Any Tips to AVOID Side Effects of Tamoxifen?

PebblesV

Hi everyone,

I am supposed to start tamoxifen soon after I'm done with radiation treatment, and I've been reading a lot here and other places re: side effects, and others who have fared better on it, etc. I see a lot out there about side effects but not so much about WAYS TO PRO-ACTIVELY AVOID ANY POTENTIAL SIDE EFFECTS, and I was wondering if anyone had any advice? I'm SOooo wary about the side effects but also feel like I have to give tamoxifen a go because it's my ticket out of chemo due to my low-intermediate oncotype score.

So this thread is not about whether to take tamoxifen or not, but more about if we're going to have to take it for at least 5 years, what can we do to take it and still feel like ourselves as much as we can, and avoid side effects as much as possible?

In terms of articles out there on the web, so far I've only found this on potential natural ways to try to help with tamoxifen's effectiveness while avoiding side effects:

https://foodforbreastcancer.com/articles/breast-ca...

And this on managing potential side effects: https://www.urmc.rochester.edu/encyclopedia/conten...

I did reach out to a couple people who have been doing well on tamoxifen and what I've learned so far is:

- Gradually break yourself into your dose. Give your body time to recover from all the other treatments, maybe start with half dose for several weeks and then work up to the full dose.

- Take with food to avoid nausea, or at night.

- Keep moving to avoid the chance for blood clots.

- Clean eating seems most effective at maintaining or even losing weight while on tamoxifen, vs. other diets.

- Be moderate on coffee, alcohol and spicy foods to avoid / reduce hot flashes? The spicy food part will be hard for me.

Any other advice? I would love to hear your advice and thoughts based on your experience or what you've read. I haven't started yet, I know it's coming, and I'm just trying to learn as much as I can before I start to try and have as smooth an experience as possible.

Oh and because we could all use a dose of cute, here is little Domino cheering all of us on through this unexpected journey!

DanceSmartly

Hello Pebbles,

I think I am one of those who has done fairly well on Tamoxifen. I don't have all the answers for you by any means, but can tell you that I didn't start Tamoxifen until 2 months after I finished radiation (finished rads 02 Mar and started Tamox 01 May) because a) I thought it best for my body to try and deal with only one problem at a time and b) if I'm being totally honest, I was afraid of the potential side effects and put it off as long as possible.

I did start Tamoxifen at full dose (20 mg) and definitely experienced some side effects (headaches, insomnia, electric-like shocks in the treated breast) in the first 2-4 weeks, but they gradually declined over the next 4-6 weeks. I do take my little white pill at suppertime; similar to your research findings, several doctors have told me that taking it with food and at night seems to work best for most people. I started taking calcium and magnesium when I started experiencing leg pain / cramps at night about 2 months in, and those supplements seemed to resolve that problem.

Weight loss while on Tamoxifen is an interesting topic. I had gained weight (15 lbs!) following my surgery and radiation and the first month of Tamoxifen, mostly because I was out of routine and was too fatigued (especially the first six weeks after I finished rads) to care. I continued to read that weight control and exercise are key to preventing re-occurrences, however, so decided I had better shape up. I have lost 20 lbs in the last 6 months and it was surprisingly easy. I simply cut white sugar, white flour and white vinegar out of my diet. I don't do caffeine (coffee or carbonated drinks) or alcohol either. I still eat whole wheat and multigrain products, and any sweets I eat are made with cane sugar, maple syrup or honey. It is a real pain to eat out; I pretty much have to stick to gluten-free menu choices and fast food is basically not possible. But it sure works (honestly, I was a bit shocked at how well it has worked!) and I feel great! ! And equally importantly, I feel like I am putting my best foot forward with respect to not feeding any lousy cancer cells that may be lurking somewhere.

Incidentally, I have had maybe 2 flashes since I started Tamoxifen. Not sure the diet is the reason for my lack of hot flashes, but believe it may be helping there too?

It's not all roses, of course: my eyesight has deteriorated at bit (I struggle to read tiny ingredient lists now; never had in the past) and my oncologist tells me Tamoxifen is likely the culprit (who knew your eyes need estrogen?). Also, I believe I have some of the confusion / fog people talk about (I find myself reaching for a word or name that won't come when I want it, and I forget things that I never used to - I have to write things down now). Freakin' hormones: can't live with 'em, can't live without 'em!

DanceSmartly

Edited to add: Forgot to mention (there's that memory fog! ) that I also have mild vaginal discharge (no dryness or atrophy) and reduced libido. The latter really sucks, and my poor husband has at least 5 years of this to look forward to. Feels unfair, when we are only in our early forties!

Wigging2000

great post, DanceSmartly!

I’m a definite tamoxifen candidate after my surgery. It’s nice to hear someone give a somewhat positive spin on the side effects.

I have recently lost 25 pounds and hope to keep it off post surgery with clean eating. I won’t lie though, I’m not completely giving up my red wine.

-Wigging

PebblesV

DanceSmartly - Thank you SOooo much for posting some great advice! It's hugely encouraging and comforting to hear from those who have done well on Tamoxifen. Starting 2-3 months after the end of other treatment is similar to someone else I heard from who also had less side effects, I think I will inquire about waiting to start as well.

Congrats on losing weight WHILE on Tamoxifen as well. That's GREAT to hear because I want to continue my 'get in shape' journey (I've been on this kick ever since the bc diagnosis) and don't want tamoxifen to slow me down. I have horrible eyesight already, is it a given that tamoxifen worsens that? That part worries me.

I hope you and your husband find your 'groove' - my husband and I are also early 40's... at least good to know there has not been dryness. I guess more cuddling?

Wigging - Congrats on your weight loss! I think we have similar paths, I also lost 24 lbs since the diagnosis but have more to go. I think I'm trying to lose as much as I can now because of what I hear re: tamoxifen and weight gain, although research says there are no definitive studies that link the two, it's more people's personal stories. It seems the clean eating (like DanceSmartly did) is the best way to continue weight loss / avoid weight gain once on tamoxifen?