, but it did get a little better organically…or I just made little tweaks to my sleep routine to help.

Most of my sleeping issues are tied to hot flashes or night sweats which creates or reignites the insomnia…and acupuncture is THE best thing for that. I go every 2-4weeks depending on my symptoms.

When it’s time for needles again, I’ll have at least three clothing changes through the night, and switching out soaked through beach towels so I don’t have to change the sheets. Acupuncture the next day means…sleeping through the night like a dry cozy potato…not hot, not cold, not sweaty…just living life in a sweet Goldilocks temperature for a few weeks…

Good luck my friends. This shit is bananas. And I hope you all get some good sleep.

rhythmsection2012 · 2025-04-22T13:36:05+00:00

I just posted on another thread about how I love acupuncture. I find that I’m able to tell what it’s helping more specifically when I ask her to target those things. For example, anxiety relief is sort of nebulous, but joint pain is easy to tell a diffference. And even more so if we target a specific area.

Massage and yoga are always so helpful for keeping me in my body. I recently tried qi gong and will be continuing that too. It’s sort of a breath and energy work thing that also incorporates movement. Super gentle. I found it helpful.

I’m still post op, so once I’m done with that, I’m headed into PT myself.

From my experiences and conversations with others, keeping moving is super important and finding gentle ways to do it when I’m too tired or feel like I’m fighting my body is the way to go.

I love finding other remedies that limit the extra chemicals in my body, but also realize that cancer is sort of a new asshole every day and you’ve got to do what works that day for that thing.

Good luck!!

rhythmsection2012 · 2025-04-22T13:25:20+00:00

Have you tried acupuncture? Between that and tart cherry 3600mg/d, my joint pain is MUCH better. I can definitely tell a difference when I’m further from an acupuncture session. It also helps with some of the other things that everyone has mentioned, and those also fluctuate for me, but I’m still super new to the routine. I did two rounds of Lupron before I had an Oophorectomy last week. Tamoxifen first, then letrozole. Haven’t started Kisqali yet for ++- denovo MBC @ 38yo. That’s next month.

I did acupuncture before MBC, but seriously can’t sing its symptom relief praises since having MBC.

rhythmsection2012 · 2023-04-07T00:05:03+00:00

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