Taking tamoxifen with LCIS

Chloe1313

Hello, I am hoping for a little guidance. I have had several lumpectomies & biopsies over the last 6 months. 9 total. One came back pre-cancerous (it was very, very small), the rest atypical, all had LCIS. All the lumpectomies came back with clean margins. I also had a mass in my lymph nodes that came back benign. The doctors are all telling me that the tamoxifen is the best thing for me. I have been taking tamoxifen for about 3 weeks now. The first two weeks were fine, the last 5 days have been a fast progression into hell. I have fatigue, bowel issues, weakness, nightmares, my body feels like I am running a high fever but I am not running a fever. It is that same kind of feeling. My question to everyone is, do the side effects get better or worst? And is anyone taking anything else that maybe doesn't have these horrible side effects?

thanks

rosyFL

Hi Chloe,

I'm surprised that those who are taking tamoxifen or have taken this drug haven't jumped in yet. 

Have you spoken to your doctor about your side effects?  Make an appointment if necessary and discuss this with your oncologist.  You shouldn't have to suffer like that!

Seems like you've had a lot to deal with in the last 6 months.  What was the pre-cancerous condition you mentioned?

 

leaf

I'm sorry you're going through this. I don't often log in anymore, because, finally, after 10 years, I'm moving on to other parts of my life.

But I did do 5 years of tamoxifen after classic LCIS, with a low risk family history (about 3 out of about 10 second degree female relatives had postmenopausal breast cancer.)

Everyone is different. I started taking tamoxifen when I was peri-menopausal, so I don't know if any symptoms I had were due to being peri-menopausal or not. I had benign endometrial polyps about every 1.5 years while I was on tamoxifen. For me, it wasn't bad at all.

If you read the Tamoxifen forums, you can see that some people have an absolutely horrible time on tamoxifen. I did not. I had mild warm flashes at first, and felt somewhat weird, but after a few months, these went away. That does NOT mean you will have the same experience because we are different people.

Please do understand that in any forum, the number of people that have symptom X in the forum can have nothing to do with the number of people that have symptom X in the general population. Remember, it takes time and energy to post, so most people who post are having issues or problems with their treatment. The people that don't have any problems with their treatment generally do not post.

Many of the symptoms you are having are not very quantifiable. For example, people do have fatigue and nightmares who are NOT taking tamoxifen, and its hard to quantify these symptoms. That does NOT mean you are 'imagining things'. We don't understand the causes of things like fatigue or nightmares because they are complex. I do not know if they are due to tamoxifen or not, but that does NOT mean that your emotional pain is any less.

Your experience is just as valid as my experience. I want to emphasize this because, for example, after some people have an OK experience after a breast biopsy or breast bracketing before breast excision, they reassure an anxious poster that it will be fine for them too. I don't think that's always helpful. For me, the experience of breast bracketing was one of the top 3 horrendous emotional things that has happened in my life. My experience was different than their experience. I would feel awful if someone implied I should have had an OK experience when I clearly did not. You may have an entirely different experience. So to me its very important to validate everyone's experience - give everyone the room to have their own personal experience.

I hope you well in your decision about what to do next. Some people do fine on tamoxifen, some people have a terrible time on tamoxifen from the get-go, some people have a terrible time at first but it gets better, and I'm sure some people have a fine time on tamoxifen at first, but then it gets worse.

Chloe1313

thank you everyone for getting back to me. I'm sorry it took so long to reply. I will be honest, the last week has been horrible. The pain that felt like it was in my bones became more painful every day. I was so tired and weak, I could not function. I had called me doctor the day I wrote the post and she told me to give it time for my body to adjust. I gave it another week and I couldn't do it another day. The bowel issues, the bone pain, the fatigue, weakness was more than I could take. I couldn't even get myself up for work. I called my doctor and told her I just can't take this any more. I was told to stop taking it for 2 weeks and then come in and have lab work done. I have been off of it for 4 days now. The bone / body pain is almost gone. I slept for 10 hours last night. I still have stomach pains and I haven't had a normal bowel movement yet, but it is getting better. I don't think tamoxifen is for me. Thank you for your support. I guess I just have to see what happens after my lab work.

Blue1

I have taken tamoxifen for five years now with none of the terrible side effects you describe. Speak to your BC nurse and see what she suggests, it may all settle down but just check with the experts. They will not think you are bothering them

lyzzysmom

I am not on Tamoxifen just now but hope to start again. The first month I took it my by bowels were upset but that was one side effect that did go away after a month or so. I could cope with the hot flashes but not the fatigue and sleeplessness. I am an insomniac anyway but could barely sleep, even with sleeping pills, and had problems doing my job so I stopped after about 4 months. My primary care has now put me on effexor, which makes me feel weak and lazy but I am giving it a chance if it means I can start the tamoxifen again. Definitely don't recommend stopping it but perhaps you can get something to help with the side effects.

Chloe1313

I asked the doctor if it would get better or if there was something I could do to combat it, but they said to go off of it for 2 weeks and then come in for lab work. My side effects got worst every day to the point that I could not function. I was so weak and in so much pain I couldn't even make it through the day at work. I have to drive an hour to and hour and half depending on traffic each way for my job. I do not have the option to work from home and it was getting to the point that I didn't trust myself to drive. My job has been great through all of this, but I don't know how much longer they were going to take me not being able to function at work. I have been with the company for 17 years. And I think because of that they have really gone above and beyond for me. I have been out a total of 48 days from September to February between lumpectomies, sentinel node biopsies, lymph node removal, tests, scans, etc. They have paid me for every day and have not given me a hard time at all. in that time also, they have allowed me to either come in late or leave early at least once a week. But if I can't get here and when I am here I can't work and keep making mistakes, eventually I think I might have lost my job. How are you able to function with day to day life? I was so weak on it I couldn't even pickup a laundry basket. I have had many people tell me that they could no longer work on tamoxifen. I don't have that option. And do the pros of tamoxifen really out weigh cons? Yes it may prolong my life but what kind of life will I have? Just one month on it I went from being a very active person to someone who was so weak, tired and in so much pain I couldn't do a task as simple as moping the floor and the bowel issues were so bad I was afraid to leave the house. Having an accident while stuck in traffic for an hour is a horrible. Having that happen more than once is something I can not live with. I am off of it a week and a half and I was able to go on a 7 mile hike and I felt great. I am sleeping, I have so much energy and my brain isn't in a fog. I am seeing my doctor tomorrow and I hope she has some suggestions. Thanks for your reply.

leaf

Hi Chloe,

Your potential risks/benefits of tamoxifen will differ depending on your prognosis. Particularly in classic LCIS, tamoxifen and/or antihormonals are only an option, not a 'near requirement' for treatment. If I remember correctly, in some situations in some situations of invasive breast cancer, antihormonals can decrease the risk of recurrance of invasive breast cancer by something like 50%. If your baseline risk of a recurrence of invasive cancer is 80% (theoretically, for some situations involving invasive breast cancer), antihormonals might cut your risk to 40% - in other words an improvement of 40%. If baseline risk of invasive recurrence was 3%, then cutting 3% in half would be about 2%, which wouldn't make much difference - in other words, if your chance of recurrence is small, then the benefit of antihormonals will be small too.

I hope you got some clarification from your doctor. Best wishes.

Chloe1313

I saw my doctor this week. She said that the side effects I had were not typical. I told her I don't understand how she could say that when the booklet she gave me has every side effect I had listed as a side effect. She wanted me to try to go back on it and if I had the side effects again she would have me take a leave of absence from work for a few months until I adjusted. This is not something I am willing to do. Her next plan is to put me on Raloxifene. Has anyone tried that?

Anonymous

chloe--I'm so sorry to hear you are having such a hard time with tamoxifen. I have been very fortunate to have tolerated both tamox (5 years) and evista (5 years, and still taking it) with very minimal SEs, mostly hot flashes. It takes about 6 weeks for tamox to get out of your system completely, so I would suggest you wait at least 2 months before starting evista; that way any SEs you may have will not overlap. (I took a 4 month break inbetween the 2 meds). Evista is generally well tolerated by most with little to no SEs, and it's good for your bones and your cholesterol too. I was diagnosed with LCIS almost 12 years ago, still do high risk surveillance of alternating mammos and MRIs every 6 months. (I have family history of ILC, my mom is a 28 year survivor and still going strong at 86!)

Anne

Chloe1313

thank you Anne. You have given me hope! I am going to wait to start taking it.

I am so glad you are doing well. I hope your Mother's Day is wonderful!

Thank you so much

Chloe1313

hi,

Anne I took your advise and waited to start the Raloxifene. I have been taking it a few days and already I'm tired and lacking energy. I am going to give it time and see how I do. But one thing I did read is that this drug should only be taken if you have already been through menopause. I have not gone through menopause yet. My period is not regular and I would get a hot flash now and again, but that is it. I asked my doctor about this and she said it was fine that there is not enough data to prove it should not be taken. Should I be more concerned? I want to trust my doctor and I don't want to be a total pain calling all the time but this is my health. I know she was annoyed with me because she wanted me to go back on the Tamoxifen and go on leave from work for a few months to see if the side effects decrease over time. I refused to do that. Has anyone else taken raloxifene before they went through menopause?

Anonymous

chloe----as far as I know, the studies on evista as a preventative for bc , have only been done with post-menopausal women. (that doesn't mean that it won't work with pre-meno, it just hasn't been studied in that group). I'm sure it probably takes time for the body to adjust, as with any new medication (they say 2-3 months for tamox, and up to as much as 6 months). I hope you are able to tolerate it. Hang in there.

anne

I_Spy

Chloe I don't know about Raloxifene before menopause, but I do know about doctors who "get annoyed" when you question their decision/directions/opinions. Just remember that this is your life, and the doctor is not the boss of your life -- you are. *She works for you.* So if she gets too annoyed with you for not doing exactly what she says, or asking questions, etc., it might be time to get a new doctor. I would be very concerned if the doctor gave me a medication that the literature states is for post menopausal women if I were not post menopausal. How about a second opinion from a different doctor, and/or call the pharmacist. The pharmacist is an untapped source for a lot of people: they are very knowledgeable about the use and safety of medication and any pharmacist at any pharmacy will talk to you and give you advice about medication.

Chloe1313

Ispy, I never thought of asking the pharmacist. Thank you so much. I am going to go there tonight. I am trying to find a doctor that is in my insurance plan for a second opinion. Thanks for you help everyone.

I_Spy

Awesome and you can also call. One time I called three different pharmacies (drugstores like CVS and Rite Aide) to ask the same question of three different pharmacists. They were all happy to answer my question even though I hadn't filled the prescription there. I was testing to see if I got the same answer haha. They all had different impressions and opinions, although the data was the same. It was very helpful. Pharmacists are happy to answer questions I think because people don't usually ask them.

Crescent5

I have found that I am sensitive to the fillers in certain brands of tamoxifen. I will only take teva brand. The others make me feel awful. Even though it's suppose to be all over my file that I should only get teva brand, one day this spring I opened a new bottle, took a pill and 30 minutes later I felt like h*ll. I looked at the pills and sure enough, they were not teva brand.

It's worth looking into that.