I decided to stop Tamoxifen a few weeks ago. Anyone else?

Cat123

Hi everyone,

I have been on Tamoxifen for three years.  I am 51 years old. I stopped taking tamoxifen a few weeks ago. I am just so tired of some of the side effects and I really want to lose weight as I think the weight I have piled on will lead to reoccurence.  Has anyone else decided to stop?  Does anyone know the actual stats for Tamoxifen?  Has anyone else stopped?

Thank you!

Lisa

foreverchanged

I have stopped Tamoxifen three times for a few weeks and will only be at the two yr point in October.  I can definitely relate to the weight gain as everytime I see my MO she tells me I need to lose weight but that I can't stop the Tamoxifen because I didn't do chemo.  I find for me it is almost impossible to lose whilie taking this med.  It is a tough decision to make and I think about it often for quality of life issues but still take the Tamoxifen at the moment.   You hopefully have benefitted from the three years on Tamox.

msphil

No sweetie, I never stopped taking tamoxifen, and I agree there are many side effects, but for me it made a difference, I too had lots of weight did I but it was for my best interest to take it and I did and Praise GOD I am now a 20 yr Survivor, no reoccrence. msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen).

coraleliz

Cat- you can go to Cancermath or adjuventonline & plug in your numbers. With my stats, it gives me about a 10% increase in disease free survival. There is another similar website out of Europe, can't remember the name of it.

I'm coming up on 3 years, perhaps I'll make it to 4.

gentianviolet

I just quit on July 17, after being on it for 4 and 1/2 years, the hip/knee pain became too daunting.  Now that the side effects are better, I feel guilty for not finishing out the last six months.  I never did plan to continue on it for 10 years but if I can have a year off (and no problems of recurrence) then I would be willing to do another two years or so........at least I think I will be willing to go back on.  Sending good thoughts to all who are contemplating whether to maintain or quit.

farmerlucy

The UK tool is Predict http://www.predict.nhs.uk/predict.html On the ki67 question they deem it positive if greater than 10%. However in the US it seems like many oncs, including mine don't pay much attention to ki67.

Congrats on three years. That is huge. 

I didn't take it for a year after diag. Now I kick myself because I'd be a year farther into this. But - we can only do what we can do. 

AlaskaAngel

Tumor was 1.9 cm. Took it at full dose for 1 year, then at half-dose for 3/4 year, then stopped it. Doing fine.

savgigi

Just a thought - I have seen on some threads that women split their tamoxifen dose and take half in the morning, half in the evening. That has helped with SEs. And at least 1 woman takes hers every other day or takes a half dose every day. It may be something to consider rather than stopping all together.

When I read the drug information on Femara, it said they found the drug to be effective in eliminating estrogen with doses as little as 0.5 mg. The recommended dose is 2.5 mg. I found no information on why 2.5 mg was chosen if lower doses (presumably with fewer SEs) were effective, but I feel I have a little "wiggle room" if needed.

One thing I discovered recently is that it is sometimes combinations of medications that cause problems. I have been on statins for years. Statins are known to cause muscle pain, but I never had problems with them. Femara can also cause muscle pain. I started having muscle pain that would wake me at night. I stopped my statin for 2 weeks and the pain went away. From that I learned that neither statins nor Femara alone cause me muscle pain, but the combination does. I realized I was taking the 2 meds at the same time. So now I take one in the morning and the other at night. I still get a little achy but pain no longer wakes me at night.

SailingWind

Personally I would ask to try something else. For ER and PR positive cancer that is the best thing you can do to stop it from coming back in the next 10 years. I would try something else. Would also look into different diet. Not always about eating less.

NatsFan

I was on Femara, but suffered horribly from s/e.  With my onc's permission, after two years I took a one month "vacation" from Femara.  The s/e began easing within a week, and by the end of the month, I felt almost normal.  The best part was that when I went back on Femara, the good effects of the "vacation" persisted for several weeks afterwards and my s/e returned very gradually.  So for a one month vacation I got an increased QOL for 3-4 months.  With my onc's guidance, I took a total of 4 one-month "vacations" and I did manage to finish my 5 years.  If my onc hadn't worked with me on those "vacations" I would have quit entirely.  I even timed one of them to coincide with a Caribbean sailing trip we were taking - I told my onc what a special trip it was for me and did not want to be aching and miserable during the trip.  She agreed completely, and even gave me the timing on when to stop so I'd be in the best possible condition for the trip.

My onc obviously preferred that I not take the "vacations" at all, but they were better than me quitting entirely.  I have an advantage with my onc - she's a b/c survivor who was on Tamox for 5 years.  She admitted that the only way she got through her 5 years was that she gave herself a couple of "vacations" during that time. I think that's why she was so willing to work with me on this issue to make sure I got a "vacation" when I absolutely needed it, but that I didn't take too much time off from Femara.  

Stopping Tamox doesn't necessarily have to be a permanent decision.  It's possible to stop for a bit to give the symptoms time to ease, then go back on it. Yes, stopping it for any length of time before the 5 year mark is a taking a certain amount of risk, but only you and your onc can weigh the benefits to your QOL over your risk of stopping completely.  Talk to your onc about this issue and by taking a "vacation" or two during the next two years, you may be able to get through your 5 years.  

And of course for weight loss, it's not only calorie reduction, but more importantly, it's exercise, exercise, exercise.  And of course the benefits of exercise for reducing the risks of recurrence have been well-documented.  My onc gave me a "prescription" for 30 minutes of exercise daily.  She was very clear that it was one of the best things I could do for myself.  I think another reason she agreed to my occasional "vacation" was that she knew I still had some protection from recurrence during those times because I was exercising daily. 

Bren-2007

Hi Cat,

I was 51 at the time of my diagnosis.  I had a Stage I Grade 2 tumor.  I had been taking HRT at that time because of a prior total hysterectomy.  Of course, the doctor's stopped the HRT immediately.  Right away I was in instant menopause.  After I had a lumpectomy and radiation, I tried Arimidex.  I only lasted one week.  Then I tried Tamoxifen and I only lasted 6 weeks.  That was 7 1/2 years ago and I am still cancer-free at this point.  I did what you are talking about doing, I lost a bunch of weight and it certainly helped me feel better.  I don't know if it had any effect on a recurrence or not.

Wishing you all the best,

Bren

Anonymous

Savgigi:  I don't take statins, or anything prescription other than Tamoxifen.  The tamoxifen dose I take 20 mg causes allergies, lots of joint pain and 15 pounds extra weight. After doing it for 5 years, I'll be switched to Femara or some other AI, but am freaking out at the thought of the SE's of those, which I hear are worse than Tamox.  As for women splitting the dose to taking smaller amount twice a day or taking it every other day, my MO said no way, she wants me to take full dose every day at one sitting.  Just don't know the "scientific" proof that it's any more effective taking it that way.  

Shelly

Marcasey

So glad to learn from you ladies. Since I started Tamoxifen Jan 2014, I've gained 20 pounds and have terrible joint pain. I have leg cramps at night and if course hot flashes. I just turned 54 and my onc. took my blood to see if I was far enough into menopause. If I am I can change to an AI. My estradiol level is 53. Not sure if that qualifies.