Stoping Tamoxifen after 6 months

pfulps,

I am sorry you are experiencing so much pain from a drug that should be saving your life. I have had some SEs, but not what you've had to deal with. You have been through so much. This is a rough road we are on. I am sure you will hear from others on this site who can help. Stay strong!

So sorry to hear of your experience, yet I understand completely as mine was very similar. Tamoxifen for three months, Aromasin for two, back to Tamoxifen for two, then I quit for good. My QOL was so severely impacted that it didn't make sense to me to continue; even with Effexor (which took me two months to wean off of) the SEs were horrible. My original cancer was only 50% ER+ and 10% PR+ (eventually deemed negative) and my MO explained that Tamoxifen and AIs wouldn't necessarily be of a high benefit to me. I spent a month weighing the cost/benefits, and ensuring I would never blame myself if I had a recurrence. Even now, with a local recurrence (TNBC), I have no regrets about stopping.

Most have minimal to no SEs on these meds; for some of us it is debilitating. It breaks my heart that we fight so hard to get through chemo and rads and surgery, to get to the point where the "easy" treatment is harder than all that came before, and severely impacts our ability to live the life we're fighting so hard for.

I wish you well in your decision, I know it's not easy. Take the time to really think it through, and in the end be at peace with whatever decision you make, knowing you will never have any regrets.

Take care.

dtad - You make an important point that we need better treatments that don't so severely impact our QOL - otherwise, what are we fighting for? My comment was that most women have "minimal to no SEs" on this class of meds (Tamoxifen and AIs, which seem to have fewer SEs overall than Tami). I should further explain that I mean for many, the SEs are manageable and some even report no SEs at all (I just read a thread for those sharing their experiences of feeling *better* on Tamoxifen - I admit a twinge of envy).

I've heard the 50% stat myself and when I mentioned it to my MO they seemed surprised. Somehow I was the first patient in the last few years who quit due to SEs, but we were patient with each other throughout my attempts at different options and our conversations helped her in understanding what other patients were experiencing (so said a friend/fellow patient of the same MO). I think we need to continue sharing this information with our teams so they believe - really believe - that we need better meds with fewer SEs than these, especially if the new push us 10 years (or longer). My MO originally tried the, "you can do anything for 5 years, you're young!" line on me. I doubt she would have said the same thing if the recommendation had been 10 years

I tried for a few months. Side effects were intolerable, so I quit. After all that cancer treatment, I just want to feel like "me" again, even if that means I am here less time. Sadly, it is also possible to progress while taking these meds. There are no guarantees with this nasty disease.

I've been on Tamoxifen for about 5 months, but not sure I'm going to continue. Constipation has become a huge issue and due to this I've been diagnosed with a rectocel. Am currently doing PT to hopefully avoid surgery to correct this condition. Both the physical therapist and gyno agree it is important for me not to become constipated. Uhhhh.......

Per my transvaginal ultrasound yesterday, I am scheduled for an endometrial biopsy on June 6 due to a thickening in the endometiral lining. Thanks Tamoxifen.

Am currently about 15 days into a 20 day Tamoxifen break. I had a colonoscopy on Monday. The gastroentologist had me go off Tamoxifen 10 days prior, due to the constipation issue. She did not want anything interfering with a "successful prep." She removed several polyps and zapped some hemorrhoids, so she told me to stay off the Tamoxifen for another 10 days so I can heal properly.

Before this Tamoxifen vacation, I was having so much pain in my back and hips that I was going to call my OC and demand a bone scan. These pains are almost totally gone now, so I guess Tamoxifen was probably the culprit. Emotionally I'm feeling better as well, no more weepy crap.

I'm going to have a really hard time convincing myself to start taking the Tamoxifen again in a few days. May wait until after the biopsy, may not start taking it again at all. I must admit I started it only reluctantly and a year after my OC wanted me to. My mother progressed to Stage IV while taking Tamoxifen, so I've not had great faith in it.

I tend to think my use of supplements, including DIM and flaxseed, cleaning up my diet, home and personal care products, getting a handle on my stress levels thru meditation, practicing gratitude and forgiveness (see Greg Anderson's Breast Cancer: 50 Essential Things You Can Do) and exercising regularly are more important in preventing a recurrence than taking that nasty little pill, but somehow I convinced myself doing everything (including the Tamoxifen) was a good idea. Now I'm not too sure about that!

I'm with you on the Tamoxifen fence. As my predicted rate of recurrence in 10 years is under 10%, I wonder if the side effects are worth the risk. However I was in the 10% whose mammogram findings turned out to be cancer, so statistics don't really impress me a lot. I almost quit Tam. but read about and tried Magnesium. Like magic, it helped (at first) with mood, insomnia and pain. Now the pain is back, but I also inadvertently changed the dosage of Mg. My chiropractor has suggested co-enzyme Q-10, which I will try. Constipation, hot flushes, teeth clenching, pain, weepiness, moodiness, memory loss and fatigue, or the possibility of a recurrence in 5 to 10 years. What a choice. My husband has had pancreatic cancer for over 2 years and he feels better than I do! I believe, as another poster said, that it's just a big crap shoot. Do you follow the crap, or your heart? Best of luck with your decision.

labelle - sorry to hear you're having so many SEs on Tamoxifen. I hope your biopsy comes back negative and that you start to feel better soon on all levels.

I'm disappointed in your MO for "firing" you for not taking Tamoxifen. When I quit Tamoxifen my MO continued to see me every six months, and was there for me when I recurred. No tumor markers, no other bloodwork, but they asked about pain or other concerns, and from time to time we discussed restarting Tamoxifen. After two years they stopped asking, though. Now that I'm TN, obviously won't be taking any anti-hormonals after treatment, yet my MO has already indicated they will follow me for another five years.

I always think of my MO as my "cancer doctor."

Magnesium also helps a lot with constipation (and calms my heart: I developed atrial fibrillation while on my AI, not saying it's a cause).

I am still hanging on with Femara with a lot of side effects. Tai Chi class 5 times/week helps. My oncologist will switch me to Tamoxifen if I don't get on an osteoporosis drug (I am sensitive to all so far), and I would prefer to stay on Femara vs Tamoxifen.