Newbie on Tamoxifen - side effects?

AngeYVR

Hello! I’m brand new to this community and want to say how nice it is to find the support and resource. Thank you!

I would like to learn from your experience on Tamoxifen:

I am 2.5 months on Tamoxifen (Nolvadex). This is following a lucky early diagnosis of two lumps on left breast in Dec 2019 (one benign, one malignant) and a super speedy lumpectomy to remove both. All clear with lymph node biopsies. Further followed by 20 (15+5) fractions of radiation. A MamaPrint test revealed that I wouldn’t really benefit from chemotherapy. Lucky for me, everything went quite well and I didn’t experience very bad side effects.

I’ve never been on medication for any period of time (longest would’ve been antibiotics for a week once every 5 years). And now here I am, diving into 5 years of daily tamoxifen. All this to say, I can’t tell if some of the things I’m experiencing is from the drug or from something else!

So far, I’m experiencing ...

- headaches (never super strong, but can hang around all day for days at a time)

- exceptionally dry lips since about 3 weeks (not dry mouth). But the lips are so dried that I spend most days covered in vitamin E oil and no real improvement. I’ve never had that before. And it’s driving me BANANAS!!

- I sleep well, generally. I usually feel cold at night so I sleep in a hot water bottle and socks and the full gear in winter (hello, Switzerland!) but the last few nights I woke up at 4am feeling very warm (though not sweating).

- the skin on my face is a little drier than usual, but nothing I cannot handle.

- as for weigh gain, I seem to so far be going the other direction, but nothing dramatic (my same jeans just fit a bit more comfy... perhaps it’s just from all the healthy Quarantine Home Cooking) Hopefully it maintains this way instead of more weight loss / gain.

- experiencing extra vaginal discharge (that happened almost right the way)

- and, very important, at least for me. Definitely lower / no sexual appetite. Important for me because I am in a very happy relationship of over 6 years and sex plays a part. My partner has been incredibly understanding and patient throughout the last 4 months. But I think I am the impatient one that would like to make sure that part of our relationship doesn’t get neglected. I would like to see if others experiencing this and if it goes away after awhile on this drug?

Sorry for the looooooooooong message! Can’t you tell I’m a Newbie here?!? 🤣 Thank you very much in advance for your sharing.

xAnge.

flashlight

Hi AngeYVR , There are a lot of good post about Tamoxifen and dryness. It is important to stay hydrated. Did you tell your MO about the headaches? Have you gone for an eye exam recently? I have terrible dry eyes from taking it and fish oil supplement has helped. I just had a hysterectomy in Feb so I don't have the vaginal discharge any more. It is good to be checked out by your Gyn while on this med and have a baseline transvaginal ultrasound. Don't be so hard on yourself this is a new normal for you and it sounds like your partner is very supportive.

gb2115

I have all over dryness from the tamoxifen, but it took at least 6 months for that to show up. I use Retaine eyedrops and biotene gel. I haven't figured out the vaginal dryness yet. I have a tendency towards skin allergies so I am afraid to put anything down there.