Bottle o Tamoxifen
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Beaglemama: Ask your MO how soon/ how late you can start. I remember my MO looking at calendar when I finished Chemo. & I think she have a range of about 4-6 weeks after chemo. which was last week of Oct. I picked starting Tamoxifen on Nov 1. Yes. she also said Tamoxifen is BIG part of treatment plan.
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Beaglemama: I have some side effects but no hot flushes, I've been taking it for almost a year. I was allowed to delay starting Tamoxifen until the rads were finished (this is in the UK). I did not want to worry about having side effects from rads and drugs at the same time.
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My onco has given me a 3 month break from Tamoxifen to see if it's the culprit causing my pain, breathing issues, etc. I've been off now for about 2 months and realize that the only "side effects" that went away were the daily headaches and not being able to take very deep breaths. All my other complaints are still with me and cannot be blamed on Tamoxifen, to name a few: painful joints that are easily injured, weak/painful muscles, menopausal hot flashes, shortness of breath causing easily fatigued, shooting sharp nerve pains down arms/legs to hands/feet, deep bone pain down spine to arms/legs, brain fog....
As a side note, since I stopped Tamoxifen, I decided to very gradually wean myself off Effexor since I was only taking it for Tamo induced hot flashes and it didn't seem to help the hot flashes anyway. As I titrated down, my nerve pain increased dramatically. I was not aware that Effexor helped alleviate pain (I've been taking Gabapentin and sometimes Tramadol for nerve pain all along and have had to increase it.
My onco seems clueless so I am scheduled to see a rheumatologist also at my cancer center. I now believe that my current ongoing problems stem from chemo and obviously not Tamoxifen. It makes sense that we blame our "side effects" on Tamoxifen since we start taking it about the same time that chemo induced issues would start. Although I too worry about reoccurance, I'm glad I now know what is not causing my health problems.
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Blown away, sorry for your SE's. The nerve pain is a pretty well-known chemo after effect. WHY do so many doctors persist in saying the side effects are uncommon from all these treatments? I understand they don't want to promote neurosis, but please--some respect for what we are legitimately feeling! Ugh
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See how you feel after being fully off Effexor. It may be that discontinuing Effexor is causing increased pain (rather than that Effexor was treating pain)--it's a hard drug to discontinue.
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OMG...I can't take this medicine. I'm a total train wreck. I just went into my sons high school and was having a meeting about his college application process. Everything was going well and then for some stupid reason I decided to tell the counselor that I wasn't in the best shape because of the cancer and I broke down crying. My poor son is so not emotional and just stood there in disbelief that his Mom is a train wreck. I would never bring all this up normally. I only said something because I don't want my lack of cognitive ability to make him miss an opportunity for college. I don't want to ruin it for him. But now I just embarrassed him. I can't stop crying. I'm just an emotional train wreck. I can't keep going like this . This medicine is giving me an emotional breakdown and taking away all of my cognitive ability. How am I supposed to function on this medicin
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Hi Misty,
It's a bit of a myth that Tamoxifen "throws" women in to menopause. My MO explained that most women who take it are at the age where menopause is naturally going to occur, and the concidence is often incorrectly attributed to the medication. I was definitely peri-menopausal when I started it and had regular periods for nearly the whole first year of taking it.
That said, you mentioned your doctor is recommending ovary-supressing shots for you. That *will* absolutely throw you into menopause (albeit temporarily -- but your ovaries will not be working, which is what happens with menopause). I'm wondering why that is his recommendation? I've usually only heard this recommended when it seems preferable for pre-menopausal women to be on an aromatase inhibitor vs Tamoxifen (e.g., if there's a high risk for blood clots, uterine cancer, to name a few).
Since your Oncotype DX score is at least in the middle-range area, I think it would probably be a good idea to go with hormone therapy. But that's a conversation you need to have with your doctor (and perhaps get a second opinion with a different MO, because it doesn't sound like this doctor is very good at explaining things!).
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I hate this medicine, this morning I had the worse leg cramps in both legs that I have to call in late for work. Thank God for ben-gay.
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Tip for leg cramps: Instead of stretching out your leg and curling your toe outward, curl your toe towards your body. It stops the cramp immediately.
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Mom2fourplusmore - I'm sorry you had a hard time at the school meeting. I must say that I feel Tamoxifen has made me feel very anxious, sometimes down and lots of things fill me with apprehension. It is worst in the morning and better in the evening. It could be that my normal menapause would have made me feel like this but Tamoxifen stopped my periods quite suddenly 10 months ago (I was perimenapausal before I started taking it) and pushed me into menapause (I think so anyway). I also had some bereavement and nasty health problems to cope with in the family so that could have affected me. Check out other forums and you can see that some women feel that Tamoxifen does make them very emotional and anxious. You also see the same thing on menapause forums with no Tamoxifen.
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Mom2 and Catkin. I too have the horrible anxious feelings primarily upon waking in the morning. I've had crying spells for weeks. It's so embarrassing to burst out crying at work and have to hide in the bathroom. I tell people it's my allergies is why my nose is red and eyes runny. I was having regular periods before chemo. After starting chemo, I have not had a period since. My understanding from my MO is Tamoxifen puts us early menopause and we stay there until real menopause hits. He said I could be on Tamoxifen for 5-10 years to keep my period from coming back. I never felt this down during the worst of the chemo and radiation but now am so depressed and quick to blow my temper. I feel bad for my hubby, he went through this hell with me all last year and thought I was finally cured. Don't get me wrong, I'm thrilled to be past the surgery (no recon), chemo, and radiation but I hate the way Tamoxifen makes me feel. My GP has me on Trintellix for depression for the last month. I sure hope it works soon!
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I know for a fact that tamoxifen is causing my issues. I was taking it and I was an emotional lunatic with the energy of a slug. I couldn't even muster enough energy to get up stairs. I told my MO and he said stop it for two weeks. Within 48 hrs I felt better. In a week I was back to hiking and making jokes. Then I had to restart the medicine and bam, within a couple days I'm back to feeling like a hormonal mess. My MO checked before all this to see if my ovaries were working and I am not in menapause. So we know it's the medicine that is causing all this. But I took birth control pills when I was younger and couldn't handle them either. Plus I haven't had radiation or chemo so it's not from that.My body really doesn't like being messed with. Just not sure how I'm going to function like this.
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is it a general rule of thumb that if you didn't have problems taking a birth control pill, you won't have problems with tamoxifen
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MusoGirl, if I may ask, what SSRI did you return to? I've been doing a lot of reading and newer studies are contradicting the original literature about Paxil and Prozac being CY2-whatever antagonists..... I have heard very bad things about Effexor, and I don't plan to take it. I want to stay with Zoloft..
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Blownaway - I'm having the joint, feet issues too, so I'm taking a month break. At the end of the month if the stiffness is resolved it was Tamoxifen, and I'm done with it, if no change I'll go back on it. Either way I figure I win.
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Littletatas - Well done on coping with the anxiety/ crying spells whilst going to work as well (I'm a stay at home mum of 2 teenage boys). I feel sorry for my hubby too but I told him I can't help it and I'm doing my best. Good luck with the Trintellix.
Mom2four - That's good that you stopped the Tamoxifen for 2 weeks. It sounds like it really is the cause of your lethargy and feeling very hormonal.
As for me, at the moment, I'm too apprehensive about anti-depressants so I do all the usual other things. I take Magnesium, Vitamin B complex and Vitamin D (for bones), deep breathing if panicking, reading forums to remind me I'm not bonkers, remembering to be kind to myself and congratulate myself on what I do manage to do, keep busy and occupied, light cycling/walking, refuse to do/cancel what scares me too much, try mindfulness (pretty rubbish at that), pray for myself and others, sleep as long as I can (about 6 hours then I wake up), fairly healthy food plus nice treats, eat dark chocolate(a little every day) and drink hot chocolate (use cocoa powder rather than ready made), watch light/funny TV, play piano (the concentration is a distraction) and see friends if I'm not too anxious.
I also had 7 sessions counselling at the cancer hospital which helped a bit. I'm hoping that I will adjust to having my oestrogen blocked by Tamoxifen and that I'll start to feel more normal before the 5 years is up. Phew, it's hard work, but I'm lucky my physical symptoms aren't too bad. I think we all deserve a medal.....(sorry the post is a bit long).
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Beaglemama - first off, I have beagles, too! Kind of off-topic, but good to connect that way.
I took Effexor one time, during chemo, and had the worst panic attack I've ever had in my life.
About a week ago, my MO started me on a low dose (5mg and then 10mg) of Lexapro for anxiety and the beginning of what promised to be hella-depression. Lexapro doesn't appear to interfere with Tamoxifen in the way that Zoloft, Paxil, and Prozac do--it's slightly more disruptive to the enzymatic pathway than Effexor is, but I'm willing to take the chance if it means I'm not a complete lunatic. My primary care doc, my therapist, my MO, and the social worker at the cancer center all agree that this is a good move. Ideally, I'll only be on it for a year or so, just to "hit reset" on my brain. It could be worth asking about. At the risk of sounding like a Lexapro commercial (which I'm really not trying to do): it's also good for anxiety, and I find that I'm tolerating it very well.
Catkin, I was apprehensive, too. But I decided that enough was enough. I did just fine on Tamoxifen alone, save for some hot flashes and minor mood swings, but when we added Zoladex to the mix, s*** went haywire.
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KateB79 - Thanks for your feedback and experiences. I will take anti-depressants if I have to (goodness knows 2 of my friends do and another has done), I'm just trying to avoid it as long as possible it, that's all.
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I took my first pill yesterday. Other than a low grade headache that is barely noticable, I'm fine so far (I understand that it takes about 3 weeks to really start with with SE's). I do feel like I have a slight sickness - very tired with lower GI issues. BUT, I slept like crap and just got back from my business trip, so I'll wait a few days before blaming that on anything but life.
A couple things I noticed when reading that I wanted to mention. Anxiety was mentioned a bit. I'm about the least anxious person out there. I'm just the kind that goes through life in mainly a happy mood with some down days like we all have. Since chemo and surgery, I've been anxious. Nothing huge, but just vague feelings of unease. I'm interested to see if these increase on Tamoxifen.
As for join pain - my doctor did warn me that this is a known side effect. But, I've had some pretty bad joint pain from Taxol. I still have issues with getting up from low seats. As I've always been fairly athletic, this is majorly annoying (and depressing) for me. Oddly, I've found that working my legs with weights is helping. I'm hoping they do not get worse with Tamoxifen. I guess we'll see.
I do have a question - is there a list of supplements that are okay to use with Tamoxifen - or maybe a list that are NOT okay to use with Tamoxifen would be better. I've done internet searches, but so far have not found the information I seek.
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My MO put me in menapause shortly after I started Tamox with monthly lupron shots. I finally had to stop the shots because side effects were so bad. Even after stopping Lupron, I was still having fierce HFs and muscle pain. Mag citrate, Mag glycinate and lots of green tea help the muscle pain and turmeric with bioperene combined with ginger help the HFs. For me though, the biggest difference has been switching to an anti-inflammatory, gluten-free diet. I did this 5 weeks ago after I developed LE. Now I'm back to my pre-BC state of being cold most of the time. A year's worth of stomach issues are also resolving, I'm losing weight and feeling more energetic. Everyone one is different but for me the treatments caused major inflammation which is now way better.
Scottie
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there are LOTS of meds that you can't take with tamoxifen because they use the same metabolic pathway as the tamoxifen. Benadryl is a BIG no no. I just googled it and found a comprehensive list of low, intermediate and high categories of meds. I didn't take chemo but had hysterectomy with ovaries out, so don't know what side effects are from what, but I have joint pain worse since I quit the turmeric, hot flashes galore, hair falling out a little more than usual but I am determined to take that little pill no matter what. I have always been happy go lucky person all my life, and now I'm on Effexor for depression and hot flashes and ambien for sleep since I dealt with two months of three hours of sleep a night that led me to get lost on my way home from work one day because I was so exhausted and confused. I have had some cognitive and memory issues, but again, it could be from the surgery also
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Thank you Georgia for your input. However, your Gyn's take on Tamoxifen not causing uterine cancer seems to be opposite of what I am being told by my Gyn as well as my Onc. Both said to stop the Tamoxifen as it was causing the uterine lining to grow too fast which places the cells in a "higher risk" state where they can grow in an out of control way. Grr. More upset because I thought I was done with my breast cancer - but now am seeing it morph into concerns about Uterine Cancer/Cervical Cancer/ Ovarian cancer. I need to brace myself because if the biopsy does not look good in 3 months, I'm going to need all my anatomy that is "female-hormone relateed" taken out. Just another perspective that leads me to believe I have a lot more research to do.
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whitedove--I had to do the whole "removal" thing thanks to Tamoxifen. Ended up being great for me. I wasn't yet in menopause so do deal with hot flashes but they are pretty scarce and mild when I do have them. Otherwise I feel fantastic and am really glad I did it. It's nice to not have to worry about that part of Tamoxifen.
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Lala,
I see by your profile you had Prophylactic ovary removal. May I ask if you opted not to have the uterus/ and or tubes removed? Perhaps we should "pick" a category to chat. You're one of the first persons who has had a similar journey with BC, Tamoxifen and Ovarian removal. I am very interested to hear more. I am waiting to hear from my Onc. about restarting Tamoxifen (I've only been off if for 1 week - prior to that, have been on for 6 years and was going to continue for 10 years.)
Thank you so much for your feedback. You are quite a fountain of knowledge on this discussion list and have helped me with other issues in the past.
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Whitedove--I had a total laparoscopic hysterectomy with ovary removal in Jan 2015. I was just showing signs of endometrial thickening as well as cysts and fibroids. I was 51 at the time and not yet in menopause...according to my levels, I wasn't even close! I had a great gyn who had me in and out in no time, spent one night in the hospital, went home the next afternoon (no gas pains he was that good!), took one prescription advil the next day and one tylenol the day after and nothing after that. I was driving in 5 days. I was very careful not to lift anything until he cleared me. I saw him at 8 weeks and he said cuff was great and to get on with life. I made sure I walked regularly from day 2 and even was back in the gym at 2 weeks albeit on the treadmill. Back to weights and yoga after week 8. I thought it was a super easy recovery, especially compared tomy mastectomy.
Because I'm now postmenopausal, I am eligible for the AIs (Aromatose Inhibitors). After a long discussion with my MO, I'll stay on the Tamoxifen till I see him next fall at which time I'll be almost 5 years from diagnosis. He will then do the Breast Cancer Index test which measures your risk of recurrence from years 5-10 (Oncotype is more for years 1-5). If I score very low, he'll take me off everything (although I'm not sure i'm ready for that) or if I score high, he'll swap me to an AI which gives better odds against getting BC again. Till then, I will continue living my life and worry about the next bridge when it comes!
And glad I could help! I love to research stuff and BC is my newest and most favorite topic. My MO just sighs when I walk in his office with a stack of articles printed out for him to "discuss" with me. But he humors me so I love him.
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Just wanted to pop in and say hello and introduce myself. Just finished my last chemo today and will be starting Tamoxifen on December 1. Been lurking here for a while and will continue until I start the pill.
Thank you for all the helpful post.
Brandi
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Lala1, I've never heard of the breast cancer index test. Do you have any info on what it is?
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ORgal---All I know is what I've read. I've also seen it mentioned on a few threads here. My MO had never mentioned it until last week when we started discussing whether to swap to an AI. He said he does 3 or 4 a week now and finds it to be very reliable.
AnswersBeyond5.com | Personalize Breast Cancer Treatment with Breast Cancer In
Prognostic utility of the breast cancer index
Yale Study Shows Breast Cancer Index Test Impacts Extended Endocrine Therapy
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During the past few weeks, I have been to my Opthamologist office twice and seen a Retina Specialist for an increase in floaters and flashes of light in one eye. I have been diagnosed with a thinning retina and lattice degeneration. I'm 52 and been on Tamoxifen since January and began monthly Lupron injections in August.
One of the SE's of Tamoxifen is:
- cataracts in the eyes or other eye problems
- blurred vision
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Thank you lala, I can't believe I hadn't heard of it before. I'll be asking my MO about it.
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