FEMARA
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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
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KarainLA, I have been on Letrozole for 3.5 months and the side effects have already changed. I had nausea, dizziness and a few hot flashes in my first couple of weeks, but they have since subsided. The same goes for insomnia. Now I am struggling with joint pains and the pain in my shoulders in particular wakes me up at night. Hair thinning is significant, too. I find that I feel better, at least as far as energy goes, if I take the pill at the same time of the day. When I am very late, or occasionaliy skip a dose because I forget, I seem to feel out of sorts. I hope the week off will help you!
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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.
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I’ve been on letrozole for only a year and have developed osteopenia and a lot of lower back pain. Petscan and mri shows degenerative issues. I do have a lot of stiffness in the morning but it’s my lower back pain that’s more consistent , the pain is manageable though
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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
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Annie, like this one:
Also, heat if it is muscle and ice if it ligament. I am using a hot water bottle to help release the tension. Warm bath or shower before bedtime helps as well.
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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!
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Thank you Jeremiah.
I have a question regarding blood tests. My LYMPHS came very high today. What does it mean? Can it be any SE of letrozole?
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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?
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Hi Betrayal,
You wrote, "My MO told me that if I finished 5 years on Femara that the beneficial effects of Femara would persist for another 5 years as protection from recurrence. I do like her and feel she has been the most honest of all my MD's but am having difficulty accepting this as the truth. I would love to believe this is true but I have not been able to find any evidence to support this."
Like GrandmaV, I had never heard that the benefits of Femara would persist after one stops taking it, but I did some research on that today. At this link, https://breastcancernow.org/information-support/fa... , I read the following (note the sentence in the middle that says there is evidence letrozole continues to reduce the risk of breast cancer coming back for many years after you stop taking it):
Stopping letrozole
Your treatment team will tell you when to stop taking letrozole. You won't need to stop taking it gradually.
Some people worry about stopping their treatment, but there's evidence that letrozole continues to reduce the risk of breast cancer coming back for many years after you stop taking it.
However, not taking the drug for the recommended time may increase the risk of your breast cancer coming back. If you're thinking about stopping taking letrozole for any reason, talk to your specialist first. Sometimes it may be possible to change to another hormone drug.
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I'm seven and a half years into taking Femara. My MO definitely wants me on it for 10 years because she said the risk of an ILC recurrence doesn't diminish over time. I don't know what she will suggest after 10 years are up.
I have osteoporosis now and various joints have deteriorated substantially since I started Femara, but if it keeps the cancer from recurring, I'll accept the messed up joints.
I was upset to see my cholesterol level was way up at my oncology visit a few days ago. My total cholesterol level was 264. Yikes! It's never been over 200. I suspect the Femara is causing my cholesterol to go up. I'm the right weight for my height, exercise every day, and have been a vegetarian for 35 years. My MO wanted me to go on a statin, but I said I wanted to try upping my exercise level and cutting out almost all dairy first.
marijen's comments from a few pages back give me hope that I can get my cholesterol down to a decent level via more exercise and diet improvements. Thank you for inspiring me, marijen!
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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?
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choochoobella: Posted a reply to you but it seems to have disappeared into the ether. I could no longer tolerate the damage letrozole was doing to my joints, tendons and back so I switched to the last AI available to me, exemestane. I had 2 thoracic and 2 cervical epidurals for excruciating back pain to no avail. Although dexascans showed continuing loss of bone I never met the osteopenia criteria and thus was regarded as "normal". Knees became an issue with a race to see which one would fail first, and the left won. I am looking at a replacement sometime in the near future. It was an evil drug for me and I had changes in cholesterol and blood sugar as well with elevations in both. The arthritis was crippling and tendon changes in hands and feet led to loss of some motor skills.
I am doing well on exemestane and now need to discuss with MO how much longer to remain on it due to finding of mixed BC on lumpectomies path report. Initial bx was IDC; lumpectomies showed C+DCIS, IDC and ILC. MO felt ILC was one to most likely recur and it is a late bloomer showing up after 7 years. So do I stop AI after 5 years next July or continue?
So for those who are doing well on femara, continue it; for those who are not, ask for another drug. Good luck to all.
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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
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Betrayal,
I'm so glad to read that you are doing well on exemestane! Are your cholesterol and blood sugar levels better on exemestane than they were on letrozole?
I agree: letrozole is really hard on the joints for some of us. I've had surgeries on my right shoulder and right knee since beginning letrozole. My left shoulder and left hip hurt all the time. I try to ignore all my joints as much as possible.
With you having had some ILC among your types of breast cancer, I'm guessing your MO will suggest continuing exemestane for a total of 10 years of therapy if you're still doing okay on it after 5 years.
My MO barely entertained my question about continuing letrozole after I had completed 7 years on it. She emphasized that the likelihood of ILC coming back years down the road is greater than the return of IDC, so she wanted me to stay on letrozole. I wonder if she'll even want me to stop it at 10 years. I don't know if there are studies being done on aromatase use beyond 10 years. I couldn't find any in Google searches.
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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.
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BevJen, I am so sorry you have to go through so much and live with SE of letrozole for so long to have BC returned. So unfair! Considering that AI can work up to 40% of the time, I always wonder if this group of 40% has been mostly successful by mastectomies, chemo, and radiation rather than AI medications. There is no blood test to check if there is any cancer cell left after all the procedures and heavy-duty treatments to see if AI really works or not. We just guess that our glass will be 40% full and not 60% empty.
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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.
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BevJen, do you mind sharing what symptoms did you have on your first recurrence and what treatments did you get at that time?
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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.
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Wow BevJen, thank you for sharing and for making us take other tests seriously. Us, ILC club will never be the same since this type can linger forever. I heard a 85 yr old woman who was treated and was NED from ILC for 25 years and now it showed up in her bones!
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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."
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Mine too. I believe it started from a very stressful situation in my life. Trying to live the same as you, taking it easy even though I have 3 teenagers at home (including my DH
). We, early stagers, are so grateful for all the wisdom and support you all are providing us. 
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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.
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Choochoobella,
Wow, you certainly have taken on a massive task with that cemetery. But good for you! It sounds like you have made it into a beautiful and reverent spot for all.
You asked what I do to de-stress. Destressing is a new thing for me. For years, I just took life as it was thrown at me. Probably not a good idea. Now I am trying out meditation several times a week. I like it a lot although I'm not great at it. I am also trying out different types of exercise. I retired in June, and am now trying to "find" myself and "find" activities that I like to pursue. I think that zoom classes are a great thing because you can sample a lot of things and see what you like/don't like. I also had a 90 minute consult with an integrative medicine doc that I found very helpful.
Question for you faslodex ladies: I will have to push back my faslodex shot about a week at the end of December/beginning of January. My MO said it was fine, since I've been on the drug since July 2019. Of course, I'm concerned that it will have some impact. Has anyone else ever done this? I'm just curious what your MO has to say.
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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.
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Hello beautiful Ladies! Yesterday, I had a 1 year anniversary since I started Letrozole. Last year, I went through an emotional rollercoaster of life-changing events. In 3 months' span with a cancer diagnosis, BMX, breast reconstruction, monthly lupron+letrozole. My body and mind won't be the same but I consider myself lucky I am still alive and I have met some awesome people in this chapter of my life. I am still trying to adjust to the "new me", learning to live with aches and pains and sometimes feeling emotionally drained and worried. I wish us all to many years of living with less SE.
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Cheers to that! I try to be grateful for that little pill we pop every day.
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I just started letrozole this week. Am starting with taking every other day since these pills cant be split because of enteric coating. Any idea how long it takes side effects to start showing up? So far I've done 2 doses, and nothing bad has happened. If you are going to get hot flashes do they start right away? Thank you for any input!
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My hot flashes started within 2 weeks or so. I have been on Letrozole since May 2020 and the joint pain didn't start until 6 weeks ago. My ankles, elbows, hands and thumbs ache. Not overwhellming but annoying. None of the aches and pains limit my activity but it takes a little longer to get going in the morning. The hot flashes are driving me crazy. Enough that i might ask my MO to change my meds. I see her next month but I am afraid that all the meds cause hot flashes so not sure if it is worth changing.
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quinnie...I have been on Letrozole since April 2020. My hot flashes have been brutal as well. The absolute worst of them is at night. I saw my MO for my regular appointment a few days ago. She put me on Neurontin (can't remember the other name of it) for the hot flashes. It has make a world of difference! I take it at night and it helps with sleep as well as the hot flashes. I have been dry and slept every night since starting it. It is wonderful not waking up in a pool of my own sweat. She offered 3 different meds that help with hot flashes. We chose this one because I am having horrible peripheral neuropathy in my hands (caused by Letrozole) and this drug helps with neuro pain. It has not helped my hands much. She also referred me to ortho to a hand specialist to get help with the increasing neuropathy. All of this to say, talk to your MO because there is help out there for the hot flashes. I also want to offer you some encouragement about your joint pain. Mine was horrible for several weeks. I start doing yoga and stretching daily and it helped a whole lot. After a few weeks I found the joint pain just went away and stayed away whether I did yoga or not. Hopefully yours will follow the same path. Hopefully you will also NOT develop peripheral neuropathy.
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