Headaches, fever, nausea after a month on Tamoxifen

lallison

I started off thinking I was really lucky with no side effects from Tamoxifen until a week or so ago when I was slammed by a migraine.  I have some minor hot flashes but nothing I didn't think I could manage.  But the migraine...i don't get those much...very few times in my life.  And every day a headache to some degree.  Then nausea, fatigue, feel weak and achy and have now discovered I am running a pretty constant fever.  To my knowledge I have no other infections.

Anyone else have this flu like feeling?  And asking opinions....with just LCIS I don't really see that my risk is super high of developing invasive BC in the future anyway (higher than others but not super high based on some of the stats I've read).....so...is Tamoxifen worth it for me?  Thoughts?

proudtospin

I do not get migraines but have a good friend who does, isn't it thought that stress can bring them on?

then again,if you think you are ill, call the doc by all means

lallison

These are new since Tamoxifen so don't think stress is the reason. I'm certain this is related to the medication.

Anonymous

How long have you been taking the Tamoxifen?  .....and are you sure it is the reason for the migraines?......

Whether you should continue is a personal decision, but I can tell you from my experience (only 1 year so far) that the SE's lessen with time (except the weight gain! LOL )

lallison

I just spoke with my BC surgeon and she instructed me to stop.  The fact that I could never tolerate birth control pills played into it - they also caused migraines and nausea to the point I couldn't take them at all.  Sensitivity to anything that messes with my hormones seems like a pattern.  I have hypothyroid and have had some metabolic issues before...not sure if that has impact, but maybe....

lallison

I'm sorry to post on my own post...but I'm having slight meltdown.  This was all supposed to be so simple.  Have the cells removed, take some medication for a few years, done deal.  And so many people on this forum and out in the world have it SO much worse than me.  So much more trauma, invasive cancer.  This was just LCIS, no big whoop.  I feel like a fool for even feeling how I feel right now.  Tamoxifen has messed with me pretty bad.  Symptom list:  the requisite hot flashes of course, but then insomnia, bone weary fatigue, weakness, soreness, muscle cramps, headaches ranging from every day annoying to migraine, palpitations, nausea, vision bothering me, sensitive to light, constant low grade to medium fever, bumps on my chin and now lip and mouth sores.  

It's just a hormone drug, I keep telling myself.  It's not REAL chemo...don't be such a wimp.  But I'm miserable. And five years of miserable just seems like a bad plan.  And now I'm getting these stabbling, and I do mean, stabbling pains around the surgery site.  Something I'm told now is pretty common because of nerve damage, etc.

Doggone it.  I really wasn't expecting to feel so lousy.  My heart...and my utmost admiration...goes out to folks out there who have been through so much more.  I really really admire you.

stingraysusan

Dear lallison: So with you on the Tamoxifen. Long story short,, but still a bit long...found lump on my own 1/31/13, had mammo/ultrasound on 2/1/13 and indicated no suspicion of malignancy.  I did not believe it.  My intuition was telling me I was a victim of a false negative mammogram/ultrasound, I felt.  Consulted two surgeons on my own who said to come back in 3-6 months.  Found surgeon to listen to me and I had lumpectomy 2/28/13. Path said Stage 0 DCIS, grade 2, Estrogen/Progesterone positive with "clear"margins-I was awake for this one and he did three more excisions during the procedure to get "clear" margins (it amazes me the definition of "clear" margins a wide variety of pathologists have).  I questioned it from the very beginning.  Did not do "standard of care" 7 weeks radiation, but explored brachytherapy 5 day radiation to see if I was a candidate (something most doctors do not offer you the option) nor will the radiation oncologist tell you that once radiation is given, should another lump, etc. come up, the breast cannot be operated on again...it would be a mastectomy.  I had to ask that question and it was only then, the information was given to me. My experience with Tamoxifen for 10 days: morning after I took first pill, I was on couch the whole time with the worse college type hangover, facial swelling, hives, weakness, headaches, nausea, not thinking right, vaginal discharge. Was on the couch for 10 days, literally.  Oddly, instead of having my usual hot flashes, I was freezing cold. What made me quit taking it was even more frightening: as a daily exerciser, my legs became warm, like heavy concrete blocks and could not walk across living room and scared me to death.  Postmenopausal, I tried Arimidex too....same problems. Had MRI/MRI biopsy and re-excision in June, 2013 (per second opinion doctor) and still could not get clear margins based on the Van Nuys Prognostic Index.  My DCIS had morphed to plemorphic LCIS mixed with DCIS throughout the breast, extensive-not invasive, within 4 months. Since it was extensive and not confined to the specific area anymore, I would not have been a candidate for the 5 day brachytherapy anyway.  It was close to becoming invasive according to pathology reports, but sentinel node and two nodes removed during mastectomy surgery were negative.  To forget this nightmare, I decided on a simple mastectomy performed on July 2, 2013 to not have to take the harmful, non-quality of life medications/treatments. Was doing normal stuff the following week pretty much with drain removed after 5 days. I opted for no reconstruction, but it appears surgeon left skin (no nipple-my decision) in case I would, so I do not look any different in my bikini tops, oddly.  It is always a good idea to show surgeon what you look like in your regular clothes on your ipad, phone, etc. prior to surgery, I found out. In asking him if I would be able to wear these swimsuit tops, he said "I do not see why not".  Surgery was done outpatient under iv sedation I cannot take general anesthesia, so they agreed to do the iv sedation and worked wonderfully and aided in my going home faster from hospital) and was home by 4PM the very same day.  Swimming-type exercises were recomnended...very hard at first, but sure glad I did it, with day two starting 5 lb. weights and 10 minute walks, again very hard...was a fast home recovery.  I truly feel I am one of the lucky ones: it was caught in time, I got second/third opinions, was on it like a detective for four months, and did not fall victim to a false negative mammogram from the very beginning. Now, I only am to do six month follow up MRI/mammograms for a couple of years. Mastectomy is such a personal, individual decision, but I have not regretted it at all due to the fact I know radiation and drug therapy will ruin my quality life (chemo was not indicated for me) or even put me down for a long time...this was clearly demonstrated by a little bit of Tamoxifen & Arimidex.  Being a small woman with low BMI, the surgery did not seem hard and enabled me to move on to bigger and better things than going to doctor's appointments every couple of weeks and quality of life things like my scuba diving again. Feel free to direct message me if you would wish.   

MameMe

Stingray, I was just scanning the site here for the remote possibility that my day long headache, nausea and runs were possibly connected to taking my first Tamoxifen this a.m. When I read your experience, I was amazed. I also had a poor response to bc pills, and could not tolerate hormone replacement therapy at menopause: most people loved the stuff, but it made me feel awful.

I am not yet positive, but the Tamoxifen is in the running for cause, unless I have food poisoning or a 24 hour bug of some kind. I literally collapsed on the couch, cancelled errands and then dragged myself to bed, out of it and miserable from 11a.m. til 9p.m. I feel like a dishrag now, but not nauseaous anymore. Headache is a little better.

You were a real trooper in pursuing a treatment path that worked best for you. Thanks for posting your adventures, such as they were. Mame

msphil

yes the side effects from tamoxifen vary, But I too had weight gain problem, fatigue,sometime headaches, not regularly, and I had extremely bad hot flashes,But again I must say, it was worth the side effects since I am now A 19 yr SURVIVOR(Praise GOD).  msphil(idc,stage2, L mast, 3 months of chemo before and after the surgery, rads and 5 yrs on tamoxifen, and all while preparing for our wedding.

Rennasus

Ladies, I have been on Tamoxifen for 2.5 years and the SE's have been so severe the past 2 months that today I stopped taking Tamox. Felt like I running a low-grade fever for 2 months. When I take my temp, tho, it is below 98.6. I feel sick. Pounding headaches daily. No energy. Weight gain. Trouble sleeping. Overall lethargy. Sproradic and random pain all over my body. Nausea. Intense hot flashes, even more than usual Tammi hot flashes. My Onco wants to switch me to AI in October. I am taking a Tammi break until then. I was wondering if other women have experienced SE's worsening after taking Tammi for a couple of years? Thank you.

Rennasus

*bump*

lallison

I was getting ready to post...I'm back with more LCIS....dang it....and saw messages I hadn't seen on this one. Thought I'd update here. It is a pretty long story but I'm glad the Tam made me sick. I thought I was done with periods and was almost through a whole year of not bleeding when I took the Tamox so was surprised it caused me so much trouble. Well, it sent me to a new OB-GYN who discovered I had stopped bleeding because of growths throughout my cervix, uterus and ovary/tube (I only had one remaining) had closed up my cervix. They had to open it (will spare you those details but will say...ouch) and I bled continually for weeks and ended up on iron pills. It was fun (not).

After more imaging the decision was made for a full hysterectomy. We're having a sale and everything must go! And so we did. Recovery was not too bad and I got a few weeks of disability leave out of it which was great for my physical and mental health. Some small bits of hot flashes and adjustments following surgery but overall I felt much better.

I did not resume the Tamoxifen after surgery. Decided to stay feeling well. I hope that decision was not a factor in new stuff showing on my mammogram - the other breast and bits that weren't there last mammo - that is most likely LCIS. Have stereo biopsy scheduled for Friday (love that table!) and will know for sure after that.

BreatheDeep

Hi lallison, just wondering how you are doing now that its been a little while since the hysterectomy and stopped taking Tamo. I took one pill and was so sick I knew I could not take that drug. So, I've taken on a whole natural regimen from this point in my treatment on, and feeling good with my decision. I hope you are well and feeling positive.