Changing to AI/OS from Tamoxifen after reviewing SOFT study?

solfeo

I'm very close to completing menopause but I recently had the genetic test that shows how efficiently you are metabolizing tamoxifen, and I fell in the group with 31-50% reduced levels of tamoxifen's active metabolites. Right now I'm trying to decide between staying on tamoxifen but increasing the dose to 40mg, or switching early to an AI and adding OS. It would be a simple choice except for the OS, considering that I have only had one period in the last 9 months and my FSH was at menopausal levels in February. It will be hard to know when to stop the OS so I will most likely end up on it longer than necessary, and with the possible added side effects of that.

I have a few questions.

For anyone who has made the switch, how long did you have to receive the OS before you were able to start taking the AI? Did you continue on the tamoxifen in the meantime?

JohnSmith

It's been a while since this thread was created and it's worth bumping for younger women (premenopausal) considering ovarian suppression or oophorectomy plus an AI (aromatase inhibitor) such as exemestane (Aromasin), anastrozole (Arimidex), letrozole (Femara), etc.

JWoo

Well folks,

I am finally moving forward with changing to an AI because tamoxifen is destroying my liver. So my choice has been made for me.

Just got done with my 2nd DIEP surgery, so once I am in a little better shape, I will be discussing several options with my MO about my reproductive organs (which are useless anyway) and which AI to start with.

I'll keep you updated.

I am glad to see that there was quite a bit of conversation on this thread, and hope it has helped someone.

Have a warm and friendly Thanksgiving!

Nanka

I have been on tamox for almost 4 years. I asked my onc about changing to AI because of PILC and according to "the board", it's too late. I'm almost at 5 years out...does this make sense to anyone?

nye1980

I am 35 years old, diagnosed in June with ER+ IDC, 4/28 lymph nodes. Mastectomy, chemotherapy, and will start radiation in a few weeks. From the start my MO said OS or ooph + AI due to my age and the SOFT study. I got my Zoladex shot at my fifth chemo and then three weeks later, at my last chemo, started on Aromasin. My Zoladex implant is every three months. The shot, as intimidating as it looked, really didn't hurt. I had quite a bit of back and hip pain when I started the Aromasin, but two weeks in and I feel okay. If I'm active nothing really hurts too much. I had more hot flashes on chemo than I do now. So I'll stay on the Aromasin unless side effects become unbearable. Then my MO said I can switch to OS + Tamoxifen. (He also figures I'll get my ovaries removed at some point.)

rozem

Nanka

that is interesting, why did your MO say no to switching at 5 years? will you be on some sort of hormone therapy for 10years?

Nanka

Rozem...he said 5 more years on Tamoxifen. I guess there's been no recurrence so if it's not broken, don't fix it? Not sure.... It's all so complicated.

rozem

it sure is

ugh!

lauren32

Hi nye1980, I have a very similar diagnosis to you. I have been on Aromasin for 18 months and had a complete hysterectomy a few months ago at age 34, after being on zoladex for a year. My oncologist has also alluded to possibly switching to Tamoxifen later on, as I also have osteoporosis in the mix. I find the hot flushes intense and am thankful when there is cooler weather, but overall I don't feel too bad on Aromasin thank goodness. I hope you find the same.

Anonymous

Hi everyone, I wish I had found this thread 9 months ago, but BCO has so much good info...anyway, I want to share my experience.

Diagnosed premenopausal at 46, and on Tamox for 3 months. At that point my MO quit and my new MO suggested Aromasin and monthly Zolodex shots, which I began in Feb 2016. In July I also began Zometa IV's, to be done every 6 mo. At first the SE's were minimal, but in July I began experiencing joint/bone pain..mostly in my feet and hands. To the point where it hurt to pull covers up in bed and it was painful to walk by mid-day many days. I saw my MO early Oct and he took me off the AI and Zolodex saying that my SE's are 1 in 10 or 1 in 20 as far as severity. He said it could take a couple of months for SE's to improve, and although the pain is better, it's not gone. In fact it seemed better, but then got worse again as weather got colder. I see my MO mid Dec and I know he's thinking of putting me back on Tamox, but now I'm considering going back on combined treatment because I'm in pain anyway..why not stick with what will give me better odds long term. Plus the SE's of Tamox are big...heart and liver stuff. Ultimately I'll go with MO's recommendation, but I'll take any input from anyone here.

I hope my mentioning my severe SE's does not scare anyone considering this treatment, as I said, my reaction is extreme I think. I do want to add that if you do experience joint/bone pain, call your MO. I don't know if permanent damage has been done for me..one of my questions for MO when I see him in two weeks. In the meantime I have my EX surgery..one thing at a time!

LovesToFly

Thanks for this thread, I read it all. I am 43 and I had surgery, chemo and radiation for stage 2 (small tumour but 1 lymph node was positive) over the last year, have been on tamoxifen since May and OS (Zoladex) since September. I was terrified of both but I am okay...some joint pain in the mornings, some dryness, some hot flashes, but nothing unmanageable.

I know my MO wants me to change to aromasin, and having read the SOFT study carefully...I agree (I am a bit older than the target age, but not much, and was still absolutely premenopausal until I went into chemopause...never got my period back before I started zoladex), but I am also scared to mess with what is working. Still deciding what I will do, but glad to learn a lot and read lots of experiences.

JWoo

Well, looks like at this time, I am post-menopausal ( I think due to being on Tamoxifen for 3 years.) I've been off since Oct 15 for my recon surgery. MO just called in my rx for Anastrozole that I will start after the new year. I am confused though, since the reason I stopped the T was due to liver issues, and the AI seems to also have that as a possible side effect. I wonder if there is anything that doesn't? I don't really want to die from liver failure any more than cancer. hmmmmm

cero

Kadyann, do you have more information about this that you have commented? "My other gripe is how does it figure for someone who is so weakly positive. It has been explained to me that tamoxifen works no matter what % of positive but AI effectiveness is directly linked to that percentage." Does this mean that if the receptors percentages are low, tamoxifen works better?

Anyone?

My precentages are 35% estrogen and 5% progesterone and I'm researching which option would be better for me.