Anti-estrogen treatment - anyone??

[Tybear]

Hi ladies...

I know some of you are currently on drugs like Arimidex, Aromasin and Femera to control your cancer. I was wondering if  you could share with me why you are on the drug you are (how did your doctor pick which one to put you on) what kind of side effects you've expierenced or are expierencing and how you are responding to treatment.

I think I'm going to try anti-estrogen next (as opposed to a trial or chemo) mostly because I'm not totally healed from surgery AND because of my trip to Disney in the new year. I certainly don't want to make myself more sick and then have to try to keep up with a 6 year old (and the rest of the family) while we're hiking all over magic kingdom! I just want to go and enjoy myself, you know? I figure if the antiestrogen doesn't work, I can always try something else after my trip.

I know that my cancer is estrogen receptive so I'm hopeful this will help at least keep things stable. For those who are new, I have low grade micropapillary serous carcinoma.

Thanks in advance!
Becky

[gah_70]

A 25 mg dose of Aromasin is a tiny little pill.  I don't know that it could (or should be) split.  As far as the bone pain goes, I imagine you have been through worse. You do have pain killers, and that always helps take the edge off, at least.  Compared to Taxol bone pain, Aromasin is not as bad.  It's a different pain, too.  Taxol got me in my joints, whereas Aromasin is more of a sore feeling throughout the bones.  But at no time was the pain ever so bad that a couple of pain pills didn't ease it. It is important to remember, though, that not everyone will get every side effect!  It might not bother you at all.  The only way you'll know is to try it.  You also can't expect real results for 60-90 days, but if it's going to hurt your bones, you'll know by the end of the month.  

I hope you get great results from it!

Gail

[Tybear]

I went to see my oncologist today and told him I wanted to try an aromatase inhibitor. He offered me Tamoxifin but I told him I wanted to try Arimidex or Aromasin - he wrote me a prescription for 25mg of aromasin per day.
I haven't gotten the prescription filled yet - reading all these scary things on-line about how awful the bone pain is, is making me have flashbacks to my Taxol days. I'm totally having second thoughts now.
Does anyone know if you can split the pill in half? I'm wondering if that would make a difference at all...
I just don't like the thought of being in pain...I think I've had my fill of pain this past year to last me a lifetime.
Any suggestions about Aromasin anyone could offer up?? He did tell me to try it for a month and if I liked it he would order me more and if I didn't like it, he'd switch me to something else...
Thanks everyone,
Becky

[JC145]

Becky .. I was on tamoxifen for 18 months.  I was put on it when my CA was up and my scans were NED.  It lowered the Ca in 6 months .. then started to rise .. but held things in check for another 12 months.  Since then (past Jan.) I have been on 4 drugs to get the beast under control.  No real side effects form tamoxifen .. hot flashes.  I split the dose and took 10 mg in the AM and 10mg in the PM .. no bone pain.

If you go on one of the others and have bone pain .. check on splitting the dose.  It may help.  Good luck.  I totally understand you wanting to go on this trip to Disney.  I chose the Doxil (over Cisplatin/Gemzar) so I could get through this holiday season.  If it doesn't work, I'll go on the tougher drugs in February .. but that's OK.

Think of you ALL the time .. keeping you in my prayers.

(( hugs ))
Judy

[nyc lady]

Becky, I knew a 9 year stage IV survivor that was on Armidex for the 9 years!!!!  Keeping everything that they find something that will slow down this disease.

Love,
Pam

[survivor_susie]

If your ovarian cancer was estrogen dependent (I honestly don't understand how it can't be, but I understand that they're not all dependent) you might decide to put up with the side effects.  As a three-time cancer survivor (breast, ovarian, uterine) I took  Aromasin for a year.  Side effects were awful but I was able to tolerate it for 12 months.  

It has been 2 years since I got off of Aromasin.  I'm still cancers-free. No more side effects.  Life is good!

Kathy

[Ramsay14]

Here is what I have heard.
The doctors I saw at MDA suggested Femara as the first thing to try for estrogen receptor positive low-grade cancer.  I asked them about Tamoxifen and they said they see much better results with the aromatase inhibitors.  
The doctor I see at Sloan Kettering has no idea that I went to MDA.  When I told her I wanted to stop chemo for awhile and try a hormonal therapy she suggested Femara as the first thing to try.  I asked her why start with Femara and not Tamoxifen.  She said it is a little safer.  
At The Mayo Clinic I asked about switching to another aromatase inhibitor should the Femara stop working and they said that Femara is one of the stronger aromatase inhibitors so if it stopped working they would try another theraputic approach because they didn't think switching to another aromatase inhibitor would help much.  I'm not 100% on the memory of this but when I asked about switching to Tamoxifen I think they said that they haven't seen one person switch from AI's to Tamoxifen with results.

What are you doing for therapy now since your most recent surgery? What were the  pathology results from that surgery?  Did the results come back with MPSC again?  The doctor I saw at The Mayo Clinic said that low-grade cancers can morph in to a high grade cancer.  Mine did.  Mine went from Borderline to low-grade. Apparently it can go from low-grade to high-grade as well.  If you are still low-grade I would give the hormonal therapy a serious consideration.

[gah_70]

As you may remember, I am currently low grade, estrogen receptor positive.  I have been on Aromasin for 17 months.  I tried Femara first, but it didn't agree with me.  At the time I was taking it, I was just getting over the severe reactions I'd had from Gemzar, so I can't really say if it was the Femara or not.  But at any rate, my doctor at MD Anderson switched me to Aromasin, and it is working for me.  The main side effect I have from it is bone pain.  I have to say that it got better over the warmer months, but now that the weather is cooling off, I can feel it a bit more again.  I take calcium supplements and have regular bone scans because estrogen blockers can cause bone loss, which is usually the cause of the bone pain.  So far, I am holding my own, though.  However, I started out with bone density readings off the chart so it might take me a little more time to show any loss. Other side effects are insomnia (if taken before bed....I take mine in the morning, now), minor hair loss, and hot flashes.

My plan with my doctor is to keep on with the Aromasin until it no longer works for me.  After that, we'll move to something else...probably Armidex.  (But that plan may now have just been shot out the window because I got an email from MD Anderson this morning informing me my doctor is leaving.  I'm crushed!!) But hopefully, Aromasin will keep working for me until something better comes along for low grade estrogen receptor positive. Right now, the only cancer I have showing up is in a lymph node in my groin.  It's has shown no growth for about a year now, so that's how they gauge that it's working.        

Here is something for you to consider. I know several ladies here have been put on Tamoxifen.  It has worked for some, and not worked for others.  It works differently than aromatase inhibitors.  It blocks the body from using estrogen, where aromatase inhibitors keep the body from producing estrogen in the first place.  I was not able to try Tamoxifen at all because it does carry a relatively high incidence of causing blood clots when compared to aromatase inhibitors.  I know your blood clot was caused by the severed artery and the repair for it, but I'm not so sure I would be willing to let someone talk me into taking Tamoxifen anyway.  It just isn't worth the potential risk for you.  But that is only my opinion.  Others may disagree, including your doctor.  But please remember to bring that up in the conversation if he mentions it.  

Good luck!  I hope you can find one that works for you!

Gail