ILC with tomoxifen and Venlafaxine

Annette_U
Annette_U Member Posts: 111
edited June 2015 in ILC (Invasive Lobular Carcinoma)

Well after 16 months of hormone therapy my hot flashes were at it every hour 24/7. I gave it the college try but last night I took one 75 mg venlafaxine HCL ER. WOW! I slept with only one sweat attack and 4 warm flashes. Today, a few warm flashes.......but much cold feeling in neck and head. I called doctor and had the dose lowered to 37.5mg and will try that tonight. Going for an ultrasound on Monday to check thickness of endometrial lining and waiting for pap results to check for any estranged cells. I am two years from diagnosis and wonder who is doing the same meds and how your endometrium and flashes fairing? What evidence other than obvious cancer cells should motivate me to get an ooph or hysterectomy? My Onc said for me 10 years of tomoxifen and then 10 on letrazole or equivalent. Since AI meds are considered the best option- when should or could I switch? I just turned 52 and May still be menopausal but chemopaused at 50. I am confused about what would be the best option and not sure the docs feel hysterectomy is good unless they find a problem. They don't like the idea of prophylactic surgery and feel it is old school.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015

    Hi Annette - I take 37.5 of venlafaxine along with Tamoxifen. It controls the HF pretty well. I have been monitored for uterine thickening and polyps since I started T. I don't know if I am still premenopausal or not. Tuesday I m having a d&c and an ooph, then I can move onto an AI.

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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2015

    Thanks Lucy, so why the dnc? Is it easier to get an ooph and okay to keep your uterus even though you have sustained considerable endometrial thickening? I am so concerned I may get another cancer from tomoxifen, my lining was 8 mm just 2 months after starting tomoxifen. ON Monday I get my US and will find out how thick the lining is now, a year later. I have had discharge since starting tomoxifen and should consider purchasing stock in Kotex.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015

    I spoke to a gynonc who told me if the uterus is proven benign with a d&c there is no reason to remove. I am more concerned about incontinence than uterine cancer. Apparently it is quite uncommon, easy to dx, and generally the cure is a hyster. My family history is suspect so the ooph helps w that and gets me off Tamoxifen. Also it is an easy surgery w little to no recovery time.

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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2015

    F-Lucy, hope all goes well with the surgery. I will ask my gynecologist about the d&c and/or ooph if the results of my ultrasound are taking a left turn. Post and let us know how you are getting along and sending healing thoughts your way from Ardmore.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    Ditto Farmerlucy's effexor (venafalexine) and arimidex: I took it with tamox, and now with arimidex, and I have hot flashes, but they are pretty well controlled.

    Claire in AZ

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015
    Hey Annette - greetings from Norman! Surgery went great. Beyond thrilled to be postmeno. Just waiting on path report. Still a little sore but back to exercising today. Feel so comfortable at Mercy in OKC.

    Hey Claire - me waving!
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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2015

    Lucy, glad you are feeling good enough to exercise so soon. Well my gyno is going to do a biopsy of the lining next week since it is 10mm now and has suggested I consider a hysterectomy because my mom had bc and ovarian cancer. I asked about the ooph and she said why keep the uterus at 52. I am in no rush and will speak to my oncologist and get a second opinion . I will be going to Mercy in Ardmore for my surgery if the next opinion says I need it. This cancer CRAP never ends! I have already had 4 operations in 2 years!!!!!YUCK!!!!!

    We will have to meet one day seeing your just up the road. Glad your home and doing so well.

    Annette

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015

    Dang Annette - that's a scary pedigree. Early on I met w Dr Hollingsworth at Mercy in OKC. He is a genetic couselor and gave me excellent advice. I'd love to meet you sometime you're heading North. Take care and good luck!

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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2015

    Lucy, Well Gyn said my right ovary is slightly enlarged!!!!!! yikes!!!!! next week I get my uterus biopsied and CA-125. She said my lining is now 10mm, last year 8mm. I am freaking out- she mentioned hysterectomy……HELP!!!! another surgery…..yuck. I am very frightened this is cancer because they did not see a cyst in the US. Could the ovary be enlarged from the Tomoxifen???? has anyone else had enlarged ovaries without cysts? I am freaking out just a bit here… Thanks

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015

    I don't know anything about enlarged ovaries except that cysts come and go naturally. Good luck w the biopsy. Maybe take a Tylenol before you go. One step at a time. Once I went in and my lining was 1.5 cm thicker than thetime before.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited April 2015
    Annette, I am writing because I remember the ovary freakout. While on tamoxifen I had hormone level blood tests (recommend! I asked for this...) Turns out my ovaries were in overdrive, and my estradiol levels were through the roof (higher than a woman on fertility drugs.) I remember the panic; we are conditioned (after our BC dx) to go straight to cancer. What else could it be? Turns out, lots of things that aren't cancer. Tamoxifen sometimes tricks the body into thinking that it's running low on estrogen so it kicks up production. Not what one needs post BC, so I suppressed them medically for six months (Lupron) as I was sick of surgery. But hated that more than surgery and was 50 by then so had an ooph. Want to also say though, that even tho it's done laporoscopically and clearly was the easiest surgery, one still needs to take it easy for about a week. I had had a hysterectomy a few years earlier (unrelated to and per BC) but they left in the ovaries at the time. I do have issues now w incontinence, but I had issues before. No easy answers but writing this mostly, Annette, to help you relax. :) Be thinking about you, just wanted you to know that there are lots of not terrible reasons for ovaries to act up.
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  • Annette_U
    Annette_U Member Posts: 111
    edited April 2015

    sgreenarch,

    Thanks so much , tomorrow is my biopsy day. Your words have eased my stress over jumping to cancer conclusions. I had a hormone test last year and it showed me as menopausal. My Oncologist saw the results from the Gyn and said that did not mean much since I was on tomoxifen. She felt at 51 I was not there yet and would not move me to letrazole. If they don't find anything suspicious in my biopsy, I think I will be more comfortable with ovary removal and would prefer to keep the uterus as it may cause issues like you as so many other women are experiencing. I am not sure if my chances of cancer there will still exist after the ovaries are removed. I'll post results when I get them. Thanks again.

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  • new2bc
    new2bc Member Posts: 559
    edited May 2015

    Since Tamoxifen stimulates the ovaries, it sometimes creates cysts in the ovaries. Women with cysts have a higher estradiol level than women without cysts. This is documented in this link:

    http://www.ncbi.nlm.nih.gov/pubmed/10206289

    I want to add that the link above mentions that high estradiol mostly happens to women who are premenopausal and did NOT have chemo.

    Here is another link regarding Tamoxifen, ovarian cysts, and high estradiol. This study is not as old as the one I posted earlier.

    hyi165 607..611 - 607.full.pdf
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  • Annette_U
    Annette_U Member Posts: 111
    edited May 2015

    Lucy, the results of my biopsy were negative but the gynocologist wants me to get a hysterectomy. She said if I were her sister or family member she would recommend removal. The lining is at 10mm and discharge is constant. The main reasons she wants me to get the hysterectomy is because I had cervical cancer at 21 and dysplasia at 27, breast cancer at 50 and my Mom had DCIS (lumpectomy), ovarian cancer and bladder cancer. Dad had lung cancer (SMOKER...yuck!- killed him), 19 yr old daughter pre-cancerous polyps removed.

    She did say no mad rush and I can do it later this year since I am sick of surgeries for now. I will seek another opinion in Fort Worth or Dallas from an gynecological oncologist this June or July. My doc her would perform the DaVinci robotic surgery.

    Question: Has anyone here had Davinci for hysterectomy and how did it go? healing time? Sex life after? I am beginning to feel like a fish fillet!!!! Di ya gain weight after or felt/looked older sooner? Would you consider hysterectomy with my family and personal cancer history? I just don't want to be one of those Oops! I shoulda when it was offered.

    Another question will AI's come with the common side effects and will venlafaxine still work on the hot flashes?

    Thanks all!

    Annette

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2015

    Annette - your family/ personal history is scary. Sounds like a good plan. I don't have any experience w davinci but a gyn onc told me he'd do it if there was a presence of cancer otherwise laparoscopic was fine and saves you money. Thanks so much for updating us

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2015

    PS I just doubled my Effexor to 75 mg. the HFs post ooph have been an inferno. So far so good on Femara though.

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  • Annette_U
    Annette_U Member Posts: 111
    edited May 2015

    Lucy, good to know about the HFs . I had major hot flashes before starting 37.5 mg of Effexor. I still get them every hour but so much more tolerable. I may also need to move up to 75mg if they hit me as hard and often like before. Thanks for the response and I will let ya know when I head up to "The City" so we can meet up.

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  • Mypuppy
    Mypuppy Member Posts: 11
    edited June 2015

    Hi Annette,

    In 2013, i had a supracervical hysterectomy with the da vinci. Best thing I ever did! Im just sorry I didnt do it years before. I sufferred from fibroids and very heavy periods. First few days I would have to be homebound from how heavy they were. I would have to wear mattress size pads. Ugh! The recovery was amazing! I was up and around at the 7 day mark. They still stress the no heavy lifting for 6 weeks (i think thats the standard for most surgeries), but gee, I wish the bmx would have been as easy as the hysterectomy. My quality of life is so much better, obviously, no more periods. But other than that, no complaints on the procedure and recovery. Pain was minimal and barely took my oxys. Good luck with your decision. Of course, as with every healthcare choice, please always seek 2nd opinions. Im BIG on those.

    Xo

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