Bottle 'o Tamoxifen

Astyanax, My SE,s were very similar to yours. I too took ALs first and was sure I was being poisoned. The pain in my bones & muscles was excruciating. I have both spinal stenosis and osteopenia. My onc switched me to Tamoxifen and the fun began. One thing I will give Tamoxifen credit for is making daily life interesting. From month to month I never know what the SE of the day will be. I didn't have depression as such, but anxiety and sleeplessness have been brutal. Three nights in a row without sleep & I become a crazy 😜 woman. My Primary care Dr. put me on Xanax. Which didn't work. My Onc switched me to a med called Trazodone. It is not habit forming and has typically been used for depression. She rx'd it to calm my anxiety and help me sleep. I take it at bedtime when my anxiety has been high and I sleep at least six hours straight. I still have muscle cramps if I do too much physical work but life is MUCH better. I also found that Tamoxifen increased the effectiveness of my Blood Pressure meds. I was too weak to walk. My Primary Care Dr. worked with me & lowered my meds. I am now able to work in the yard again and grocery shop without something to lean on. Over time I've been reading as much as I can about treatments and side effects. There are sites where Claritin is advocated for muscle/ bone pain. I tried it and discovered not only did it help with my seasonal allergies, but for me also does help with muscle pain. We just have to be our own advocates, work with our doctors as best we can, and give ourselves permission to have tough days. A virtual hug is coming your way with assurances that there will be be some better days to come. PS.... I find following too much news on the TV increases my anxiety & sleeplessness... not Tamoxifen... but World Affairs😳😱

I just wanted to thank everyone for the encouragement. I'm trying to stick it out and see if it's a transient side effect.

Hey CarrieSt,

I was on Wellbutrin for years too. My medical oncologist gave me a choice of whether to go off the it and take tamoxifen, or whether to use ovarian suppression plus an aromatase inhibitor, so I could stay on the Wellbutrin. I decided to come off the Wellbutrin and go on Lexapro instead. So far, that’s working out fine. I think that if I had had a more aggressive tumor or PR negative I probably would have gone for the OS/AI. It was comforting to me to know that that was an option in case the Lexapro did not work out.

My cancer center had a psychiatrist I could consult with to change my meds. And that was very helpful. He is still seeing me until I get everything settled, and then I’ll go back to my old doctor for ongoing treatment once everything is sorted. It’s really helpful to know that he’s an expert on all the drug interactions that are relevant to breast cancer, and since he’s part of the Cancer Center, my insurance covers him, which can be hard to find. Maybe your treatment center has psychiatry?

Paco - I also quit tamoxifen after 7 months because I developed ovarian cysts and now have high liver enzymes. I am seeing a GI doctor to address this issue as I am now having swelling issues and a small amount of blood in my urine with no other signs of UTI. If it isn't one thing its another. Jada

2.5 years of Tamoxifen I still get hot flashes but not as intense or frequent. I find that if I exercise daily, the are much less. Also not drinking alcohol/wine has helped a lot. That said, my female docs highly recommend a natural plant based pill called Relizen...made for flower pollen out of Sweden and used by European women for years.. It's non hormonal and okay with Tamoxifen. Also non-prescription and relatively affordable.

Hope it helps! Hot flashes are the worst!!

Maybe about a year into Tamoxifen they lessened -- although by then I was really focused on lifestyle like daily yoga and/or walking, no alcohol and plant based diet. My surgeon published a book called the Breast Manual (Dr. Kristi Funk) and I read it and started following her suggestions on breast health (and non recurrence) and all those things were part of it. So, not sure if less intense hot flashes were adjusting to tamoxifen or the changes. I kinda think the lifestyle changes as I believe that I lowered my circulating estrogen naturally-- so less high/low swings of estrogen which is what they think may trigger hot flashes. Before, I used to get them every how and literally sweat dripping off my brow-- so embarrassing when in work meetings ! People asking me if I was okay...thank goodness that is over!!

Princessbuttercup, I’m in the same process, waiting on my bloodwork now. Not convinced that I want to switch because it seems like the alternative seems to have more or worse side effects but I know that can be different for each person. My MO said it would only be 5 years on this other med though so that would be nice. Tough decision. The devil you know kinda thing

Is it normal to have muscle twitches with tamoxifen? I’ve had them for years and I’m accustomed to them, in my eyelid and other places, but they’ve gotten about 10 times worse since I started this prescription. I’ve been taking magnesium to fight off leg and foot cramps, another long time symptom made worse by tamoxifen, and the twitches and cramps seem worse when I don’t take it, so I guess it’s working. Now I just happened to look in the bathroom mirror and noticed that I can visibly see my pulse in my neck. I don’t remember that ever happening before, although I’ve seen it in my stomach on occasion. Can anyone else relate to these weird things?

Hey CarrieSt.,

My antidepressant (Wellbutrin) was contraindicated for Tamoxifen. My MO offered me the choice of doing ovarian suppression and an aromatase inhibitor if it was important to me to stay on Wellbutrin.

I ended up switching to Lexapro and starting Tamoxifen. I gotta say, the lexapro has been great for my mood.

I will say that I had a lot of short duration side effects when I first started the tamoxifen - they would last a couple of days and then peter out. The one side effect that is still bothering me hadn't even started until about a month in.

So it might be worth either playing with your depression meds or trying to stick out the tamoxifen or both. I was told my a friend who was on it that she used medical support to manage bothersome side effects during the first year, but after a year or so her body seemed to adapt. So my plan is to try to stick it out for at least a year. After that, my plan B is OS+AI. I think my plan C would be just stopping the endocrine therapy. That scares me a lot and I'd rather not, but it is always an option.

I woke up 4 times last night. I don't think it was due to the Tamoxifen but it did make it difficult to get back to sleep as I was hotcold. In other words, I'd be cold, and then I would be hot before I was done being cold.

Astyanax, Glad to hear you are able to get some much needed sleep. Driving an hour to work on little or no sleep sounds scary! The bone &/or muscle pain just seems to stalk us... My DH and I try to work together to do projects around our property instead of going to a gym. We pressure-washed our dock, put on a new coat of protectant and replaced any wood that was iffy. As a team, we finished the job. Then I was too sore to do anything else for days! I thought about switching from 20mg of Tamoxifen to 10mg.... just to see if the side effects lessen, but mentally it scares me to lower the dosage. I have too much fear of a recurrence. Let us know how the CBD oil works. I've been considering trying it.

PurpleCat, Don't know if muscle twitches are a SE of Tamoxifen, but they are a possible SE of a magnesium deficiency. I lost my Thyroids & Parathyroids due to Thyroid Cancer. Deficiencies in calcium and magnesium were a result. If my eyes twitch(usually low magnesium) or my muscles cramp up(usually low calcium). I know I need to add more to my daily doses. There are many causes for electrolyte imbalances. You might get your Primary care Dr to check your levels. Abnormal levels can make our bodies do weird things. Too much or too little of sodium, magnesium, calcium or vitamin D can make life harder. Let us know if you find the cause - one note...my Oncologist does a really good job of adjusting my magnesium, calcium & D supplementation so yours might be able to help too!

ThreeC, congratulations on the deck! That's awesome. I need to think about our outdoor space, as it's full spring here.

LomLin, glad Xanax is helping!

Hope everyone is well; we have the summer time change here in most US areas. It's weird.

I got some 100 percent cotton sheets that I look forward to trying out.

My Tamoxifen is Teva brand. It's the only one our small town pharmacy has.

So, I've been using the CBD oil only after I got my pcp's okay. I was scared to try it, honestly, even though an academic colleague (she is psychology; I'm history) swore by it (a very specific brand). PCP was like, sure, that's fine (I was surprised), just be sure it's a brand recommended by naturopathic person at the store. I've been using it for less than a week. Any different? Not much, though I did notice being calmer in the evenings after taking it. I'm willing to complete the bottle before I make a call yay or nay.

Errr, anyone having reflux come on with Tamoxifen? It's been a bear. Zantac has helped a lot. I also had to take Imodium today. Haven't had that stuff since early days of chemo. These things are manageable, though, not bad enough to stop Tamoxifen. For me, sleep was the thing, and very happy it's been better.

Dee

Veeder, re Tamoxifen manufacturers, I've had Mayne, Teva, Actavis and with the refill I picked up this week back to Mayne. Can't say that I've noticed any major differences. I do take a Loratadine with breakfast and take the Tamoxifen at the end of my evening meal, as suggested by the pharmacist. Don't know how much difference doing it this way makes, but so far it is working fairly well for me.

Some folks have posted about having a preferred manufacturer, but that seems to be an individualized thing. I remember one poster who said she and her sister were both taking Tamoxifen and the one she preferred sister could not tolerate!

Hi,

I wasn't sure if that brand was an older one since I had been picking up the Tamoxifen prescription all last year, even before I started taking it, and after I stopped since it was free.

If I didn't have prior stomach issues then I don't think I would need so much stomach protecting meds, and maybe non at all until I had been on the Tamoxifen awhile. I do notice that sometimes I can eat some food that I'm pretty sure would irritate my stomach, and it doesn't! Only to have stomach issues hit me days later. So I don't know why but I'm trying to be very careful about what I eat.

I tend to feel very achy in the evening and am curious if anyone else has the feeling on Tamoxifen. It's almost an achy feeling like I am about to get sick but by the morning it goes away. I don't have it every night but its fairly consistent. Anyone else have flu like aches?