Has anyone quit or reduced dosage of the hormonal therapy?
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Lillyishere, not sure if you saw my post 6/19, but I wanted to thank you for thinking about me and how I'm doing. I don't think the letrozole caused the hiatal hernia or swallowing problem, but not sure if it aggravated it. I'm sure the main cause was surgeries and radiation. I went off the letrozole for 3 weeks and felt much better because I was sleeping normal, but no effect on the swallowing problem. I don't know about the thyroid nodules and if there is a connection there. But supposedly the nodules are not causing my swallowing problem, the hiatal hernia is causing that problem. The letrozole makes me severely agitated and like in a half sleep all night. I took Effexor last night to try and battle those symptoms. It's been in my cabinet for a year. It did make me sleepy and I feel calmer, but I feel nauseous and dizzy from it today. I'm almost ready to try tamoxifen. But yes, its hard for me to be optimistic when I'm miserable, but cheers to none of these problems being cancer recurrence and being 2 years out!!!
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JRNJ, you might have said it in a previous post, but have you tried going on a proton pump inhibitor or other acid reducer? Trouble swallowing is apparently a pretty big symptom of reflux, even if you don't have heartburn. I have an aversion to acid reducers, as they inhibit the absorption of many vitamins and minerals. Still I've been prescribed them by several doctors who have attributed my swallowing and coughing issues to reflux.
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JRNJ, this is terrible! I don't know why no one would mention anything from all the screening you had. Why did they leave it until symptoms got worst? Many times I just don't understand why most of the doctors care only about only their part and don't even mention something else that is obvious to them.
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JRNJ: apple cider vinegar is suppose to help with acid reflux. Weirdly. I think it's a tablespoon in a glass of warm water. Glad it's not cancer. I keep worrying about the lump on my clavicle. I would bet it's from rad tx. Well we will see after next exam later this month.
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KIDD - I had a great camping trip, I hope you did too. We took different hikes everyday, about 5-6 miles each. The heat really got to us though. Too tired after returning to camp, to drive over to a near-by lake(small) for paddle-board.
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BluegirlRed... We did have a great trip. Took one hike and after that grand daughter (9) vetoed all hikes for swimming in the pool. The 2nd last night we had a big thunder storm and lots of rain so we opted to come home a day early. Been raining since off and on. That's ok we had fun. I'm glad you had a good trip too. SIL camping tonight by herself in a tent.... this is her 4th wkend camping and my brother refused to go/drag the trailer (as he has the last 3) to where she is with friends from high school. Kinda can't blame him, he is putting new windows in the house. Anyway they will sort it out. We have another trip wk after next to the thousand islands with my family, so something to look forward to.
To anyone: Has anyone changed Al with a better result? Meaning less SE? I have an appt coming up and can't make up my mind if I should try a change. (on Letrozole)
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I am reading all these posts about the letrozole and very concerned. I am supposed to start on it in about a month after I finish my radiation. I have researched and have yet to hear anything good. I saw my oncologist for visit today and felt like she downplayed a lot of the side effects when I told her my concerns. I also hate the thoughts of taking another medication to my increasing number. I had a heart attack in 2019 and on multiple meds that my heart doctor keeps saying let’s do 6 more months every time I go. I also have bad arthritis needing joint replacements in both knees and have difficulty walking now. I am so afraid (from what I sm reading) that the letrozole is going to do me in. My husband tells me to quit googling and everybody is different blah blah and I know that but then doctor downplaying my concerns today really did not help. I guess I am looking for reassurance from people that may have been on it and NOT had all these side effects. So glad I can vent here because everybody else is telling me how lucky I am not having chemo and I get that. I am truly blessed and thankful but anxious
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Gig57...just wanted to let you know I had a similar diagnosis. I refused an aromatase inhibitor from the start for many reasons. IMO you should really weigh the odds of side effects vs benefits because of your previous heart attack. Estrogen does protect both the heart and joints. It's a very personal decision. Good luck.
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dtad…I thank you for your response. Every time I say I am not going to take it I'm not getting good response from family, mainly husband. I think it is kind of funny that the heart doctor just basically told me good luck on the bc and the oncologist just wants to address the bc but shouldn't somebody work with all. I guess I have a few more weeks to pray about it. I feel like if I don't take it and end up with recurrence I did not do my part. May I ask what kind of response you got when you refused the AI
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Hi Gig57, Because of osteoporosis I told my MO I would try tamoxifen no exceptions. If you are on a blood thinner or have a history of blood clots you can't take it. Since my hysterectomy last year I have been doing well with the side effects. I split my dose 10mg in AM/PM after slowly building up the dose. My MO wanted me to switch to a AL this year, but I refused. I found a lot of the doctor's don't know anything about these meds for BC and our MO's spend a lot of time denying the existence of side effects in order to get you to accept. All you can do is try it. If you go on the AL you will have to go on a bone building drug. Something else to consider. Best wishes.
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Hello flashlight. Glad to hear you are doing well with the tamoxifen. I am already scheduled to undergo a bone density before I start the letrozole. My last bone density showed very mild osteopenia and she is Already talking about adding a bone builder if it’s any worse. Hopefully I won’t have to. Hope you continue doing well.
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My onco wants me on an Al but said it was my choice. I felt not pressured into it ,but made to feel like if I didn't and there was a return of cancer it would be my fault for not taking it. I wish (don't we all) it was an easy decision....
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kidi919…I know what you mean. Did you decide to try the AI then
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Gig57,
Do you know your oncotype score so that you have some idea of what your risk of recurrence might be? If it is very low, the risk of side effects on your health may not be worth the tiny bit of risk reduction an AI would provide. My cardiologist told me that the BC trumps everything, but then again I've never had a heart attack. Not to scare you, but I have cardiovascular and joint issues (hips in my case) that have definitely gotten worse since going on AI's. I've watched my Mom struggle through multiple heart surgeries, and so I have just as much fear of heart disease as I do BC. I'm on a break from AI's right now, trying to revaluate my own risk vs benefit. Fortunately, I have a very sympathetic MO who doesn't downplay my SE's.
It's an incredibly difficult decision for sure, one that many women agonize over. You can try the letrozole out, and see how you react to it. Maybe you'll be one of the fortunate ones who does ok. Just don't let anyone pressure you into doing anything you're not comfortable with. You know your body better than anyone.
Best wishes to you!
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Gig57, yes I have been taking letrozole for about a year and a half. I feel tired a lot and have joint stiffness/aches. On the other hand I don't do anything to help myself...like exercise so... It did keep me awake at night so now I take it around 4pm. Oncotype score is 18.
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I took Arimidex for one year until I was DX with osteoporosis. I shouldn’t have been taking it at all since it attacks the bones and I already had osteopenia. I told my oncologist that so she switched me. Shouldn’t she have know that? Anyway Tamoxifen was no cake walk but I was afraid not to take it so I did take it for 4 years. My MO said I didn’t have to take it after 5 years because of the risk of blood clots. I had one at age 16 in my leg. A girl kicked my leg in soccer. She said risk was too high for that after 5 years.
To be fair I did not have the medical history or the side effects a lot of women have. It is really about your quality of life too.
It’s also apersonal choice of course just be sure you don’t second guess yourself or look back later and say what if?
Btw I will be 10 years out next month.
Good luck.
Diane
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yay for being 10 years out. That is awesome. I am thinking that I will probably try it and see what happens and hope for the best. I did not have oncotype score as MO did not seem to think I needed this since no family history and small tumor size etc. should I have asked for this anyway. I know we tend to trust our doctors and what they tell us. I guess when you go through this you just want everything over with quickly and not have to think it could happen again and having to take that one little pill everyday does not help. Kidi919 they always say exercise helps with everything but it is harder to get motivated when you are constantly fatigued and hurting already. Praying you can get your energy back soon
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Gig57...I tried to have an honest discussion with the MO about side effects of aromatase inhibitors. When she told me there were no side effects the discussion was over! I never went back. My breast surgeon was not that concerned about it. I should tell you that I lost 30 pounds and try to exercise daily. This has been shown to lower recurrence rates by 40-50 parent which is comparable to anti hormones. I also take several supplements, including Breast Defend. Please let me know if you have anymore questions. Best of luck.
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Gig57, I would ask your MO to do an oncotype score. In case you can't do hormonal therapy you will have a better idea what your odds are. Your biopsy sample is frozen and can still be tested. Mine was 11 with high estrogen. You will have to go on a bone building med. I didn't have a history either, possibly my grandmother, the following year my sister was diagnosed. All genetic testing was negative. Good luck to you.
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Gig57< I went for a walk tonight! LOL I asked to have oncotype done. Insurance didn't want to pay but the company that does the test sent me a letter asking if they could intervene with the ins. I had them fight it over and ins did pay. It gave me a better feeling about if I needed chemo or not. I also had high estrogen level. No family hx. Never know what's going to happen in this life! Having chest ct tomorrow for nodule in lung that has grown a little over the last 4-5years. (yes I smoke). Also, what ever the hell is growing on my clavicle. I am hoping ct will cover that area as well so I won't need another ct which is what primary wanted. Anyways enough moaning.
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Whatjusthappened, Yes, when I found the hiatial hernia on my CT scans, I stopped taking allergy medicine, I started taking pepsid, than I switched to prilosec and have been on that about 2 weeks, and I started propping my head up at night when I slept, I've been trying to eat better. I could tell right away I was feeling better, but the lump in my throat is still not gone. I have that constant cough too I thought was from allergies and shortness of breath. Now I'm waiting to see a GI doctor. I think I have silent acid reflux. If that is true, about effecting absorption of vitamins, that's another problem for me because of my kidney stone issue.
I'm back on my letrozole, trying to take it every day, but after about 4 or 5 days my hands and feet went numb again, and I had to skip a day. But still better than last year. But I'm still off my statins. I think the combo of AIs and statins is what caused me so much pain and I'm surprised there is not more discussions and studies about that. My LDL is now 197, very bad.
Lilyishere, I'm so deflated from all the mistakes. I could have seen a GI doctor 2 years ago, now I wait to see one. I could have taken prilosec and avoided some of these throat issues that might be permanent damage. I basically also had diarrea every day for a few years and thought is was "normal" due to the treatments and medications.
KID1919, thanks, the acid reducers work, I just didn't know I had "silent" acid reflux. I have been on 4 different AIs. I am doing better on letrozole than the others, but I think it may be a combination of things, I also went off my statins and had DIEP flap in January. It never hurts to try a change. I recommend aromasin though, not arimidex. While it didn't work for me, supposedly some people do much better on it. I had so much arm and leg pain on arimidex. Good luck with your tests, hope it's nothing!!
Gig57, the4 reality is you might have issues on it, but you won't know til you try it. I think you have to give it a try, you can always stop it. I've tried 4 of them. I was not going to continue in crippling pain if there was another option. I was also doing every other day and that didn't work. You are also on the forum for people who have problems. There are several other threads for people that are doing ok on them. Hope you are one of them! My cardiologist suggested I stop my statins to see if it helped the pain. Rock/hard place/us. I also have osteopenia, and my mo just said take calcium. Has not discussed anything else.
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JRNJ, I hope that the GI doctor is able to help you with your hiatal hernia and swallowing issue. My husband has a hiatal hernia and takes proton pump inhibitors for it. I'm not sure what other treatments there are beyond surgical. I'm so sorry about the delay in treatment. It is very frustrating when doctors don't mention incidentals found on scans. I've gotten into the habit of getting copies of all test results so that I can read them myself. I've found stuff that no one mentioned as well- for instance a hip CT mentioned that I have a hernia in my lower abdomen, but no one mentioned it to me. I guess it's not that big a deal, but still I like to know these things.
That LDL is bad. Are you still taking Zetia for cholesterol? I found that while I was on Aromasin, Zetia did little to nothing to lower my cholesterol. My MO said I was probably going to have to take a statin. I went off the Aromasin for a few months, and my cholesterol is almost back down in the normal range. If I decide to go back on an AI, I will likely have to take a statin with it, which I really don't want to do for the same reasons that you have experienced. Like you said rock/hard place!
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Kidi919..hope you get good results from your ct scan. I was also a smoker for many years until my HA in 2019. I tell people if I had known i sure would have enjoyed that last one a bit more lol. I am glad you were able to get a walk in. I think my physical limitations are bothering me more than the bc diagnosis. I was an avid walker even doing the race walks and now I can walk but after about 3-4 minutes I am in so much pain from my legs. Was going to have this looked into this year but on hold right now due to this.
JRNJ…I am probably going to try the Letrozole and see what happens. Praying I will be blessed with no issues. I’ll go check out the other forums too thanks.
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Whatjust, I am going to try an AI after 8 years on tamoxifen. We are choosing Extestemane because it has fewer cholesterol issues...I will start in Sept and see how it goes.
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I had swallowing issues with both anastrozole and exemestane (which are the only ones I've tried yet. I also have pain in my liver area (we don't drink alcohol) and blood in urine/and multiple UTI's which I did not see as a side effect; but completely resolved when I stopped taking them. Not sure what my MO is going to tell me next.
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Momwriter, I hope the exemestane works out better for you. I've actually thought about asking about trying Tamoxifen because of my osteoporosis, but the whole stroke risk thing scares me. How was you cholesterol on Tamoxifen?
KateHanni, did your swallowing issues go away after you stopped taking AI's? I know that extra estrogen can cause reflux (like in pregnancy), so I wonder what effect the lack of estrogen has on the upper GI tract. Interesting. If your lady parts are dry from lack of estrogen, it makes sense that UTI's could develop. I had issues with UTI's after my first couple Prolia shots, which is listed as a side effect. Did you take anything for bones along with the AI's?
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I've been on Anastrozole for 1 1/2 years, and I am having issues, not sure if A1 related: (2) issue to with my throat, I have no pain at all but I feel like there is something there, MRI shows nothing there; (2) I have elevated Calcium, blood shows nothing to worry about, I have too much Albumin that causing the spike in Calcium; I am not taking any Calcium supplements. My Vit D is also low, my endo wants me take Vit D supplement, but I'm afraid if I take Vit D that will elevate my Calcium more. (3) US shows I have one 8 mm thyroid noodle on my left thyroid (TR 4 - moderately suspicious) and 2 mm on my right thyroid. Thiis freaking me out! They are not recommending biopsy since it's too small. They just want to observe, and redo US in 6 months. I don't think I can wait and see. I have endo, ent, primary, and Onco but they are not working as a team.
JRNJ, I have the same thought as you, that my thyroid nodules is making the weird sensation on my right throat. How did you convince your doctor to refer you tobiopsy? Who did the biopsy, endo or you went to hospital? My endo is DO no MD, she doesn't seems the one that will do biopsy or surgery, on the other hand there is a ENT thyroid surgeon on my ENT office.
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ANX, sorry about the throat issue. I hope it resolves soon. The thyroid sounds nervewracking- they need to understand "wait and see' just does not work when you've been through what we have. My Vitamin D is low also, My MO has never paid attention to it, but maybe I should take regular supplements. I hope you figure that calcium cycle soon- my Calcium has been high in the past and I stopped taking supplements. But aren't you supposed to take Calcium when on an AI for osteoporosis?
Whatjusthap, thanks for sharing your experience on EX and AN. My cholesterol is always on the high end of normal(genetics more than diet), and TAM did not make it worse. In general I tolerated TAM quite well. I had started to develop some foot tingling in May- but I don't know if that was TAM. I did take B vitamin and that helped. And it has mostly stopped since I ended TAM 6 weeks ago but who knows what it was-and it has been 8 years so it's a long time to be on a drug. I had had hot flashes, but they had mostly subsided and mine were never really bad- not sweaty, more like a dry heat flash. I also had vaginal dryness, and since chemo had developed a gluten skin sensitivity but I can't say if that was due to chemo-taxol, herceptin/perjeta, or to TAM. Who the heck knows. All this has been manageable- I was just tired of it and wanted to see how it felt to be normal. I also hoped that I had the green light to stop all HT but didn't apparently.
As I read about the AI complications, I'm wondering if I should stay on TAM another 2 years to get up to 10 rather than risk all the AI side effects. I wrote my MO a list of q's around rethinking this decision and I think we will have a Telehealth meeting soon to follow up.
There is no perfect therapy, and they are all better than a recurrence. I feel I want all my ducks in a row going forward with any HT. Like, I need baseline tests. I need to get a transvaginal ultrasound to make sure all is okay from the TAM (I have no symptoms but I want to be sure). I need a DEXA to check bone density. Maybe I need my blood tested again for all the things they tested when I was in active treatment- liver enzymes etc -it's been years since I've had a full panel- to see what my "normal" is before I go on a new drug or resume TAM. Are there other tests I should do?
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Everyone to the above posts: my thyroid shit the bed after rad tx. Rad dr and primary said it wasn't from radiation, I call BS. I have been having a weird thing in my throat also. The lump on clavicle getting slightly bigger (right side not CA side) . Every few days I get this dry feeling in my throat ,on the right side, makes me start dry coughing and then sneezing a zillion times, Then It's gone, WTF. Seeing onco Thursday. I feel like it is from that thing on the right side of my clavicle. It's touching my throat. I have always said i was hung in a previous life as I can not stand something touching my throat.
On a different matter I was reading online about people complaining about having to wear masks again. I tried posting an opinion but it wouldn't post. Probably b/c I said wouldn't kill you to wear a mask, would you like it if OR staff was mask less as you went to surgery and perhaps they should give up hand washing too. I wear a level 3 mask everyday at work as does my daughter. MY DIL wears an N95 or level 3 intubating people. JEESH. This virus is not giving up and people who make it political are ignorant in my opinion. Can you not care about other people and see that this is EVERY country in the world trying to deal with this along with all the other crap going on.
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LOL guess my 2nd paragraph should have gone on steam room.
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