Starting/declining hormone therapy Nov, Dec, Jan 2018
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hello all,
Wigging-I cracked up at your 5 minute post but I think I could totally make myself feel a side effect almost that fast! I swear my first night taking Tamoxifen I got a terrible headache like an hour later. Good for you for going all in - glad it’s working so far!
Wanderweg-glad you were able to transfer away from Dr Dick! Lol. I’m taking my Tamoxifen right before bed too.
Rljes-that is just so horrible that your MO (is that medical oncologist?) is so bad and there isn’t anywhere else to go. Truman is a cutie!
Dani-I struggle with anxiety so I hear you, it is really hard when it hits and you aren’t sure why.
Salamanda-I think it is really smart and not vain to see a dermatologist!
Peebles-Bailey is such a sweetheart. We love her. Does Tamoxifen make some people have a hard time sleeping? I already have issues falling asleep and it’s been even harder since I started even though I’m only doing every other day for right now.
Sorry if I missed anyone- I’mstruggling and not sure if it’s Tamoxifen, just dealing with all this, going back to work or just life! Probably all of it. I’m emotional, anxious, achy and irritable. Wah! I’m sure tomorrow will be a better day.
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Wanderweg- I am cracking up at Dr. Dickface and PA Bitchface lol! I have 2 Dr. Dickfaces. Rljes I can totally relate. Sorry your MO is an ass, mine is too. Tucker looks like such a sweet boy
I am giving my MO one more shot even though he didn't know I had a uterus and was not up to date on my latest pathology, but he is known at the hospital as "the best".I am on day 7 of 10mg Tamoxifen and I actually feel really good physically. I initially had some joint pain and a couple days of stomach cramps/nausea. I started walking more and am doing mild yoga so maybe that is helping? I do feel a bit more moody. My apartment had flooded twice this month so I had to pack up and leave twice, and then last Sunday sewage came up through the bathtub drain while I washing my dog and flooded the bathroom I really almost lost my sh*t as my bathroom was flooded with it...so gross. I do love my place by the beach regardless. Radiation started today and I am a bit worried because my flap recon didn't take so all the tissue that they used to fill in where the cancer was is dead tissue and hard. I am praying radiation doesn't make it worse or more painful.
Pebbles the Pom pups are so cute!
Dani- Congrats on tomorrow being your last day!
Salamandra- I hope the Derm can give you a solution to the skin issues, that's no fun on top of all the other stuff
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HPFULL, I'm so sorry to hear about your flooding issues. That's a lot to deal with on top of cancer treatment and recovery! Salamandra, my skin also has changed - I think it's the no estrogen thing - and my lifelong combination skin that leaned toward oily in the T zone is now normal to dry. After switching up my skin care products, things have stabilized. I hope your dermatologist can help. Dani, CONGRATS on your final rads treatment today!! I promise that your skin will improve and fatigue will go away (took about 2 weeks for me). Wised, you’re missed on this wonderful thread you started! I hope you’re well. Check in when you feel able. I marvel at how we're all walking different paths with our hormone therapy. I started anastrazole at the full dose 2 weeks before starting rads. Frankly, potential tamoxifen side effects scared the crap out of me. My DEXA scan this summer showed mild osteopenia, which I'm managing with increased calcium (diet and supplements) and increased weight bearing exercise. I've had no joint pain. Other than the above mentioned dry skin, my big side effect was horrible hot flashes. They were waking me up at night and aggravating my insomnia. My MO suggested I try a low dose of Effexor. It's an antidepressant that's also used to treat panic and anxiety issues. It helped the hot flashes in just a few days, and has also helped with some low level anxiety issues I've been dealing with for a few years. Thanks to you all for being a bright spot in my day, with your support, kindness and DOG PICTURES! May we each find that right path for ourselves. Sending you each a grateful hug. To Domino, Tucker, Jack, the Keeshonds (and any others I've missed) I send skritches and dog treats.
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Hi just posting an update re my concerns with Tamoxifen & bladder cancer. I had my cystoscopy today & yes I have 2 growths there. Same spots my previous bladder cancer . Next step is a biopsy. My original bc has a receptor that is extremely high. Same with my recent double mastectomy. I have had discussions with the cancer clinic pharmacist, my urologist, even called the drug company. My ONC is out of town. A recommended. to stay on tamoxifen
Because my breast cancer loves estrogen, im between a rock & a hard place. To stop the tamoxifen could create secondary cancers far worse than bladder cancer. So I will stay on the tamoxifen.
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One of my Dr's (I have so many) gave me Effexor last year for depression. I tried to take it twice and had migraines each time. But I have chronic migraines anyway - so maybe I should give it a try again for the hot flashes. Maybe in a couple weeks after Anastrozole settles in. (I still have a stopped up nose and sore throat since starting - and leg cramps)
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congrats on you last day Dani 😃
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HPFULL, GreenHarbor- Thank you so much!
I got the ok from my MO to start on tamoxifen after I heal from rads. I think I am going to do a slow start as some are doing. Hopefully I will be able to ease into with minimal SE’s!!
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kmart - I'm so sorry about the bladder cancer. What a difficult decision! Is an AI an option for you?
Dani - That's great that you're done with rads. Hope the tamoxifen goes easy on you.
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Thought this might be a good place to post an encouraging story. After my diagnosis, a number of women I'd known for years told me that they'd had breast cancer too, years ago, and were never troubled again. Last night I had a conversation with a 39-year survivor! She said her lymph nodes had been clear at the time and she'd just had a mastectomy, and seemed surprised that I'd been given tamoxifen or any further treatment if my nodes were clear. She commented on how much treatments had changed and improved since her experience. She didn't share any specifics of her staging at the time, and it's pointless for me to speculate, and I'm definitely not going to discontinue my tamoxifen just because she was fine without it, but the fact remains: here she is, 39 years later, and no more troubles. It can and does happen, friends!
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Thatd awesome purplecat, thanks for sharing! I love the survivor stories.
I’m getting ready for work so no time for a longer post but wanted to share I’m one week into tamoxifen and fine. The nausea of day 2 went away after I started eating with tamoxifen, no joint pain or hot flashes so far, was worried about a delayed time of month but it just came for better or worse. Have started a 1/2 hour workout / movement / yoga or free weights and/or abs of moderate exercise since I started tamoxifen, maybe that’s why I’m not feeling any joint pain. Hope it holds up!
Domino and Tucker provide some positive encouragement
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I am having a weird experience with Tamoxifen. I started it 9 months ago with NO side effects whatsoever. And now I developed night sweats and would wake up 3-4 times at night. It completely exhausted me, I stopped Tamoxifen, called my Oncologist. They told me it's ok to take a break from it and I should see a psychiatrist for management of hot flashes. I did see the psychiatrist and she said they do not manage hot flashes but she prescribed me one of the meds my oncologist mentioned - Gabapentin (Neurontin). I took it for a few days with no improvement and then the nightsweats have stopped about a week later and I stopped taking Gabapentin and the night sweats did not return. I am due to see the oncologist in 1 month and we will discuss what are we going to do.
That sounds so weird that I would develop the side effects 9 months later. I did do accupuncture for many months and have stopped about 2 months ago. Any thoughts?
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Pebbles you have an audience/cheering section for your exercise regime! Adorable. There are many great pets on this thread and I enjoy all the pictures.
HPFULL-Yuck! So sorry to hear about the flooding and what must have been a horrible cleanup.
Kmart-Thinking of you and hoping when your MO returns there will be better solutions.
GreenHarbor-It sounds like you are doing well with your AI. What good news! It gives me hope.
Wigging-so funny!! Thanks for making me laugh.
Carebearzzz, like you I am expecting to have immediate SEs, real or imagined, just because that's what I do to myself. Gotta work on that. I hope you are having a better day today.
It seems that so many on this thread and on Radiation/January 2019 are having less-than-ideal interactions with MOs. And it seems to me, given the long term relationship, that is one doc that we really need to have on our side with care and compassion. I love my BS. He is a new doc and brand new at my hospital and he went above and beyond to reassure and care for me, even calling me at home on a Sunday after I emailed his work account, thinking he would check it on Monday. I love my RO. She is funny, personable (I know alot about her family!), a little wild and very caring. She's the one who dropped everything to come to the radiation treatment room to reassure me one day when the techs called her to say I had a concern (and they probably said I was falling apart). I have met my MO and people tell me she is very good. I know she is knowledgeable and professional, but I think I would benefit from a little more warm and fuzzy too! They probably all go to the San Antonio Breast Conference so maybe we should suggest they offer a workshop on patient relationships. Maybe in order to be a MO you have to have a certain personality .Anyway, I think I will bring my MO a special treat when I meet with her next month to plan for my AI!
PurpleCat-Thanks for sharing a great story.
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Thank you lplibrarygirl & wanderweg for your well wishes. I truly them. When my oncologist is back I will ask him about A1.I don't know much about it.
Ohio: I did try anatrozle first but not with much luck. My extremities ice cold & develop depression & lethargy. I did try letostrozel with much the same reaction, but not as severe. Others have done quite well.
While reading the posts it is quite clear to me how strong you ladies are in dealing with this. You are all survivors because you question and do not give up.
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PurpleCat, thanks for sharing that story! It’s so encouraging to hear stories like that. Pebbles, that’s great you’re fitting in some exercise. I am a couch potato at heart, and have been working to increase my activity. It’s hard when the sofa is calling to me....
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I've been having all my routine check-ups this month, and one thing the BS mentioned stood out - that Tamoxifen helps build bone strength. Since I already have osteoporosis, I was pretty happy to hear that. No real SEs so far, I think my overall achiness could be weather-related, and my body doing a bad job adjusting to life without Motrin.
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Alice Gabapentin sometimes takes about 2 to 3 weeks to work fully. I am on it for nerve pain and it helped my re and more over tim
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Hi gals!
So I met with my Oncologist yesterday...and she told me about a new ‘5 mg dose’ study for tamoxifen. She’s prescribing 10mgs and wants me to half that. You all might remember I had pretty debilitating SE’s from the 20mg dose. I will give this a go and keep you all posted.
I do so enjoy seeing all the words of encouragement flowing between everyone
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sugarmaple - The study I saw just looked at women with DCIS. Do ypu know if there’s any data for women who have stage 1or 2 breast cancer?
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Hi, everyone!! This has been such a wonderful thread for those making the decision to embark on the anti-hormonal journey. I am so proud that many of you have worked with your doctors to find the appropriate starting dose. I will continue to follow and will smile when doing so. Oh, by the way, Theodore (salt/pepper) and Thaddeus (White) Miniature Schnauzers, with their vet. It was the best pic I have of them. Born in Sept of 2018, on my deceased father's birthday. My luvs.
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Hi wanderweg!
I believe you are right-the study was with DCIS. She said since my invasive was 4mm and my nodes were clear—-that I would be a good candidate to try it. I know I can’t hang with the 20 mg!
I don’t know if it’s the best move or not-but I haven’t been on anything since I quit my first 3 weeks of tamoxifen at the full dose. Curious to see how it goes!
Cuuuuute pups, Michelle in Cornland
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What cute pups Michelle!
Since starting Anastrozole last Sunday and taking it every other day ( my choice - no discussion with my MO since he doesn't believe in SE's) After a really rough 24 hours on Monday - then taking Tue & Thur - the only side effects I've had is a slight sore throat, running/stopped up nose and leg cramps. I think I'll keep this every other day for 2 weeks then then maybe 2 days skip a day - and work my self up to one a day.
Something else that concerns me : Radiation. At first Dx, the MO and RO were fighting over me - which should go first. MO won. Now that chemo has been over for almost a year - No word about Radiation. I wouldn't do it, but still you think my MO would at least bring it up. Things that make you go hummmmmmmmmmmmmmmm.0 -
Just got my first Lupron shot today to shut down my ovaries. Feels weird to make yourself go into menapouse knowingly at 43. Also got my anastrozole 1mg bottle. Will start with it tomorrow morning. So it is really happening..
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Nomaddd, that's the direction I'm headed in a month or so. It feels very weird indeed.
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Hello all-just saying hello and keeping up with the posts. I am doing better than I was the other day so that is good. Starting to take Tamoxifen every day in the mornings as I’m having a hard time sleeping and headaches at night. Feeling pretty good otherwise.
Thank you all for your truth, positive stories,encouragement of me and each other!
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Nomadd and OTMom the RO said the Tamoxifen would put me into menopause in a month. He didn’t mention the ovaries shot🤔 I wonder if that’s next. I am so sad about the menopause thing. I am 45 and knew I probably would have kids since I don’t have a partner and I am getting up there in age, but I. Just get this put in my stomach every time I think about it
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HPFULL, from what I've heard Tamoxifen has different effects on different people. Sometimes it's more menopause-like, sometimes less. Either way you still have some estrogen, which is in theory easier on your body and is why they prefer it for younger people. Either way, having this change plans for having kids really, really sucks. I'm sorry you're having to deal with that on top of the cancer diagnosis. None of this is fair.
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I cannot take Tamoxifen because of potential blood clots, so instead I am taking an AI. For AI to be of value, they need to put you into menapouse first.
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Before my BC diagnosis I had spent over a year trying to figure out some intense pain issues I was having. Diagnosis this week was endometriosis. Ovarian shutdown plus AI is the only way to treat both, so that's why I'll be on that train rather than tamoxifen. Hopefully dexa scan comes back OK for that. If not I don't know what our next move is.
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HPFull-My docs never told me that Tamoxifen will put me in menopause!! I thought I might just have symptoms like menopause not that I’d actually be put into it. All of this is so confusing. It sucks to have to put your body into menopause before you are ready. So sorry you have to deal with that too!!
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So I just took my first arimidex - one quarter of one pill, every other day to get started. I'm feeling chicken but want to get started.
As we used to say diving into the swimming pool, bombs away!
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