FEMARA

I was told by my doctor that fatigue is a typical complaint from letrozole users. I do feel my energy goes up and down during the day and I am not exercising as much as before. I guess it is something we will live with.

Annie, my hip ( and neck, elbow, knee) hurts as well and I went for a massage to someone who is specialized with cancer patients. She checked my hip and neck and said there is no problem with the joints but the muscles. She was a magic masseuse. Also, she recommended using a tennis ball and to use it for a massage at home. Annie, give it a try with a massage and you may feel better. Once we have the breast surgery, our body posture changes and some muscles get more tension than others. For me is difficult to figure out if it is joint pain or muscles around it.

KaraInLa, what time of the day do you take letrozole? One of our sisters recommended to take it at night time before bed and that's what I have been doing. At least I don't feel most of the side effects that come within the first few hours because I am sleeping. Just a thought, if you can move it to bedtime and see if you won't feel nauseous. Others may have other ideas or similar experiences. My MO told me it takes 4-5 months for the body to get used to letrozole. I think it takes longer than that. Maybe your body is recovering and having an hour of exercise + work every day may be too much. I hope it will get better soon.

lilyIsHere and JLBInPDX, thanks for sharing. I spoke with my NP this morning and they want me just to stop and for us to reassess in a week, so now I wait to see what their advice will be on next steps

Mountainlover............I have been on it since late April (with 6 weeks off during radiation per my RO's order) and I have noticed the same thing with changing side effects. The hot flashes are the same unfortunately, man I hope they let up soon. I went through (and posted about it on the board) a few weeks of almost delibitating joint and general pain and stiffness. Yoga helped a ton. Now those SE seem to be gone mostly, as long as I work out and keep moving. The dizziness seems to come and go but doesn't happen often and I hope it goes away for good. I am consistent in taking it every morning. It is interesting that you are finding the same thing.

Is anyone finding your SE's come and go? I had some dizziness at first, it went away and now it seems to be back - not as bad as it was at first, but still troubling.

Lilly - a massage would be wonderful but I can't risk it with Covid. I have asthma so we don't go out much. I've never heard of using a tennis ball - can you tell me how this works?

Annie

Hello, everyone! My onco recommended Relizen (very affordable if you buy direct from them, as a subscription, and have them ship every other month) and then I take only one tablet instead of the recommended two per day, and it works just fine.

BOTTOM LINE - Relizen has almost eliminated all of my hot flashes AND joint pain! I take this along with Emerald Lab's brand of a vitamin B complex, and ladies, it's like I've found the holy grail and my life is back on track. I was struggling with sleeplessness, irritability, weight gain and depression and physical pain every day back in my knees.

There is another product that I think CVS sells that is similar or a knock off of Relizen but I haven't tried that one yet. Anyway, I hope some of you find relief with the Relizen and vitamin B combo, and that your onco is cool with it like my onco is!

Blessings!

Hi Tewks,

I'd be more suspicious that your dry skin, itchy back and fatigue are related to your thyroid. You wrote that your TSH is up. Do you know exactly what your TSH level is? Normal TSH values are 0.5 to 5.0 mIU/L.The higher your TSH level, the more hypothyroid you are. Are you on a thyroid hormone supplement now?

I was told from MO that the effects of letrozole continue after stopping it. If you take letrozole for 5 years, the benefits will continue for another 5 years. However, I was told to continue letrozole longer since my diagnose is ILC. Next week I will be 1 year since I started letrozole and I haven't been checked once for cholesterol. Does MO request a cholesterol check or should be a PCP routine check? My MO only checks how the liver and kidneys are handling letrozole and nothing else.

What type of tests does your MO request?

LillyisHere,

I hadn't had my cholesterol checked since 2013, but that test wasn't ordered by my MO. It was ordered by a family practitioner. I don't see any other doctors other than my MO these days.

I was the one who asked my MO to test my cholesterol on my last oncology visit. I had been noticing yellow deposits all around my eyes (xanthelasma) over the past couple of years. My uncle had them too and he had a cholesterol level of over 300.

I think our oncologists should periodically check our cholesterol levels when we are on aromatase inhibitors since studies have shown aromatase inhibitors frequently cause a significant increase in cholesterol levels. You can just ask your MO to test your cholesterol on your next visit. Make sure to fast that whole day. When your MO runs your routine CBC and comprehensive metabolic tests, she can ask that a lipid profile be done on the blood draw that you had done for the CBC and metabolic tests. You don't need a separate blood draw.

I had my blood drawn for a CBC and comprehensive metabolic test 15 minutes before I saw my oncologist and I asked her to add the lipid panel to the tests that were being done on the blood that was already drawn.

Here are a couple of links to studies that show significant cholesterol increases with the advent of aromatase therapy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC23616...:~:text=However%2C%20when%20aromatase%20inhibitors%20are,lipid%20lowering%20treatment%20if%20required

http://ar.iiarjournals.org/content/29/8/3337.full

Choochoobella,

I was on letrozole from 2006 (my first recurrence, after having been on tamoxifen for 2 years) until 2019. After 10 years, my oncologist said that there had been one study that supported continuation of letrozole beyond that point, and that's why I continued on the drug. Sadly, it didn't hold me as I recurred in 2019 for a second time.

LillyisHere,

Well, good theory about the 40%, but with my original diagnosis in 2003, I had bilateral mastectomies followed by TAC chemo, followed by a full course of radiation. Then I went on tamoxifen, during which I had my first recurrence. Then I went on letrozole (2006 -- 2019). Letrozole did give me a very long disease-free run, though, and for that I'm grateful.

LillyIsHere,

I had no symptoms on my first recurrence. (I actually had no symptoms, really, on my second recurrence -- just rising tumor markers.)

In 2006, I went to a routine gynecological exam and had a Pap test. My obgyn remarked that there was this little polyp on my cervix. She said -- Oh, I'll just it out for biopsy. Lo and behold, it came back with lobular breast cancer cells at the very tip. So it was a single site metastasis. I was sent to a gynecological oncologist, who said, after staging scans that showed nothing, that we should take out my uterus and my ovaries. There was no further spread other than that spot on my cervix. Then I went on letrozole.

ILC is VERY sneaky. On the other hand, it is usually pretty slow growing. So there's that. But that doesn't mean that someone with ILC can just ignore stuff.

For me, each of my recurrences has occurred after a particularly stressful time in my life. So right now, I'm just trying to "live" with my cancer -- or maybe the word is "co-exist."

BevJen,

Happy belated Thanksgiving. (Happy Thanksgiving to you too, LillyIsHere!)

BevJen, I'm grateful you are here, but I'm so sorry for all you have been through for so many years. The cervical metastasis may actually have been a gift in terms of extending your life by decreasing your estrogen production via the hysterectomy.

It is so much easier to tell someone to reduce their stress level than it is to actually do it. So much is out of a person's control in terms of what life hands you. It takes a lot of fortitude to determine how you will handle what you face and what you decide to say yes and no to in life.

What do you do to relax?

I have been an anxious person for most of my life, probably because my mom was very anxious and I learned to be that way (she spent most of her time "prophylactically worrying," not that it changed anything) and because there was a lot of stress due to health issues my brother and father had when I was growing up. My brother was diagnosed with leukemia when he was 13 and he lived for nearly 4 years, but it was nearly 4 years of immense battles with constant chemotherapy and radiation and all their side effects. My dad had 3 bouts of malignant melanoma, but ended up dying young of a heart attack. I've struggled mightily with depression on and off ever since my teens.

Over time, to relax, I've chosen to spend a lot of my waking hours outdoors. I garden almost every day, as long as the temperature is above freezing. It gets me out of my own head. I've been the volunteer caretaker of a formerly abandoned 7 acre cemetery for 35 years now. It's only a block away from my home. Working there became my therapy starting when I was 28 years old. I walked by the cemetery shortly after my husband and I bought our house. A woman was sitting on the ground next to 300 daffodil bulbs looking overwhelmed. I asked if I could help her plant the daffodils and she talked me into taking over the care of the cemetery in the 3 hours it took us to plant all the bulbs.

The cemetery had been devastated by vandalism at that time. The grass hadn't been cut in years. I would plod over there after work every day and try to make a dent in something. I spent all the daylight hours working there on the weekends. In the early years, I mowed the grass myself. It took me two weeks to finish a mowing and it would be time to start again. I was working full-time, but I didn't really come alive until I got home from work and went through the gates of the cemetery. I began fund-raising and eventually raised enough money to pay for mowing. That allowed me to apply for grants and do other fund-raising so I could start planting trees there. The balm of being there was listening to the birds and watching the bees and butterflies on the flowers that I planted, little by little.

It's taken over 3 decades, but the cemetery is a nationally recognized arboretum now. I've planted about 300 trees and now have a total of 5 pollinator gardens there. I quit working full-time almost 7 years ago and the cemetery has been a full-time job for me ever since and believe me, my house looks like it! Years ago, I gave up on trying to keep an immaculate house. Now, I just nod at a dust ball when it blows by.

We live near an apartment where people have left their cats behind. I'm not really a cat person, but we've taken in 17 cats from there over the years we've lived here in addition to the dogs we've adopted. I still have 6 cats. With that many animals, I realized I'd have to adjust my expectations of what constitutes a clean house. It doesn't hurt that I've been on anti-depressants for 25 years now.

I almost never cook, but my husband thankfully decided to take it up about a year ago. He likes it. I can spend 8 hours weeding a garden, but after 10 minutes of chopping vegetables, I lose my will to live.

I used to be much more of a people-pleaser than I am now. I'm naturally introverted, so socializing with a wide variety of people was mostly stressful to me. Even pre-Covid, I was rarely willing to go to parties and other get-togethers. I have a sister, a daughter, and a few friends that I would die for and I feel grateful beyond measure for them. I have circumscribed my life dramatically over the years and that has paid off in reducing my anxiety and depression.

I realize what relaxes a person is different for everyone, but I think figuring out what does and indulging that (as much as is practical) is key to making the best of the time we have here.

All the best to everyone from my very little corner of the world.

BevJen,

Way to go in finding out destressing activities! So many people find meditation helpful. I tried it for a few months years ago, but I wasn't committed enough to become adept at it. People who find meditation very helpful always say you have to commit to it for a while before you become good at it. I remember reading that meditation actually changes the brain in a beneficial way: parts of the brain that help you concentrate and remember and focus become more dense while areas of the brain affiliated with stress and anxiety become less dense.

Zoom classes are awesome, especially during Covid. My daughter subscribes to one service, but also does regular free "challenges" on youtube offered by an Australian woman named Chloe Ting.

I hope someone jumps in here on your Faslodex question.

Cheers to that! I try to be grateful for that little pill we pop every day.