Break from Letrozole for 2 1/2 months
I will be going back on letrazole after a break after 2 1/2 months due to sudden onset of constant palpitations and one short episode of a/fib. I had to get a cardiac work up and getting that done has taken time. Getting in to see a cardiologist, wearing a zio patch for two weeks, waiting for the results and then scheduled for an echocardiogram and stress test. I saw my oncologist last week and she wants me to restart the letrazole although my echocardiogram isn’t until tomorrow. I was going to wait until after that test but will restart the letrazole this evening. I have been getting very nervous being off the letrozole for so long. I have been having pain in the right side of my neck going down to the collarbone for about three weeks now. It does hurt more when I move the area so hopefully it’s some kind of strain but I don’t know from what. My bloodwork was all good from my visit with the oncologist but I know that doesn’t mean much. I always worry about the cancer. Has anyone been off the AIs for that long with no problems?
thank you in advance for any insights you can give me.
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I should add that since after radiation in June 2023 I have been on and off three different AIs and not for significant amounts of time. Which adds to my concern.
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I’ll share my experience with breaks from Letrozole and the other AI. It isn’t quite the same but might help. I had to take a break before and after my DIEP and revision surgeries per surgeon’s orders. I was off about 5-6 weeks total for DIEP and another 4 weeks for revision. That was in about a 6 month span.
My MO also gave me a few more breaks (about 2 weeks at a time) during my 5 years. I finished my 5 yrs in March of this year.
At this point, you can’t go back and change what happened. You needed to take a break. It’s hard to do but try to focus on going forward now with the Letrozole. The best advice I can give (that helped me) is to try to stay active. Exercise helped me mentally (gotta love those endorphins) and physically to combat joint pain.
Be kind to yourself. Good luck with starting back on Letrozole!0 -
dimples90,
thank you for your reply to my post. It really was very helpful and alleviating some of the concerns I have. I did start back on the letrozole the other day and what do you know? My palpitations came back in two days so I stopped and called the oncologists office and asked the nurse to speak to the MO and discuss putting me on another AI. You’re correct in that we just have to look forward and stay active. Hopefully, when I speak to the office on Monday, they’ll have an alternative for me to try. I was on the Anastrozole first, then the exemastene and then the letrazole. The exemastene gave me a ton of side effects so I think I’d like to go back and try the anastrozole again. The anastrozole just made me really fatigued , but perhaps if I give it another try at least maybe I won’t have the palpitations. We’ll see what the MO says. Thanks again for your input, it really did help me look at this in a more rational way.
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Sorry to hear about the return of the palpitations, Sonya16!
I did try all 3 of the AIs during my 5 years. Started with Letrozole and made my way back to it for the final year. It’s so interesting how we can experience different side effects on the same drug. Anastrazole caused stomach cramps and diarrhea for me. I never even thought that it could be causing my symptoms so I didn’t tell my MO. Realized it was Anastrazole when I took a vacation break.
Good luck with your next aromatase inhibitor. Will be thinking of you and wishing you the best 💖0 -
I would like to know if anyone has had a similar experience to the symptoms I am presently encountering. As noted in my prior post, I restarted the letrazole In the beginning of June, and after two weeks, I started to experience extreme fatigue and headaches. I must admit that I took it upon myself to stop for a week to see if anything would improve. I did not call my MO’s office because I only get to speak to the male nurse who just tells me to keep taking it and never listens to what I have to say. So after a week I did call the MO office and of course he did yell at me. Symptoms did not improve upon stopping for a week so I restarted again and have been taking it since. Still not feeling well. I went to a new primary Doctor who did a fairly comprehensive blood work up. All the basic stuff looks fine, including my thyroid. However, at the doctors visit, my blood pressure was very high at 150/90. This was odd because my blood pressure is always very low average of 120/70. I’m taking it at home now and it’s even higher I still have terrible headaches, neck pain, extreme fatigue, migrating joint pain, pulstile tinnitus and the weirdest thing is sweaty palms in the morning, every morning. I did contact the primary’s office and she wants to do an MRI of the brain. Anyone ever had symptoms like this? Could they be connected to the letrozole? I would appreciate any thoughts on this. Thank you.
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Hi Sonya16, I’m sorry your problems have continued. Get the head MRI to see if the pulsatile tinnitus and neck pain are caused by issues with the blood vessels in your neck. Your symptoms might have nothing to do with the letrozole. If they can find the cause they can probably do something to help. Fortunately my pulsatile tinnitus stopped when a third bp med was added to the mix. I have read that pulsatile tinnitus can occur at menopause so if no physical abnormality is found the drop in estrogen from the AIs might be relevant. I hope you can find a solution since it is such an annoying symptom.
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Hi Maggie15,
thank you for responding. How have you been doing?
You are correct, none of this may have anything to do with the Letrozole. All of these symptoms converged at the same time so it is somewhat confusing. It will just be a process of elimination with the tests to be done. And yes, the pulsatile tinnitus is very annoying and the other symptoms are just frustrating.
I hope all has been well with you.0 -
sonya16, I wanted you to know how badly I feel that your doctor yelled at you. Have you considered finding another MO who is more understanding and compassionate? Best of luck to you getting to the bottom of your current symptoms. I wish you all the best.
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saleen19, thank you so much for your reply. I am definitely going to look into finding a new MO. The problem is that my MO is ok, perhaps a little overwhelmed and not enough time. When I have called between my appointments , I can never speak to the dr, I always have to speak to the male nurse and I get nowhere. I really feel that if the MO office had just listened to me the past year and a half and worked with me in finding a medication that I could tolerate then perhaps I wouldn’t have been on and off it so much. Now that I have all these symptoms that came on suddenly in addition to today my temple area on my face has started to twitch constantly I am getting a little worried about brain mets as I don’t think I’ve been on the AIs long enough to prevent spread. This has always worried me and ive mentioned that and always been told to just keep taking it even though I’ve asked for a different med. I just have to hope that the brain mri will be ok. The MO office always made me feel like if something happened with cancer spread it would be my fault No one has said that but it’s how it makes me feel, if that makes any sense.
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Saleen19 I also want to thank you for your good wishes!
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sonya16,
You mentioned wanting to go back and try anastrazole again in a previous post. Was planning on asking your MO at your last appt. Do you mind sharing why your MO won’t let you do that? Just wondering why she wants you to stay on the Letrozole.
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hi dimples90,
I have brought up the anastrozole several times both with the nurse, the PA and the doctor and for some reason they want me to stick with the letrozole. I demanded an appointment with someone and I have one tomorrow with the PA. Of course I don’t know if these symptoms are from the letrozole and I’m really concerned that it is brain Mets because I looked it up and everything I’m feeling is a sign of an acute onset and that breast cancer that had metastasized to a node can go to the brain.
Of course, I will discuss this with the PA tomorrow as well and my MRI is on Tuesday. I probably have not been on any AI long enough to make a difference in keeping the cancer at bay. In any event, I will tell the PA of my concerns about my treatment and my current concerns about my health.
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sonya16,
How was your appt with the PA? Did you get the MRI done? Thinking of you 💕
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hi dimples90,
I’m sorry I never responded to your post. I was having a pretty bad summer because I was suffering with Lyme disease as well. That was the culprit of all the awful symptoms I was experiencing
The brain MRI was fine and since then I’ve had a liver MRI as well because on the merry-go-round to find a reason for my symptoms, it came to light that I have hemachromatosis.
I actually took the whole summer off of the letrozole and didn’t take any thing because I was feeling so sick. I only just restarted the letrozole a couple of weeks ago. Funny thing is I’ve had this mucocele under my upper lip for about a year now. my dentist got most of it out back in June and it was behaving itself but since I restarted the letrozole, and I don’t know if there’s any connection, the mucocele has suddenly gotten bigger again over the past few days and tonight it’s very painful which it never was. I will have to call the dentist in the morning and have him look at it again. Always something right?How has everything been with you?
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I would strongly suspect it's the letrozole. When your hormones are affected, it affects everything else in your body. That's why I won't take hormone blockers. It helps one thing, but adversely affects everything else. My risk of recurrence is low, which is why I'm comfortable taking my chances. I'm sorry to hear about your Lyme disease. I hope that is all behind you now and that you get relief from your current symptoms.
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Saleen19,
thank you so much for your response. You know I never even got this thing in my mouth until I started the letrozole the first time I’ve had so many issues when I get that drug I don’t think I’m going to take it anymore either. my recurrence was at 13% which is low, but still, there’s a chance obviously. so I’m strongly considering taking my chances as well. you’re right there’s so many other things that can go wrong. I did notice that my blood pressure went up when I was taking it and to be honest I always felt like crap. That’s why it was hard to know if it was the lyme or was some of the letrozole? My BP was normally 120/70. It started to go up to 150/90 when I stopped, it went back down. I know some other people are against not taking the AIs but I really feel like the side effects are so bad and can even be life threatening on their own. And my MO seems very resistant to working with me on this
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ps going to the dentist this afternoon so hopefully he can do something for me and hopefully it’s nothing worse than the return of the mucocele.
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Hi @sonya16,
I'm glad you finally got some answers even though Lyme disease is no fun. I had that many years ago; the bulllseye rash showed up on my leg and I was prescribed doxycycline right away. You are the one who has to live with the AI SEs and the damage they could cause down the road so it should be your decision whether or not to take it. At least my MO doesn't hassle me about that. I hope your dentist can do something about that cyst.
The tracheal deviation caused by the rapid regrowth of my thyroid remnant thanks to rads has gotten worse and triggered an apointment with a tyroid surgeon. She is willing to do radiofrequency ablation to shrink the offending large calcified nodule since I am not supposed to be intubated but I need a benign biopsy. I had that done yesterday. The radiologist was not very optimistic, said that by SOC the nodule size means the whole thyroid should come out (he's right but I don't want the RIPF to reactivate) and took a sample for a genomic test which he figures will be needed for a result. Hopefully his gloom and doom is misplaced. I just have to wait for the path report and go from there.
It's good to hear that you are in better shape than you were during the summer.
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Hi Maggie15,
it seems like there’s always something we have to deal with as an aftermath of the treatments we’ve had. That’s a shame about your thyroid. I’m hoping that your biopsy is benign so you can go ahead with the ablation. How long will you have to wait for the biopsy results? A week to 10 days? Why is a genomic test needed? I really hope it turns out to be a good result for you. Please keep me posted.
The dentist was able to remove the mucocele again and he said the reason it was hurting and getting so swollen is that it had become infected. He could tell by the consistency of the mucocele that there was an infection And after a discussion, he said that my frequency of dry mouth at night certainly would have caused the mucocele to become blocked and infected. The letrozole definitely gives me dry mouth. In any event, it still looks pretty swollen there and hopefully that will go down, but it is less painful. He’s putting me on Clindamycin for 10 days. He said I could either go to an oral surgeon and have this thing permanently taken out or, when needed, scrape the area out like he did today and back in June. I’ll have to see what’s involved with surgery before I make any decision there.
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Hi Sonya16,
I’m glad the dentist has a plan for the mucocele. It’s probably worth speaking to an oral surgeon about what could be done as a permanent solution. Dry mouth from medication can sneak up on you. I use Biotene and lozenges now but had to have lots of dental work done because of decay from dry mouth.
The thyroid surgeon thinks the nodule is probably benign since my original goiter which was removed five years ago and grew for over 30 years was. The radiologist thinks that since radiation caused the rapid goiter regrowth in six months and the large nodule is calcified it is more likely malignant. The genomic test is used in indeterminate cases but still seems to just give a likelihood. From what I have read they don’t know for sure until pathology is done on a resected thyroid. I have no idea how long it will take for the result or how definitive it will be.
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Hi Maggie15,
So the thyroid surgeon and the radiologist have differing opinions? Have you heard anything back yet?
I have a question to see if you’ve ever heard of this. Since about June, I wake up every morning with very sweaty palms. Goes away and doesn’t happen again until the next morning. Initially, I thought it was from the hormone inhibitors, but I haven’t taken them in a couple of weeks and as you know, I was off them all summer. Have you ever heard of this and what caused might be?When you google this, they say it could be a few different things and if the course it says it could also be from a malignant tumor.
I’m really hoping you’ve heard back on the pathology and that everything is OK
Sonya160 -
Hi Sonya16,
I am still waiting for the biopsy results since the genomic testing takes a couple of weeks. It's actually a good thing since any thyroid biopsy that is classified Bethesda 3 - 5 has a chance of malignancy of 10 - 50%. The SOC is a lobotomy for 10 - 20% and a complete thyroidectomy if it is greater. After post surgery pathology it turns out that many patients don't have thyroid cancer but had to lose all or part of their thyroid and need to take levothyroxine for life. By looking at the genomic makeup they are able to tell which people really have cancer and need the excision. It seems similar to the Oncotype DX being able to advise on whether someone needs chemo rather than the MO prescribing it just because the tumor is on the large side. I'm willing to wait to keep my remaining thyroid lobe if possible.
Sweaty palms can mean nothing or be caused by anxiety, drugs, endocrine or neurological reasons. Blood cancers can cause excessive sweating but I don't know if just the palms or all over. If you mention it to your doctor there might be some hint in your medical history that would explain it.
I'm off to Boston tomorrow to have a laryngologist examine my vocal cords which the thyroid surgeon thinks were damaged during my thyroidectomy five years ago. It's amazing how one medical appointment leads to another.
I hope the sweaty palms don't signify a problem.
Maggie15
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Hi Maggie15,
Did you ever get your biopsy results? I’ve been wondering how you made out.
I’m sorry I haven’t posted in a while, but you know how it gets crazy with always something happening healthwise. I have not resumed the letrozole since I stopped it again when I got the infected mucocele.
I am considering taking it again only because I had the ILC and I hate worrying all the time about the cancer coming back. I did not tell my MO that I did not restart. I just didn’t want to discuss it because I know where that conversation would go. I had so many scans over the summer between my brain and my liver and my abdomen and ultrasounds of my abdomen as well as a transvaginal ultrasound in August and I had a mammography of my remaining breast in October. So at those points, I think everything was OK but who knows. I do know that the letrozole made me feel like crap and my blood pressure has come down from 155/90 range and higher at times to 124/72 and in that range since I stopped taking it. I know I’m repeating myself here, but trying to think this out also.
Please let me know how you’re doing.Sonya16
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Hi Sonya,
Thankfully the thyroid nodule turned out benign. The cytology was Bethesda 4 but none of the 12 cancers genes the Thyroseq tests for was present. This test which wasn’t available six years ago is a game changer. My vocal cords have some scarring but work adequately so I’m really happy that I can have the RFA procedure. It’s scheduled for April. I still have 30% of my airway so it should work out OK.
You have really been struggling with the letrozole so I don’t blame you for continuing the break. It’s hard to decide whether the high blood pressure and feeling terrible are worth the benefit it might have. ILC is sneaky, though, so it’s something you have to consider. Unfortunately the test to determine its effectiveness hasn’t been invented yet. Maybe you can enjoy the holidays and try again in the new year. I wish there were a way to make things easier for you.
Maggie
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Hi Maggie,
I’m so glad your thyroid nodule turned out to be benign. You must be so relieved that you can go ahead with the RFA procedure. I hope all has been well with you otherwise. Have you been feeling OK?
I will most likely try the letrozole again. I’ve been off it now for a couple of months and prior to October I was off for it the summer. So really I haven’t been on it for a good amount of time since the beginning of the summer. So yes, I’m a little nervous about it. Every time I have a physical issue I always think it’s come back. Of course it could come back anyway, but I should take it and try again. I’ve been having a lot of problems with taking antibiotics and those creating digestive problems for me, including acid reflux and terrible constipation issues. The dentist put me on clindamycin for the infected mucocele and that has really screwed my digestive system up. So I’ve been dealing with that for a good month. Hopefully it will clear up and I can start the letrazole. I just hope it’s not too late to start again.
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Hi Sonya,
Clindamycin can really upset your GI system. When I was on it my oral surgeon had me take a different probiotic every time I took a pill and eat lots of yogurt and fermented food. Maybe some strong probiotics will help your digestive issues. It’s so hard when you have multiple problems to deal with since what helps one can be bad for the other. I hope you feel better soon.
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"I did not tell my MO that I did not restart. I just didn’t want to discuss it because I know where that conversation would go. I do know that the letrozole made me feel like crap and my blood pressure has come down from 155/90 range and higher at times to 124/72 and in that range since I stopped taking it."
Hi Sonya - I really feel for you. I have no advice except to tell you that I understand exactly how you feel. I always dread my upcoming appointments because I have chosen not to take any hormone blockers and have to go through that dreaded conversation every time. We are all different and while I have a risk of recurrence, it is low. I know I am taking a risk, but if I take hormone blockers, I risk high blood pressure, elevated cholesterol, worsening osteoporosis and feeling lousy every day. It is a balancing act for sure. What is best for one is not good for another.
Whatever choices you make, I wish you the best. I also understand about antibiotics messing up your GI system. I just had to take them for a tooth infection, so I get it. I agree about taking probiotics long term. It takes quite a while to restore a healthy gut bacteria balance.
Wishing you good health. - Donna
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Saleen (Donna) Thanks for your response.
it’s really a hard decision whether or not to take the hormone inhibitors; I know I tested 99% estrogen positive and I know that one of my nodes had cancer cells that they took when I initially had a lumpectomy. Even so the team’s subsequent decision was to do the mastectomy and radiation with no chemo as my onco type was low. And of course to take the hormone inhibitors.
So trying decide whether to take my chances with not taking the meds or taking them and risking heart attack/stroke, high cholesterol (which also skyrocketed along with my BP on the letrozole), and all the side effects / fatigue/drymouth/mouthsores/difficulty sleeping, joint pain, etc. and of course the drs all want to add extra meds to deal with the BP and the cholesterol which also carry their own risks on top of everything else.
I started taking some probiotics that contain several different types of bacteria so I’m hoping that will help straighten everything out. And drinking a lot of water for the constipation issues.I just want to say that I so appreciate that you know where I’m coming from on this. I know Im in the minority when it comes to my feelings about the hormone therapy.
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I am in the minority as well. Doctors are so laser focused on one thing, that they fail to take in the person as a whole. I absolutely do not want the cancer to return, but I also do not want the rest of my body to fail. You are correct - the doctors will prescribe drugs to treat the adverse effects of hormone blockers, but those drugs have serious side effects as well.
In addition to seeing an oncologist, I also see a Functional Medicine doctor for nutrition and supplement advice. I am doing everything I can to live my healthiest life possible. At this point, I am more interested in quality of life than quantity.
I wish you all the best on your journey.
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Saleen, thank you for that info. I would like to look into supplements also. However, now I’m thinking I made a mistake and stopping the letrozole.
My constipation issues seem to be abating, however I have been experiencing intense pressure in my rectum towards the vagina and it hurts badly. My lower back hurts and my rear end and back of my thighs feel very heavy and I get pain radiating down my legs. It’s difficult to climb stairs. When I’m sitting, I feel like I’m sitting on a hard basketball. When I’m walking, I feel like a bowling ball is pressing down on my rectum and vagina. Is it my back, my pelvic floor or cancer? I’m due for a lumbar mri on Friday and I’m pretty worried that the ILC has spread to my spine. Walking and standing put me in extreme pain. I’ve had the rectal pressure since the constipation, but the lower back pain and leg pain only started last week I went to my GYN last Thursday to check for any prolapse because of all the straining I had done during the constipation issues. I only have a mild bladder prolapse, which I think I’ve had for some time. And I don’t think that would cause problems with sudden lower back pain on both sides and the heaviness in my thighs to the extent that it is. Of course now I’m kicking myself for not taking the letrozole.
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