Has anyone quit or reduced dosage of the hormonal therapy?
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Hey ladies,
Just an update, with my Dr's approval, I switched from Arimidex and Lupron to Tamoxifen. I knew that the pill form of Tamoxifen doesnt agree with me so I requested my insurance cover the liquid form of Tamoxifen.
Ill be picking it up today!
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I meant in my previous post that it wouldn't kill people to wear a mask. (the whole mask controversy).
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Jinx, I hope the liquid tamoxifen is easier for you to tolerate. The pill form didn't agree with me either, which is one of the reasons I'm on Lupron/AI instead. I'll be very interested to hear how it goes and how you feel being off of lupron. Fingers crossed that you'll do great!
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Jenny, Interesting that you find lupron/AI easier than TAM. I tolerated TAM pretty well. Do you have any significant SE's from the AI or do you do anything to manage side effects?
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Jinx27, I could not tolerate the Tamoxifen pill because it caused shortness of breath. I switched to the liquid form and it gave me no side effects. It is very expensive, but I only had to pay a $100.00 copay once a year with my Blue Cross insurance. I hope it works for you.0
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Jinx - sending you good wishes that you tolerate the liquid form of Tamoxifen.
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Hi momwriter, the reason I couldn't tolerate tamoxifen was that it gave me SEVERE anxiety unlike anything I have ever experienced. I felt like I wasn't occupying my own body and didn't feel at all like myself mentally or emotionally. I had experienced a reasonable amount of anxiety from the diagnosis itself, chemo, radiation, and the thought of stopping my menstrual cycle at 42, but when I added tamoxifen it almost instantly felt like there was a short circuit in my brain. I cried nonstop and felt terrified and hopeless 24 hours a day, which was not how I had felt the previous 6 months from diagnosis up to the addition of Tamoxifen. My oncologist suggested that I hold the tamoxifen for a month (I was still on Lupron) and see if I felt better. It was like night and day. I started feeling like my normal self within 2 days of stopping it. I know this isn't typical, as I have several friends and family members who have tolerated Tamoxifen just fine. After my one month break I started anastrazole. That was in January of this year and so far I'm tolerating it really well. I do have some aches and pains in my hands and feet when I first wake up but once I get moving they go away. I completely changed the way I eat and cut out all the inflammatory junk food, sugar and alcohol (except for occasional special situations). I started exercising every day, drinking lots of water, and making a true effort to manage stress and prioritize sleep. I am starting to notice vaginal changes but at this point it is still manageable without medication. I use coconut oil and V Magic vulvar balm topically and drink cranberry concentrate daily to prevent the sensation that I have an impending UTI. Shutting down my ovaries and blocking all estrogen at 42 is obviously not my ideal situation, but I am hell-bent on continuing to enjoy life (even if sadly it involves less alcohol haha).
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Saw the gastro yesterday. Pissed me off already. Said the lump in my throat is not due to hiatal hernia without even looking at me or testing me yet, and asked me if the lump in my throat is due to STRESS. NO ITS NOT STRESS, I'VE BEEN STRESSED MY WHOLE LIFE AND HAVE ALWAYS HAD LOW BLOOD PRESSURE, NO STOMACH PROBLEMS AND NO LUMP IN MY THROAT, ITS THAT MAJOR SURGERY DIEP THING I HAD, ALONG WITH RADIATION, CHEMO AND POISON MEDICATION, DID YOU READ MY CHART? I have a stomach ultrasound scheduled, an endoscopy and a colonoscopy for good measure. And he wrote me a prescription for prilosec. I thought I would get something different than what I am already taking, but ok its cheaper.
Whatjusthappened, I'm not taking anything for my cholesterol right now. My feet are starting to hurt bad again form the letrozole, I guess the steroid shot worked for a while, and I'm afraid to make it worse. Just don't know what I'm going to do yet.
KateHanni, You think the swallowing issue is from the AI? Has a Dr. told you that?
Anx789, I have 3 nodules, two are under 1 cm and TR4, and 1 is 2 cm and TR3. They only biopsied the biggest one. I have to wait also and see if the smaller ones grow. Primary wrote script for ultrasound, ENT wrote script for biopsy, I had it done at a radiology group that is affiliated with the hospital. I have an appointment with an endocrinologist in October. Have you had a Dr. tell you the nodules may be causing swallowing problems? My ENT said no, but once again I don't know what to believe.
KID1919, I agree, radiation and chemo have to play a part in all these thyroid and throat issues I am having. And yes this group is going off on tangents, but that is ok with me, it is my favorite group!! I posted about a lump in my throat and got very few responses, now everyone in this group has a lump in their throat, lol. Is it from the AIs?
Jinx, good luck, that's a new one on me, never heard of liquid tamoxifen.
jennyjo20, I haven't tried tamoxifen yet, but that's how I feel on AIs a lot of the time. I hate them. I'm working from home and will start pacing in my room.
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JRNR: Well it seems odd to me that some of us are all having swallowing problems. Mine isn't really (altho I have noticed that my bigger pill seems to get stuck. Mine is a cough. I should give up smoking !!!!!!!!!!!!!! but shamefully have not.) C/O not being able to GO to sleep and that I'm tired all the time to husband .. his answer was go to bed earlier. Why so I can lay awake longer? The last time I had a good night sleep that I can remember was after my 2nd covid vaccine. HA HA I think that was 2020. Came home from work and slept 12hrs. I don't suppose that's a practical solution.
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PS: seeing onco tomorrow ..going to may be ask for a change in Al.
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KID1919, I also have a persistent cough, which I thought was allergies, but now I think is this silent acid reflux thing, but I just don't know. I wish someone could really help me. I take Lunesta for sleep, been taking it for 13 years. Lately I have to add xanax sometimes because it's not strong enough. I was a casual smoker, stopped for good 4 years ago.
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well tonight I took a half of ativan so I'm hoping it will help. And not put me under so I am late for work. Husband (retired and an EARLY bird ) keeps shutting my clock off but not making sure I get up...except to say "don't you have to work today?". For the last 43 yrs we never saw each other in the am,(thank you Lord) he went to bed at 10:15 pm and got up at 6:30. I was free to hit the snooze alarm til 7:45.(set for 7:15.) Wonder I haven't worn the dang thing out! I had my quiet time to read at night after the GD tv was shut off. I am not a fan of tv ,,,i I maybe could be if the remote ever left his hand. And it's hard to read when people are being killed, blown up etc. Well now everything is different . SOOO now he stays up later watching tv but still gets up earlier than I want to. Once again I'm on the wrong thread bitching. For 20 odd years I worked 3-11 in the hospital b/4 going back to school to become a dental hyg. Have always been a night owl. I just want my hour of quiet time back. No wonder I don't sleep worth a shit. I read at least 5 books a week... I'm like the guy from the old twight line zone. Except i can see to read w/o my glasses. He doesn't hit snooze he turns it off. Just leave my damn clock alone.
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Jennyjo, I admire your persistence in moving forward and managing the side effects as best you can and taking control of the things that you can to make the odds even more likely it won't come back. Sounds like Tamoxifen was just awful for you. I didn't experience any depression while on it for 8 years. I did experience some of the same SE's you describe like that sense of an impending UTI, vaginal dryness, . Good to hear how you manage that. I don't eat that much sugar but do feel effects when I do. and think I should give it up mostly. Hard not to have some ice cream in summer- but there's some locally made frozen yogurt that's pretty great. I've given up most gluten as it now irritates my skin - don't know if that's from chemo or tamox or menopause but I've had it since treatment (I was 47 at dx).. I suppose I could try the AI and see how it goes. I've been exercising more and maybe that would lessen the AI side effects. If it's bad, I can stop and go back to TAM.
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Edj3, do you take Vit D supplements? My Vit D is 27, my endo told me to take Vit D 1000 IU once a day. As I mentioned, my Calcium is on the high end, hopefully Vit D will not raise it more.
JRNJ, I don’t have swallowing problem, I have a dry throat (right) and a sensation of something is there. My ENT didn’t think the thyroid nodules is the cause of it because is too small (2 mm). My endo doesn’t have comment on my throat issue. I have an appointment with another ENT that specializes in thyroid surgery in September to seek his opinion. Is your thyroid hormones normal? I’ve been hypothyroid since I was in my 20s, and been on Synthroid. Lately my TSH is low and my T4 is normal which doesn’t make sense.
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I started taking Tamoxifen in 2016. It gave me nothing but side effects and literally almost killed me. (Was rushed to ER and had emergency surgery.) Yet, I continued to take it.
Then, in 2020, I was diagnosed with a new primary, in the other breast. This time was more aggressive than the first! Tamoxifen did absolutely nothing for me but cause a whole host of problems.
When I began chemo for this second diagnosis, my oncologist stopped the Tamoxifen. I have not taken it since and I will never take it again. My oncologist wants me on an AI for a few more years, for the first diagnosis, but I'm not going down that road. I had four years of hell with Tamoxifen, all for nothing. I've learned that if the beast is going to come back, it's going to come back, no matter what I do or don't do. So, for now....I try to enjoy life, be grateful for the good days, and be ever ready to fight again, if need be.0 -
Saw onco today and he suggested i change to tamoxifen if Al's are bothering me. Anyone have thoughts on the matter? He also said lump on my clavicle was bone. HMMM I don't think so but I guess I will just wait and see if it gets bigger. He is moving to another city so I guess I will be starting over with someone new.
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just reading SE effects of tamoxifen, doesn't sound much better than Al's. Why is it the drugs that are supposed to help us also cause so many other problems? I know stupid? Just makes it hard to decide what to do. OK, Kathleen stop your whining, at least I have choices.
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Hey Kidi1919,
Yeah, a lot of people have bad side effects on hormone drugs but it might still be worth trying because different people have different side effects on different drugs - like birth control pills. Even within one family, some women will do fine on one AI and terrible on another, I did awful on tamoxifen but fine on toremifene. There's no way to know what will work work (or not work) for your body except trial and error.
Also your husband should get some headphones for the tv! That sounds terrible!
JRNJ
I'm pissed at your doc too! I HATE when doctors jump straight to anxiety. ugh!
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Salamandra,
That's a good point. I'm terrified of trying the AI because of the side effects I've heard about, especially cholesterol, joint pain and bone density loss which frightens me as I don't want to compromise my exercise and I refuse to take a statin because of more side effects, but I tolerated tamoxifen relatively well for 8 years. I suppose I can try an AI and see.
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Momwriter, I'm curious, what is the reason for switching from Tamoxifen to an AI? Does it offer a much greater risk reduction? If there is a negligible difference, and you're doing well on Tamoxifen, I might just leave well enough alone (like the "if it ain't broke don't fix it" mentality). I know that AI's are the drug of choice for hormone receptor positive cancer, but I'm not sure what the studies have shown about their effectiveness over Tamoxifen. It's worth researching before you make the change anyway.
JRNJ, I hate it when doctor's pull the anxiety card on me too! Earlier this year I was in the ER with sky-high blood pressure and pulse rate that they couldn't get down, despite the multiple drugs they were pumping into me half the day, and that ER doc had the gall to note on my chart that "patient appears anxious". Duh, I'm in the ER and the alarm on my monitor has been going off all day! Maybe that would make me a little anxious? I've seen that mindset with some other male doctors who jump to the anxiety/stress conclusion because I am a woman. My mom has encountered it too, despite her very real and well-documented health issues. Because we don't look like we're high-risk, our problems must be because we're "high strung" (which I definitely am not). Soooo irritating!
Anyway, rant over, and I'm glad at least that you are going to have more tests, and hope that they shed some light on your swallowing issues. Ironically, my GI doc referred me to an ENT to rule out if my swallowing difficulty was caused by some type of allergy-related issue. When I saw the ENT, he just kind of looked at me like "why are you here?" My GI doc has thought it is possible my issues are caused by the radiation treatment, since my esophagus appeared very irritated on the upper GI. I tend to think he's right, and it is probably some mixture of the radiation, reflux, and the crichoid bar thing. I can deal with it, since I'm not really on board with having more invasive procedures done. By the way, I did ask the ENT about the possiblity of my thyroid causing swallowing issues, and he said my thyroid would have to be really big to interfere with swallowing, and mine is not. I don't know if the same logic holds for the feeling of a lump in the throat. I don't have that, just some trouble swallowing my food.
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Whatsjust- At my annual appointment which was a Telehealth, for the first time with a NP, and not my MO, she noted that my treatment plan said 7 years on tamox and I've done 8. At that moment, I really thought I might be done- and I got a little too excited== so I said, I"d really like to know how I feel without being on this drug- to see what's the tamox and what's me. (like the sense of getting a UTI- that acidic feeling; muscle cramps & constipatoon if I don't take a good amount of magnesium). She said sure I could take a break, and that I could discuss with the MO 5 weeks later. So I am on a break.
So I met with my MO last week, and she basically rained on my parade, , indicating that she wants me to stay on something for 2 more years, if I'm game, because I had a nasty pathology with high recurrence risk even though she doesn't think I will recur. . In the course of that discussion, she seemed to think I should try an AI, starting in Sept. but I don't know why- if it was because I complained of some side effects of tamox or what. I kind of was stunned after the meeting, because I went in thinking I was done, and came out terrified of bone loss etc of an AI and fear of recurrence if I don't take it. This was a lot after having not seen my MO/ been back in cancerland for about 2 years because of COVID.
So I recently wrote the MO and asked a lot of questions suggesting what you said- that maybe I should stay on tamox and what was the research on Her2 + cancer and tamox v. AI. I found two recent studies that came to the opposite conclusions, leaving me more confused, so I want to hear her opinion (she's part of Harvard/Partners- ). I also asked that I have tests before I do anything- bone density, blood panel, transvaginal ultrasounds,). I also asked about if having my healthy breast removed would significantly reduce chance of recurrence. So soon we will have the follow up conversation. I think I could bear tamoxifen for 2 more years- but it's nice to have a break.
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momwriter, my original Onco wants me to do 5 years of tamoxifen and then 5years of AI (my cancer is also very aggressive, grade 3) even though I am menopausal. He said there is a very little advantage for AI so take the meds that you're body will tolerate better. But I am loosing too much hair on tamoxifen, so he switched me to AI.
Maybe after taking tamoxifen for 5 years, your body might develop immunity to it or develop new or unforeseen side effects so a change is needed(?) Please let us know how the conversation goes.
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The first AI I tried I could only take for a week. My swallowing issues were not the biggest side effect I had which was disabling me in my job, those were memory loss (like obvious memory loss I was being called out on by my CEO) and depression (crying when there was nothing to cry about). So I was taken off Anastrozole and put on Exemestane generic and went for 3.5 weeks feeling find and just as I was nearing completion of the 30 days/tablets I got a headache that was so bad I thought I was having a stroke and depression causing me to cry. I've never been depressed, ever, but I do have headaches that are intolerable and made worse by the two AI's so far. Tomorrow I should be trying the brand name aromasen and if that doesn't work I'll try Letrozole and if that doesn't work they may have me try tamoxifen.
I will say that I was happy not to have bone and joint pain, but that also evaporated after stopping the exemestane all of my joints hurt. Ankles, thumbs, wrists etc. all hurt and I'm exercising alot! 46.5% of all women in the clinical trials for exemestane and anastrozole stopped taking them due to the side effects. I'm almost at that point of giving up as well, but really want to live. I'm 61 and feel 90.
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The difference is Tamoxifen is slightly less effective and how it works is by coating the estrogen receptors so nothing sticks. That said the AI's actually block the aromatase enzyme which binds the estrogen cancer cells and eventually makes them dormant and any tumors even trying to grow become dead and disappear. AI's have for me been a challenge due to the side effects, but I haven't given up yet. I have one more AI option and then the doc will put me on tamoxifen if AI letrozole doesn't work.
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Going through the exact same situation. I've tried two AI's and SE's are incomprehensible. I write medical research grants for auto-immune disease so I have scoured the internet and in the UK Breast Cancer blogs, probably because they are on the National Health System so changing meds doesn't cost them anything, many women have found that brand name aromasen doesn't give them the SE's that anastrozole (same medication) generic gave them.
Also, to your point, there are hundreds of blogs in the UK whereby women so concerned about toxicity levels of the AI's and the extreme side effects are deciding either to quit or skip a day which had me lookup a few clinical trials for those who are experiencing AI toxicity and who are "elderly." Apparently the older you are, and the thinner you are, the more likely the dose which is standard for everyone; is toxic for you. I'm strongly considering, before giving up altogether, taking every other day to see how that effects me. In the clinical trials for the AI's toxicity they found in elderly folks (I'm 61) that for a whole host of reasons older people can have toxicity that younger folks don't have.
I feel like I'm going through some sort of AI nightmare. Also if they try to put me on tamoxifen, I'm concerned about endometrial cancer given my grand mother and mother both had it and tamoxifen causes endometrial cancer in some patients. So it's really scary for me to try to continue on this path given also that the MD's I'm seeing are so busy due to a rapid increase in cancer patients, I don't feel like a wholistic view is being taken given my particular pre-existing issues.
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Tamoxifen or AIs and which AI. How do you know if any of them "work". The answer I get is "if there is progression". So, the only measure is that they are not working? There has got to be a better answer! If there is progression.......... is it too late for "curing" and only managing?. IT is encouraging to hear that some still seem to be doing ok after 10 years mbc. This is the 3rd BC for me and DR thinks each must be a new cancer. The 3rd one has become metastatic. I was on Ibrance and Arimidex before it became metastatic. Now on Exemestane/Afinitor. Maybe the Tamoxifen was working and I should not have stopped after 5 years. I was already menopausal, but the oncologist I was seeing then has more confidence in it than the AIs, which I guess were still fairly new at the time? (2009). It seems like DRs seem to favor one AI over another, but I don't know why. It is such a F#$%ing beast.
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
9/2019 New tumor in R-axilla, ER+. Genetic test showed no known markers (20+ looked for). PET scan, no indication of spread. Stopped Tamoxifen, start Arimidex and Ibrance
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray. Surgeon said PET scan measures activity, and since it was not cancerous, why the PET did not see it, but the CT did.
CTs through August suggest tumor is shrinking, a little.
12/2020 – Arm swelling becomes significant, start developing a rash. DR orders CTs which shows cancer has metastasized. Stop Ibrance/Arimidex 2/2021. Start Exemestane/Afinitor 3/2021.
5/2021 - 18 rounds radiation. Swelling goes way down, but there is still a big lump of fibrotic tissue. First scan after radiation not good. Seems to be spreading in tissues/skin. May be too cloudy to see if it is in any organs.
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Hi Bessie -
I see you were diagnosed with breast cancer in 2003 with size of 7 cm and it reoccurred in 2017. What medications you were on since 2013 .
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Update,
Its been two days since I started the liquid form of Tamoxifen, Ive been taking it at night before bed and haven't had any side effects.
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