Starting/declining hormone therapy Nov, Dec, Jan 2018
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rljes I finished rads 10/4 and didn't start Anastrozole until 11/11. I took it every other day until 12/1. My MO was on board with all of it. I really think that for something we're going to be taking for 5-10 years a few extra weeks before we start and taking a little more gentle on ramp really don't matter. I picked the 11/11 date because it was after an out-of-town trip and 12/1 was a Saturday and seemed easy to remember. Give yourself some time, pick a day (2/1?), consider starting every other day, and I bet it will not be a big deal.
P.S. I’m a little envious of the one Herceptin left! I still have six and I swear each one is getting harder. I try not to wish my life away but I am so ready for May 17th to get here. . .
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I chose the date 1/11 to start the Aromasin, and I take it at a half dose each day. I have BMX on Monday, so I think I will be taking it at half doses at least till the end of January to be able to recover a bit. My MO is OK with me taking half the pill for some time, although she said to do it just for a week or two. well, I will see her with my next Herceptin around the end of January, so...
The hot flushes I've been having since I started Zoladex have definitelly increased now. Well, but I see it as a proof that the AI is working.
Ingerp thanks for explaining about the importance of anti-hormone therapy. I think you are right. That's also why I am taking the half doses, I want to give my body some time to adjust and I want to stay on the treatment.
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So thoughtful of sweet Tucker!
I've gone on such a fertility journey. I'm pretty much terminally single, and froze my eggs a few years ago so that I could have them in case I ever financially got to a point where I could have a child on my own. Now, I'm at that point (it would be HARD but doable) but the desire for children went way down for a while, and it would mean coming off the tamoxifen for a while and raising my risk way up. Just lately I've started to have baby-wanting twinges again. It is so goddamn confusing.
(Also no guarantee that my frozen eggs would do me any good, since it's much less reliable than frozen embryos).
Also ETA - Maya!!!
I never had a tortie cat before my current one. But I am sold, such a fan now.
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Hi Ingerp - thanks for the suggestion about taking the pill every other day at first. I'll run it past my MO, but I'll do what I want to do. I think its a great idea. The year of Herceptin went fast, even with skipping a few sessions while in hospital and heart eco dictating making it stretch out a bit longer. I think I will ring that Durn Bell again!
Looks like there are several of us all starting our anti-hormone pills - Best wishes for minimal SE's. My Pharm Oncologist gave me Rx for Oxybutynin to help with hot flashes that I've had since I quit taking Estrace when I was diagnosed. BUt when looking it up - its for bladder control, and I'm seeing an urologist - so I will wait and discuss with her first. Still staring at my bottle of Anastrozole. Maya cute kittie - love the texture of your couch. AND still waiting on snow fall. Just rain so far here in IN. I might be repeating myself - I blame it on chemo brain. (Even though I stopped almost a year ago)
Rj
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Good luck on Monday, JaBoo! I’ll be thinking of you. Check in when you feel able and let us know how it went.
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Hello all, thanks for the well wishes as I went back to work. It was just fine - two days and now it's the weekend. If only every week was like that! My skin issues seem to have gotten better or at least I am more distracted now with workthoughts so I don't feel it as much, thank goodness. It's been 7 days since my last rad session so I feel really positive about that! Took Tamoxifen for the first time last night. Am going to do it every other night for a week or two. I had a bad headache last night but can't imagine it would have been from the Tamoxifen 2 hours after taking! I can have a really good imagination!
Best wishes to you all, love all the pics, especially the one of hoping it's not what we'll feel like on Tamoxifen! Made me LOL and share with my hubby. I have two kids in college but do have my “little one" at home with me. Bailey says hello!
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This is by far my favorite thread. Lots of gems to take from the conversations.
I've been on lupron for 8 days days & have had SE of insomnia the past 3 nights. I wanna sleep so bad. Fortunately I did manage to get about 3 hours in but I'm physically exhausted. Starting anastrozole today so fingers crossed things don't get much worse.
Up until recently, I felt a huge reluctance & even resentment towards treatment. Really it's about my feelings towards cancer in general. Somehow I've found my peace... this is the hand I was dealt. This is my life. The life I love. A loving husband. 4 AMAZING kids.. from 1yo to 21yo. A career where my personal & professional passions are realized. Good friends. & enough wonder to sustain another lifetime. I'm far from done, so I'll fight with everything I gotta-- including taking this little white pill.
Continued healing to everyone💕
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Oya80 - good luck on starting anastrozole today.
I'm waiting till Monday, maybe tomorrow. (Don't know why) I just don't want to take it. I know I have to. I see the reasoning behind it. I know I can stop if SE's get too bad. I know I can try something different. I know stopping and restarting sometimes helps. I Know these things because of all before me took the time to post. THANK YOU EVERYONE!
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carebearzzzzz- I love Bailey!!!! Such a sweet looking doggy.
Rljes- Monday sounds like a good day to start😊
Oya80- I love your perspective and gratitude. I think this cancer is showing me that I do have many things to be grateful for, and at the same tone there are things I need to change. I reLly want to be passionate about my career and I am not. Life is too short to not do something that my heart is in. I am hoping that through this process I will be brought to something I love.
I am having very bad knee joint pain and fatigue. It’s only day 5 and I got a bit scared. I went and joined a gym today to get me to do some weights. I walk a lot, but could use more muscle,
I am very grateful for all of you on this thread sharing your experience, strength, and hope💕
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I've been doing a half dose every other day this past week, gradually working up to the full dosage. Perimenopause has been biting me in the behind for months, maybe years, so it's impossible for me to say whether it's causing side effects. I realized, though, that there is another time in many women's lives when we tolerate some really unpleasant symptoms and side effects for a greater cause: pregnancy. So many women experience miserable pregnancies and difficult births, yet choose to do it all over again within the next few years, because it's what's needed to bring a new life into the world. In this case, I am risking some miserable symptoms in the hopes of extending my own life. If I think of whatever misery lies ahead as a sign that I'm gestating my own future, maybe it won't be so bad.
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Purplecat, I had hot flashes prior to cancer from perimenopause/menopause (can't say for sure where I was in that process since I don' have a uterus) but they were never terrible. I have them now and again on tamoxifen, but they may just be a continuation. And they pale in comparison to pregnancy and childbirth! I've been on the full 20 mg daily dose since I started 7 weeks ago without significant problems.
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Hi everyone. I'm so glad this thread is here because I'm so confused about hormone therapies! I was diagnosed in October at age 53 (you can see my stats below) and started tamoxifen on 12/12. I started tamoxifen because I wasn't quite post menopausal, but I should be almost there. I am really not experiencing any side effects (other than it is REALLY hard to lose weight) on the tamoxifen, but I know at some point I am going to have to swich to an AI. When I research online, it always says that AI's have less side effects than tamoxifen, but that is not what I'm hearing from other people who actually take the drugs. I know my oncologist is going to want to switch me to an AI because they are supposed to be more effective, but I'm happy with how I'm feeling on tamoxifen and don't want to change that. Does anyone have any thoughts on this? Is anyone planning to switch from tamoxifen to an AI and if so, which one?
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Agnes, I'm also assuming my MO will want me to switch to an AI at some point. But the bone loss aspect of it really scares me (in addition to the joint aches people report). I'm 56 and post-menopausal, presumably, and yet I asked if we could do tamoxifen instead of an AI because I already have osteopenia.
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@rljes-- Thanks... so far so good! 🙂
@hpfull-- It's taken the past 3 months of taming the beast to get me to this point. Like you, the cancer is showing me so much -- about myself & the folks around me. I say there's no time like the present in making a change towards happiness & fulfillment! Make small steps, maybe volunteer or tap into your creative side. We might as well soak in all the positivity we can while we're on this bumpy ride. Wishing you a 2019 full of possibilities ❤
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I'm ten years out from surgical menopause. The Dexa scan showed osteoporosis, and I did not want to deal with Prolia, at least not now. So my MO put me on Tamoxifen, and says we'll have other discussions later. So far, no hot flashes. My joints are already killing me and I had to stop Motrin, so I'm not sure where to lay that pain blame. I'm also having tight, painful muscles. MO says it's not Tamoxifen (🙄), so maybe it's the statin I had to start last month. Damn, even with two cancers in my body less than a year ago, I felt just fine then. Now the cancers are gone but I feel much worse. I'm HOPING some of the aches and pains are weather-related and will ease up after winter.
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Two years of Tamoxifen down, three to go. If you can take half dose during the first month of Tamoxifen and ease into it, your body will adjust more smoothly. Always ask your doctor if that is right for you. Also, Pebbles, I did have some initial nausea, and now hunger pains after I take it. I always have to eat something afterward and then sleep it off.
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First day of tamoxifen here. I took it 5 minutes ago and I have no side effects.
Hahahahaha! Thought that would make someone laugh this morning!
I’m trying to have a super positive attitude despite being terrified of the stuff so hoping that positivity will take me a long way.
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Wigging- That really made me laugh!!!! I hope you have hours upon hours on no side effects!
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Wigging-LOL!0
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wigging - there's the spirit! :-)
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I took my first pill - anastrozole last night. woke up in the middle of the night with a stuffed up nose and sore throat. That hasn't happened in years, since I had my last cold. I'm fine now. Just weird. I think I will take it every other day for the first week. Since my MO is an -*ss, I won't ask. Ease into it. Maybe 2 weeks every other day. Whats a few weeks out of 5-10 years?
Wigging - hope no SE's/ Oya80 - I took Lupron shots back - about 25 years ago, I had cysts that kept growing on my ovaries, they wanted to try Lupron before resorting to a Hysterectomy. (I wanted the Hysterectomy) The Lupron shots made me go into menopause immediately. I would be drenched in sweat from head to toe. (Cysts still grew) Total Hysterectomy followed. I was a happy camper especially with Estrace controlling the hot flashes for 30 years. Ooops. Who would of thought. Any SE's with the anastrozole?
Alice, hope you can manage your pain.
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Thanks for the belly laugh wigging. I needed that!
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Michelle_in_Cornland - hurrah! Congrats on 2 years down!
I'm day 5 into tamoxifen (at half dose, 10mg, my oncologist supports it) and so far so good. No more nausea that I only got on day 2 so I guess I just have to eat dinner with tamoxifen. Oddly I've been more regular about exercise than prior to starting, I think that idea of moving to avoid blood clots is encouraging me to work out so that's a good thing. No joint pain so far but I do lots of stretches all the time. And I'm less of a night owl, also a good thing so I sleep a little earlier, and so far sleeping through the night just fine.
Wigging2000 - positivity totally helps! What an excellent 5 minutes and here's to many more. ;-P
AliceBastab - hoping the aches and pains ease up for you too. I've heard yoga helps? I'm doing more of that now, just to avoid the joint pain from starting.
Oya80 - love your attitude re: no time like the present to make small steps towards happiness and fulfillment. I agree that this was one crazy eye opener but if it can be something to help me get to a better state of health than I was before this, that's the goal (I've lost 30 lbs since the diagnosis so that's a start... don't now if the bc is gone or will ever come back, but trying not to sweat it and just enjoy today and my journey of getting as healthy as I can get but also without depriving myself, just find balance in eating more 'good for me' things).
wanderweg - we have a family friend in her 60's and she's post-menopausal and doing tamoxifen instead of an AI. She said the AI was horrible for her on SEs s they switched her to tamoxifen and she's been doing great on tamoxifen ever since (she also takes a baby aspirin daily with her tamoxifen). But if it's an option for her, I think it's an option for you.
Agnes - same story but opposite direction for you, this is someone who switched from an AI to tamoxifen because the side effects were much harder to bear on the AI. That said everyone's personal case is different. An AI stops your ovaries from producing estrogen I believe, while tamoxifen you still have estrogen in your system, but it keeps the estrogen from binding to breast cancer cells - it binds instead, and acts like estrogen but without the breast-cancer promoting part. That's at least how my oncologist explained it to me and consistent with what I read on the internet.
rljes - a lot of us are doing that, starting half dose, maybe every day or every other day, and all our oncs were on board with it. So go to it and love your plan to not tell your mean MO LOL. Just fill him/her in later as an FYI. Agree, it's a month out of 60+ months, better to ease into it so you can tolerate it vs. rush in.
carebearzzz - Bailey is SO CUTE!!! I can't get enough of that expression. Seriously, I keep looking at that pic, cutest ever and I think gives my pups a run for the cuteness crown.
OK I know I missed people here (this is one active thread!) so I'm just going to post a pic of cute pups and call it a night. My fellow tamoxifen-starting-now group - Purplecat, HPFULL, Salamandra (?), carebearzzz, wanderweg, wigging2002 - best of luck to continued little to no SEs to us! And to the AI or no hormone therapy ladies - best of luck to you!
And Dani - did you just finish rads? Are we due a congrats to you?
Wised - where are you? Can I lure you out with this cuteness? :-P From left to right, Kit Kat, Tucker and Domino all giving a 'Wised, where are you?' look...
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HA, wigging! awesome!
I think my face is getting around to responding to the tamoxifen now. I'm getting blackheads that I haven't seen in years (since I started using a BHA exfoliant) and dry/scaly patches and I wonder if it's from the hormonal changes. I know it's kind of vain but I made a dermatologist appointment to see if there's anything she can recommend. This is all starting to feel like a perverse kind of puberty, including all the unsettling changes in hormones and breasts.
I tell you Pebbles, it's some kind of miracle that I haven't gotten a Pom yet. That look from Domino! And always glad to see Tucker and sweet Kit Kat, I love that you keep including her.
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Pebbles- I am done with rads tomorrow the 23rd!!! I just put in a call to my MO to ask exactly when to start my tamoxifen. I am planning on a slow start and will ask if that is ok too. I woke up with a lot of anxiety today, not sure why it is hitting me today.
Salamndra- Let us know what the Dermatologist says. I have been looking into what to use on my skin but I get so overwhelmed and then confused. I read one thing is helpful/safe, then somewhere else will say the opposite. Then I get concerned if the ingredients are safe. And I say go for it on the Pom
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Pebbles - I used to have a Keeshound - I would describe to those who were not familiar with the breed as a 65lb Pom.
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OMG the Keeshound (aka 65lb poms) are the cutest! Lots of furry goodness there, I have to look up this breed!
Dani - almost congrats and cheers to the slow start with the rest of us! I understand the anxiety - I'm more nervous about SEs on tamoxifen than on rads, but so far the first 5 days have been relatively fine (and there are people like Wanderweg and Michelle who are months and years into it and also fine) so that helps reassure me, hopefully can reassure you!
Salamandra - POM PUPPIES, see pic below, just saying... :-P - And hopefully the skin stuff for you, like puberty, will be a temporary thing as your body gets used to the tamoxifen. Maybe it's just the adjustment of a different hormone?
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I envy all that have good MO's. Mine is an *ss. He doesn't believe in Side Effects. So when someone on here says " ask your MO" I have to laugh about my situation. I am depending on You All!
I postponed my Chemo for months because of my MO kept telling me I wouldn't have any side effects. I was terrified (small town no other MO's to change to) When I asked him why I wouldn't have any SE's he actually answered " Because I'm that good"
Finally spoke to the Pharmacy MO and she explained to me I should have minimal SE's on chemo because of the pre-treatments. (steroids, anti-nausea meds ect)
So here I am starting Anastrozole. Spoke to Pharm MO and she said I would be an emotional basket case for first 30 days. (no mention of any other SE's) Yesterday I felt a sense of doom, like when I had Sepsis. Woke up with my nose stopped up and sore throat (that's unusual) SInce I am taking it everyother day - today I am fine, except woke up with calf cramps -which went away after stretching. I'll be taking pill #2 tonight. Plan to do this for a few weeks.
Here is Truman : he's a 12 year old Jack mix I got from the animal shelter 2 years ago. He's such a good boy.
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glad I could provide some laughs to you ladies, I could not resist posting about my 5 minutes without SE’s!
rljes, it makes me angry that your MO has that attitude about SE’s. I have run into a couple docs like that. It’s ridiculous really. Your doc just sounds arrogant. I hate that and I’m so sorry you’re having to deal with him. My MO didn’t overemphasize SEs but he did run through the major ones with tamoxifen. I hope the sense of doom feeling goes away or doesn’t come back To me, mental SEs are the scariest and also the ones that doctors tend to dismiss.
PebblesV glad things are going well so far. I also have some anxiety about Tamoxifen but am trying my best to keep it at bay.
Dani congrats on being almost done with rads!
Salamandra sorry to hear about skin issues. I already have terrible skin so I’m hoping Tamoxifen doesn’t make it worse! Nothing wrong with going to a dermatologist...that’s what they are there for!
I went all in with the full 20mg dose the past 2 days and have been ok, except some nausea and a little bit of dizziness. Nothing I can’t handle...hoping so hard that I won’t get much more than this. Gotta fight the stupid cancer!!!! I’ve been waiting for the hot flashes but I continue to be freezing cold like I usually am...
Keep on fighting the fight ladies!
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Aww, dog cuteness overload!!
rjles - My first MO was horribly condescending. And cruel - he told me I couldn't have a port for my chemo because he felt it wasn't necessary. Even though I explained my needle phobia. His PA was equally unkind. Fortunately I was able to transfer to another one. My husband and I call the first MO and his PA "Dr. Dick" and "PA Bitchface."
I decided to push my tamoxifen back to 9 pm (instead of 7) because I take it with melatonin and baby aspirin and I thought it made more sense to have it closer to bedtime. 7 weeks and a bit in, still no real side effects.
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