Bottle 'o Tamoxifen

Interesting GYN appt today. I went in for a hysterosonogram to check how things are going with my uterine lining after a year on tamoxifen. After 5 painful minutes of trying to get the catheter tip to the small empty space in my uterus to inject the fluid, she stopped. I had a bigger screen in front of me the whole time. My lining was incredibly thick, so much so, she couldn't get the tip to the open space. Since I'm not showing any signs of bleeding or pain, and this wasn't originally ordered by my dr,( it was just a follow up to my request,) she said I could either do this again with sedation (no thank you!) or wait 6 months and do a regular vaginal ultrasound. I picked the latter. I plan to lay off the tamoxifen for about 6 weeks until I see my surgeon. My surgeon is the one who orders my mammogram and I plan to start it again before that since tamoxifen helps makes my breasts less dense. Then I'll go off of it 2 months before getting the ultrasound.I'm trying to keep a balance of healthy breasts and a healthy uterus. I shouldn't have to choose between the 2!

Hi all -- just wanted to update on how things are going for me on 5 mg daily Tamoxifen.

It's not good. I have a long history of multiple chronic illnesses with immune system issues and was super hesitant to even try Tamox. But my new MO offered some good points and info, so I gave it a try. Have been on it since the end of March.

The SEs started within the first 2 weeks or so. Gradually building more and more.

My fatigue is now crushing to the point just taking my dog outside for a short walk is monumental. Dishes sit undone for days, as does the wash, simply because I have no energy and the pain is intense. To the point I cry most days just to move around. I literally feel like I am 90 years old. No offense to anyone who is that age, but at 41 it's made the chronic pain I already before cancer, reach the point where I have had to ask my primary for extra pain meds. Ever since starting it I cannot drink any alchohol, otherwise I feel like I've had 2-3 bottles rather than a small 4 oz glass of white wine. My migraines have gone from being manageable and under control with my prior rx meds, to raging and uncontrollable. Not to mention my depression and anxiety are skyrocketing as well. Sleep is no longer restful but pain-filled and broken, when I am able to actually sleep that is. I also have weird "red circles" on my lower legs which my MO has never seen before (lucky me, but I'm used to being the zebra). They don't itch, hurt, aren't' swollen, or raised, they are smooth like the rest of my skin. They last for a few weeks and disappear, while others appear in other spots and fade out again.

It's made my quality of live nearly unbearable. I feel like I can't do the bare minimum anymore and it takes me to dark places, like back to when I was severely ill in 2015 and had to move home with my folks to take care of me. It's awful.

Acupuncture doesn't help with any of this, even though I've had great results with it helping my Breast LE/Fibrosis and Costochondritis.

Anyway, sorry for the long ramble. I'm just to the point where it doesn't seem feasible to me to continue on with this, even at 5 mg. Which, I am SOOO very thankful my MO started me at that low dose. I can't imagein where I'd be if I'd taken the 20mg.

I saw my MO this week. The plan is to try adding Gabapentin to help with the pain and insomnia. If this doesn't provide relief in the next 2-4 weeks (if I can hold out that long to give it a try) then she said she would suggest swapping out brands of Tamox (as some of you have mentioned has helped with your own SEs). If that doesn't help, the option after that is medically induced ovary shutdown and/or removal. Uggggh.

I just really am not sure if I can make it that long on this at this rate, but I will do my best.

So, has anyone had luck with Gabapentin helping with the bone/joint/spine pain? If so, when did you notice it begin to help? Did it help with other SEs besides pain?

Thanks in advance.

Hugs and healing to all. I am so thankful for this forum.

Nancy-- funny you should mention sciatica flaring up again. I have felt a pain pin my hip when I lay on that side. It's been a couple weeks and I thought that it was the joint pain everyone talks about, that maybe it's finally catching up to me. But it seems it's only on that side and last night it was almost a dull pain shooting down my leg, again, only if I laid on that side. Sciatica was my first thought. I'm taking at least a month off T and will see how the pain is. I also just bought Rivitabrow, my brows have thinned so much this past year. I'm going to take pics every 3 months to see if it's working. I know my hairline has gotten tremendously worse in the past year!

Spoonie, I am sorry you are having such a miserable time on tamoxifen. I will be two year this coming August and the side effects now are much less than in the beginning. Well. Mostly. There seems to be an ebb and flow to it. Before, the joint pain in bed at night was very bad. Moving in bed was difficult and hurt. I still get that, but not as much. The leg cramps seem to have eased off but they do come back when you least expect it. Hot flashes come when they come. I guess I'm saying the picture isn't all rosey, but it did get a bit more tolerable. The hair loss is annoying though since my hair ends up everywhere, including everything I cook!

But as to not getting the laundry and dishes done - I have a theory. (based on nothing). Tamoxifen suppresses our female hormones. So maybe our male hormones become more dominant. Maybe, in some small ways, we become more man-like. My husband can be surrounded by dirty laundry and dirty dishes and not do a damn thing about any of it nor feel that he has to. It does not affect him. Gritty floors, dusty furniture, scummy toilets, no effect. Nada. Like you, I find the burden of keeping a house up an increasing struggle. Tasks I used to fly through without batting an eye have become uphill battles. Then I realized, this is not a battle over lack of energy or ability. This is about not giving a shit. This is about thinking I ought to care about all this when I just don't. So there are dirty dishes. Who cares? I'll get to it when I get to it. This is NEW for me. I have been very driven, very OCD about cleaning. Now? Meh....who cares. I think the struggle you are having is with your own expectations more than the actual energy. Because for the things I like to do, I have all kinds of energy. Like drinking coffee. Man, I could do that all day long! While I sit on the sofa and watch the dirty dishes go nowhere. So you might be more able than you think you are, just not as motivated, which makes perfect sense.

Salamandra, the manufacturer on the label said Teva. I haven't picked up the current scrip yet.

Runor, I think you're onto something. While I'm not sure it has to do with male vs female traits, the "I don't give a shit" feelings are real. I have attributed it to not getting enough sleep... been a battle for me since menopause...and getting older. I just don't have the stamina I used to have. I had to sit down after vacuuming ONE room last week. I don't want to do anything or go anywhere. It's either because I'm tired or in pain, but it's also that attitude. I too have energy for the few things that I want to do. That really hasn't improved much since off the tamoxifen for 4 weeks, so I don't know.

I'm with Salamandra... I want the protection of tamoxifen but I don't think I can live with the side effects, because the quality of life sucks.

Runor -- LOL @ male traits via tamoxifen! That gave me quite the chuckle! I can see how that theory works in general, makes complete sense. Wish it were true for me as I have no energy for the fun things I want to do at all. I would love to go to a movie but even that is too much. I'd love to have my parents come visit but I am too exhausted to even talk most of the time. It's just ALL costing too much. I do think you're quite on to something though about the new energy level making me face my own expectations and come to the conclusion that yep, the dishes, the laundry, the errands, that x y z, aren't nearly important and can be survived through, as last I checked no one has died from not doing the dishes. LOL I'm sure my exes can attest to that fact. Hahahaha. Thanks again for the laugh and the support. I'm clinging to the hope that with the Gaba on board I'll have energy to do the things I love again.

hi all, I am still trying to decide what I'm going to do

I stopped AIs at Easter and I'm feeling better, but somehow feel like I “should" be taking tamoxifen if I'm not going to do AIs

Spoon or, I'm sorry you are having such a hard time. That's what I felt like on AIs

I couldn't keep on that way

Nancy, if it is your piroformis, lie on a tennis ball on that sore spot, it will help break it up

My favorite PT of all time is in the Milwaukee metro area if you need a PT

Finished two weeks at 5mg everyother day, started on 5mg everyday this past Sunday. Will stay two weeks at 5mg a day before deciding what to do next. Don't believe any new SEs are with me, but still suffering from SEs of Arimidex...mainly joint pain.

The 10mg pills cut okay, but they are soft and tend to crumble . My Rx is for 10mg a day...will see.

I have my first flying business trip leaving this Saturday, so have compression stockings ready.

I thought Arimidex SEs were bad...but DVTs, wow! TT

rjes and TimTab I find that Tamoxifen is tolerable as far as joint pain I have heard from too many about the pain from Armidex.. Even though I am in menopause, I told my onc that I would only take Tamxoifen. I have been on 10 mg daily for 6 years now and may ask my onc to lower it to 5mg. Seems like that is the going tolerable dose. I am tired most of the day. The hot flashes are what are most annoying.

I am sorry that all of you are having the same problems I am, but it is comforting to know I am not losing my mind!

I stopped AIs 5 weeks ago and I still have bouts of sever depression (but it comes and goes a few hours a day) and I still cannot grasp anything with my hands. Someone at my BC yoga class said "what is the use of oppose able thumbs if you can't use them!" LOL

I am thinking I will ask my MO about Tamoxifen.I have already had my reproductive organs removed due to endometrial cancer during my BC discovery. The fun never ends! Thanks for all of your support/advice!

KM47--I've posted before so you might be able to look back but I did 5 years on Tamoxifen then stopped due to my BCI results that showed no benefit from continuing. I had visions of the muscle and joint pain disappearing within a month and the fat just falling off my body as I walked down the street but that's not at all what happened. Funny enough for me I noticed a big difference in how I felt at about 9 months! My pains went away and I started to lose weight without doing anything different, albeit I was pretty diligent about watching my weight while on Tamoxifen. My MO told me that most of his patients gain on average 40 pounds while doing their 5 years and I was determined not to let that happen, especially when he told me that having a fairly normal BMI will reduce your risk of recurrence by somewhere around 40%! I ended up gaining about 15 pounds but at about 9 months it slowly started to come off and I'm now down about 12 pounds since January. I had a total hysterectomy during my 5 years so I wouldn't know about the periods returning. I can say my hot flashes got better shortly after stopping Tamoxifen, then when everything else started to improve, the hot flashes got worse. Now that I've dropped some weight, they are better. I think that spending 5 years letting that drug wreak havoc on your body means it will take some time to readjust and you just need to be prepared that it won't happen overnight.

when you have other issues, it's hard to tell what is from what. Ses can start or end at any time. At first I had frequent warm flushes. Now it's been a year of 3 years that it's not often. I'm the type if I feel there could be benefit then I'll deal with the ses unless it becomes debilitating.

I have been on Tamoxifen for one year and the main side effects I had in the first month or two have returned with a vengeance in the past month, namely hot flashes and leg/foot cramps. What's up with that? I'll turn 51 in a few weeks so maybe I'm entering real menopause? The hot flashes are occurring 1-2 times at night and again 1-2 during the day, every day. Only my left leg/foot cramps up, which is both strange and unfortunate since I drive a stick shift. *sigh*

ReadyAbout I have to agree that my hot flashes increase in the summer months. I use an activcool wrap you can get at sporting goods stores. Also hand held fans. And yes I do get foot cramps as well. Not too sure why.. At night I turn down the air conditioner if I wake up with them at night. In the fall it seems there are less of them.

Molliefish - doing the happy dance for you! Yay you is right!