FEMARA
Comments
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Yes 2Fun, we have discussed our similarities. I had DCIS close but not in the margins and the BS and RO decided that the rads should take care of it rather than going in again for another lumpectomy or total mastectomy. My MO did suggest trying Tamoxifen. He said there are drawbacks though with increased risk of blood clots and endometrial cancer. So, I opted to try letrozole again instead. The literature shows tamoxifen with the same side effects as all the other AIs.
Lula73, yes it was Solgar that I was going to purchase until I read about high concentrations of turmeric causing issues with IBS. And now I can't find where I read that! But I've also seen articles about it actually helping IBS, It's all so confusing. I'm glad to know you haven't had any issues. It also contains Polysorbate 80 as it's second ingredient....have not heard good things about that either. I'm still on the fence.
AND then I read this and really had to stop and think: Hormone-sensitive condition such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Turmeric contains a chemical called curcumin, which might act like the hormone estrogen.
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Nancy618, sorry that melatonin didn't help you. I hope someone will have other suggestions. Sleep is so important.
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nancy, since tamoxifen works differently on different tissue, my MO thinks I might not get the bone and muscle pain. I think it actually helps against bone loss. I could be totally wrong too. This is all such a blur for having a small, not a big deal, cancer.
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2Fun, I do remember my MO saying that tamoxifen helps against bone loss. I guess we'll revisit this when I see him in 2 weeks.
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Tamoxifen does help with bone loss however, Arimidex attacks the bones.
Diane
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I had terrible bone pain on Arimidex.
The last couple days I've had terrible thigh pain and knee pain. I've been using No Maggie magnesium lotion at night and I'm not sure yet if it's helping.
*NEW! MO' MAGGIE Magnesium Lotion - Even MORE PURE * HIGH Potency! 1500 mg/oz – 250 mg/tsp. * ORGANIC Opulent Oils & Shea Butter * HIGHEST Concentration Of Zechstein Magnesium In A Lotion! 8 fl. oz. https://www.amazon.com/dp/B01MFA39FE/ref=cm_sw_r_cp_apa_i_VW9xBb3B0A4C4
And these are the Vit E suppositories I've been using.
Carlson Key-E Suppositories, Vitamin E, Box of 24 https://www.amazon.com/dp/B003B3P4BS/ref=cm_sw_r_cp_apa_i_cT9xBbF8D9924
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Faith-840 CTCA is very much into naturopathic medicine. The main hospital is in Zion but I believe they opened up a smaller location in Chicago. I was a patient at Zion and now Philly. I see a ND every trip and have been put on various meds that help me quite a bit.
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Nancy i feel your frustration. Been there done that. Im anxious about SE too since im back on letrezole after a 4 year break. Last time i also needed antidepressants and it worked wonders to help me sleep for a while. Used benadryl for 15 yrs to sleep. I tried ambien but allergic. Melatonin now. I hear that it can take almost a week to start working for you. Also dr says you can take up to 20 mg a night. His old patients dont produce any naturally anymore. Maybe try it again.
My onc had me do accupuncture for sleep and the infusion nurses encourage the meditative breathing you already do. I think the magnesium helped alot too. Did i say all this already? Maybe an another topic.
I didnt realize till lately how often i wake cause im hot. Not literal hot flashes. Maybe night sweats or just warm flushes. I move out to the livingroom couch where its cooler and drop off there - quickly usually.what about timing of when you take the letrezole?. I seem to sleep better taking it in morning.
Im ready to add the coconut oil but not for sleep. 😉
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Gail Mary, I take letrozole in the morning. I also take magnesium and a whole ton of other supplements!
And I have to say that after using the Mo Maggie lotion at bedtime, I am no longer having leg cramps or hip pain at night. I think the pain probably kept me away. My sleep has been much better.
Wondering if the SEs will come back like there were before I took the 4 week vacation from the letrozole. Hope not! But only back on them for a week.
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Hi everyone! I have some bad neck/shoulder/joint arm pain at night that radiates down my arms and then my arms and hands fall asleep. It is hard to get comfortable at night. Should I be concerned about this? During the day, there is a dull ache but nothing like the discomfort at night.
I also, since starting the letrozole, can no longer use my right thumb (I am only 41 and a massage therapist so this is really making my work challenging!). My right thumb feels so painful if I try to use it to press on anything or put pressure on it. Has this happened to anyone else?
What do folks do for these kinds of painful issues?
Thanks so much
Brenda
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brenda, I am a PT/manual therapist, so my hand and foot pain is a concern for me too. I saw a hand therapist and he is having me do contrast baths, wear compression gloves, do some exercises and he gave me a soft thumb splint. I would think a OT/CHT could help you figure out how to modify your work . I am considering doing instrument assisted manual therapy and potentially making a built up handle.
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For a while my left hand felt like it would shatter if you touched it. So painful. Curcumin has really helped with it though and now it’s just a little stiff in the mornings. I flex it a few times and it’s good to go. You may want to give it a try. I use the Solgar brand due to its better absorption.
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thank you 2FUN and Lula!
2Fun I am going to talk to my MO about a referral for help with this
Lula - unfortunately curcumin is contradicted with Ibrance. It can be a wonderful antiinflammatory and I am so glad it is helping you!
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lula
How long after starting Femara did your hands start bothering you? Trying to decide whether I should start circumin before Femara or wait to see what SEs I have.
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I’d say within the first couple weeks to 1 month. It can’t hurt to get a jump on the curcumin. Definitely take one that stays in your system 24 hours (the Solgar brand does).
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Lula...thanks
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Ah yes, the pains....I had been off letrozole for a month because I didn't want to spend my vacation in pain. Went back on it 2 weeks ago and I thought that maybe I was going to be lucky this time and not have the pain like I had. Well, it started yesterday again. I can hardly get up from seated position, I'm so stiff and sore. I went to Yoga this morning and was once again unable to sit cross-legged because of the hip. The hot flashes are tremendous again, I mean wringing wet "I feel like I'm going to pass out" hot flashes! Hair is falling out in greater amounts again. And worst of all, my mood. I am back in the "I don't care" mode. I don't want to do anything or go anywhere. Besides yoga today, I did NOTHING but sit on the computer looking for recipes and adding them to an online recipe box.
Just a week ago, I was wanting to do things and go places...we went to Green Bay to watch the Packers practice and had a great time. We were talking about going to State Fair this week, and I just don't want to. Everything seems like a big chore. Even making meals.
I'm willing to try the Solgar curcumin, but that's not going to help my mood, which I consider the worst. Although it may have to do with not getting enough sleep either. Off the letrozole, I was getting 6.5 to 7.5 hours. On it, I'm down to 5.5 to 6.
Ugh! So, I see the MO on the 17th and will yet again discuss. I'm getting closer to stopping it altogether. Going to ask him if there's any harm in going on two weeks and off two weeks. Maybe it would help me stay on it at least to some degree. I've got another 3 years and 9 months!
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hi Nancy - it sounds like you are hypersensitive to AI drugs. What if you tried taking them every 36 or 48 hours, or a lower dose
Lanne
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nancy, sorry you are in pain again. My MO was saying that I may decide to chose no AI s. Especially since my risk factors are so low. That may be an option for you too. The pain is bad, but the depression is horrible.I have found that an hour of vigerous aquatic exercise every day this summer has kept my mood stable, but I really have to push myself to get off the computer and do other things. Let us know what your MO says. Hugs!
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Thanks 2Fun. I know I should walk every day, but I don't. Where we live it's all BIG hills and I just can't do them anymore. I do have a mile route I can do but it gets boring. There's a great walking trail about 4 miles away. I need to push myself to go.
I'm hypersensitive to most drugs I think. Can't take oxycodone. Anesthesia makes me violently ill for hours afterward except for propofol and whatever the anesthesiologist gave me for my second surgery.
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nancy, do you live near Holy Hill? Thats one of the only places in WI with hills!lol
Sorry if I am being bossy, but do you have a gym near you? Sometimes the treadmill or a bike is nice to do, esp. With weather and hills. Some places open up the pool and gym of the local school early morning for community folks to use. Heck, I'd even say walk part way up the hill!
I have been back to my 60 to 90 minutes of moderately vigerous exercise every day, and if I miss a day I really can tell my mental health suffers! Try to find things you can do! Also, there is a thread here called "post your daily exercise " join us! There are people just starting to exercise, and some that are ding marathons, but we all help keep each othergoing!
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Thanks for the suggestions on exercise. And yes I do live near Holy Hill. Can see it when I get to the top of a hill on my walk IF I make it up. Across the road from us is a ski hill. The view from our 2nd story is the middle of the snowboard run, so we are in the middle of a hilly area. Lots of hills and bluffs all over the state.
I used to do Zumba twice a week, but haven't been in a year due to my painful hips. I do yoga once, sometimes twice a week. I hate gyms. Could not even force myself to go. It has to be fun or I won't do it. I use the Wii Fit occasionally and ride a stationary bike. I just don't do any of it consistently.
I was actually in a good mood today. Maybe because we're dog sitting our daughter's dog. He's fun to have around.
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so nancy, you need to remember that most of wisconsin is pretty flat !!(at least where I grew up) DH said he could never live where it is so flat. Lol I know the ski hillyou are near. I love Holy Hill in the fall. I understand it's hard if you don't like to exercise....Maybe dog walking?
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2fun I think you're thinking of Illinois. Wisconsin is definitely not flat. Lots of glacial action created bluffs, moraines and hills. Check out a topographical map if you don't believe me. I don't think you know the ski hill here. It's a small private one. Not near Holy Hill.
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I grew up in wisconsin. Appleton. The north east part of the state is very flat. Pre-historic lake plain. I know a lot of the state is hilly, but compared to the "hills" in western NY, Wisconsin is relatively flat. Our ski hills are 3,000 ft vertical. Once you get toward holy hill and then to Madison the earth gets curvy, just not enough for my husbands liking!
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Well ladies I guess I'll be leaving you. I saw my oncologist today. We had a long talk and he convinced me to give Tamoxifen a try. There is an increased risk of endometrial cancer and blood clots, but he said there's actually less bone loss, less pain and a protection of the heart. AND the biggest benefit which sold me was a decrease in cholesterol. Mine was 289 today higher than its ever been. There are things I have a watch for, continue taking baby aspirin and get more exercise. I'm hoping this will be a better option for me, as I was ready to quit taking any meds.
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Nancy, I hope this switch takes your pain away and leaves you feeling like your old self. Good luck and keep us posted!
Lanne
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Nancy don't leave us!! My doctor has actually offered me tamoxifen also. I have been hesitant to try it because I have endometriosis very badly and was worried about the endometrial stuff. But I haven't been able to take my femara for over 8 weeks due to joint pain. I would really like to hear the follow up in a few weeks to see how the switch goes for you. My oncologist thinks that since I'm menopausal now my endometriosis should be at bay and maybe the tamoxifen won't offer up such a problem. Still scared to try the switch but might be more open to it if I hear it has worked well for others. Only a year-and-a-half into this 5 to 10-year journey. I am starting to lose hope that anything's going to be better.
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nancy618 please drop in and keep us posted
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Lanne, Patsy and gk,
Thank you. I will check in and let you know about my switch to tamoxifen. I am off of any meds for 2 weeks to get the letrozole out of my system. Then will start the new.
I am in terrible pain today, off letrozole for 2 days, so I know it takes some time.
My PCP got my lipid results and says my CVD risk is 10% and wants me on statins. I wrote him back and told him I have enough aches and pains, I'm not going to take statins and add more. Told him I'm going on tamoxifen and going to get serious about regular exercise.
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