I have questions about Tamoxifen, aka Hormonal Therapy

[gta03]

Hello all, & blessed wishes during the Holiday Season. 🎄 I must admit I haven't been on here for a while, but I hope someone can give me some answers.

I was diagnosed with Clear Cell Ovarian Cancer stage 4 in 2021. I have had 6 rounds of Chemo, & a total hysterectomy. I've been doing Avastin since January 2022. Currently my CA-125 is a 43, elevated above the 35 Cancer marker. But my oncologist is monitoring me very closely with Ct-Scans every 3 months. I have had 3 Ct-Scans thus far, & all show no signs of cancer. My regular oncologist wants me to go on Chemo, because she fills that there are some cancer cells floating around in my system. But I'd like a break from chemicals being in my body, so I went for a 2nd opinion. The 2nd opinion Oncologist told me that we don't like to treat the number, we will wait until you exceed to a 100 CA-125 marker number, before we take action with Chemo. But he also gave me Four Options.

My 2nd opinion Oncologist Four Options:

1) Do nothing, take a break...Which I am going to do for 2 months at least.

2) Do a biopsy, but currently I show no signs of recurrence.

3) Do Chemotherapy

4) Do Hormonal Therapy, aka Tamoxifen. There are also others that fall under the same category

I would really like to know what the Pros & Cons are of doing the Hormonal Therapy for a person who has had Ovarian Cancer stage four. My Oncologist said that some people stay on Hormonal Therapy for years. So, if you have any experience with Hormonal Therapy Meds please reply! Thank you kindly in advance.

[Merma]

If you have a hormone receptor positive cancer, you may consider a cdk 4/6 inhibitor. They are usually used in breast cancer, but recent studies show success in ovarian and endometrial cancers as well.

I am a case in point. I have chronically recurrent er+ pr+ her2- endometrial cancer. I have been on Ibrance and anastrozole for 6 years. There are many ovarian cancer patients on the same systemic treatment plan.

So, there is another systemic option.

[gta03 in reply to Merma]

Omg...Merma, I am uninformed about this subject! But yes, the doctor I saw for a 2nd opinion said basically the same as you did. That Hormonal Therapy works also for women with ovarian cancer. Tell me what exactly is receptor positive cancer? (I hope you can answer me by 12/12/23 I see my oncologist/gyn that day.)y

I haven't exactly reoccurred yet by my cancer marker are over the 35 cancer marker. But all 3 Ct-Scans I've had every 3 months have shown no signs of cancer. What is a 4/6 inhibitor, & what are the side effects? I know Tamoxifen has some side effects that every woman would dislike...Night sweats, hair loss, weight gain, constipation, issues with your liver, thyroid. Also, I am negative Brca 1 & 2, idk if that make any difference or not to be on this therapy.

But I "AM" really interested in the treatment that you are on, more so than the Tamoxifen, & I want to tell my doctor. And would very much like to know what other options there are. Thank you in advance for your next reply! Happy Holidays to you.🎄

[Merma in reply to gta03]

When you have surgery to remove the tumor or a biopsy, they either wash it or put it in something (Formalin). If the specimen reacts in some way, it can be read as ER positive. My latest biopsy showed ER positive and PAX8 positive. I am just learning about PAX8+.

Right now there are three CDK 4/6 inhibitors: Ibrance (chemical name: palbociclib), Kisqali (chemical name: ribociclib), and Verzenio (chemical name: abemaciclib). I believe that there are active clinical trials for the last two.

I am on Ibrance 125 mg (21 days on and 7 days off) and anastrazole (everyday). I started out at the highest dose of Ibrance. After two and a half years, when my blood counts didn't recover, the dr. switched me to next lower dose - 100 mg. Since the end of April, my blood counts were not recovering, but my dr just kept giving longer and longer times off. In Sept. the cancer recurred in the vaginal cuff, but it was caught so early that they couldn't do any genomic testing on it because it was too small and not very dense. My doctor is keeping me on the same regimen and lowering Ibrance to 75 mg. So far, it's been six years. CA125 is not a marker for me. They have only found recurrences in me through PET/CT scans.

When I started using Ibrance, I had already been treated with brachytherapy, so I didn't have cancer. We think that it recurred because I had too much time off. Tomorrow, I will see my onc. I think that the tumor didn't get very big because the Ibrance was actually doing its job when I did get to take it.

Here's some more info: ijgc.bmj.com/content/early/...

medpagetoday.com/meetingcov...

medpagetoday.com/hematology...

There are other articles specifically about ovarian cancer too.

Side effects: anastrozole - possibly reduced bone density I was on the the osteoporosis path before I started) , sore joints, dry skin

Ibrance: low blood counts, fatigue, hair thinning, dry skin & eyes - a bonus good thing though, is that my gray hairs went back to being brown again (didn't have a lot to start with) - also true with many mbc ladies.

Tamoxifen has been known to cause endometrial cancer in breast cancer patients. I don't know if that means anything if you already have ovarian cancer.

Hope this answers your questions. Good luck tomorrow!

[gta03 in reply to Merma]

Thank you, my friend! You have been a wealth of information. Idk if going the way of Hormonal Therapy will be the way for me because I'm on Eliquis, aka Blood Thinners. This is how I found out that I had cancer, it started with a Pulmonary Embolism. I had blood clots all in the right, & left lobes of my lungs. And more info on me is that when I went for my Biopsy, we never went through with it. Because I was suffering from Ascites. My doctors didn't realize that I had Clear Cell Ovarian Cancer until I had a total Hysterectomy. Which is very common with Blood Clots present. When I see my Oncologist on Tuesday, I will discuss this with her further. But that you so much, I will be looking at all the links you left for me.

[Merma in reply to gta03]

I’m on Eliquis too.

[Merma in reply to gta03]

Hey there!

How did your appointment go today?

[Baking50]

I am not stage 4 but had a very high ER and PR positive OC stage 2b. I did chemo and then immediately got put on letrozole. I personally have had a rough time with it but some have very few symptoms. It's definitely worth a try.

[Doggies221 in reply to Baking50]

Hi Baking50, hope you’re baking something delicious for the holidays:). May I ask you what histology your OC was and what are the negative side effects you experienced with letrazole. Thanks a lot!

[Baking50 in reply to Doggies221]

Hi, I am always baking lol I had endometroid ovarian cancer grade 1 stage 2b. I had endometrial cancer prior. They weren't sure if chemo really helped as mine might act more like low grade which doesn't respond usually to it. The thought was to do at least 3 chemo then switch to anti estrogen. Letrozole itself isn't necessarily the problem but the fact it takes the estrogen so low is very difficult. It definitely ages you and makes it difficult physically and mentally. I was pre menopause prior and survived surgical menopause but Letrozole has been rough.

[Doggies221 in reply to Baking50]

Thank you for sharing Baking50. Surgical menopause has been extremely difficult. Makes you dysfunctional both physically and mentally so taking HRT is very tempting except doctors know so little about hormones. I imagine letrazole takes surgical menopause one step further to even more difficult levels. I don’t know what the solution is in dealing w the no hormones phenomenon. Taking the ovaries out has caused my thyroid to also malfunction so I feel in complete hormonal disbalance. Not easy to live like that and im kind of shocked there’s no medical help for it. I’m considering a functional medicine physician which is not usually covered by insurance 🤷‍♀️.

[Baking50 in reply to Doggies221]

I hear you, yes I feel I am basically a disaster at managing stress from panic attacks to intrusive thoughts. Everything aches, I am a mess but my cancer is so hormone driven ( started from endometriosis) I don't have an option. I have hyperparathyroidism which isn't helping and will have surgery soon. It's amazing what we women have to go through and drs seem rather oblivious to realizing the extent we suffer hormone wise. I had rough periods my entire life, then cancer. I will say the one positive is no more nightmare periods!

[Doggies221 in reply to Baking50]

Endometriosis here too, unbeknownst to me, although obgyn knew of potential endometriotic cysts but did not ask me to follow them or mentioned potential cancer, until one day the enlarged cyst was endometriosis associated cancer. What a freaking nightmare that I’m still struggling to process. Who does this happen to and why did the obgyn say nothing about this possibility.., it feels like I’m living in a really bad horror movie, but it’s reality:(.

[Baking50 in reply to Doggies221]

I also had no idea until it was found in surgery, I have been in pain my whole life no one mentioned it as a possibility. Same with my parathyroid, it's been 7 yrs of high calcium and me asking drs to check my pth, finally it was confirmed over the summer and it's not even mild. We have to captain our own ship otherwise we just get labeled hysterical females...frustrating.

[Doggies221 in reply to Baking50]

It is very disappointing. I’m so sorry for all women that we have to be our own doctors, in addition to being everything else to everybody else 🙁.

[gta03 in reply to Baking50]

Thank you Baking50, 🍰 I so much appreciate your reply! I am going to see my oncologist/gyn next week & tell her some of this input from your comment. Thank you, & Happy Holidays!🎄

[Doggies221 in reply to gta03]

Gta03, let us know if you feel like it, how your doctor’s visit went. Do they even use estrogen blocking drugs for clear cell? You asked above what hormone positive cancer is. They test tumor cells for hormone receptors positivity, ie, whether tumor cells respond to estrogen or progesterone stimulation when exposed to those hormones. In theory, if they do, they are ER and/or PR positive. Immunohistochemistry tests are used to see the receptor positivity. Thanks for sharing and the very best of luck in your journey 🍀.

[gta03 in reply to Doggies221]

I know Doggies221...I don't know if I'm a good candidate for the estrogen blockers. First because with Clear Cell Ovarian Cancer the presence of blood clots is always an issue. And a side effect of estrogen blockers is Blood Clots. And I still currently have some blood clots in my lungs, & one in my right leg. So, I don't know. But I will let all of you know what my doctor said.

[gta03 in reply to Doggies221]

Doggies221 I saw my oncologist last Tuesday, & just as I thought, she did not think I was a good candidate for hormonal blockers. Due to the fact that when you have Clear Cell Ovarian Cancer, blood clots are always present with that type of cancer. And one of the Hormonal Blockers side effects is "blood clots." So right now, I'm just opting to be closely monitored. But I will eventually have to do a round of Chemo again. Thanks for all your input & have an awesome Holiday!

[Doggies221 in reply to gta03]

Thank you for the update, gta. Thinking about you and your situation… I’ve read daily aspirin is good for clear cell and also is helpful for blood clots. You may want to consider taking a baby aspirin a day. I’m also not sure how helpful hormone blockers are for clear cell bc supposedly it is not a hormone driven cancer so what’s the point of blocking estrogen if it’s not influenced by estrogen 🤷‍♀️. I’m kind of confused on that point. I am not even sure that the tests science uses for cancer cell hormone receptors are accurate. Wishing you outstanding luck and warm and nice holidays.🍀 Please feel free to connect privately through messaging if you want to chat more. I’m always open to talking about “this stuff”.