Had to stop Tamoxifen

DianneS · 11-21-2009, 05:04 PM

Well, I gave it the old college try for about 2 weeks and felt progressively crummy on the Tamoxifen. Spacey, achy, headaches and very tired. My husband said I looked ill. Today I didn't take the bloody pill and feel better already.

I am weakly ER positive and really had to rethink what a benefit of 4-6% meant. Was it worth feeling crummy for a year? If the weather report says '4-6% chance of rain', does it rain? My benefit, I think, would be nothing.

I am postmeno and had my ovaries taken out before the bc dx in 2008, so not much estrogen left.

I could not take Arimidex either. So, I will eat well, exercise, do my Che Gong and pray.

Anyone else quit Tamoxifen? Why? And how are you doing?

Dianne

hutchibk · 11-21-2009, 05:46 PM

I didn't have to stop Tamox, but after a year of it my doc switched me to aromasin...

However, he has been talking about Faslodex too, as another option when it appears Tamox has stopped working. So, even though you didn't quit Tamox from it not working, I wonder if Faslodex might be an option for you in place of it? Worth the ask, I say.

Jackie07 · 11-21-2009, 06:20 PM

I'm close to completing my '5' years of Tamoxifen. Not sure what my oncologist will recommend. I went behind his back and got a hysterectomy/oophorectomy scheduled early December. The surgeon agreed that it would cut down the 40% elevated risk for my getting ovarian cancer somewhere down the road. After my surgery in early December [Note: ended up getting it Jan. 14], I should start taking aromatese inhibitor (Arimadex or...)in January. Of course, I'll have to 'remind' my medical oncologist on that.

Basically, I think having been born premature caused me to have some genetic defect and immune deficiency that made me cancer prone. I think ever since my (life-long) brain tumor had been found, I should have gotten rid of anything that is not a 'vital' organ. I'm not being 'radical', instead, I'm trying to be rational.

Those doctors can not possibly fault me for not trusting them after they have 'goofed' again and again. And I will not accept the 'title' of a 'hypochondriac'. I just have had enough and don't want to play 'hide and seek' any more.

DianneS · 11-21-2009, 10:38 PM

Hi hutchibk,

How did you initially feel on Tamoxifen? I felt just rotten and looked it, too. Would you take something so powerful if it only benefitted you a mere 4-6%? Now, if it was 20% or more, maybe. But really......what would you do?

I am beginning to wonder why I can't take Arimidex or Tamoxifen. I did the DNA test and am a normal metabolizer for Tam. I can't imagine feeling crummy for a year. But I felt nausea enough to make me head to ER while on Arimidex. And tired enough on Tam to make me quit, as well as periods when I felt really cold and weird. Hot flashes woke me up more than once. However I had an oophorectomy last year and it may be still remnants from that. I just don't know.......

Dianne

hutchibk · 11-21-2009, 10:43 PM

I felt pretty ok on it... hot flashes, leg cramps and my hands were stiff every morning when I woke up. But it was basically tolerable for me.

I have no discernible side effects from Aromasin...

Regarding nausea, did they tell you to take it with food? I believe that is the most effective way to avoid nausea when taking AIs.

DianneS · 11-21-2009, 10:46 PM

Hello, Jackie,

I had a hysterectomy in 1998 and ooporectomy last year. Everything was benign. I hope you're having a laparoscopic hystero-oophorectomy. They are much less painful than having one's abdomen ripped open like I had for the ovaries because the cyst was the size of a golfball (benign) but we did not know it at time of surgery. I think you are wise to have surgery, altho I read that Tamoxifen has only a small risk of ovarian cancer. Why are you on it so long?

Sweetie, you are certainly NOT a hypochrondriac! Who called you that? Sounds like you're having some issues with your onc? I do suggest a 2nd opinion before surgery of any kind...wish I had done that but I live in a remote are where that's not possible.

Being your own advocate is a very good idea, you know your body better than anyone. I, too, am tired of being a guinea pig and taking medicine that no one can tell me if it's even going to work for me. Meanwhile the pharmacies make out like crazy.

Best of luck and a speedy recovery if you do the surgery in Dec.

Dianne

DianneS · 11-21-2009, 10:50 PM

Yes, they told me to take first the Arimidex with food and also when I began Tam it said take with food. I always took it with breakfast. Didn't help. With the Arimidex, the waves of nausea hit me all day for weeks. It was a real drag.

Dianne

hutchibk · 11-21-2009, 10:54 PM

Here's an idea... try taking it at night before bed with a glass of milk or a piece of toast? That way you might be able to sleep through a lot of the side effects. Or maybe you already tried that? That's what a lot of us have done who are on Tykerb... take it at bedtime and sleep through the nausea (as we are not supposed to take Tykerb with food.)

DianneS · 11-21-2009, 10:54 PM

hutchibk, how are you feeling? I was reading your signature line and wondered how things went after your tx's in Oct?

Dianne

DianneS · 11-21-2009, 10:57 PM

hi again

It wasn't the nausea that got me with the Tamoxifen. It was the extreme fatigue that was making it hard for me to do anything. That was one side effect. My husband said I looked like, well, hell. It was like having the flu 24/7.

This, for a 4-6% so called 'benefit'???

Dianne

hutchibk · 11-21-2009, 11:55 PM

I am doing great. I am worn out from almost 50 days of radiation over the last 7 weeks, but I can't complain. It will go away in due time. Other than that, I am rocking right along, got great brain MRI results this week, things couldn't be better. I am lucky to have the most brilliant doctors in the world, in my opinion, of course.

Laurel · 11-22-2009, 06:21 AM

Dianne,

I took Tamoxifen for 9 months and felt lousy just like you. When I was determined to be menopausal I insisted on switching to an A.I. My onc said most women have more s.e.'s with the A.I.'s, but I could certainly go with one if I wished. I am so glad I did, because that is when I seemed to come out of my fog! Additionally, my blood pressure fell back to normal. For me, Tamoxifen was no walk in the park. The Femara is definitely an improvement.

As an aside, you can look into DIM and Calcium D-glucarate to moderate your estrogen.

Jackie07 · 11-23-2009, 07:04 AM

Diane,

They are going to try the 'vaginal' route first. If it doesn't work, then they will try the other surgical methods. Because of my past brain surgeries, I couldn't tell too much about any menopausal symptoms I may have experienced. I think I'm going to be feeling 'lousy' just as I've been feeling my whole life.

[Mind you, I 'd been' quite active and had been singing in the choir all my life till 2003...]

Note (7/14/2010):

I did end up with a laporal Abdominal Hysterectomy which worked out very well. Went home within 24 hours and took pain meds for just two days. The tiny stitches fell off pretty quickly and there're no complications.

07-14-2010, 08:21 AM

Suicidal on Tamoxifen...... my girlfriend was diagnosed with stage 2- estrogen receptor postve breast cancer last summer at the age of 44. After 2 surgeries (they didn't clear the margins the first time), she went through several months of chemo followed by several weeks of radiation, and is now being prescribed 20 mg. tamoxifen daily. The drug is sending her screaming in to menopause. She can't sleep, can't think, wants to die, has panic attacks where her whole body shakes uncontrollably, cries all the time, has no energy, body aches, and is now saying she is going to take a vacation from life and get on a plane and go somewhere by herself. After arguing with the doctors, they finally agreed to cut the tamoxifen to 10 mg. and titrate up once she is stable, but she seems to be wors on 10 mg.!!! I just read that tamoxifen withdrawal can also mimic menopause because it has an estrogen-like effect. She has been prescribed anti-depressants and absolutely refuses..... will not take them, would rather be devistatingly miserable!!! Does the tamoxifen really only lessen your chance of recurrence by 4-6%? I don't know what to do for her anymore and I'm very afraid for her.It is so scary to think of quitting a drug like that if it will keep the cancer from coming back. On the other hand, she is not living a life worth living right now. I am beginning to fear that she is too emotionally unstable and don't know how to help her. Any advice would be very much appreciated.

Rich66 · 07-14-2010, 12:05 PM

Since there was recent info that generic Tamoxifen might have more side effects, is it true that everyone in this thread is Talking about non-generic Tamoxifen?

If you wind up with no "conventional" treatment to take, consider high dose/high quality green tea supplements and Vitamin D.

Carol.hope · 07-14-2010, 12:28 PM

Dianne and others,
Yes, we are the customers, and we know our bodies. We get to choose whether or not to take a drug that has a 4-6% chance of helping us! Read Dr. Susan's Love's Breast Book. (I was just quoting her on another thread). She reminds us it's OUR choice!

And remember, too, that these benefits are statisical benefits, relating to a population, not to a person. That means, if a drug has a 6% benefit, that 94% of people taking them are NOT benefitting from them (but still paying the same $ to the drug industry and dealing with the side effects).

I take DIM with green tea and cucurmin (from a Naturopath), which also reduces the estradiol. No side effects. A urine test can tell you if it's working. If you want my ND's contact info, she may or may not help you via telephone.

Dianne, I refused Tamoxifen and AI's from the beginning. I think the oncs only let me get away with it because I had a tia (blood clot) years ago, and that's a possible side effect of Tamoxifen. You are not being crazy. You are listening to you body!

Jackie07 · 07-14-2010, 01:19 PM

Statistically, the recurrence rate for those who have taken Tamoxifen is half of those who did not take Tamoxifen. So if 15 patients out of 100 non-Tamoxifen user recur in the 5 year follow-up, there will only be 7.5 Tamoxifen user experience recurrence. That's why they claim Tamoxifen cut the recurrence rate by half.

It doesn't sound much. But when you use 100,000 patient as the sample, then we are talking about 15000 vs. 7500, a very significant drop.

Jackie07 · 09-02-2010, 07:51 PM

Retrieved this thread because of a new development today.

[Unregistered: How's your girl friend been doing? I would think her reaction was more related to the chemopause caused by chemo instead of Tamoxifen. The reactions you had described sounded more like menopausal symptoms.]

I had a good chat with my oncologist during my 3-month follow-up Monday afternoon. Showed him a couple of (English) articles written by two doctors of a college alumni association based in Southern California (one is about 'Earthing' and the other about 'Dietary fiber'). There's also a Chinese article written by myself about my cancer journey. The oncologist's name was shown in English, but he had no idea what was said about him in my article

Unexpectedly I found a letter in my mailbox today. Inside of the envelope was a prescription of Tamoxifen and a sticky note from my oncologist: "Wanted to be sure you are taking your Tamoxifen."

This is beyond 'weird'. I started taking Tamoxifen in summer 2004, almost 6 months after stopping chemotherapy. Several doctors I saw before summer had mentioned about my starting Tamoxifen. I thought they were crazy because my oncologist had told me at the very beginning that my cancer was 'not' hormone sensitive and could not use Tamoxifen. [It was written in my notebook - I did take good notes.] After I contacted my oncologist's office, I was then given the prescription and I took it until we found the recurrence in 2007.

The first thing my oncologist told me to do when he learned about my recurrence was to stop Tamoxifen. [Because of possible 'blood clot' during surgery?] After chemotherapy I bugged them about Tamoxifen again and started taking it again until I quit taking it this spring after my prophylactic hysterectomy/oophorectomy. I contacted the oncology nurse and told her it's about 5 years and I should be able to stop taking Tamoxifen and start Aromatase Inhibitor. She checked with my oncologist and told me that I could stop taking it because my recurrence was not hormone sensitive to begin with.

Now my oncologist wanted to make sure that I take my Tamoxifen?

Right away I did some search and found one possible reason:

http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
Under 2. How does Tamoxifen work:
Although tamoxifen acts against the effects of estrogen in breast tissue, it acts like estrogen in other tissue. This means that women who take tamoxifen may derive many of the beneficial effects of menopausal estrogen replacement therapy, such as a decreased risk of osteoporosis.

This is quite interesting because I always thought Tamoxifen causes 'less' osteoporosis when compared to AI. I'd never have figured that it actually decreases the risk of osteoporosis.

Another possible reason is that he realized I had not taken 5 years Tamoxifen in a row. I'd only taken it a little more than two years since my recurrence. Since I've already had hysterectomy, I don't have to be worried about the side effect of possible endometrial cancer and uterine cancer.

Guess I'll be a good patient this time - I'm just going to fill the prescription and start taking it without calling his office and asking questions... (perhaps that's why he'd mailed the letter near the end of the week.

Debra · 09-03-2010, 07:11 PM

Dianne -
Just curious as to why you were on tamoxifin if you were post-menopausal?? Perhaps I am missing something but I understand that to be the standard for pre-menopausal women.
I do agree with you about weighing the factors being low est-positive. I am in that catagory too but have had a total hyst. so am on aromasin. Often wonder if I should be??

medicare · 12-17-2010, 12:02 AM

You should call your Doctor, and ask if they could call in a prescription to a local pharmacy where you are. Just have the local pharmacy prescription phone number, PLUS have their FAX number available (in case) when you call your Doctor's office. Don't forget to ask if the pharmacy takes your insurance, first. Good Luck.