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TAMOXIFEN

dd_big red
Posts: 4
Joined: Jul 2010

Hi.....I am new to this. I was diagnosed with stage 3C OC in Jan. I had surgery a total hysterectomy, cancer debulking and omentum removed. There was a tumor that was wrapped around my bile and the surgeon was unable to remove because of the damage that could occur if my liver was nicked,so it was left. I had 5 rounds of taxol/carbo and the 6th just taxol because my platelets would not come up above 100. The OBGYN oncologist wanted to put me on a year of taxol, but I got a PET scan and there is NO evidence of any tumors ! I started out with a CA125 of 9000 now is 32. The OBGYN dr now wants to but me on a year of Tamoxifen. I have researched and can find nothing that says I should, the only thing I found is for reoccurrence of ovarian cancer or if you do not respond to chemo. Has any one done the Tamoxifen ? I also had another question how long does remission usually last ? will I likely get chemo again. I had breast cancer twice in 1991 and again in 1996.....I thought I was finished with cancer ! I was tested for the BRAC and was positive for BRAC1 and so far 3 nieces and my sister has tested positive . My experience is with breast cancer and if you make it thru 5 years you are considered cured from what I have read ovarian cancer sounds like it keeps coming back......and you keep getting chemo. Thank you all for all that I have read , you all are a inspiration and a great help ! I wish I would have joined sooner and read your posts. Thanks, Dian

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Big Red....you are correct about OC. It does tend to come back. A full 85% of us will achieve full remission following first line chemo, only to suffer a recurrence within 2 years, and usually much sooner. Those are the stats, anyway.

My CA125 was 4000 pre-surgery and last month tested at 4.8 and my CT scan was clear, so I am considered in remission. Nevertheless, I chose to do the year of Txol maintenance.

Tamoxifen, as I'm sure you know, is an anti-estrogen drug. OC is hormone driven in many instances, thus the suggestion. This is especially true in women who are BRCA positive.

It is a rare woman who is diagnosed at stage IIIc and does not have a recurrence within 5 years. After 10 years without a recurrence, you are considered "cured" with OC. I have met exactly ONE woman who fits that criteria. She still gets her CA125 checked every 6 months.

By the way...welcome to the club no one wants to join.

Carlene

dd_big red
Posts: 4
Joined: Jul 2010

Hi Carlene
Thanks for your response, I am glad there are women that are going thur the same thing as me to talk to. I have tried to find a OC support group there are none in my area. I go to see the Dr this Friday not sure what I am going to do, I do know I am going to get a CA125 every month. I have made a appt with a general oncologist also may see what he says 1st. I am sopose to start back to work Aug 16 have been off since Jan 7th. I got my pick pulled and last chemo 2 weeks ago I am starting to feel normal....I have eyelashes and some fuss on my head.....

Thanks again, Dian

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I had ovarian cancer in 1991. Was cancer free for 17 years and then in 2008 it appeared again. I had the surgery. Found a walnut size spot and they couldn't get it all because it was wraped around 3 main arteries. I did the Taxol and then had a PET/Scan. Cancer free again. In 2010 it appeared again. Doctor put me on tamoxifen. The spots that had appeared doubled in size. I was told to stop the tamoxifen and I had to start the doxil right away. I am now on my 7th treatment and will be getting my 8th treatment in August. I will then get another CT/Scan. The doctor had told me that the tamoxifen keeps the cancer in check for some and he had patients that it worked on. It didn't work for me.

Linda

dd_big red
Posts: 4
Joined: Jul 2010

Linda-
Thanks for your response. I have found very little info on Tamoxifen doing much good for ovarian cancer, still not sure what I will do. It is great you were cancer free for 17 years that is awesome ! What stage were you ? How long did you take tamoxifen before you had another scan ?

Dian

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Dian,
When I had it the first time I was diagnosed with Stage 1C. I thought after all those years I was cancer free. And I see so many on this board that the stage is greater than mine. But there are so many survivors. This discussion board is great. I took the tamoxifen about 2 months and the CA125 started rising. Not a lot but I knew something was probably wrong. The doctor ordered a CT/Scan and sure enough the spots I had doubled in size. I don't know if the tamoxifen had anything to do with it... but he sure took me off of it in a hurry. Years ago when I had the cancer and the big surgery to remove everything, the oconologist I had at the time said he didn't want to put me on any type of estrogen. He said it would be like throwing gasoline onto the fire. So I didn't take anything for all those years.
Talk it over with your doctor and ask him why he thinks this would be the way to go. The more we ask, the more we find out.

Keep me posted.
Linda

groundeffect
Posts: 651
Joined: Mar 2003

Hi Dian,

When I was at my chemo doctor's office for my visit on my fifth anniversary of diagnosis, I found out my CA 125 had started rising. To make a long story short, after the level kept rising for 3 months, that doctor said I should see an gyn/oncologist again (we don't have any in our city) to get their opinion. The gyn/onc I saw suggested I take taxmoxifen, which I did. My CA 125 continued to climb for a couple of months, and I continued taking it for more than a year, when the tumor that was causing it to rise was found.

I would not be afraid to take tamoxifen again-the only side effect I had from it was hot flashes (which I didn't have after my hystercomy/oopherectomy), and it did apparently keep the cancer "at bay" for a while.

Good luck!

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mother's CA125 never went really low after first-line chemo, so she was started on tamoxifen at her 3-month post-chemo doctor visit. It seemed to work really well for her for about 6 months. A few hot flashes and much-wanted hair, but no other side effects. The dosage was increased when her CA125 started creeping up and a lesion was detected in her abdomen. After 9 months on tamoxifen, her CA125 started rising quickly and a PET found growths on her chest wall, so now she's on maintenance carbo. So far, so good.

I guess the bottom line is that if it works for you, you get a great break from chemo. Good luck!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Tamoxifen and all of the hormone-inhibitor drugs work best for those that at Estrogen Receptor and/or Progesterone Receptor positive. If you are ER or PR negative, the chances of it working (or your insurance covering it!) are much much less. Most ovarian cancers are hormone receptor positive, so it just may work for you. It's si much EASIER than taking chemo, and so an attractive option for sure! My gyne-onc has brought up tamoxifen for me several times but we haven't tried it yet, and I recently had a needle biopsy of a suspected (later confirmed) malignant lymph node that provided a large enough cell clump to do an assay. It turns out my rare recurrent endometrial cancer is ER and PR negative, so tamoxifen is now off the table for me. But I did do a lot of research on it. I will look for the actual study, but one clinical trial showed a 30%+ total response rate for ER+ / PR+ women with very little side effects. Tamoxifen has to be CLOSELY monitored when you first start taking it, as some women's bodies react by fighting against it and it can then do more harm than good, but those cases are rare. Still, they watch for a sudden spike in CA125; or do a CT/PET follow-up shortly after starting Tamoxifen, just in case you fall in that small percentage. One last note: prolonged use of tamoxifen as a maintenance drug for breast cancer has been linked to getting uterine cancer as a new primary cancer years later, although this is a controversial finding.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Dian,
I had found this on the internet after I had been taken off tamoxifen. You might want to check it out.

http://www.all-natural.com/tamox.html

Linda

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