"Tamoxifen Road" - Support and Encouragement
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Hello to all from Athens, Greece. I'm at the second year from the diagnosis and I'm taking tamoxifen from November 2018. I have a little bone pain from time to time but last days I feel a little tired....maybe its that I'm working from home 3 months now and my activity is 0. but is it possible to be a side effect? also I have taken about 7 kg....
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Yes, fatigue is a frequent side effect of Tamoxifen. However, you are right, less activity can also be a contributor. I find that when I begin to feel wiped out, getting up and moving around helps me feel better.
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MsPrecious:
I'm not sure what your diet or lifestyle is like but I usually eat at least about two cups of cooked broccoli or other vegetables daily, drink a lot of water, don't eat much meat, and try to walk regularly. It didn't stop me from getting cancer but it seems to keep everything moving for me.
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How are everyone's PMS symptoms on Tamoxifen? My mood swings have been much more prominent to the point that yesterday I was worried that I was really sinking into clinical depression. Of course, everything going on in the world right now probably didn't help that.
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Thanks, Jenny (Marksgirl)!! I really appreciated your post and encouragement. I have never heard of the BCI Test. I will definitely look into that. I had my oncology appointment and after 4 1/2 years of fighting I finally gave in to trying Effexor. My doctor said it would help with my pain and poor sleep. First night I slept one whole hour- gave me insomnia!
The past couple nights I've slept maybe a little better than normal once I'm asleep, but it takes me a couple hours to fall asleep. Maybe I need to take it a few hours before bedtime instead of right when I'm headed to bed. I don't know how much is from my poor sleep or from the medicine, but I've been feeling more tired this week, harder to get motivated, and my brain is totally mush. And I'm almost your age - 52. Thanks again. I'll ask my doc about BCI when I see him next month.0 -
klanders- Here is the website for the Breast Cancer Index test. https://www.breastcancerindex.com/
I can't tell you how helpful it was to have objective data. I was "okay" with the first 4.5 years of hormone therapy but thinking about another 5 years was so discouraging. If it would have come back high benefit, I would have sucked it up and continued - I guess! (may have modified the dose!) I am nervous about being off it - no easy decisions! There is a lot of information on this website about the BCI. Good luck!!!!
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well here I am again, still not taking Tamoxifen but interested to see the various points of view.Someone earlier mentioned all of their doctors told them to take it. I actually didn't get TOO MUCH pressure from doctor once I made decision. That was last year, but now I'm sort of wondering if it was mistake on my part. Read something that says even stage one can metastasize a few months ago which kind of spooked me. Plus I also read about the lower dose giving you protection but less side effects. So again thinking about doing it, with the smaller dose, but maybe I just waited too long, it's been over a year since surgery and radiation done last April of 19. I'd hate to put up with any side effects only to find that because I waited so long the drug didn't work. Has anyone started it after a year? (I am telling myself that maybe it could still work, given people in the high risk category for breast cancer take it without even had surgery in the first place.)
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once I finally went off tamoxifen after two attempts, I realized how silly I had been for trying for so long, based on my individual diagnosis and risks and side effects . Tamoxifen supposedly only helps keep the same cancer from coming back, not all cancer, and someone I know had two different cancers in her breast at the same time. I have enough trouble keeping the demons out of my head on a typical day, and just couldn't on that pill. For me, I now have no guilt from being off it. But I would never advise anyone either way, except to say, it's YOUR life and body, do what YOU feel is best and then accept yourchoice with peace.
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Sal462, I started Tamoxifen about 18 months after my surgery, and my doctors said that was risky, but they were comfortable with it given my specific diagnosis. (I took the time to have a baby.) I'm now taking a break because of the SEs, but plan to go back on in a couple of weeks. Good luck to you!
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Thanks to both of you. That is definitely interesting about it only keeping the same cancer from comin back, I didn’t realize that, am starting 18 months after surgery would be about what I’d be doing.
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Hey Sal462,
I don't know about only keeping the same cancer from coming back. I think you should ask your med onc. If that were the case, why would it be prescribed as a preventative for high risk women who have never had breast cancer? I think it works to help prevent all hormone positive cancer, both recurring and new.
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Sal,
I told my onc I did not want to start anti-hormonals until I felt recovered from rads and got back into an exercise routine, so I said 2-3 months. She said that was fine, though the risk goes up after 3 months. So the risk goes up, but that does not mean starting very late has no benefit. I'd say if you want to try it, go ahead, there should still be some benefit. If the SEs are horrible, you could always stop. That's what I plan to do. I also plan to start at a half dose and taper up if I do not have bad SEs. The oncs are not going to tell you to do this, but the reasonable ones I have spoken to (I got several second opinions) also told me that some meds are better than no meds.
The drugs help to both prevent recurrence and also prevent new hormone positive BC. That's why they are also prescribed for preventative reasons.
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correct, it helps keep that same kind of cancer (hormone fed) away, but not the other types of breast cancer - thus how someone had two different kinds of breast cancer at once. If a cancer isn't hormone fed, the tamoxifen doesn't affect it not ever occurring. I had two different hospitals I worked with and both said the same thing.
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I started Tamoxifen one week ago today - fortunately, I do not seem to have any major side effects yet. Just extra thirsty. I don't know how long it typically takes - but a follow-up call from my MO's office today said this is promising. Anyone with SEs, how long did it take for them to start? Not looking for the shoe to drop - just curious.
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For me the fatigue was pretty instant (a couple days?) and never went away (hence why I'm on a different med now). The heartburn took longer to come on (1-2 weeks) but did end up going away after a while and some treatment.
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There has been a different turn of events since I fractured my ankle (fibula) and stopped taking Tamoxifen about April 20. My intention was to resume taking it once my fracture healed.
I felt better than I have felt in a long time being off of this medication, however, about June 28, I did notice some cramping, then off and on tension type headache, like I used to get when I had my period, then vaginal bleeding, medium, has been off and on since. I had started taking the Tamoxifen but Oncologist told me to stop until we find out what is going on. I had only taken it for two days so I don't know what impact this had as the bleeding had just started. I have informed my gynecologist of what has transpired and she wants to do a TV ultrasound and endometrial biopsy but the soonest that she can see me is July 27, I took the appointment and if bleeding gets very heavy I will have to go to ER.
Has anyone had this happen when stopping Tamoxifen? My MO says that this should not have happened.
Meanwhile, my ankle is still not completely healed, orthopedic dr says it is 50% healed, so still in a brace but last radiology report says that sclerosis is forming at fracture and worrisome for a nonunion to occur!
Things were going too good for me for the past couple of years, but this has been a downward spiral.
Now, I don't even know if I can or should try Arimidex again because of my broken bone taking so long to heal, this worries me.
Also worried about whether this is a side effect of Tamoxifen. Will see MO July 13, have alot to discuss.
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Ah, Celand, thinking of you with fingers crossed that your ankle heals and you get the rest sorted out!
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Beaverntx,
There are many directions that this can go, but I suppose that most important is getting to the cause of vaginal bleeding, hopefully not cancer, then my ankle healing, I guess I can decide to stop all medications, after all my Oncotype DX score was a 5, so very low and take my chances.
A friend of mine who was dxd with Stage III er+ bc took Tamoxifen for 3 years before stopping due to unable to tolerate side effects, she told me to realize that this is all a crapshoot, the bc can return regardless of the medication and how long you take it!
So, I just don't know. I am sure that the MO will want me back on Tamoxifen, I just don't about the AI with the bone issue. I will have some decisions to make.
Thank you for keeping your fingers crossed for me to get all of this sorted out.
Celand
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Hi all - been awhile since I was on the boards but just coming back to it now. I’ve been on a half dose 10mg of tamoxifen for a year and a half now and it’s blessed by my oncologist. Lots of studies showing lower doses have been just as effective and more tolerable with less SEs. For me the weight gain is the most frustrating and I am still trying to push through that. I lost weight just before starting tamoxifen - now I can’t seem to. But in terms of other major SEs people have cited here, hasn’t happened to me and it might be due to the dosage. So reducing dosage may be an option for some who want to try to stay on tamoxifen but are having a hard time with SEs.
hkkw17 and 32b - answering an earlier question I still get periods on a pretty regular cycle but in the first 6 months or so of taking tamoxifen it was totally irregular. I freaked out and asked my oncologist about it and he said it was totally normal and that my cycle would normalize soon and it actually has - although now every 30 days instead of every 25 days which I’m not complaining about. Yes the PMS and day 1 bleeding is intense, I haven’t really thought about if it’s more intense than it used to be pre-tamoxifen, it’s possible.
Sorry everyone if that was TMI but I wanted to answer those questions as I know there are less of us who are taking this medication while still pre-menopause!
Anyways hope everyone is doing alright during these weird times and because this was tradition when I used to post more regularly to the boards, here is a cute dog pic of our now 11 month puppy Finley saying hang in there even if this turns you upside down!
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Celand, how's your ankle doing?
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echoing edj3, Celand, how are things going? Ankle, Tamoxifen, bleeding...
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New here, hi!
I literally just took my first Tamoxifen pill one minute ago. Had to rip off the bandaid and just do it, because I've been so intimidated by it.
I had my lumpectomy in Feb, finished my radiation end of June, so it was time.
But any tips you can share or things to watch out for would be greatly appreciated. (And what's the deal with grapefruit juice? Forbidden??)
I don't have a signature figured out (or all of the abbreviations that go into it) but here are my basics if someone can help me translate it into a proper signature?:
- Diagnosis
- CHEK2 genetic variant diagnosed 3.5 years ago; breast MRIs every 6 months and colonoscopies every 3-5 years to monitor
- 12/13/2019 breast cancer diagnosed (age 45) in right breast (DCIS + microinvasive cancer (Stage 1?)) after MRI biopsy done on basis of screening MRI results
- Surgery in late Feb 2020: lumpectomy and sentinel node biopsy (0/8 lymph nodes), clean margins
- Radiation to right breast; finished end of June 2020
- Hormonal Therapy started TODAY, like just now TODAY (Tamoxifen)
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Welcoe Lumpykins! You and I are a similar age - I'm also 45 - the only place we are called "young" when we go to our appointments LOL. Anyways, I've been on tamoxifen for a year and a half now and here are some tips, hope it helps:
1. It is a bit of a roulette wheel where people fall on side effects - some have had a very tolerable time, some have had major SEs. You never know until you try so kudos to you for trying.
2. I've been tolerating tamoxifen well but I'm also at half dose (10mg) which my oncologist has OK'd. Lots of recent studies showing that the lower doses are equally effective, and from these boards, seem to be more tolerable to the group of us. Here are a few of those studies... so if at any point the SEs are tough, consider reducing your dosage as an alternative.
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
3. Nausea has happened for a lot of us in the first couple weeks and it goes away. It's your body adjusting to the tamoxifen (according to my oncologist) and totally normal. That is not a long-term SE, after a couple weeks that should go away.
4. If you are pre-menopausal like me, don't be concerned if your cycle is irregular in the first 6 months. Again, totally normally, and after about 6 months it should normalize back to a more regular cycle (it did for me).
5. One common side effect is hot flashes. I didn't get those as much but I am warmer at night, just not sweaty hot flashes like others have described. I'm fine during the day, not hot flashes or anything. I take my dose at night, not sure if that helps or not.
6. Another common side effect people have mentioned are leg cramps. That particular one never happened to me but I stretch and do yoga a lot and wonder if that helped overcome / avoid that side effect. Others who got that SE have then shared that taking up yoga or walking or some other form of exercise has helped them out.
How is everyone else doing (Salamandra, TogethertoLearn, edj3, Celand, others - don't want to leave anyone out so this is a general how are things?). As mentioned in my last post, I was off the boards for awhile but starting to inch back now.
Final tip - occasionally its helpful to look at cute puppy pics so here is my little Domino:
Good luck with your journey and welcome to the club!
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Hi PebblesV! So lovely to see Domino again
I'm alright! The toremifene is treating me just fine - if I have side effects I can't even really pinpoint them. I still feel relief every time I pick up the bottle to take my pill! And I just had a manual exam with my surgical oncologist nurse practitioner and that was clear so phew! She also said that would be my last appointment with her and from now on I'll be followed by my medical oncologist only. I'm kind of sad about that tbh. But the plan is to space out mammogram and MRI every six months, and manual exams I guess whenever I see a doctor.
In two weeks, I'll be two years out from when my gynecologist found my lump. I've always been more worried about late recurrence/metastasis than early (not for any particular scientific reason, but just how my worries went), but it still feels good to have reached that milestone.
Now I'm mostly consumed with worry about whether they'll send kids/teachers back into buildings in the fall in NYC. It was such a horror show here in the spring and, well, I could rant nonstop. I wish we could just shut down the bridges and tunnels.
I've re-started Flylady and actually using my planner, so I'm feeling like my life is a bit more in order! OTOH, I've gained at least ten pounds since quarantine started and that's kind of a bummer. Discovered the show Due South and enjoying getting back into a fandom. Life is never not a mixed bag but overall I think I'm doing well and I'm so grateful.
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Fatigue and hot flashes have been the most irritating for me. My Onc hasn't agreed to the 10 mg per day dosing yet. I am currently taking 10 mg twice a day to see if I can tolerate that better. What was interesting to me is that I didn't reach a truly difficult level until about 2 years in. So I guess a next option might be a short holiday off the drug so my body can reset.
Congrats Salamadra on two years out! What a wonderful thing that is. I passed my two year mark on June 27. I just shake my head at all that happened.
Pebbles - too much cuteness. What a little fluff
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Rah, I only made it 18 months before taking a break and it was fatigue and lassitude that got me. Have been better since going back on but am beginning to notice some lassitude creeping in but don't know how much staying home due to Covid has to do with that. And of course triple digit weather is not encouraging outdoor activity!
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Hi there. I've been on 10 mg for 7 months. The SEs are more tolerable then when I tried the 20 mg. Still, my feet, legs and knees are always sore and I get cramps frequently, even though I am quite active. Sleep is also wacked up; hot flushes and mood swings as well. And I don't know about anybody else, but my memory is shot too! Oh, and weight gain: 15 pounds! I must say though that it's all tolerable so far. I liked what my MO said that it means the Tamoxifen is working at blocking the estrogen, so it's a good thing. I hope everyone on Tamoxifen is managing well with only mild SEs. (((Lots of virtual hugs)))
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Hello Everyone,
I started taking Tamoxifen 4 months ago. The first side effects were nausea and hot flashes/night sweats. The nausea is gone, but the hot flashes continue and are aggravating, but tolerable. After about 2 months, I developed a heavy feeling in my legs, and my legs got very stiff from the knees down. I spend time every morning stretching, as well as needing to stretch throughout the day in order to remain mobile. For me, the leg issues are the most irritating along with fatigue. If things don't get any worse, I hope to be able to make it on this drug for at least 5 years as the AIs are not an option due to osteoporosis. I tell my son that he needs to focus on those things for which he is grateful when he's feeling stressed or down, and I try to do the same.
I hope everyone is handling all of the challenges that have been brought on by this disease, medication, and of course, the virus. One day we will emerge on the other side of all of this!
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Mom2bill, the heaviness in my legs is the most bothersome SE for me too. Since my diagnosis, I became at least twice more active, including daily work out and stretching and yet the soreness never leaves my legs. When it gets to be too much, I take an Advil and that helps. I also find that warm showers soothes the aches. Having said that, I still find it all tolerable compared to when I was on 20 mg.
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