I haven't been taking my Tamox-a confession

tangandchris

I have to be honest now with someone, I haven't been that honest about this with dh or MO. I haven't been taking my tamoxifen hardly at all. I tried the first 2 months and I felt like crap, so MO said to take a break and see if that help. Well, it did...but I started again and felt bad again.

From that point on I've really not been taking it and then I'll get scared and start again, after a week or so I'll start having the se's again. I get fatigue, ear ringing, confusion, queasy stomach...I just feel off. I felt like crap for so long during tx and surgeries and all that crap that I guess I'm telling myself that I need a break from it.

I haven't been able to get MO to give me a straight answer on how much tamox really helps me, what my chances of reoccurrence are and when I've talked to her about my issues with the medication I always get the impression that she doesn't know what to say. She's told me that she has NEVER had a patient not last 5 years on it and that she can't force me to take it. I love her, but I know she thinks I'm a PITA.

Anyway, this is a confession of sorts and I don't know what else. I just hate all of this still, some days it feels easier and other days it isn't.

thanks for letting me talk.

ml143333

I am not telling you what to do at all, but I encourage you to talk with your DH and your MO.  If you aren't getting a warm and fuzzy feeling from your MO - find another that you can build a good relationship with.

I would talk with your MO about how tamoxifen cuts your chances of recurrence then with your DH to decide where to go from here.  Talk with your MO about any other medications that you can take in place of tamoxifen.

I am taking an AI with some side effects, but they aren't bad in comparison to others.  If they were, I would talk with MO about other options.

Please do all you can to take care of yourself.

april485

First, I can sooo relate to having awful side effects. I am on a break from exemestane (Aromasin) with my MO's blessing right now due to awful fatigue, brain fog and joint/bone pain. BUT, I had DCIS and feel the risk outweighs the rewards right now. You state that you are Stage 3, and my understanding is that you are at a very high risk for recurrence.

Now for some tough love....I know you should do what makes you happy and go with your gut, but if it were me, I would take the tamoxifen or ask to be put on one of the AI's. They have a drug that can put you in menopause (Lupron I think) so you can take the other drugs. Don't risk your life...just my opinion. Besides, it you do end up with mets, the first drug they usually put you on is an AI or tamoxifen! You will have to take it anyway and also be at risk of death.

Please rethink this decision and talk to your MO. Maybe they can try something else? But, don't do nothing. Not with Stage 3.

Hugs and best whatever  you decide to do.

vlnrph

I was in a similar situation earlier this year, with the aromatase inhibitors. Letrozole had caused stiffness and trigger finger so I went off of it while my hypercalcemia was investigated. Felt so good to have estrogen back in my system! Reluctantly began exemestane and am waiting to see what happens.

As a retired pharmacist, I'm not surprised that your oncologist thinks everyone stays on hormonal/endocrine therapy exactly the way prescribed. Reality is another story. You are certainly not alone. My chain drugstore actually phoned a refill reminder to me when their computer metrics showed I was overdue. They're not really interested in my health, it's just about the bottom line profit for them.

There still may be options for you - trying an alternative dosage schedule like 10mg twice daily. Some people swear that the generic manufacturer makes a difference in terms of side effects. Tamoxifen has done a great job for many women but quality of life is also important. Perhaps you're close enough to menopause for AI consideration. Have you seen the outcome calculators that give survival statistics based on various factors?

farmerlucy

Hi tang - Did I ever mention I gave it up after ten days for a whole year?? Yep - a whole year. It took me that long to sort out my thoughts, my side effects, what I was really feeling. I certainly don't recommend it but you can only do what you can do. For me the thought of not taking it was this big monkey on my back. Honestly it was easier for me to just take the damn thing than to worry about not doing everything I could to prevent recurrence. We're with you and for you whatever you decide. Take care my friend.

Nancy2581

Hi tangandchris - you mentioned you tried tamoxifen for 2 months and then quit. I think I read somewhere that side effects peak around four months (I've only had hot flashes but geez they were awful at the 4 month mark). I know it's a long time to stick it out, but you are stage III and that would really make me nervous. I'm stage IIB and scared mine will come back. Definitely talk to your MO. As mentioned you could do ovarian suppression and an AI instead. Hugs

Nancy

rgiuff

Ovarian suppression and an AI might be worse because of the medical menopause. If you can get away with just taking the tamoxifen, you may be better off. I did not take my tamoxifen the full 5 years, I lasted three and took a couple of breaks during that time, Each time that I restarted, I felt like my body had to get used to it all over again. Often, with a new medication, the body needs several weeks of an adjustment period. after which some of the side effects settle down. Being stage 3, I would highly encourage you to try to stick it out longer. Your risk of recurrence is much higher than mine was. I was a stage 1, so I felt comfortable not sticking to the full 5 years, as I also exercise regularly and try to eat plenty of healthy antioxidant foods. If I were a stage 3, I would have felt more concerned about a possible recurrence and would have forced myself to stick with the tamoxifen longer.

Pokemom1959

I don't know if this is accurate or not, but this calculator lets you input your information and then you select your therapy (i.e., Tamoxifen) and it will tell you how much your life expectancy will increase with the selected therapy. It can't be completely accurate, but it gives you a general idea.


http://www.lifemath.net/cancer/breastcancer/therapy/


If anyone knows that this is not even vaguely accurate, let me know and I'll delete this post.

suems

It may work for most people, but it said my results could not be calculated because I had too many nodes involved, and it also said the results were invalid for metastatic cancer. Otherwise, it all looked fairly optimistic, just not realistic with my cancer.

Meow13

i have to confess I stopped the exemestane .

treelilac

I remember reading about the pharmacokinetics. I copied the following from drugs.com:

"Tamoxifen C _max is 40 ng/mL (range, 35 to 45 ng/mL), T _maxis approximately 5 h after dosing, and steady state is achieved in approximately 4 wk. N-desmethyl tamoxifen C _max is 15 ng/mL (range, 10 to 20 ng/mL). Steady state is achieved in approximately 8 wk."

N-desmethyl tamoxifen is supposedly the major metabolite that also works like tamoxifen.

So I suspect one has to take the drug at least for 4-8 weeks to fully know how it "feels like."

Grandi

Vinrph, can you talk about your hypercalcemia. Did they discover it was caused by your femara? I know Arimidex can cause it but not sure about femara. Thanks

vlnrph

The endocrinologist I was referred to actually called it pseudohypercalcemia correlated with a top of the normal range albumin (I tend to be "well nourished"!)

Not to hijack this thread but there are a few other posts you can find here about high blood Ca++ levels associated with parathyroid disease. My nephrologist thinks I may have a subclinical case. Work up also included CT scans to rule out metastasis. It was a spike to 11 which caused the concern when I usually ran just over 10. Most middle aged women would be around 9.

It makes sense that the AI class could mobilize calcium out of the skeleton as they lead to osteopenia however I could not find much published to confirm this. My bones are currently strong enough to absorb another few per cent decline in density over the next six months so we will see...