Thinking of quitting tamoxifen

Liloefer

I’ve been on tamoxifen for 2 years and a month. Since then, I’ve experienced horrible hot flashes, insomnia, depression (worsened), big weight gain, just to name a few. I was told 6 months after chemo that the steroid they gave me had caused cataracts. I am a police officer with many years left before i can retire and good eyesight is crucial for safety, and to not get fired, frankly. About 6 months ago, I went in for a cataract surgery consult and was given the blessing to proceed, with many options for lenses. Yesterday, I went back in to redo it, after battling emotions of needing cataract surgery at 44. Here, I learned I’ve now developed retinopathy and my options for visual acuity have greatly diminished. I have been struggling with intense and frequent hot flashes, so I’ve been wanting to stop the meds for a long time now. They’ve tried gabapentin to help but it hasn’t at all. So when I heard one more thing cancer has stolen from me, I just about screamed some curse words.

Of course, my biggest fear with stopping is recurrence. But my biggest fear with staying on it is not only diminished eyesight but loss of my career, and possibly everything I’ve worked for. Has anyone stopped and recurrence occurred? I’m going to speak with my onco but I don’t want stats. I want to hear from real people.

Rae7200

Hi Liloefer,

I tried everything to take tamoxifen when I was first diagnosed, after my lumpectomy and radiation. I couldn't sleep from the night sweats. I was already on Effexor from going through menopause again, and we even raised the dose all the way up to full depression level, but no joy. I tried black cohash, acupuncture...nothing worked. I even tried a reduced dosage of 10mg, and it still didn't help. I was getting night sweats so frequently I couldn't get into REM sleep. You have to sleep! So after 4-5 months, we took a deep breath and crossed fingers that my 12-14% chance of recurrence would be good enough. Three years and one week later, we discovered it wasn't. Apparently a tiny cancerous cell in an axillary node that hadn't been radiated had been there all along, and made itself manifest when I went in for my mammogram. So long story short, radiation again (went before tumor board, as usual course of treatment is mastectomy), 5 weeks of radiation, and tamoxifen. I am detemined to make this work. I am taking 5 mg tamoxifen to be able to keep to night sweats down, plus ginger supplements (500 mg), which also help. I tried Peridicin-C, which made it worse, and wasn't about to continue something which made it worse for 2 months before it got better. I also have turmeric supplements on hand to try if I need to. I cleared these all with my oncologist.

There's a lot of information on the Bottle of Tamoxifen thread. That's where I got the info about the different supplements, and also that magnesium oxide, which I'd been taking forever, was aggravating the constipation caused by tamoxifen, but that magnesium glycinate would not cause constipation. Sorry if that's TMI, but just in case that's a quality of life problem for you....

I'm a former police tech and spent 30 years as a Customs Inspector, Customs SeniorOperations Officer, and Customs Officer, before retiring in 2003. I just had cataract surgery in my right eye in May and my left eye in June. My heart goes out to you.

Michelle_in_cornland

I am fortifying myself to stay on Tamoxifen for at least 5 to 10 years. I understand the sleep issue. Maybe ask your physician for some amitryptline, an old tricyclic antidepressant, which will help you sleep and increase several brain neurotransmitters so you feel better. Just get a low dose, 5 or 10 mgs to start. Do whatever you need to do to sleep. I found that the radiation caused insomnia in me for several months, that was even before I started Tamoxifen. If you are not walking, get moving. If you have hobbies, use them as therapy. It does get better with time.

keepthefaith

I took Tamoxifen for 2 yrs and 7 months. Although I was post-meno, I have Osteoporosis, so an AI was not recommended. I have read studies that suggest that 2 yrs of Tamoxifen does provide a benefit. I think there was a 1-3% difference in benefit from the 5 yr regimen, for me. I am not sure if that is the case with Stage III or if it was Stage I only. My onco-type score was 21. My MO did not advise me on my decision, but when I told her, she seemed to be okay with it. Knock on wood, I am still NED, coming up on my 5 yr DX. There are a couple of websites that may help you as far as the recurrence rate. Predict and Cancermath. There may be others also. I found out I have small cataracts also, but they don't need to be addressed at this time. It is very dis-heartening. Follow your gut, talk to your medical team, get all of the information you need to make a decision and do what you think is best for you. It's all about risk vs.benefit. It's a hard decision and there is a lot to consider. Best wishes.

Georgia1

Hi Lilofer. I don't have a personal story to share but wanted to agree with KeeptheFaith that you do get a benefit after only two years on Tamoxifen. So there's certainly good reason for you to discuss going off it with your MO. Here's a summary of the study:

https://www.breastcancer.org/research-news/2-yrs-o...

Also, some women don't metabolize Tamoxifen well, or not at all, so you may want to get the genetic test for that gene marker. It's the CYP2D6 gene, and if you were tested for BRCA1 the results on CYP2D6 would already be in your file. Here's an article on it from this website, but it's a bit old and more recent research is much better and clearer. Why take Tamoxifen if it's doing nothing for you?

https://www.breastcancer.org/research-news/earlier...

And I'm pretty sure that if you have a higher ER percentage, you get more benefit from Tamoxifen than if your number is lower. So that too is something to factor into your decision. Risk of cancer recurrence is a big deal of course, but so is estrogen and progesterone loss.

Hope this helps as you weigh pros and cons.

edwards750

It’s such a crapshoot. You could be damned either way.

I did take Tamoxifen for 4 years. I started with Arimidex but I had osteopenia so my MO switched me after one year because Arimidex attacks the bones.

I suffered through night sweats, weight gain, joint pain and trouble concentrating. Fortunately my MO decided I could stop taking it after 5 years. I’m 7 years out this month. I had early stage IDC, stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments.

QOL is paramount and if the SEs are debilitating then what choice do you really have? I have a friend who quit taking every drug they prescribed because she could not handle the side effects. They were brutal. Btw she is a RN at St. Jude Hospital for children and 10 years out.

Of course it’s a risk but it’s your risk to take.

Diane

jhendricks

I've been on Tamoxifen for 5 years this month. I know my doctor is going to want me to stay on it for another 5 years. Since starting the tamoxifen, I can't remember feeling happiness. I don't know if this is just me or the medication or life in general. I have been taking Effexor. I'm not sure it helps. I guess I'm not as irritable but my appetite goes up so much on it I can't fit into any of my clothes. Plus I feel like the Tamoxifen has caused a glorious muffin top that won't go away. I have tried multiple other antidepressants and they seem to make it worse. I am thinking I would like to take a drug holiday just to see how I feel. Has anyone else been through this?

Beaverntx

jhendricks, I recently took a one month "holiday" from Tamoxifen due to intolerable SEs of fatigue, lassitude, and memory issues. I've been back on for about a month and am feeling much better so far. My theory is that when blood levels reach a certain point my SEs become intolerable; it took 18 to 19 months to happen. So, if that repeats in another year and a half or so perhaps I'll try another break, rinse and repeat. Also may consider 2 years to be enough; have not had that conversation with my doctor yet. She is very sympathetic to QoL issues, though. IMHO a drug holiday is worth a try. Before taking one I was seriously considering stopping Tamoxifen altogether but am OK with it again, at least for now.

Good luck and hugs to you. Please let me know how you are doing and feel free to PM me if you'd like.

Salamandra

Tamoxifen is NOT your only option. Given the impact on your life, I think that it is time or past time to strongly consider alternatives to tamoxifen.

The one that my doc first suggested was ovarian suppression plus aromatase inhibitor. I did not want that if it can be avoided and I pushed back and asked for toremifene, which is in the same class of drugs as tamoxifen (SERM) but known to have a slightly different side effect profile. It is not technically FDA approved for premenopausal women but I feel that the evidence for it was sound. They are doing more experiments with it in China because apparently the genetic mutation that may cause tamoxifen to be less effective is much more common there.

For me, toremifene has been so much better than tamoxifen was. If it hadn't been, I would be considering OS+AI.

But please know, it doesn't have to be tamoxifen or nothing! If you have a good doctor, they should work with you on trying other options.