Checkup and Tamoxifen

[Carlye]

Hi Ladies and Gentlemen,
I would love your opinion on a few things. I had posted before about having some aches and pains and some edema in my legs. Recently I have had Had some slight lightheadedness. I did bloodwork yesterday which was totally normal and also showed I was not in menapause. Next step to my gyno to talk about shutting down my ovaries or a hysterectomy. He took me off tamoxifen because he feels some of my tiredness and edema is caused by that. I know its not common to be er/pr pos and her+++ but has anyone else had bad reactions to tamoxifen? He said he will be putting me on either arimidex or femera! Then we talked about my dizziness and he didnt feel like it was due to any metastic disease but he said to make sure we are going to do a brain mri. That made me happy because of all the recent conversations we have had in here. My mother died of metastic brain cancer so this absolutely scares me so badly. I just wanted your opinions on the tamoxifen because it makes me nervous to not be taking anything while getting the ovaries shutdown, and about the reactions to it. Do you also think he is on the right track with the brain mri? Thankssssss so much for all your help!!

[Phil s-r]

Carlye:

You said that it was uncommon to be er/pr + and her2+++ ?? My wife Lori is er/pr+ and her2++ almost 3+'s. She is presently on Tamoxofin. Her 2nd treatment drug. She has nausea and alittle chemo brain. You wrote --" He took me off tamoxifen because he feels some of my tiredness and edema is caused by that." My wife has always been tired I think that is due to the illness. When you have bone mets everything is harder and you tire more easily.
But everyone reacts so differenlty to the illness and drugs.
Hope things go better for you !!!
phil & lori s-r

[Carlye]

Hi Phil,
Thanks for the response. I was dxed in sept 2001 and did 6 rounds of AC, rads then 6 Rounds of Taxol. Ever since my surgery I have been NED. The symptoms I have been having with the edema have just gradually gotten worse and worse as time has gone by, that is the reason why he might think it might be the tamoxifen. The dizziness and tiredness has just come about this week, so we are not taking chances. Hopefully its just the tamoxifen or changes in my system as its trying to go through menapause.
Carlye

[Lisa]

I, too, was ER pos and Her2+++. However, on my recurrence after 3 1/2 clean years, my pathology showed ER neg and Her2+++! I had taken Tamoxifen for about a year , then Arimdex for 6 months when I quit because of all the side effects. As it turns out, they wouldn't have made a difference for me, since my mets are ER neg. Apparently, some aggressive tumors can "shed" their ER piece.
It's a tough call on what to do, since there are so many gray areas. But, regardless of what you decide on the tamoxifen, etc., I believe the brain MRI is critical. I'm now a true believer in brain tests for us all.

Love and healing light,

Lisa

[Paul]

Caryle,

I agree with Lisa ... definite include an MRI of the brain as one of your diagnostic steps.

Your doctor's recommendation to use Armidex or Femara is sound. Of course, you'll need to be menopausal prior to the use of an aromatase inhibitor such as Armidex, Femara or Aromasin. The AIs have outperformed tamoxifen is three recent major studies.

The issue as whether to continue Tamoxifen is really up to you and your doctor, based upon your current symptoms. There should not be too much of a time gap whether you choose to create menopause through surgery or drugs like Zoladex or Lupron.

[Jackie]

I was dx in Oct 2000,ER+, her2+++, and began tamoxifen following surgery, a/c, taxol, and radiation. I was 54 at the time, menopausal, but developed a blood clot within 60 days. Was on femara for about 15 mos and developed bone mets. Tried faslodex and aromasin, but neither were effective. According to what I've been reading, the feeling is that femara (and perhaps some other AIs) are more effective than tamoxifen. My disease has proven to be very difficult to treat, so I am by no means average. Many women are having great success with the AIs, so I would be glad to make the switch if I was you! (I also requested a head MRI for my next round of scans in May as a result of what has been posted here recently.) I wish you lots of luck!!

[Carlye]

Hi Lisa,
What was your original dx?? Where are your mets? Thanks so much for always taking the time to reply to everything! I so appreciate it!
Carlye