What questions did you ask your MO about Tamoxifen?

I asked my MO the following things:

• 1.What SE can I expect – hot flashes, muscle aches, memory issues, etc.

• 2.How many of her patients have SE and how many do relatively well?

• 3.What is the likelihood of weight gain?

• 4.Do different brands affect the SE?

• 5.How long before the SE start?

Hopefully this list will get you started thinking about questions. I am 3 months in and doing okay. The SE have been bearable for me so far.

Hi Sara,

This topic wasn't on my list, but might (at 33) be on yours:

What about fertility/pregnancy on Tamoxifen?

Do you want (more) children? Will Tamoxifen make it harder to get pregnant? Do you need to take steps to preserve fertility before beginning Tamoxifen? Effect of Tamoxifen on a pregnancy? etc. Your MO may give you a referral to a fertility specialist depending on what you want...

Hope everything goes well for you!

LisaAlissa

Thank you for the list of questions HoundMom. I meet with MO Sep 15 and will begin tamoxifen then. I've been reading throughout how different generics can give different reactions. You given me a great starting point.

hi Sara, although I was 50 at dx, I had had a period in the prior year so was considered in peri-menopause and onc prescribed tamox. Took it for five years without many side effects. Hot flashes and night sweats were probably the most annoying. For the HF, I took to dressing in layers and carrying around a folding hand fan. (Still keep one on-hand to deploy PRN.) For the NS, I kept a fan blowing on me at night and kept a stack of clean t-shirts next to my side of the bed. When I woke up drenched, I could whip off the wet one and pull on a dry one. DH slept under a quilt all summer because I kept the bedroom COLD.

Here are some questions I'd add to the good thoughts above.

At age 33, ask if you're a candidate for five or ten years of tamox. I would have gladly done another five years of tamox but onc said no. By then I was age 55 and in full menopause so was prescribed anastrozole. Been on that for two years and it has its charms LOL but they're irrelevant here.

Also ask how your ovaries might be affected, e.g. cysts, and how you will be monitored.

Ask if you would benefit from a daily low-dose aspirin.

Ask about a DEXA (bone) scan. Tamox isn't known to be hard on the bones but a baseline might be good.

Best wishes and gentle ((hugs)).

Sara, I had no withdrawal symptoms when I stopped tamox. The low-dose aspirin is to thin the blood just a bit as tamox is associated with an increased risk of stroke, which is in my family history. I don't have to any more but still take one every day as it's become a habit.

I see my primary care doc once a year and my onc every six months. Hoping to graduate to yearly one day. :-)

Sara,

The fertility question is a good one, and I'll be interested to hear what you learn. My MO told me that Tamoxifen was initially being pursued as a fertility drug, but it resulted in birth defects. At the same time, they noticed what it did to cancer cells and then the research switched to breast cancer.

That would be a very interesting page.

You too Sara!

Those are really good answers. My MO didn't give as precise as you received. Thank you for sharing. I particularly found the time for SE and the comments about cysts particularlly enlightening.

Hello Sara,

I've been on about three weeks. Still feel tired, so I am not sure if from radiation or the medication or both. The tiredness hits hard around dinner time. I think what I notice most is achy muscles or just not feeling right. Maybe heavy is a better word. The hazy head hits in the evening.

She didn't offer a whole lot with my questions. She had this positive attitude that most women don't feel too much and that you hear most often from people who don't tolerate it well. The ones who are okay with it don't say a whole lot. She wanted me to go with the attitude that it would be fine - and to call if it wasn't.

She recommended taking it with food and trying it in the morning first. It that worked out well, keep it there. She said if I missed a dose more than a couple of hours, then skip it for the day.

As for weight gain, she said for a lot of us, we just have to take care like we would as we get older. I'm for 48 and already adjust my diet accordingly. She said that's what you do.

I'm glad that you can go off it in order to have children and then pick up again.

Hugs back!

Hello Sara,

The tiredness could be left over from radiation. Who knows? During the school year, most of my hobbies take a back seat. I teach college classes - I'm not full time yet, but between the classes I teach, I put in full time hours. I just hop from school to school.

I am going to stick to taking it in the morning, since I think it's going okay. My MO did warn me to take it with food although the label doesn't say so. She says it goes much better. I'm following that advice. It is good to have positive doctors who cheer you on. I'm glad to have her.

They want me to take it at least 5 years. If I tolerate it well, maybe 10. What did they say for you?

So what do you do for fun? And what's keeping you busy these days?

Hugs back.

Isabel

Hello Sara,

I am so sorry it's taken me so long to get back to you. I took on my normal load and then another class that comes up randomly started, so I'm juggling 6 classes, which is too much. I finally got back on today to catch up.

I teach English - freshman comp, freshman lit and technical writing. Usually I try for 5 classes, but sometimes I get to teach the state police, and they never run classes during a normal semester, so sometimes I get stuck with too many classes.

I bet the preschoolers are adorable. I know they are a lot of work, but I bet their enthusiasm and silliness are wonderful too.

I am not quite sure what brings joy at the moment - when I have time to think and breathe, I like to read and garden and be outdoors doing whatever comes my way.

For Tamoxifen, they are saying 5 to 10 years. A couple of weeks ago, I say some report about they're now recommending 10 for people. I have to go back and read it, but I mentally filed away the information.

Little Isabel sounds adorable. I bet it is hard to say goodbye to each class.

I have to make a point of checking back regularly. After tonight, I go back to 5 classes. It will still be busy, but I hope not nearly as stressful.

Take care. Hugs to you & Happy Thanksgiving.

Isabel