Need your opinion re: Lupron
Would appreciate if I could get your opinion. Can't decide what I should or want to do.
My original DX
IDC, Stage IIb, Grade 1, ER/PR +, HER2 -
Treatments
12 weeks of weekly Taxol followed by 4 x EC (Epirubicin & Cyclophosphamide) before surgery, lumpectomy, another 12 weeks of weekly Taxol followed by 30 x rads plus 5 boosts.
Every 4 weeks of Lupron shot and taking Tamoxifen (Nolvadex) as well.
So here is the story.
I met with my oncologist for the Lupron shot tonight and was asked what I would want to do with it. The standard is 36 shots and tonight was the 35th. He said I could either "graduate" or continue with it. I had never thought about getting it more than the standard number of times until I was asked but now I don't know what I should do. He said that most of his patients get some nasty side effects so they would just quit and he would also suggest them to not do it anymore and just keep taking Tamoxifen alone (the standard here is 5 years). But I have never got any major side effects so he said I could keep doing if I wanted.
My oncologist has always wanted me to be as aggressive as I could based on the fact that I got cancer at reasonably younger age (39) and that one of my lymph nodes was positive (though it disappeared completely by the time I was done with the first chemo before surgery).
And getting the shot every 4 weeks means I could meet with my oncologist every 4 weeks, which means I could be closely watched and my concerns would be always heard.
The con is that it should take another 7-10 years until menopause and the shot is not cheap. About $167 per one shot. Plus I will have to an hour and a half drive for the next 7-10 years to get the shot every 4 weeks. Though my oncologist said I could quit anytime I wanted if it got too much.
Based on what I have done so far and my original diagnosis and what I will have to endure, what would you do if you were me? Would you continue with the shot? Any thoughts would be appreciated. Getting an oophorectomy is out of option as it is not considered standard or common where I live. I will have to make up my mind till the next time I meet with my oncologist, which is 13rd January 2009.
Thanks in advance, Happy Holidays!
xo
Fumi
Comments
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That's a big decision, Fumi. How strongly estrogen positive was your cancer?
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Z,
It is a big decision, I guess, but I think Tamoxifen without the shots would be my choice, based on the cost/benefits.
But I know you love your onc and he has taken such good care of you, that it's hard to imagine not seeing him every month.
Maybe you could stop taking the shots but have an appointment every 3 months to check and see how you are doing?
Good luck making this tough decision, Z.
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As with all major decisions in my life, I always need to listen to my gut, so I'm advising you to do the same, Fumi. If you feel at all shaky or think you'll freak out a lot once/if you start getting your periods again, I'd say continue with the Lupron until you feel differently. Unfortunately, so much of this really is a crap shoot....
~Marin
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Huh. If you're on Lupron why not take an AI? That's what many do here in the US. I'm with Marin - do what you feel comfortable with. I'm stage IIb also, but BRCA2+ and couldn't tolerate Tamox so I went off it and am on Evista despite being pre-meno (I'm 48 1/2). If you can tolerate the Lupron then why not continue? Or, despite it not being common, why not get the ooph? Can't it be ordered anyway? Good luck with your decision!
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I think tamoxifen without the shots is reasonable.
Lupron and it's estrogen-stopping is not good for your bones. You don't want to be an old lady in a wheelchair.
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Continuing with the shots seems like quite a burden time-wise and financially. The plus for you is meeting with your onc monthly. It is hard to give up these people who've been there thru difficult times. I like Donna's idea of seeing about less frequent but still routine check-ins with your onc.
It's great you haven't displayed side effects to the Lupron treatment, but remember not all side effects show up until years later. I've not had anything like your decisions to make for my treatment, but I'd favor the tamoxifen unless the onc has a real good reason why continuing Lupron would be to your advantage. Would that be off-label?
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Thank you everyone for your opinions/suggestions. Unfortunately AI's have only been approved for women who are in their menopause here in my country. And you can't get an ooph unless you are willing to pay for it out of your pocket. Any sort of surgery for prevention purpose only would least likely to be covered by insurance here. Plus the majorty of doctors here think that you should not get any surgery unless your life will be put in danger or you will be disabled otherwise.
I am leaning to getting the shot for a little longer than originally planned. Mainly because since I haven't had my period since I started chemo in July of 2005, I don't think I would be happy if it's back. It had always been nasty and made me pretty sick. But I don't know much about the pros and cons about doing this for such a long time so will ask my oncologist about it before I make up my mind.
Thanks again for the input. I appreciate it!
xo
Fumi
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