Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hi everyone, my name is Johanna and I live in Utah. I’m a newbie and stumbled onto this thread today when I set up my account. It’s so interesteing and comforting to read about your experiences and to know I'm not alone going through all this. Thank you for all your thoughtful and informative posts. I'm so relieved to have found this.
I had my lumpectomy in late June, my radiation in August. I started tamoxifen at end of September and took it for a month. Sadly I experienced really bad side effects, specifically mood swings/rage , dizziness/disorientation so my oncologist discontinued. I had a few weeks off and let my body recover, and the side effects went away almost immediately.
My oncologist did a blood test to confirm I was premenopausal and then in end of October I had my first injection of zoladex. About 4 weeks later my oncologist took another blood test to confirm that my hormone levels had gone to post menopausal levels and then started me on anastrozole right around Thanksgiving.
I do the zoladex shots every 28 days and take my anastrozole and now citalopram (for anxiety, which is one of the SEs I've had from the meds) at night as I go to bed.
Being about 6-7 weeks into taking both simultaneously, I do have quite a few side effects, although none as bad as I experienced with tamoxifen.
I have a lot of hot flashes, especially at night and I have trouble sleeping. I wake up most nights at 3-4 am and often end up getting up at 5 when I give up on getting anymore sleep. Strange to be up early every day after 45 years of being a total night owl:). Not getting enough sleep wears on you though.
I'm also experiencing quite a bit of anxiety, but the citalopram has helped make it more manageable.
My body/joints/back ache some and feel stiff and I'm struggling with fatigue (since my radiation) and I'm having headaches in the morning which I normally never have.
In the first few weeks I had a hard time with temperature regulation and was so cold to the bone, I took hot baths several times a day to just to stop shivering but it's gotten better the last few weeks.
I'm so hoping some of these side effects will get better with time as my body gets used to all this. I do think it's so individual. Mt step sister, who is my same age (46), has been on tamoxifen for 5 years now and says she barely had any side effects. So strange how our bodies can react so differently to the same medications. I couldn't help but feel disappointed that I've struggled so much with side effects to both types of hormone therapy. Before beginning all this, I couldn't for the life of me understand why people would stop treatment considering all the research on reoccurrence but after the last few months, I get it. It's been hard. I try to take it a day at a time because the thought of doing this and feeling these side effects for 10 years is overwhelming.
I really need to get better about getting my exercise, I think that will help with my mood and general well-being but I've gone from a very active lifestyle to quite sedentary since my diagnosis. My arm was pretty messed up after surgery and fatigue since radiation is still a battle for me, but reading about how you guys are staying on top of exercising makes me realize I have to get my butt out there and move through this fatigue and it would help my bones too. I just struggle with motivation. So impressed how several of you are keeping up your activity level, well done! I so dropped the ball on that and I think it’s contributing to my mood and fatigue?
Scheduled for a bone density scan next week and depending on results, some sort of bone strengthening infusion to start in March but I need to read up on that more before I start yet one more thing.
Wondering how you’re all holding up with all these treatments and regular life...families, work, responsibilities?
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I give it a try but not a lot of hope : anyone starting Faslodex (alone, not with Ibrance) after recurrence having Tamoxifen ?
My recurrence is stage III.
I was diagnosed Tamoxifen resistant. So ladies, if you can't handle Tramadol or codeine, these are the symptoms of enzyme gap and a potential resistance to Tamoxifen.
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Pebbles, I see you are her2 negative, so maybe that's why your MO gave Tamoxifen to you... and you didn't need chemo, so maybe that's the reason. I am tripple positive, needed chemo and others like me also take OS + AI.
I am doing quite a lot of walking in the snow lately, it's so beautiful. The weight I gained during chemo (a few pounds) is going off with all the shoveling, but maybe it should rather stay as a reserve for my BMX in less-than 2 weeks.
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ghostie--I'd really recommend you start every other day. It's an easy on-ramp to taking it every day--I think it'll help you get going.
Johanna--all I can say is start slowly. Do you belong to a gym or did you exercise on your own? Set small, achievable goals. Everything I've read says exercise is really key going forward. I think it'll help your attitude as well as your body. Re: keeping up with other responsibilities, in a way it's been easier since I'm older and my kids are gone. Also, I mostly work from home. Many days (now that the medical appts have slowed down!), my only trip out of the house is to the gym.
JaBoo--what is your surgery date?
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Hi Ladies!
I hope this Wednesday is treating everyone well
Johanna-welcome! Wow, your tamoxifen journey sounds like mine! You are right, I definitely assumed, “Oh, I have a prescription for this-daily for 5 years...I’ve always been a compliant patient...I’ll have no problems taking it”!
We just never know what SE’s we’re going to have until we try it. I stopped taking it (with doctor concurrence) after about 2 1/2 weeks. I’ve never had a ‘side effect reaction’ to anything in my life! But boy, I had some a horrendous one with this! I’m so happy to hear that so many of you gals are able to take it with none or minimal SE’s.
I have an appointment scheduled on 1/24 to see what my other options might be. I just turned 47-and I’m on the cusp of menopause (almost a year in)
I also feel you about the exercise thing...verrrrry slowly getting my footing back there. I mean, once/twice a week-at the most...but I’m lucky if it’s once a week 🌼
I do love hearing about everyone’s journey. Thank you all for your continued honesty and encouragement!
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Hi. I just finshed chemo (early--it was stopped due to complications) and am now onto rads with tamoxifen for 5 + years. I am only on day 4 of tamoxifen but feel awful. Leg pain. ankle pain, headaches, vertigo (a very new thing for me) and fatigue. I start rads next week. Someone told me it can take 3 months for your body to adjust to tamoxifen. It is going to be a long three months. I desperately want to get outside for a walk but just can't bring myself to do it. I am managing to keep up with the kids, school, lunches, breakfasts etc. But barely. I feel all I do is watch the clock and wish it was closer to bedtime. I would find it helpful to hear of other's side effects to tamoxifen, and if they managed to push through it to some kind of normalcy, weeks or even months after.
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Ingerp- thank you! Yes you are so right, small achievable goals is great advice. I often think too far ahead of where I want to be physically and then get overwhelmed and skip entirely. I’m goi g to try to just do 15 minutes on my stationary bike today.
Sugarmaple- thank you and yes, our experiences sounds very similar. I’m so sorry you also had bad SEs of tamoxifen. I hope whatever next step or meds you choose will be a better fit for you and hopefully no or minimal side effects. 🤞
Elizabeth9-I’m sorry you are also having bad side effects. The vertigo was one of mine to and it’s disorienting. I was scared to drive. I hope yours calm down and that they get better as you go. I hear you on waiting all day for bedtime. My kids are in high school but after getting up with them, making breakfast and packing lunch and then working all day at my shop, I’m so tired by the time I get home I’m ready to hit the sack at 8.😄 We’ve eaten more takeout food and store-bought lasagna than ever in our lives in the last 7 months but what can you do right? I feel guilt for not being able to be my regular self as a mom, wife and business owner but I simply don’t have the energy for that fifth gear,if you know what I mean?!
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Hi Everyone - Happy Wednesday!
Ghostie - don't be afraid - just get started, and then keep yourself busy and distracted so you won't wonder about whether SEs will hit. If any do hit, note them down along with the date and time. I am sure you will do great, and if you do have an issue down the road, your doctor can make adjustments with you.
I am now one week into Anastrozole, and noticed that I woke up feeling extremely stiff this morning. I almost felt like I couldn't move without pain, but once I got up, I did a bunch of stretches and am now back to normal. So morning stretching will be a must from now on...
I had my very first bone scan yesterday, and while I don't have the official results yet, I saw the tech's computer screen, and it appeared that I was a bit in the "yellow" (within zones of green, yellow, and red). I hope that this only means I will have to take more vitamin D and calcium supplements, plus adjust diet to include more calcium? Does anyone have knowledge of how these bone scans work, and what types of treatments come out of them?
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I was just reading the AR+ thread for the triple negative cancers. It made me feel so so grateful for tamoxifen and the AI options we have. I was pretty resistant to it all at first, as I think many of us are. My surgeon was so positive about things, and I just wanted to be done. But it is actually a great blessing to have not just one drug but a set that have proven, validated efficacy. And it's cheap and easy to get.
Meanwhile I had a fall on my bike today, so when I'm all sore and achy in the next day or two, I need to remember that I shouldn't blame it on either the tamoxifen or possible metastases, but just my own rash judgment in trying to hop a curb. Sigh.
I met my psychiatrist at the cancer center today. I like him so much. We have a back up plan for my anxiety/sleep now, in case things haywire after I go back to work next Monday, which makes me feel better. He also said that he heard of a lot of people having issues with heartburn during radiation, and very few with the hormonal treatment. That matches what the radiation nurse said, though the radiation oncologist denied it. If my ridiculous heartburn is due to the radiation, that's great because I'm done with that, and it's one less thing I can hold against tamoxifen
Has anyone had a cold flash? I've been having warm/hot flashes, but then the other day I got super super cold for no real reason, just sitting around inside. Is that a thing?
Also I feel like complete butterfingers lately. Like puberty all over again. I knock over or drop about half the things I touch.
Wonderful to see all the new and old names here!
Misstic, I hope you can find company for your treatment! Was AI not an option for you because of the same enzyme issue?
JohannaK, I'm sorry the tamoxifen didn't work out and I hope AI will. Apparently it's more effective also. I have a really really hard time with exercise as exercise. Bicycle commuting to treatment actually worked really well for me, but my actual commute to work will be much shorter, so ironically my amount of exercise will go down. My job isn't that sedentary though so at least that's something. I was thinking of getting some equipment for light resistance training at home since I've read so many good things about the impact of weight training and I don't trust myself one bit to get to a gym. I don't really trust myself to work out at home though either, now that I think about it...
Sugarmaple, good luck with exploring the other options! Bodies are so idiosyncratic.
Elizabeth9, oh my gosh it seems like you are doing amazing!! Keeping up with work and kids and meals - please please don't beat yourself up for not going for a walk!! The last thing we need on top of this is stuff that makes us more miserable.
RCCalimom, I hope you get good results!
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Salamandra, I am either burning up with a hot flash or freezing to the point of taking my temperature to make sure I don't have a fever. I have to dress in layers and make sure I have a toasty cowl and pair of fingerless mitts around at all times.
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Elizabeth - when are you taking your tamoxifen? I take mine in the evening so that any vertigo/wooziness happens when I'm in bed.
RCCali - my DEXA didn't have color coding so I'm not sure what that means. I guess the tech couldn't tell you if you have any osteopenia? I did (which is why I'm taking tamoxifen and not an AI), but it wasn't severe enough to put me on a bisphosphonate. I did start taking vitamin D and I'm trying to do more weight bearing exercise.
Salamandra - I had problems with being cold after my BMX and all the way through chemo. I would just suddenly feel super chilled. At work, I would wear layers and layers of clothes and put a shawl around me. And this was in summer! It's been less of a problem, but it may be because the office is over heated.
It's really interesting to hear how varied everyone's experiences are with the various endocrine therapies. Good thing there are options to try if one doesn't work.
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I have had alot if issues with being freezing cold since blm along with hot flashes. Im usually one of those people who are hot all the time. My husband was constantly complaining because I kept the ac down at 69 alot! I had a hysterectomy between lumpectomy and blm and was having hot flashes alot. Still am but now add being cold to the point of shivering. Being cold has gotten better over the last few weeks but at times i still just cant get warm...until i have a hot flash lol. I just think it has to do with the physical trauma of all that we've been through the last several months. I try to time getting out of bed for when I'm having a hot flash..thats the only time i don't mind them!!
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Just posting some Domino therapy. Thank you to everyone for sharing your stories and specifics on both sides! Very helpful for those of us prepping to start.
So far I’ve learned evenings for tamoxifen, start slow on dosage, and exercise is key.
And one from Domino - stay PAWsitive!
Such a useful sentiment that big brother Tucker wanted to chime in as well.
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Domino and Tucker are so expressive!
Kali has some thoughts too:
"Staying in bed is Good. Let's sleep!"
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Hi all, I’m new to this group and starting Tamoxifen tomorrow from what I’ve been reading from your posts it’s better to take this at night? Also I noticed PebblesV be that you said
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Oh Kali that bed looks super cozy with your fluffiness in it! (Salamandra love the photo)
HPFULL - I have no idea what’s best and as you can see from this thread we all have different experiences. I’m just going to try tamoxifen at night because a couple of people on this thread who have had minimal to no SEs (wanderweg is one!) take it at night. And I did take letrozole for the IVF stims and didn’t have SEs from that and I took it st night too.
Ghostie - have you started yet? What dosage do you have to take? Daily letrozole was part of the IVF stims for me and I was OK on it.
Jaboo - yes I think that’s true re: why we were prescribed different things! Hope it works out for us both.
Taking a cue from Kali...
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Salamandra - Kali is soooo beautifull it brought me on the verge of tears!!! ❤️🐈❤️ (Our wonderful tom cat passed away in October, he was 15 y. o.) I love cats!!
I am sometimes freezing too!! It showed me that one can appreciate a hot flash!! We have great winter with piles of snow right now... yesterday I woke up freezing.. temp was ok. but couldn't get warm... today I woke up with a hot flash and I welcomed it! How sick is that 😁 I could get out of bed instantly
the anti-hormone therapy messes with our internal thermoregulation, I guess
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Welcome, HPFULL! This is quickly become my favorite thread... lots of ideas, opinions and support, but with respect for different choices.
Domino, Tucker and Kali brightened my day!
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Is the butterfingers thing a side effect of AI? I've been dropping stuff left and right the last few days but didn't make the connection.
Pebbles - I'm on Team Tucker! What a cutie!
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Hello all - I start Tamoxifen in about a week and I am nervous about the side effects. I'm trying to just think positive and not assume I will get any!
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Yay, thank you all for the Kali love!
Hapa no one told me about the butterfingers thing but I'm definitely having it. So far it's just annoying and kind of funny but I hope that it's going to be a passing thing as my body adapts. I'm starting a list and will run it all by my MO next time I see her in March and report back.
Yesterday was a big going out day and today is turning out to be a big staying in one, but at least I got multiple loads of laundry done. Tomorrow I'll go on one last run to the hospital to get an EKG, and then Monday it's back to work! Egads I hope I'm ready!!
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salamandra...oh my goodness YES on being cold. I’ve been cold to the bone and often grateful when a freaking hot flash comes on as it’ll finally warm me up. The first month on both meds was ridiculous, I actually would start my day with a hot bath to warm up, go to work, drive home at lunch to take another hot bath and then take a third bath when I got home from work at night. My MO couldn’t figure it out and even tested to make sure that my thyroid wasn’t off but it was fine. But from what I’ve read it seems estrogen is linked to our temperature regulation and when your body’s estrogen production and uptake goes off a cliff...the body must have a hard time keeping up.
It’s gotten much better though this month for me. Less bone-cold and more hot flashes instead. I’m still generally cold but not to the point of leaving work and having a hard time functioning. Now I just bathe first thing in am and when I get home.😊 baths have seriously become my veryfavorite thing.
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So I have the Aromasin pills home and waiting for me... I decided to cut one in half but that didn't end well and I got one very small piece and one large. So I've cut the large one and now I have 3 pieces out of one pill. 😀 Well, so I'll proceed acc. to the size and I'm taking the smallest piece today. I'll try to cut the next pill in halves more neatly 😁 I think about doing this for about 2 weeks maybe... My surgery is in that time and I am to make a pause for a few days as advised by my MO.
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I just started tamoxifen 6 days ago... terrible bone pain, exhausted.. don't know what to do. Push through or quit tamoxifen? Does it get better with time? Then I read this: https://thetruthaboutcancer.com/truth-about-tamoxifen-part-1/.
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Hi everyone! I've been on Anastrazole for 3 months at this point and the SEs are levelling out. I'm having 3-4 hot flashes a day, but the duration is diminishing. The freezing flashes are the same but are somehow easier for me to manage. I just had my survivorship appointment with my RO and all is well.
I adore Domino and Tucker.
I hope everyone is doing well on their respective therapies. It does get better and I believe it is all with it. I'm grateful for these tiny pills that can help me stay bc free!
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Elizabeth, ask your dr if you can take 10mgs for one month and then slowly increase to 20mg. Our bodies need to adapt to anything new, which causes changes to occur. Magnesium 250 mgs will help bone pain as well as epsom salt soaks
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Hello....Wised, that picture is awesome! Pebbles, hope you are doing well and resting.
Salamandra, Johanna, and others, YES on the cold flashes, except mine are not flashes. I'm just freezing. Except when I have a hot flash. I am looking at new cars and have decided that a heated steering wheel is NOT a luxury and is a must. It doesn't help that we're going to have our first real cold snap in the Northeast this weekend.
I am one week and one day down on lupron/femara. I'm ok. All of the side effects are the same side effects I've been having for a few months, so they are the result of low estrogen not the pills. Just what chemo did and now the pills continue.
I'm taking sea cucumber, magnesium, and added liquid glucosamine - joint juice, yup, shoot me now. And I'm making sure I move and work out and do yoga. It's great incentive as I want to go down another 20 lbs. I'd lose wait pre cancer and am up a little bit from diagnosis. But have to say, I'm really no different than a week ago. Fingers crossed.
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Tigerlily that comment made me lol. The main reason I bought my car was for that feature My husband was all about horse power and engine size and the only thing I wanted was the heated steering wheel!!🤣😄😂
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Ooooh Calliope! Such a sweet face! She's like, what's this machine you're pointing at me? Where's the pets??
Thanks to everyone who said they're also dealing with weird cold stuff. It's interesting that it's so common but I'm pretty sure the doc never mentioned it.
I feel like my 'get up and go' is in lazy cat mode. I don't eeeevvvvveeeeeerrrrrrr wanna go back to work
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I dropped of my prescription for Tamoxifen today and will pick it up tomorrow although I am so not excited to take it. My oncologist was very short with me. I think I might cut the 20mg in half like was mentioned above and take that at night the first week just to try. I don't even feel like mentioning to my onc. I hate waiting to the onc for over an hour and then being rushed out the door 5 minutes after he comes into the room I know he's got lots of patients but it would be nice to be able to not feel rushed and have my questions answered.
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