Starting/declining hormone therapy Nov, Dec, Jan 2018
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I don't think tamoxifen should put someone in menopause, under typical circumstances. I was told that it 'mimics' some symptoms of menopause, but I would not actually be in menopause.
Kudos to Egregious everyone who took first pills!
One day I kind of accidentally started singing to myself when I went for my tamoxifen, to the tune of Rain Rain Go Away. And it felt right so now I do a a quick silly "Cancer cancer stay away, away for another day," along with the pill in the mornings.
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Yes bombs away! Here we all go. At least we are in this together...definitely Strang
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Salamandra - the alarm I have set at 9:00 every night is a cheery little 6-note tune. I find myself singing along, “Take your tamoxifen." Makes it seem light-hearted.
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Hi Everyone,
This is Pill #4 - I'm taking it every other day (my choice - didn't mention to my MO since he's an *ss and wouldn't know anyway) I'll start daily Monday I think. I still have a slight sore throat, and feel 'heavy legged' after each pill just like after a chemo treatment. Usually wake up with a headache which goes away once I get up. EXCEPT yesterday I spent 24 hours in bed with a migraine. I have chronic migraines, but usually goes away with my medication (Imitrix injections) but this time it didn't work. First Migraine since on Anastrozole. Coincidence ?
Best of luck to all that's started our Pills. Hopefully one of these days it will be like taking a daily vitamin and we won't even think about it.
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I have a question - which I'll ask my Pharm MO - but shouldn't one have a hormone level test first before taking anti-hormone pill to see what dosage one should take? Sounds strange to me if one person has a high hormone level takes the same dosage as one that has minimal hormone levels. Maybe it doesn't work that way - but just wondering.
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rljes,
I have a colleague who had worsened migraines on tamoxifen. She worked with a neurologist and found a med that worked. So it definitely seems possible it's related.
They just do one dose for all hormonal treatment. It sounds like they don't have the studies to support different doses. It's not obvious that hormone level would necessarily correlate with the amount of drug needed, they'd need to show that with evidence. My impression is that doctors don't like that kind of research because you're basically splitting off a group of women to go onto a dose that you *don't know* if it's efficacious, when they could be on one that you do know works. But they are starting to do some research on lower doses with lower risk DCIS and I presume it'll filter up eventually. In the mean time, messing with the dose is 'at our own risk'...
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My update - day 12 into tamoxifen and fine so far! No joint pain, no more nausea, no hot flashes, no headaches... still at the 10mg dose and I'm taking it daily vs. every other day. Just hoping this ride continues to be smooth when I go up to the 20mg dose. I am exercising and stretching more, just a moderate 1/2 hour a day of dance or yoga or abs or weights or walking or some combination thereof. Nothing too strenuous. Just movement and strength training plus keeping up my flexibility.
Salamandra and Wanderweg - love that you do the positive singing with tamoxifen. I've been keeping up my "dance-a-thons" too! Figured if we're going to be on this journey for 5 years, might as well make it a good one.
rljes - The 20mg dose is because that's what the latest studies are based on. Can you believe they used to prescribe 40mg until a study came out showing that 20mg had just as much efficacy as 40mg but with less side effects? I think some studies are underway or some small ones have been done to test 5mg and 10mg doses, nothing big yet, but who knows, years from now the prescribed amount might be 10mg! They just need some large scale study to prove it out for doctors to adopt it. If they are doing a trial for 10mg doses, sign me up! (oh and hello to adorable Truman!)
OTmom - best of luck with the dexa scan, hoping it all comes back clear for you.
egregious - congrats on starting and good luck with no to minimal SEs!
Nomadd - hope you're feeling OK after the lupron shot.
HPFULL - that is weird that the RO said tamoxifen would put you into menopause, that's not always the case. In fact, women have gone on to have children after completing their tamoxifen treatment, and people have spoken about getting their periods back after tamoxifen, so that is definitely not menopause. There is also no shot to shut down your ovaries with tamoxifen, that's more something if you were to take an AI when you are pre-menopausal.
Here's a useful info. PDF I found: https://www.cancer.ie/sites/default/files/content-... - "If you are premenopausal, your periods may become irregular or stop. They might return once you stop taking Tamoxifen..."
sugarmaple - hope the 5mg dose works much better for you. If you tolerate it well, will they slowly increase? Maybe it will be better for you this time letting your body get slowly used to it. Here's hoping!
GreenHarbor - I'm also a couch potato at heart! I really wasn't exercising much until I started the tamoxifen, which I think motivated me to move more because I just want to avoid the joint pain and blood clot SEs and I know moving helps. Even though I don't always feel like exercising when I start, I never regret it when I'm done! Getting started is the hardest part though.
AliceKO - I'm only getting started so hard to say, the only link seems to be you stopping the acupuncture and maybe it was helping? Did your diet or exercise regime change or anything like that? Were you premenopausal when you started? If so, might be the body naturally going into perimenopause or menopause, which may or may not have to do with the tamoxifen.
kmart - that's so hard, and the worry I think we all have. Do you have the biopsy results yet? Please keep us posted, we're all here for you!
carebearzzz - I've heard some people had trouble sleeping with tamoxifen and they took magnesium with it and that helped. For me personally, I'm actually sleeping BETTER on tamoxifen. It's weird but I welcome it as I was more of a light sleeper before.
Michelle_in_Cornland - thanks for continuing to follow along, and oh my Theodore and Thaddeus are the cutest! I'm doing well on tamoxifen so far by the way, 12 days in an no SEs other than the day 2 nausea which I haven't had since (possibly because I'm eating dinner with tamoxifen now).
LPlibrarygirl - the cheering section has now turned into the pups dancing about with me when I work out!
And for the positive vibes, here are Domino and Tucker, freshly groomed!
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I've been taking Aromasin for 17 days now, I am still on half pills. I have cut several pills, but never managed to get even halves. So I was taking the smaller halves first and now I am on the larger halves. I had my BMX with expanders a week ago - so I think I don't have to push for the full dose.... I need to give my body some time to heal and to adjust to the Aromasin at the same time. My MO was OK with the half dose for some time. I should see her on Thursday/Friday to get my Zoladex as well as Herceptin.
My poor 110pounds body... When I write it like this, what a beating it is receiving - surgery, Zoladex, Aromasin, Herceptin and all this 6 weeks after chemotherapy.
I know it's quite usuall here, it has just striken me now, what the body has to go through. I am happy to have a husband to care for the kids and especially to clear the heavy snow fall ❤️😀
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Pebbles, I love their expressions in the top photo!
I wonder if your sleeping better is related to the exercise? A lot of people say that helps for them. But really who knows. It could totally be the tamoxifen. Sleep is related to hormones too. In any case, so good to hear it's smooth sailing for you!
I'm jealous - sleep has been my nemesis for many years. I'm currently doing a brand new just approved dental appliance system to reshape my jaw to help with my airways to fix my sleep disorder. It was funny, I paid the down payment on it after I knew the tumor was malignant, but before I'd heard from a doctor that it was early stage with a good prognosis. (I'd really scared myself because of ignorance and family history and being nervous to google). The appliance system takes years to work, and somehow plunking the money down felt like making a bet on my longevity, and it felt affirming just to do it. Least painful $1,000 I've ever spent. I really hope it works!. But I'm pretty sure that all is only part of my sleeping issue. So I sent off for some magnesium. Crossing my fingers it will help.
Jaboo, I've thought of that too, though I have a lot more weight on this body
We put our bodies through a lot. I think it's good to recognize that and thank them and be loving. I'm annoyed at my body a bit because of all the weight I've put on over the last couple of years, but I'm trying to reframe that. It's gotten me through everything I needed to get through and it's taking all the stuff I throw at it, and if it wants to be a retro zaftig 16/18 instead of a svelte and modern 10/12, well so be it. I will get it clothes that feel and look nice and surround myself with people who think I'm just fine as I am.On Thursday I'm meeting a GI doctor at Sloan Kettering to talk about the gastro issues I've had since starting treatment (basically ridiculous acid/heartburn). I will update if he says anything that might be interesting or relevant to others. Rad onc denied it was radiation, rad nurse affirmed that she hears it from lots of ladies doing radiation, and med onc said it could be tamoxifen but it would be a rare side effect. Either way, it's definitely an (extreme) exacerbation of something that's been going on with me longer term, so I figure it can't hurt to get a specialist's eyes on it, someone who's inclined to take it seriously.
Ok sending good vibes all around. To work! (:()
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rljes..Yes! I have been saying that hormone levels need to be checked for a long time on these boards. IMO its crazy that these powerful drugs are given blindly. At the very least hormone levels should be tested before, during and after anti hormone treatment. The main reason it's not done is that MOs know very little about female hormones. You really have to see a naturopathic doc if you want your levels checked. Good luck to all navigating this complicated disease.
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Just re: sleep, I'm crossing my fingers and whispering so I don't jinx anything but I think I've been sleeping better too. This past weekend I slept close to nine hours at night + took a nap both days. Whatever the cause, I'll take it!!
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Pebbles! Thank you for your word of encouragement for me and all these other gals! I’m picking up my prescription today. I’ll have to try and sing ‘tamoxifen song’ some of you gals are doing...in order to take it 😊
I hope everyone has a lovely Monday!
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I've taken 10 mg per day for a little over a week and haven't noticed any side effects that can't otherwise be explained as a result of perimenopause, treatment, residual muscle tension from the past months, extreme cold, or normal aging. I take it right before bed, so sleep through whatever happens in the next few hours. Last night I was super tired, so went to bed about two hours early, then woke up at 2 AM with a mild headache and feeling really, really hot. Drifted off, experienced the same thing around 4 AM, then went back asleep again. When the alarm went off at 7 my headache was gone. This seems encouraging. I'm going to stick to the 10 mg dose through the end of this week, then next week alternate with the full 20.
Those of you with tamoxifen songs and dances are cracking me up! I haven't come up with one yet, unless muttering "rats, I forgot to take the stupid tamoxifen" followed by crawling out of a warm bed to go get it counts as a song and dance. I've done that twice so far.
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Just chiming in here. Started zoladex/anastrozole on December 21 so I'm about...five weeks in? Maybe six? I'm having some lower back pain but it's not clear if that's from the AI or because I've been getting back out trail running. Getting poor sleep, I'm pretty sure that's the anti-hormonals. I've been having hot flashes for a year, no change there. Other than that, I have some word recall issues, which I've always had but it seemed to have gotten really bad after I started the AI but I think it's gotten a little better since then. It seems to be having little to no effect on my sex drive so far. I think my estrogen levels were pretty low already after chemo which may be why I've had such little trouble with it.
MO is going to send me for a scan for the back pain if it doesn't subside in a few weeks
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Pebbles, I am so glad that you are going slowly. There is so much to be learned about slower introduction of these medications. Having a plan, being in control, and taking ownership of this journey is so important. I say that to myself every day, when I take my split dose of Tamoxifen at 8pm, and 10pm. My body actually feels achy towards the time I should be taking my meds. Once taken, it is fine. I am going to try to have my local university hospital, consider doing a survey of patients on Tamoxifen, to see how they started, and/or did initial side effects scare them away. I am very passionate about slow introductions of anything into the body. It is careful, considerate, and respectful of our bodies, to minimize strong side effects. Keep up the good work!!!!
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Jumping in for a quick one week Tamoxifen update...
Started at full 20mg dose last Monday, I’m taking it in the morning with my other meds and vitamins. Somehow swallowing it down with a handful of other pills makes it less scary! Anyway the only consistent thing I’ve noticed is some nausea in the mornings after I take it but it’s tolerable. I drink sparkling water mid morning which always helps a queasy stomach for me. Other than that I am ok, maybe some dizziness/fatigue here and there but nothing major.
I don’t sing when I take my pill (lol) but I do keep positive thoughts each day and remember that I’m fighting the cancer every time I swallow it. I got a new GYN today who is sending me for an ultrasound to get a baseline on all things uterus. I feel like I’m in good hands.
Keep on singing, ladies! 😊
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Ive been on Tamoxifen about a month now. I started with halves, then did whole ones every other day, now it's whole dose every day for about two weeks. I'm doing fine. I have joint aches, but the MO and PCP both tell me it's because I'm no longer taking Motrin. Or as my soon-to-be fired PCP rudely said, "Get used to it. That's how you'll feel now." 😠 She started me on Atorvastatin in December, and guess what? I just re-read the package insert and it lists "very bad joint pain" and muscle pain in the side effects. Now why wouldn't she think of that possibility?
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Hi Alice,
Will they let you take CoQ-10 for muscle aches? Husband takes atorvastatin and the doctor insisted he also take CoQ-10.
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Hi egregious - no, nothing was mentioned about that. I'll have to investigate to see if I can take that. The whole appointment was spent with the PCP entering crap in the computer. They're not on any system that's tied into MyChart so she was only vaguely aware of all I'd been through last year. I was basically dictating my recent medical history while she typed. Then at the end, she dug a little deeper and found emails with all the details from the other doctors that she hadn't read. Good thing my blood pressure had been checked before she appeared!
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Alicebastable....ooh my blood pressure went up reading about your PCP experience too! Horrible!!!!! I think there are definitely some supplements that could help with the achy joints. I’ve not found many MDs who are super knowledgeable about supplements, so you may have to do your own research. That statement about “this is how you’ll feel now”...unacceptable!
Ugh!!!!
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Good afternoon all. First, I'm so sorry to all of you that have asses for MO's and PCP's. All of my doctors have been great. I hope some of you get the satisfaction of telling them to shove it.
Pebbles and so many others, glad to hear you are doing well on Tamoxifen. I am almost a month into Lupon/Femara - I have my second shot tomorrow - and so far so good. The side effects are the same I have been experiencing since mid-way through chemo for the most part. The hot flashes are a little better, less frequent and less strong. The joint pain is better though my butt is killing me the last few days...that must be gym/yoga related...and sleep comes and goes. I sleep well, it's just a matter of how many times I wake up at night. I still feel a little "off" and have some low level anxiety. But I don't attribute it to the drugs at this point.
Salamandra, I am worried I am taking too much magnesium. The internet is not helpful between 450 mg and 5,000 mg (that's too much!). I'm seeing my naturopath next month for testing, so will know more then. It's definitely helped me though. I also have a spray that helps my knees and sleep.
Has anyone had a Zometa infusion? I have one tomorrow - to prevent osteoporosis. I'm a little nervous as I fly to Hawaii on Thursday. It can cause flu like symptoms. I believe they can do the infusion over a longer period to avoid them, so I'll talk to the nurse tomorrow. It's a work trip, but I'm going early to ease into the time difference and enjoy a little sun.
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is anyone feeling up and down and emotional? I can't tell if it's the radiation, the surgery, the cancer or the Tamoxifen!0 -
checking in-HPFULL...I think you have every right to be feeling up and down and it is probably a combo of all the mess you have gone through in the past few months. I’m probably a little more down than up right now myself, but reminding myself daily that I am not yet even 3 months from my initial diagnosis. Hugs...give yourself some grace and time.
Tiger lily I am waking up too but able to go back to sleep so I’m ok with it. Hope your pain gets under control, maybe a little less yoga? (Yoga would make me hurt in all kinds of places haha but I am not flexible).
Time for bed!
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Tigerlily, as a fellow Mass. resident, I am jealous of your trip to Hawaii. We haven't had it as bad as the midwesterners, but a little sunshine and warmth sounds lovely now! I have osteopenia, so did some research into possible drug treatments. One suggestion I read about Zometa is to take an anti inflammatory the day of the infusion- start in the morning before you even get to the doctor, and continue for 24 hours. Also drink plenty of fluids. People tend to feel the worst after the first infusion. HPFULL, I think it's normal to feel up and down. We have all been through a lot! I'm a little farther out than you from surgery and rads and some days are easier than others. Take things a day at a time, and be kind to yourself. Pebbles, Tucker and Domino are adorbs after their spa treatments! To any midwesterners that read this, please be careful and stay warm!
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HPFULL--I really think I get a little SAD every year around this time, which I think has been contributing to my general blahness. Post-holiday is just never my favorite time of year. Seems like January is just something we have to get through--cold, long, boring, dark, . . . I'm actually pretty proud of myself this week--have done a little cleaning/sorting/throwing away of stuff I haven't gotten to in months (years?). I also try to appreciate every sunny/not freezing day. I think everyone's mood starts to improve with more daylight/warmth.
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HPFULL- great picture! I, too, have been up and down. It's not an SE from an AI because I haven't started yet and it can't be radiation because that ended on New Year's Eve! For the first few months when I was getting all kinds of crappy news I was just fine. I know, like IngerP, part of my problem is SAD and I have a light box to sit in front of every day. Today I was able to walk outside in a bit of sunshine and though it was in the 20's it felt so good. I do take Zoloft but my doc says walking is as important as the medicine. I cried on and off all day on Sunday and I am not sure why, other than a lack of sleep. My sleep is interrupted every night at two hour intervals. And when I wake up my frozen shoulder is hurting me. I think the most sleep I get every night is three 2-hour shifts and it's frustrating. Luckily, I am only working one day a week right now and so I can have some pretty lazy days. I will check with my MO next week. I've been hesitant to take any supplements until I check with my doctor. Meanwhile I am rereading Mindful Way Through Depression by Williams, Teasdale and others. It's a great book and comes with a CD with some guided activities.
Tigerlily, I hope your infusion went well today, with no SEs, especially ones that would interfere with enjoying your trip. I do hope you get a break from work to soak up some sunshine in HI. I also hope your plane can leave BOS tomorrow with all the predicted cold weather. Idk if jet fuel has any temperature restrictions, but I remember diesel fuel in our school buses freezing up in past years.
Alicebastable, what a frustrating appointment. Don't you wish you could say something like 'I'll let you catch up on my medical history and come back for an appointment another day'. I wouldn't ever say it to my doc, but I wish that I was assertive enough to do so! I hate the typing on the computer the whole time too.
rljes and dtat, I've written several posts about the same hormone therapy dosage question. How does one size fit all and I wonder if there are any studies in the works to look at estrogen levels and meds more closely.
Sugarmaple, did you start??? Hope it going well so far.
hapa, Pebbles, wigging, PurpleCat, and others...I hope you are all doing well with your hormone therapy.
The deep freeze is headed to New England tonight! I have already gotten a weather alert on my phone for the arctic cold. The weatherman is saying that with the windchill factor tomorrow morning will be about -21 in my town...and then in the 50's by next Tuesday.
Stay warm, stay strong.
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Hi LPLlibrarygirl!
Wow-you have it coooooold where you are! Stay safe and warm-that arctic cold is something else!
I had my new prescription/new pill cutter ready to go-but had to get a ‘tight tendon/slightly pink, subtly swollen spots on my left arm checked out. My breast surgeon (she’s the best) sent me in for an ultrasound-to rule out a clot (no clot found-yay)!
She’s got me on hold for the tamoxifen restart. I’m glad to be reading about how well most of you ladies are doing with your treatments. Way to go!
Take care out there!
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Sugarmaple- Your BS sounds great! So glad she made sure that you were checked for potential blood clots. and that everything came back good.
Libararygirl- I am so sorry about not being able to sleep and a frozen shoulder on top of it. No wonder you feel down. being sleep deprived makes everything so much harder, and this is hard enough without those things sprinkled on top. I will need to look into that book you mentioned. I go to see my PCP Friday so I might mention to her about the depression I have been experiencing. That is beyond cold weather you are having there! Sending you a gentle hug, and warm thoughts.
Ingerp- I think you are right about the time of the year playing a part. I am glad tyou are doing well and organzing and cleaning. I always love when I do that; I feel like I really accomplished something
Tigerlily- Aloha! I hope you have a blast in HI. I know it's for work, but hopefully it will be fun and relaxing too. Just the beautiful, warm, tropical air there calms me down.
Alice- Boo to your PCP argh!
I started on 20mg for week 3. It was by accident when I took a whole pill instead of a half from the bottle and didn't realize it until I was about to swallow it. I figured it was a sign and I should just go with it. So it's 20mg Tamoxifen and day 7 of RADS.
Hope those of you in that crazy polar vortex and keeping cozy and warm.
Sending a virual hug
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It would be easier to fire that PCP if I didn't have an insurance plan that requires a referral from her for every other doctor I'm seeing. I'll have to check with my insurance to see how to get around it, or time it just right.
Librarygirl, I've also been having shoulder problems. It seems to have been a combination of moving my right arm out of the way during surgeries and the radiation position - plus the really painful pneumonia shot. And I already have arthritis there. When my Mom had BC, she was 85, and her shoulder was a mess after she was done with radiation. She'd have to use her other hand to lift her arm after that, and had to stick her left hand through the steering wheel to start the car, since she couldn't turn the key with her right hand anymore. It must be a common, and unwelcome, after-affect. Boo hiss.
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