Has anyone quit or reduced dosage of the hormonal therapy?
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Hi jhl, thank you for the information about the hormone serum levels.
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Whatjusthappened, Thank you for the update, I am in a very similar situation. I've been off Arimidex for 2 weeks and still in severe pain in arms, hands, feet, ankles, knees. I've been thinking it caused permanent damage. I've been on a roller coaster of pain and misery, on and off since June. Lupron, Aromasin, anastrozole, ovaries out, anastrozole again, arimidex with breaks in between. When I stopped aromasin, I felt better within 48 hours. I stopped anastrozole for ovary removal, and felt better pretty quick, but was only on it about 2 weeks every other day and my ovaries were probably producing some estrogen right before surgery. My arm pain did not start until after surgery, and before I re-started anastrozole. So I don't know if it's from the surgery or the drugs or both or from chemo. My arms started going numb at night in March, 3 weeks after stopping chemo. Got a little better, than worse again on the drugs. Exactly 1 week after ovary removal my arms hurt really bad from my fingers to my elbow and it felt like muscle and joint pain. It really freaked me out and hasn't gone away. I was supposed to have surgery (DIEP) this week, so stopped celebrex first, was in severe pain, stopped the arimidex, then they rescheduled my surgery to 1/29. So I am struggling with the decision to go back on for one week, or just stay off. Also, I got letrozole on Monday, so will try that. So might be stupid to be on that for one week and I would like to be pain free before starting another new drug. I'm so miserable with pain from anastrozole and arimidex. Aromasin gave me leg pain, headaches and severe insomnia even with my sleeping pills. I'm afraid letrozole will make my hair fall out and also give me the same arm and leg pain. I'm there with you, you are not alone.
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JRNJ, that is quite a roller coaster of medicines that you've been on. If I were in your shoes, I don't think I'd want to start a new medicine right before your surgery, when you don't know how it's going to affect you. It seems like it would be hard to know where your side effects are coming from. They called in four different prescriptions for me when I had my DIEP, so it is likely that you'll be on at least a couple of new meds for a while. Plus it would be nice to feel good going in for your surgery, as having a good mental attitude can help with healing. Of course, your situation is a little different than mine and you you may not be comfortable staying off AI's that long. Maybe you can ask your MO if he/she thinks it's safe to stay off your AI's for a bit?
This is the longest break I've taken from the arimidex. Previously the longest I'd gone off of it was about a month. This is the first time I've had the symptoms let up at all, so I think it takes quite a while to get it out of your system and for the inflammation to decrease. I do still have some aching in my hands and feet, but I also have arthritis so it may not have anything to do with the arimidex. I think it's possible that the reason some people get such bad side effects while others are minimal is that there are pre-existing conditions that are exacerbated by taking AI's. Things that were maybe so mild that we didn't even know we had them until we started taking an AI. It's just a theory, but I know I wasn't really bothered much with arthritis symptoms until going on the arimidex. I'm going to keep a diary when I go back on it this time, and if it gets really bad again I think I'll just have to choose quality of life over risk reduction.
Good luck with your upcoming surgery. Let us know how it goes.
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My MO says very little. He told me to take a 2 week break in July when switching meds. He told me to start off every other day. He knows I stopped for ovary removal and now for DIEP. I was there Monday, he agreed to letrozole, but rushed me out of his office because his daughter was lost and texting him. I told him my surgery was rescheduled and he was too distracted. When I asked him previously if every other day was ok, he just said "it's not standard of care". But he doesn't pressure me to take it every day. He couldn't decide whether to give me chemo and sent me for another opinion. When I had bmx/tissue expander placement, I was on Vicadin for 4 weeks and lots of antibiotics, which ended in infection and removal. I had a lot of pain, I think from sewing the TEs to the muscle. I just hope it's not worse. But I can handle temporary pain much better than chronic pain. What kind of arthritis do you have? My feet have hurt a lot since my pregnancies and lit up on bone scans. I'm sure I have osteoarthritis in my feet. But the hand/arm pain is new. They (MO and primary) tested me for RA, and said I don't have that. I made an appointment with a Rheumatologist, but can't get in til April. I have had some overall pain for years, but not this bad, and I assumed it was the statins, which it may be. It also got much worse after chemo. I had no body aches during chemo, and I realized I was on methotrexate which they give to people for arthritis. When it wore off my arms starting going numb and hurting really bad at night. My RO gave me dexamethasone during radiation/pre AIs and I felt great. Than I stopped it and pains came back. Then I started Lupron and AIs and much worse. Than ovaries out and worse again. I'm on Celebrex. It helps but not a miracle cure. So I agree, seems to be the cumulative effect of statins, chemo, AIs, lack of estrogen and possibly some form of autoimmune or arthritis. Maybe psoriatic? My mother had psoriasis on her head and my scalp has some light rashes. I just don't know where to turn, what Dr. will help me.
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JRNJ, it does sound like you've possibly got some cumulative damage going on. I saw a neurologist last year because they saw some stenosis in my cervical vertebrae and the neurologist did a nerve conduction study to see if that was the cause of my arm pain/numbness. It was normal, so he said the pain was likely caused by damage from chemo. I was frustrated because I felt he was just dismissing me, so I didn't bother to correct him and tell him I never had chemo. He did give me a prescription for gabapentin, which I take at night to calm things down and get some sleep. So I guess it's possible at least that you have nerve damage from chemo, and the AI's just make it worse. Your arm pain might also be related to your difficulties with the TE's. I think it's good that you are going to see a rheumatologist. That seems like a good next step for you. There are blood tests that he/she can order to see if you have some other kind of autoimmune disorder besides RA. Some autoimmune disorders can be tricky to diagnose.
My arthritis is osteoarthritis as far as I know. Degenerative changes have been noted on every MRI I've had done-cervical, thoracic, lumbar, hips. I've never had imaging that includes arms and legs, but I suspect I have it in my hands and feet and possibly one knee as well. My orthopedic doctor said I need a hip replacement, but he wants me to hold out as long as possible. He's afraid of the artificial hip wearing out because I'm younger than most people who need one. He says he can do orthoscopic surgery on the other hip, which I'll likely have done this year. I would like to see a rheumatologist, but my GP said it's very difficult to get in there and I'd likely only see the nurse practitioner. I might try anyway eventually. Right now I'm a little weary of seeing doctors and just want some calm for a while.
I didn't realize that statins can cause pain too. My cholesterol has shot up since starting arimidex from a normal level to very high. My MO said that arimidex can cause high cholesterol in some patients. Of course I would fall in that group of "some patients." He sent my last cholesterol results to my GP, who will likely try to put me on a statin. That is so frustrating!
Since your MO was so distracted during your last visit, I would try to contact him and ask your questions again. Does he have a patient portal? I seem to have better luck asking questions on the portal rather than trying to get someone to call me.
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I'm on anastrozole for about three months now. I had stage 1 cancer, invasive ductal- something-like-that. I had a lumpectomy - no lymph node involvement ... I really feel pretty lucky that way. Went through the 7 weeks of radiation. Now on the hormone therapy -- why? I don't feel like a 40% less chance of reoccurrence is a good enough reason to take this stuff. I did have some night sweats - those seem to have gone away. I deal with fatigue and occasional headaches. I had great fatigue with the radiation. It's not quite so bad now, but still affects me.
I feel like going off this medication. I don't want to spend the next 5-10 years tired all of the time. Does it get better with time?
Surgeon told me that this is a very slow-growing cancer - over years - and when found the tumor was 4 MILLIMETERS in size. Tiny! If it is that slow-growing, why could I not just have regular mammograms and skip the hormone therapy?
Is anyone here actually doing well on this med?
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Hi JRNJ and Whatjusthappened , My daughter has RA and one sign is that your hands {feet} will look different. They flare outward. Word of mouth is the best way she has found to find a good Rheumatologist. They are few in number. She was started on Methotrexate and hydroxychloroquine with prednisone for flare ups. That didn't work so now she is on her second biologic and gives herself an injection weekly. It is working. Hope you get some answers. Maybe some of your discomfort could be from surgical trauma to your muscles and nerves? You both have been through so much.
Tamoxifen is supposed to help cholesterol, but the lack of estrogen and being hypothyroid doesn't help. My doctor has me on pravastatin 20mg only on Mon/Wed/Fri. Muscle pain with statins are common and I have been tolerating this regime and she feels it is kinder to the liver. So far I'm staying around 200.
Thinking of you both and wishing you well.
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JoBee, there are a lot of people who do just fine on these medicines. There is a thread about it somewhere, though I can't remember what it's called. Some people have side effects initially and they go away after a bit. Hopefully this will be you. Since this is a thread about the decision on whether or not to stay on hormone inhibitors, you'll find that most people who post on this thread are not doing fine at all, so it may not paint a good picture for you.
Flashlight, thank you so much for your kind words. I think that trauma from surgery and radiation most definitely plays a part, especially in the arm pain. I've done a couple of stints of physical therapy that helped a bit, but the home exercises don't really help as much. I had LE and cording that has improved, but I don't think that some of that damage ever really goes away.
Thank you for your suggestions about finding a rheumatologist. I do know someone with RA, so I will ask her who she sees. I'm glad your daughter has found something that works for her, as I know that RA can be very difficult and painful to live with. I doubt that I have RA, but I do think there is something going on. I saw an endocrinologist years ago for my thyroid, and she told me having one autoimmune disorder greatly increases the probability that you will develop others.
Did you take the pravastatin every day and then drop it down or did you start out at three days a week? I've read that inflammation can cause your liver to make more cholesterol, and my last lipid panel was done a few months after my DIEP surgery, so I'm hoping that it will go down some after I've healed up a bit more. I'm also trying to lose some weight and watch my diet. I really don't want to go on anything else.
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Hey JoBee,
For many women, the early side effects do improve with time. For others, they are able to successfully address the side effects with complementary treatment, changing the med, or even changing the generic brand of the med.
You don't say your age so I guess you are a bit older and already menopausal, since you are on the AI.
The risk/benefit calculation is so personal.
For me, I had terrible side effects with tamoxifen, and really really questioned myself about it. On the one hand, according to the numbers my risk is pretty low. On the other hand, metastasized cancer is very very bad - I already watched my mother sicken and die from it. She died in her fifties and I really hope to live longer than she did. It turned out I was willing to go to quite a lot of trouble to try to find a drug I could live with and I was lucky to find one, but I would have drawn my line somewhere also.
Good luck!!
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I really struggled with these medications, physically and emotionally.
If we need these meds to reduce recurrence odds there needs to be better treatment available to cope with the pain issues.
I never felt like my dr's really understood how difficult it was dealing with the daily chronic pain I was dealing with.
This is a tough road and I wish us all the best.
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Whatjusthappened, My doctor at first wanted me to go on the pravastatin daily, but my numbers were not that high and my good cholesterol numbers were good. I was reluctant to go on it daily after reading the side effects and she agreed. My brother is on Lipitor and that med is harder on the liver and might raise blood sugar. Before your next lab try increasing your water intake the day before. Good luck.
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Has anyone had eye issues on Letrozole? I was just diagnosed with vitreous detachment after seeing flashing lights out of the side of my left eye. While there at the ophthalmologist's office, I also learned that I have mild cataracts (not surprising and probably from 8 months of Tamoxifen prior to starting Letrozole).
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JRNJ - wow, you are going through a lot. I would be reluctant to start a new drug just prior to surgery unless it was directly related to the surgery. You mentioned DIEP, and I think the recovery for that can be close to 3 or 4 months before you are "back to normal". I ended up not doing DIEP because I was not a good candidate. Ended up not doing any reconstruction. It gets so hard to separate what is causing what or makes things worse when so many things get added to the mix. I had almost no SEs (that I know about) from 5 years of Tamoxifen with BC #1. With BC #2 I was given generic anastrozole after chemo and bilateral, and noticed SEs immediately, especially in the hands. It took maybe 3 months of not taking any before my hands felt better, then I took tamoxifen. With BC # 3 on the other side, I take brand name Arimidex and Ibrance. Initially no SE from Arimidex, yeeh!!!! Lots of fatigue from Ibrance for several months. Maybe after 6+ months on Arimidex I started noticing stiffness in hands,and the locking finger on left returned. Hair thinning.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019, the nightmare continues. Noticed swelling in R-arm (opposite side). Ultra sound did not find clot but lots of fluid. Imaging and more imaging, biopsy 9/2019 found ER+ tumor R-axilla. PET scan, no metastasis. Start Ibrance and Arimidex.
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PrincessButtercup, vitreous gel detachment is not uncommon as we age. I was in my 50s when I had vitreous gel detachment in each eye (not at the same time). Mine was enhanced by my elongated eyeballs which are related to being extremely nearsighted. I have also developed a degree of nonprogressing macular degeneration which fortunately has not affected my central vision. Don't know your age, but if you are developing cataracts, you may well be a candidate for normally occurring detachment.
My ophthalmologist says he has never seen tamoxifen related vision changes yet it has been established that they can occur. I had already had cataract surgery before starting tamoxifen so cannot speak to that in relation to the drug.
Glad you did the right thing and saw your ophthalmologist when you saw the flashes of light! My DH had a detachment that caused a retinal tear. Fortunately his dr. was able to seal the tear the same afternoon with laser surgery so he had no loss of vision.
Keep on taking care of yourself!
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It's just about 3 weeks since my last Arimidex. The day before yesterday I took a dexamethasone and some CBD oil, and today I almost feel like my old self, with some manageable aches and pains, and hyperactive instead of tired. I think my body is making estrogen again. I might try letrozole tomorrow for a week. I did that with anastrozole in August after I switched from Aromosin. I took it for two weeks before stopping for ovary removal. Thanks for all the support!
Whatjusthappened, Statins cause muscle aches and stiffness, so I've had that for a few years, but nowhere near as bad as AIs. And since I started AIs, my statins aren't working that great. I'm on pravastatin, which is supposed to have less side effects than some of the others. My blood pressure has also gone up since AIs, but no one is paying attention because I started out with really low blood pressure. My MO is older and not part of a major cancer center, so no electronic communication, which is a bummer because I love to communicate via email. His affiliation has a portal, but he doesn't use it. I managed to get one of the staff's email when I was having issues getting things done correctly for insurance.
flashlight, the statins have not raised my A1C, they actually lowered it. I was borderline pre-diabetic. I read that reducing cholesterol is good for blood sugar. Regarding surgical trauma, after the first 5 weeks of horrible pain after bmx, I starting feeling much better, no body aches through chemo, not until 3 weeks after chemo the pain came back with a vengence. I think chemo is the culprit, combined with AI, even though MO says no of course. He said it's not neuropathy. The really wierd thing is, I didn't have this horrible arm pain up to my elbow, both arms, muscle and joint I think, until a week after ovary removal, before I started back on Arimidex. It's a puzzle? Thanks for the well wishes.
bluegirlred state, I tried brand name Arimidex, and felt a little less shaky, but the pain in my arms and legs was the same and continued to get worse and worse. So that experiment didn't work for me. I don't think I'll be out of commission that long from DIEP. I heard 5 to 8 weeks. I took Vicatin for 4 to 5 weeks after my bmx. Hopefully it doesn't go south, I've had some bad luck so far. I was originally not eligible for 2 just one. I have gained about 13 pounds since that first visit during chemo. I've been trying to gain more weight for the surgery, but the AIs have made it hard, they ruined my appetite, and sped up my gi system. But I've been eating a lot of junk, lol. Will be hard to stop and eat healthy after the surgery.
Tangaandchris, Ditto.
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I am taking letrozole for more than 1 year. Have manageable joint bone pain. For a while I have on and off aches around right pelvic area. Cannot say it is the bone or muscle. It worries more than bothers because I am thinking “ovaries" “bones". but I also think that letrozole could makes ovaries hbecause it is given I think for fertility treatment as well. Have you experienced light aches in pelvic area?
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JoBee...not telling you what to do. Just want you to know my story. I was 62 at the time of my diagnosis. You can see my stats. I had a BMX but no other treatment. I refused anti hormones from the start. I lost 30 pounds and try to exercise everyday. This combination has been shown to lower recurrence rates by 40 percent. I also take several supplements. Its been 6 years and so far so good!
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on letrozole recently I developed dry throat. Anyone experienced this
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I’m so sorry for what you’ve gone through. How are you doing
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I am doing ok. Some se such as bone joint aches., trigger finger. My dry throat i am experiencing for a month now. No one yet told me that it happened to them too so I am not sure that is letrozole se. I am w
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I had several se such as joint bone aches but the dry throat is around a month I have. It is worrying for me either bothering. Given that no one answered that they had this too I am worried that this is not letrozole se.
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I've had a dry throat, but it is the one of so many things I've experienced on this drug (letrozole), that I hadn't thought was related to it, but now you've got me thinking. I've had a lot of sinus trouble so have been doing regular nasal irrigation, and have been assuming that the dry throat that causes me to cough sometimes was due to the nasal saline solution going down the back of my throat. I've actually wondered if the sinus trouble (chronic post nasal drip and/or runny nose) was letrozole related. I've read that low estrogen levels can cause sinus problems, but I've never seen anything online or on these boards that show it as a significant problem that anyone else has.
It wouldn't surprise me at all if a dry throat is just another crappy side effect of this drug - there are so, so many! The drug dries just about every part of your body out, so it seems logical that your throat could be dry too, due to the letrozole. I too would be interested in hearing if anyone else has had this problem.
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I have sinus problems too, feels dry. I hope we will not discover more unpleasant surprises .i hope it gets better with time. Even though I appreciate this drugs are keeping the cancer at bay, we have to do our responsibilities at work at home. My husband does not understand that the se of this drag are really heavy and does not want hear a complaint or me worriiabout it(it stresses him). So I hope ithe sedoes not get worse than this.
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These drugs are very dehydrating and you need to increase your water intake. I know if I don't drink enough I also have sinus/throat issues.
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Even though my sinus trouble involves a runny nose, along with post nasal drip (which would suggest moisture), it seems to be the result of dried out sinuses. The dry heated air in my apartment and the cold winter air seem to really have a negative sinus drying effect since taking this drug. Pushing the fluids and the nasal irrigation (more fluid) seem to help some, and without all of that I think I would have major sinus infections on a regular basis, due to the dryness.
Margun - I'm sorry your husband is not able to deal with you having so many side effects. I'm single these days, but I too have to check myself with my family, friends, and co-workers when I start complaining about all the side effects. It can really just be too much for them all and I honestly don't know where the line is; when should I just "zip it" and stop "whining" vs, when should I reasonably expect more sympathy and understanding from them. I feel like I've become a whiny hypochondriac in many ways, but at the same time these side effects are real, chronic, exhausting, and debilitating. Yes, glad there is something to help keep us alive, and I plug away with this drug no matter how badly I'd like to quit it, but I'm just so "sick and tired of being sick and tired"!
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I also have the dry throat side effect. I attributed it to acid reflux which seems to be worse with letrozole than it was with Anastrozole. The other difference is more muscle aches, but less joint pain. The brain fog is about the same for me. Also, my hair thinned noticeably with the letrozole. I am considering going back to Anastrozole.0
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Peregrinelady, when you switch from one AI to the other, how much time in between are you recommended to take it off? When I complained to NP for letrozole, she said I need to stay out of medication for 6 weeks before I start a new one, anastrozole.
Margun, I understand how our loved ones don't want to hear our complaints. My DH hasn't said anything when I told him about SE of letrozole however, I could read his expression that he didn't like this conversation. Even when DH tries to understand, he can't. I feel that even the MO doesn't completely understand what we go through.
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Lilly, my oncologist recommended a month, but I was too scared to go off that long so I didn’t skip any days. However, I had twice taken a break of a month in the previous year due to heart problems, so that is why I didn’t want to do it again. It is supposed to be a washout period of the drug before you start a new one. I will probably take a break of 2 or 3 weeks when I do it, perhaps this summer so I will have a year of letrozole before I switch back. I am hoping to start with a new oncologist as my current one just seems more concerned about getting me out of the office as quickly as possible. Plus he only comes to my rural town once a month and they just canceled my appt. this month because they didn’t have enough appointments.0
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Checking in after 11 months on letrozole. My hair is thinning, and my eyes, throat, and skin are drying out. These are manageable, but the weight gain has been frustrating. And a nurse/physician's assistant just reminded me that fat cells also produce estrogen. I feel like the drug that is helping me fight off a recurrence is also contributing to the problem.
So with the weight gain and an increased A1C in mind, I bought a treadmill last month. My goal is walking one mile a day for now, which I've been doing most days. So far I've found that it does help with joint pain and energy, but on the other hand I've gained two pounds. Will keep this going because eventually I have to start losing weight!
Meanwhile, my oncologist has moved out of state, and I'm considering a new oncologist who is a DO rather than MD. Does anyone else have experience with a DO as oncologist?
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Princess Buttercup...I totally agree that anti hormone therapy can be contradictory. Most makes it difficult to loss weight and exercise. Both have been proven to lower recurrence rates by 40 percent. So it just doesn't make sense to me!
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