"Tamoxifen Road" - Support and Encouragement
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I’ve been taking Tamoxifen for almost 5 months and have found the increased tightness in my legs to be the hardest side effect to handle. I’m considering cutting my 20 mg pill in half, and trying a divided dose of 10 mg twice a day to see if that makes a difference.
The pills are not scored, but I have a pill cutter. Does anyone know if it’s OK to cut the pills in half, or do I need to ask if I can get a prescription for the 10 mg pills?
Hope everyone is safe and well.
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Mom2bill , It is ok to cut them in half the problem is that more often than not one half is a little larger. Since you are taking them twice a day it shouldn't matter. I went down to 10mg by cutting mine in half because of side effects. I recently started taking 10mg in the AM and 10mg in the PM. I did ask for a prescription for the 10mg dose. My doctor was very unhappy with my 10mg dose, but I was doing so well on it!! Magnesium does help with the leg cramps at night, but I know what you mean. Tamoxifen does cause some lower leg/ankle swelling.
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Thanks, Flashlight. I figured that I would try dividing the dose in half, and if it seems to make a difference then I will see if my MO will prescribe the 10mg pills. I am taking Magnesium and thankfully I have not had the cramping during the night...at least not so far. The biggest issue is that my legs are extremely tight from the knees down, particularly in the morning when I get up. I stretch like crazy all day, trying to keep them as loose as possible, but never really get there. My ankles and lower legs have only recently started to swell, and I walk around feeling like I am wearing cement shoes due to the heavy feeling in my legs that never goes away. Still hoping that some of these things might get better over time, but who knows. Limping around every time I stand up is making me feel so old!
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32B thank you! I believe this is neoadjuvent therapy as one of the masses were near the chest wall. I’m taking 20mg a day. My next appointment is Wednesday with the surgeon after mondays hopefully successful biopsies.
I also plan to call my MO after Wednesday and find out more about all the treatment.
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anyone else prescribed neoadjuvent tamoxifen?
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MomtoBill - I recall having tight legs after treatment and having to stretch them multiple times a day. Several months later, whenever I ran, I felt like I was running on wooden legs. It took such effort. It took time, but that feeling did go away. I wasn’t taking Tamoxifen, though.
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GoKale4320: Thanks for the response, and for providing some hope that this leg stiffness might eventually go away. My emotions have been all over the place...one day I tell myself that I can do this, and the next I am ready to just give up and stop taking the medication. It would certainly be easier to remain optimistic if I knew that there is an end in sight, but we all know that nothing is certain when it comes to cancer.
For now, I’ll just keep on stretching and taking my daily walks. I can’t even imagine running! Go Kale 😊
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I'm three weeks in now on my tamoxifen (full dose of 20mg 1x/day).
So far no hot flashes or nausea. I am feeling more tired at night, falling asleep on the couch. And I'm realizing that I'm a bit foggy despite getting enough sleep. Earlier today I couldn't think of the name of bean sprouts and I called something else by the wrong name but now I forget what it even was. I've had those kinds of moments before but this feels like a thicker fog somehow. My job relies on my brain being sharp, so this is not a great feeling.
Apologies for not replying to others' posts, I'm feeling too foggy to sort through all the posts I missed over the last three weeks. I did read them all though, and fully agree we have to be our own advocates. If your doc is no bueno, see if you can get a new one!
ETA: I forgot to add that for the first couple of weeks I felt like I had to pee almost all the time. In the last week things feel more normal in that regard.
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Lumpkins, I, too, have had the brain fog, sometimes worse than others and sometimes not noticeable. Just as other SEs it seems to be cyclical. The one that is almost ever present is the urgent need to pee which is probably exacerbated by increased fluid intake to avoid the notorious SE--constipation.
Hang in there!
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Good to know it's cyclical. The longer I stare at a screen the worse it seems. The other day my spouse and I did a cooking class online but moving around the kitchen I felt fairly sharp. Sitting at my computer for work is more of a mess.
So the peeing thing is real, huh? Perfect for a pandemic when I refuse to pee in public bathrooms!
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There have been times at both the computer and the sewing machine (trying to piece a quilt top) that I have just turned the machine off and gone for a walk. Exercise does seem to help me a bit. However, since I am retired I do have the luxury of saying that I am not thinking clearly today, be back tomorrow!
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hello everyone 😁. I am now 19 days off tamoxifen. I was told to stop it pre-op (just had a PMX of my left breast) and restart 7 days post op. Well,I didn’t take it today and I am struggling with starting it again. I am slowly feeling like a weight is being lifted off of me and I am catching a glimpse of parts of my old self. Emotionally I am starting to feel more in control and stable, also the joint pain in my hands is gone!!!! I have had such debilitating fatigue since starting this med and I just want to see if I can get back to me. I might just remain off of it for a full 30 days. If I feel like I have been feeling after restarting I am going to have a conversation with my MO in October about other options. I will be seeing a different MO, my previous MO really didn’t seem concerned that tamoxifen was affecting my QOL. Thanks in advance for listening to my rambling
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oh Dani I hear you. I have different effects but I, too, am feeling defeated by fighting them. Hope it gets better
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Good luck to you Dani! I had been feeling a bit out of control of my emotions which is scary. I recently took a heavenly 3 week break and it's not so bad so far being back on.
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Salamandra - so nice to hear from you! Missing our original 'going through radiation' group. I'm glad you are doing fine on the toremifene and congrats on the clear manual exam! These milestones are so important. Wow, we are at our 2 year milestone since being diagnosed now, I just hope it will be further and further in the rear view mirror for us. And I've gained weight too - not sure whether to blame tamoxifen or quarantine or work or my husband!
Rah - good to see you on this thread too. My onc agreed to the 10mg dose from the beginning, maybe the studies I cited and other cases can help convince your onc?
everythingwillbefine - here are the studies I had found on 5mg doses being just as effective as 20mg in some cases - they are fairly recent and not broad, but I think as time goes by, more studies will come out:
https://www.webmd.com/breast-cancer/news/20181206/lower-dose-tamoxifen-works-as-well-as-high-dose
https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx
https://academic.oup.com/jnci/article/95/11/766/2520250
Rain88 - I am so with you on the weight gain, I've also gained at least 15 lbs on tamoxifen after fighting to lose weight when I was first diagnosed and its been super frustrating! But if that's the only major SE for me (I'm on 10mg as well) I suppose its tolerable. Oh - and no hair loss for me, at least not any I'm willing to admit, but I don't think its any different than before tamoxifen.
edwards750 / Diane- so great to see you back on the boards, you are my original inspiration for sticking through this and keeping up with the tamoxifen! Congrats on being 4 years through.
Dani - so nice to hear from you too! Totally understand the struggle with starting again and whether you do is up to you. Maybe you can pace up slowly too or re-start but just at half dose? I've been on 10mg all this time.
Beaverntx - I really need to do what you do and just turn off the work for a bit and go for a walk. I feel like I've gained weight and gotten more lethargic since starting tamoxifen, but I don't know if its tamoxifen's fault or my own LOL.
Lumpykins - Feeling you, I'm on the computer constantly for work! Have been working from home but somehow that means more time working. Did not get the peeing thing but I'm also at half dose.
Mom2Bill and GoKale - I need to join you on stretching and daily walks. I'm also not a runner! I think yoga can be helpful for the leg stiffness too. I haven't had the stiffness but I'm also at half dose (10mg).
grdngrl505 - very impressed you can do spinning!
edj3 - oh my, so sorry about the prolia, hopefully the tymlos will be more tolerable. Sending well wishes on that...
Celand - oh my goodness, I hope you are recovering now since the fall! Agree that with the blood clot risk it probably makes sense fro you to stay off tamoxifen for now, curious what your doctors say. Are you going to stop it entirely after being on it for 3 years? Please keep us posted and hope that ankle heals soon!
flashlight - I'm able to get Tamoxifen at 10mg, my onc. prescribed them to me that way, so I do not need to cut any pills in half. Maybe inquire if you can get that?
Ladyc2020 - Good luck with the neoadjuvent therapy. Hope it goes smoothly for you. I went through all of this at 43 (I'm 45 now) so you're not alone in this age range. Feel free to PM me if you have any specific questions. One piece of advice is that a lot of us waited until after surgery and radiation before starting tamoxifen to let our bodies recover a little before the next thing
Rebalilly - I 100% agree with the others that you should look for a new oncologist. Having a good oncologist is so important, you need someone who cares about you and is on your side.
bellevue - please keep us posted on what you end up doing (evista vs. tamoxiten) and how you fare on SEs, that's an interesting one and I'm also pre-menopausal but my MO never brought up the evista option.
So, my update is a heartbreaking one right now - we lost our older pup Tucker just over a week ago. He crossed the rainbow bridge at 18 years old and he had a great, long life, but even though we knew it was coming, its still so hard to see happen and deal with. I always put paw photos with my posts (and its the pups in my profile photo) so I think a lot of you (esp. the ladies I went through radiation therapy with) have seen pics of him. He's now joined our little black bear cub of a dog Kit Kat on the other side - she had passed a few months before I was diagnosed with breast cancer, and I wondered at the time if the stress of her passing had led to things and now here we are again. Trying to stay strong and positive and hopeful that Tucker and Kit Kat (who was his little lieutenant) are reunited and happy on the other side. And thankful that I still have Domino whom you've all seen the most as she's been my ESA dog too - she's 13 and I hope, hope, hope that she has many, many, many healthy years ahead still. She's the last of the original pack, and now we have our new pup Finley as well. So, still a full paw family, but a little less full without Tucker and Kit Kat.
Here is the "original paw family" Domino, Tucker and Kit Kat (from left to right). Now only Domino remains and I hope she lives forever.
And here is Tucker with new puppy Finley - he was SUCH a good big brother to Finley and Finley idolized him.
Anyways, trying to be strong, figure out how to lose weight while on tamoxifen, deal with this pandemic and lots of work and still look after our remaining paw family while also being heartbroken over Tucker and still always thinking of little Kit Kat. That's my update. Hope everyone is well.
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Aww Tucker!!
I'm so sorry. 0 -
pebbles,
So sorry about Tucker. Big hug. He had a great and long life. He will be missed.
Take care!!
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PebblesV, I am sorry to hear about Tucker. It must have been hard to lose him. Finley is so adorable and what a clever name for Domino! Wishing you lots of joyful moments with them. (My 5 year beloved Bearnease had been a comforting presence and a faithful companion after I was diagnosed and all through the rads.)
If you find a way to lose weight, please share! Hugs and love
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aww so sorry about your sweet doggy! ❤️ 😔
I am 9days on tamoxifen now and haventgot dressed yet today. First day of real exhaustion. Laying in bed, tv on for my little one. It’s almost lunch time 😬0 -
Pebbles- I am heartbroken to hear the news of Tucker. I am so sorry for your loss. I can’t imagine how hard that is ☹️. I too miss our rads group, that group made a world of difference for me💙. And yes, I am absolutely including Domino in that!!! I actually had my surgery the day after my 2 year anniversary of diagnosis. I am ready for it to get much further behind us!
Ladyc2020- It’s fine, I mean is there really a rule that says we need to get dressed at all some days🤣. I say do what you need to 💪🏻
I am going to add to my list to ask my MO about tormefine. And hopefully get enough time to ask About my absolute risk without this med.
I hope everyone has a good start to their week
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Hi there everyone! Let me start by saying I admire each & everyone of you paving this path for us to follow. I don’t post very often but do check in often.
My question is, has anyone experienced vertigo while being on tamoxifan. I woke up after rolling over in bed with the room spinning and this continued when laying on left side. Perfectly fine standing, walking etc... of course my imagination automatically goes to brain Mets but after 2 days the vertigo is gone. I will be making a doc appointment but just wondering if anyone else has experienced this? Thanks so much
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Pebblesv,
I will have surgery this coming Tuesday, September 1. Orthopedic dr will put a pin, plate with possible bone graft. Hopefully, my ankle will heal. I am definitely going to stay off of Tamoxifen, if I don't have same genetic condition that my brother has (Prothrombin G20210A) and have osteoporosis I will try Evista. I have tried Arimidex and it caused horrible bone and joint pain, not for me especially with my ankle situation.
All kinds of twists and turns for me.
Celand
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@Dani444, can you tell me more about the joint pain you had in your hands?
I'm having discomfort in certain joints in one hand only and it didn't cross my mind it could be the Tamoxifen. I assumed it was part of the tightness/cording that has been ongoing since the surgery/radiation, but this is a new pain I didn't have before.
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Dup403 I don't experience vertigo per se, but definitely a bit of light headedness, especially when I first started taking it.
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Lumpykins- The joint pain in my hands started in my thumbs. Any movement would cause discomfort and then at times when I would just go to grip a glass or water bottle to pick it up it would send a sharp pain. Even gripping my steering wheel the wrong way would cause pain. I also had general aching in my fingers. The thumbs were definitely the worst. I had never had any problems with my hands until tamoxifen and since I am on this break from it, It has gradually resolved. I wish you the best, I am sorry you are dealing with the tightness and cording
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Well found out yesterday that I tested positive for Prothrombin G20210A, which makes me more susceptible to blood clots, so I can no longer take tamoxifen and cannot try Evista.
Oncologist will discuss my options with me after my ankle heals.
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Celand,
How are you feeling about that?
I just googled Prothrombin G20210A (result pasted below for others' convenience). Why were you tested for it to begin with?
Prothrombin G20210A is a genetic condition that increases the risk of blood clots including deep vein thrombosis and pulmonary embolism. One copy of the mutation increases the risk of a blood clot from 1 in 1,000 per year to 2.5 in 1,000. Two copies increases the risk to up to 20 in 1,000 per year.
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Lumpykins,
I feel grateful that we found this before the Tamoxifen caused a deadly blood clot or PE for me. I did take Tamoxifen for 3 years so hopefully derived some benefit from it.
I got tested because my brother had PE last year, it was near his heart and could have killed him. After running many tests on him the hospital found out that the cause of his PE was genetic, the Prothrombin G20210A. They advised his close relatives to seek genetic counseling, which is why I got tested. I literally received my results the day before my ankle surgery. God works in mysterious ways.
I don't know if I will be able to take AI either, I do have arthritis and when I tried Arimidex I had horrible bone and joint pain. I don't know what my options will be once my ankle heals. Hopefully my oncologist has some answers.
Celand
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Hi all, I'm glad I found this thread. Diagnosed with stage 1A breast cancer July 2020, had mastectomy (left breast) with no reconstruction. Started tamoxifen almost 6 weeks ago. The first 2 weeks seemed pretty good. I was not getting many side effects other than some joint pain here and there. But then the 3rd and 4th week, I would feel dizzy and nausea for parts of the day. My doctor then recommend I switch to taking it in the morning to right before bedtime. But now I find I am not able to sleep hardly at all. It would seem that as soon as I am about to drift off, I jerk wide awake. It seems I sleep in 1/2 hour to 1 hour increments and would toss and turn all night long unable to fall back asleep for huge amounts of time. I have tried meditation, yoga, deep breathing exercises and none seem to help. I also seem to be urinating all the time all through the night even though I stop drinking anything 1 1/2 hours before bedtime and I go right before climbing into bed. Honestly, I don't even know how I could have so much urine in me! :-)
I am a very petite slender woman, 4'11" and lost a bit of weight after the diagnosis due to anxiety. I currently weigh 88 lbs (i was 93 before diagnosis) and although I see a lot of threads stating that tamoxifen is causing weight gain, I seem to have trouble keeping up a good appetite and cannot seem to gain the weight I lost. I think this may be due to my general anxiety rather than the tamoxifen, but I thought I would include this information in case anyone has any insight.
It seems odd to me that everyone takes the same dosage of tamoxifen regardless of their weight. I'm wondering if it would be better if I cut my pill in 1/2 and only take 10 mgs. Would it still be effective? Would I have fewer side effects? I am planning to speak to my doctor about this but was wondering if anyone takes a lower dosage which has been approved by a doctor. I definitely don't want a recurrence of my cancer, but I am soon returning to work and I don't think I can function with these side effects.
Help! Thanks in advance.
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