5 year survivor now done with tamoxifen....what to expect...

sunflowe

Hi all

A very happy New Year to all of you here, I am looking for some information, possible connections and or tips on what I might have to expect after the Tamoxifin procedure. After chemo and radiation it's been 5 years now and I am starting the new year without, today being my first day. I have talked with my Onc about possible other replacements as it has done well keeping my bones strong. Would love to hear others opinions on that as well.

I find that I have also used it also as a mental crutch of sorts! So I am a little anxious about things to come, withdrawal etc.

I would love it if you could speak up and share your experience with me.

Thank you for taking the time to read this.

farmerlucy

Congratulations on being done! I've stopped Tamoxifen three time in the past four plus years and I never had any withdrawals from it. I think you'll be just fine. Take care!

Moderators

Congratulations on being finished with your Tamoxifen treatment! Withdrawal symptoms seem to vary greatly, person to person. For bone strength you may find some helpful suggestions here as well: Bone Strength. Looking forward to hear other's experiences as well.

coraleliz

I stopped Tamoxifen in October after 5 years. I feel better off of it. I guess my achy joints are from getting older. I actually have more hotflashes off of it than I did on it. I think most women have the opposite experience. As far as my hotflashes, they are mild & not really a problem.All my other side effects went away. I chose not to continue on an anti-hormonal for an additional 5 years.

journey2bfree2bme

Congratulations on your five year milestones in your cancer journey. I had my five year visit this past week with my Oncologist. I stopped taking my Tamoxifen (after 5 years due to ER cancer). I have been experiencing extreme hot flashes, itchy eyes and some malaise. I came across your post while looking for any information on Tamoxifen withdrawal/abstinence effects. Any suggestions or forewarnings would be greatly appreciated.

tc9876

I just finished 5 years of tamoxifen about a week and a half ago. My onco wanted me to do another 5 but the real benefit was so low that I said No, thank you! Since stopping, I feel tingling in my left arm and hand (neuropathy???) which I rarely felt before. I also have low energy. I haven't had any unusual aches or depressive thoughts. I also feel like I have a slight uptick in hot flashes. I have no regrets with not continuing though. I'm just trying to eat right, exercise and manage stress to keep my immune system high so that I can live my life!

lala1

I've also just finished 5 years on Tamoxifen and already I think my hot flashes are worse. Can anyone tell me if this will get better?

Stavasci

Congrats on 5 year survivor! I've been diagnosed with stage 1A IDC. Any tips to beat this cancer once for all in addition to radiation and or chemo? Did you have to change your diet a lot?  any tips is appreaciated.

Thanks 

edwards750

I haven’t experienced joint pain since I went off Tamoxifen year before last. No hot flashes either or trouble concentrating.

Stavasci - there are things you can do that will help avoid a recurrence but the fact is there are no guarantees no matter what you do.

I am 6 years out from IDC, Stage 1, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years. I have an 8% chance of recurrence according to my Oncotype score.

From what I understand a more aggressive cancer increases your chances of a recurrence. Having said that there are ladies on this website who have had it come back who didn’t have aggressive cancers. Doctors don’t know exactly why.

You just do all you can with treatments and meds and watch your diet. Nothing too obsessive despite what you read about alcohol and sugar. Everything in moderation.

Good luck!

Diane

lala1

Stavasci--- I agree...everything in moderation. One of the best things you can do to help prevent recurrence is exercise. I go to the gym pretty much every day and try to get 45-60 minutes of exercise. I strength train twice a week, do yoga twice a week and hit the treadmill, elliptical or bike 4-5 days a week. Before BC I had never exercised, never been in a gym. Now it's actually a passion of mine. I had my Vit D levels checked and found I was sorely lacking despite being outdoors all the time. Found out that our use of sunscreen helps to lower D levels. I'm taking 5000IU and have it back up in normal range. Good D levels will help prevent recurrence as well. Other things that will help are 4-5 servings of fruit and veggies every day (which I am really bad about not getting!) and according to my docs, a daily baby aspirin, and a good fish oil with DHA/EPA levels of at least 1000mg daily. I also take turmeric which more and more studies are showing to not only help with joint pain from Tamoxifen but might help prevent recurrence. But in all honestly, my doc told me that exercising daily and getting at least close to your BMI will help as much as hormone therapy.