Fall 2018 starting Hormone Therapy

Started Tamoxifen Thursday. It's only Tuesday and I'm really nauseous. Not quite postmenopausal. It's been one year without a period, but my onc wants me to be two years out. At that point, I will switch to Arimidex.

Meowmmy65, Sorry to hear you are having problems with nausea. I started taking Tamoxifen about 2 weeks ago, I know not long at all. So far, I have found that if I took it after breakfast I do not experience a lot of nausea. hope things get better soon!

Hello to all, I'm here because as I've finished with radiation last friday , I'm about to start hormone therapy next Monday. my onc said as I was having period before all that (I'm 46) that I will have norvadex and one shot of arvecap/month..

I'm seeing that nobody has tamoxifen and shots, am I right? maybe I should ask my onc but he is always in a hurry and I forget a lot of things I want to ask.

I 'm also considering to have my one ovary removed ( I removed my other 2 years ago due to endometriosis).

How are you coping with all that?

Hi all,

I started on Lupron (ovarian suppression) a week ago, and will be starting an AI in a couple of weeks. I'm 42, pre-menopausal, and was originally due to start Tamoxifen after chemo but I had a recurrence (they say ... feels like they left some stuff in there even with my mastectomy that stayed alive on my skin, but that's another story) so they switched me over to the more aggressive hormone therapy. I'm also starting radiation in a couple of weeks. Should be a stellar end to a stellar year (had my mammogram that started this all the day before the new year).

Lupron made me nauseous the day of the shot, and I've had several days of pretty steady cramps -- like menstrual cramps but steady. I'm also exhausted in the evenings but my breast surgeon thinks that's from the surgery I had two weeks ago. Anyone else find it aggravating how you just become a collection of unpleasant symptoms that are hard to attribute through this treatment? Feeling very grumpy about it all today. Glad to have this thread so I can hear more about your experiences too.

Hi all, so turns out I got a "hormone surge" on Lupron, which meant I had my first period since May about two weeks after my first injection. They had me wait to add the AI to a week after my second Lupron injection, which is coming up on Nov 9. The cramping went away after my period faded, and so far no other side effects so I suspect menopause hasn't kicked in yet (just waiting for those hot flashes!). Radiation starts for me tomorrow. It certainly is a roller coaster to get all these meds and hormones sorted out, but I'm hoping to hit some kind of normal, or at very least a pattern, pretty soon. Agree that taking notes is a great idea if you can manage, I can't always remember.

Just popping in to say Hi.  Been on Anastrazole/Arimidex since the end of August, doing pretty well so far.  Have "mini" hot flashes (I went through surgically induced menopause when I was 34 and those sweats were massive - I could stand outside in the middle of winter in a sleeveless shirt and be fine).  These new ones last about a minute, get hot really quickly and then sweat briefly, but not long enough to drench or ruin clothes.  Maybe they'll get worse, but right now they are very consistent.  I also am noticing joint stiffness after sitting/kneeling for any period of time - but that works itself out after a few minutes of activity.  (Of course, it could be age - I'm 56 - but I keep ignoring that fact).  I take Claritin every so often.  

Taking alternating D3 or low dose aspirin with calcium every day with the anastrazole.  I had a diagnosis of osteopenia from the bone scan before I started the pills, but honestly I had about the same amount with a bone scan about 10 years ago.  My MO will monitor it. 

I have not had any trouble sleeping from the anastrazole.  I am noticing some digestive impact (constipation), and using Colace as needed.  Also a little moodiness - trying to be aware of it.  Again, because this isn't my first rodeo with menopause symptoms, trying to read it and realize what's happening.  

I will check in occasionally, but did want to help share perspective on using Anastrazole - for me it is tolerable.  Best advice I got from Ruthbru from our community - keep moving.  That really does seem to help.

I started Anastrozole today. It will reduce my recurrence risk by about 50%. !!!! Wow. That is huge. I need all the % I can get, because my "Grade 3" part of my diagnosis is an extremely icky feature.

I feel every bit as fearful and worried as everyone else about the What If's and the possibility of difficult side effects. But, the benefits are huge, and I feel committed to doing this, and hopeful that I can manage it all okay. Geez, I managed all the rest of getting to this point, so I feel fairly tough. And vulnerable. And scared. And brave. And Not Brave.

My MO was very positive (about the huge benefit for reducing recurrence risk) and also candid in explaining side effect possibilities of starting the AI. He said that side effects don't happen much during the first month. That sometimes they crop up months later. That starting "every other day" wouldn't lead to a worthwhile improvement over just starting it every day and "powering through" whatever happens. That over time, 3-6 months, it's common for side effects to subside or become easier, as the body adjusts, so to not give up too soon. He will give me a 2-week vacation if side effects are horrible, and then a "challenge" re-start which often is a re-boot, of sorts. Or we try another one. He says that in his practice, he sees people respond differently to different AI's, and that he doesn't find that one is better than another for side effects, and I'm on a generic. Which he says doesn't have worse side effects, in his experience (many years, large practice) than the brand name/Arimidex.

AI & Bone density issues: I am 61 years old. I do have osteopenia--had a DEXA scan this spring, knowing that AI was in my Tx plan. Therefore, I will have a Zometa infusion (30 min) every 3 months. It will cause me to feel achy and icky like the flu for 1-2 days. It will help protect against bone loss, and it also will protect against bone metastases. I'll have the first one in two weeks, so we're not doing that at the same time I start the AI.

TAMOXIFEN: I took it for 5 years, age 45-50. It made my I-already-had-them hot flashes perhaps a bit worse, but I'll never know---maybe they would have been exactly the same. No other SE that I noticed. My treatment plan in 2003 CURED my bc. (I have a completely new cancer in 2018), and that 2003 Tx plan was: lumpectomy + radiation + Tamoxifen = CURED. I am grateful for the past 15 years of cancer-free living.

2018: My full treatment plan = a "90% chance of being cured." Tx: mastectomy + chemo +AI. AI is a ton more crucial to my Tx plan than chemo was, explained my MO this week. He empathized and said: Chemo was worse to go through, and had more difficult SE's, but AI is an even more important medication, to protect me from mets and recurrence. Basically, he did a big sales pitch, explaining why AI is so important to my Tx plan. 5 years? More? He said, "we'll see," and I think research is ongoing, but some recommendations are now for 10 years. My MO said, "We'll talk about whether it's 5 years or 10 years much later. Right now, you just have to get going on it." He does definitely want me to take it for 5 years. And longer if studies confirm that it's helpful.

I am very heartened to read the "Doing Well on Aromatase Inhibitors" thread.

Resources: My oncologist's office has an RN who is the one I call about ANY side effect from AI. My MO wants to solve whatever comes up, whether by OTC meds, or Rx or other suggestions. This RN triages patients' issues and consults with MD and then calls patient back with a plan, and stays in touch. This is how they handled chemo, as well; great support, and someone who checked in and wanted to solve anything that came up.

Supplements: I had my Vitamin D level checked at a recent blood draw and it's 41-- MO said that was fine. I usually take 2000 iu each day, but I've decided to up it to 5000 and try to get out in the sun more. Portland, Oregon now has several months of rain coming up, so that might be impossible! I also take Calcium, about 1200 mg per day.

Exercise: I lift weights (NO, don't get excited here--there is no Mr Universe-type definition of my muscles..... I do Old Lady Calm and Not Very Hyper weight-lifting) and I do 30 min of mat exercises (butt, legs, arms, hips, abs, back, stretches....lots of yoga and Pilates-type exercises) about 4 times a week (at home), walk 1-3 miles most days, get in the nearby city indoor pool for vertical "deep water exercise" or lap swimming 3-4 times a week, and usually get an hour of exercise one way or another each day. Once I'm stronger, I'll look for a yoga or Pilates class to add to my schedule, but at the moment, I am pathetically weak, and want to work up a bit more strength first. I got very weak and de-conditioned during about 4 months of chemo, (because I felt like crap and it was hard to exercise except for occasional walking), but now I'm back to being able to exercise each day. I'm retired, and exercise is the main thing I commit to each day. I exercise in the morning, before anything else. I often schedule 1-hr walking-dates with friends, and my husband and I do 3-5 mile walks or hikes usually both days on weekends.

NVDobie -thanks for that Vitamin D info. I'll back off on my huge dosing plan. I'll stick with 3000-4000 per day instead of 5000.

My MO and his RN explained that Tamoxifen is also on the list to use, if taking an AI doesn't work out for post-menopausal women (because of side effects). They said that for me, it would be "40% not 50% reduction in recurrence," so slightly less effective but still very helpful, and it's on the list of what they'll prescribe me if for some reason I can't tolerate the AI's. So, maybe it also reduces cell-level (not just ovary-produced) estrogen? I don't know the difference about how it works.

Not sure if this will help anyone but one of my kids is a personal trainer and he says the people who stick with exercise are the ones who start to view it as part ofwho they are. I mean I did pretty much nothing for 20 years but in my head now I’m a person who goes to the gym. Kind of weird after so much inactivity but I also don’t have an excuse not to work out. I still work full-time but the kids are all gone so I don’t have much in the way of daily commitments. (In fact I have plans tonight so snuck off to the gym at lunchtime. I’m there now!)

I had my second Lupron shot 4 days ago, and pretty sure it's working as intended this time around. When I got out of bed this morning I could hardly walk, I had so much pain in my feet and ankles on one side. It subsided, but knees have been creaky today.

Does anyone have tips for managing nausea? I'm assuming it's from changing hormone levels, it was bad after the injections both times and then I've been getting it in the afternoons after the second shot. I can call the nurse at my MO's office but my work schedule plus radiation right now makes it very hard for me to get a call back.

AI is due to start this weekend. Glad to hear from others that those SE's don't kick in right away, because sudden menopause is fun enough!

Be well.

RE: Nausea--so sorry you have this issue, 2002chickadee-I still have some Zofran left over from using it during chemo, and it's my back-up plan in case I need it. Anastrozole is nauseating for some people, but not for me, so far. I agree about ginger tea, but hopefully if the nausea is really bad, there's a way you can also get a medication to help.

Fatigue just hit me on Day 10. Am wondering whether it would help to start taking the pill at night, and also wondering how long this will last. I know that a lot of side effects recede in 3-6 months.

Hello everyone--my fatigue (which started a week or so after I started my AI) decreased after about 10 days, so I switched back to taking my Anastrozole in the morning. That's when I take Vitamin D and Ca, and it's easier for me to remember a medication in the morning.

My tastebuds are oddly numbed. After 1-2 weeks on Anastrozole, I started to feel as if my mouth had been burned by hot tea. Just wondering if anyone else has noticed this odd sensation? Not metallic like during chemo, just numbed.

I had my first Zometa infusion five days ago, and I felt quite sick the next day. Fever, in bed, tired, very achey (bones and muscles) as if I had the flu. Not nauseated, but I felt quite low and unable to do much. Then, the following day, I was really back to normal! So, that wasn't so bad, and I'll have this bone medication infusion every 3 months. I took Claritin for 4 days starting on infusion day, and that helped with the aching, and also an NSAID.

Zometa infusion: I was sick the day after it, much like the flu - tired and achey and couldn't do much AND I had horrible diarrhea. No nausea. Diarrhea was controllable with Imodium, and I took (generic) Claritin for 4 days starting with infusion day, which supposedly knocks down the muscle and bone aches. I want to share this in case it helps anyone else who might have a similar reaction to that particular medication. I also took an NSAID when I was super-achey the first couple of days after the infusion.

Since starting Anastrozole, I've had diarrhea quite often. I am starting a daily high quality probiotic and hope that helps. The diarrhea is not every day, and perhaps it's because of the Zometa at this point.

I do have a lot of achey joints, but I already did! I'm 61 years old, and I have some arthritis anyway in my knees and hips. I think that I'm creakier these past weeks of being on Anastrozole, but it's just a small amount worse, not impossible. Exercise, activity, or just plain moving around makes it recede from my awareness.