Starting/declining hormone therapy Nov, Dec, Jan 2018
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Salamandra, I came up with my own introductory plan, based upon my background. I started with 10mgs for 3 weeks, and then went to 20mgs. I get the 10mgs, and take them in a close interval to receive the full benefit. It is easier on my stomach and overall well being // hot flashes, etc. seem to be less. I am on my introductory dose bandwagon, because of the success that I had myself. My doctor agreed to my plan and I have had 2+ successful years on Tamoxifen. My plan is to start a movement of empowerment for patients, that have to take these meds, to encourage them to work hand and hand with their MO to achieve a therapeutic dose.
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Dani- sending you a big hug! I can totally relate to your post. I am hoping that your fatigue passes and you feel better. I can too relate to everyone thinking I should be fine now that I am done with treatment. Even during treatment people say "you look so good." I don't know why it bothers me....I guess because I don't FEEL good. Tomorrow is my last day of radiation yay! I have been on 10mg of Tamoxifen since Jan. 15th. I initially thought it was the radiation that had me so fatigued, but now I think it might have been the Tamoxifen. I literally could not get up off the couch. I felt like I had heavy weights attached to me dragging me down. Now I have way more energy than I did 3 weeks ago and I am further into radiation which makes me think it must be the Tamoxifen, which is good since it means that the fatigue se passes. I will start the 20mg this Saturday, and I too have anxiety about it.
Pebbles- Thanks for posting all the adorable pooch pics
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HPFULL, congrats on finishing radiation treatments!!
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HPFULL--congrats on ringing that bell!!
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Dani - I hear ya girl, I get down too! There's no need to apologize, this is a great place to vent!
Salamandra - I hope you get your issues under control. My MIL was having serious GI issues. Lost a bunch of weight and we were getting really worried about her. (of course we can't help but think the worst these days) Turns out she had gallstones. I don't even know what the treatment is for that but it was a relief to hear.
HPFULL - congrats on finishing rads. I was soooo glad to be done with rads. OTOH it felt really weird to not be going to the cancer center all the time anymore. I still go every three weeks for herceptin, but that is ending soon (next week!) and I will only be going in every 3 months to get my zoladex shot.
On the SE front: Is constipation a thing on AIs? I've been stopped up lately but I don't know if its the AIs or not. It's not a huge deal but I'd rather not have to take stool softeners every day for the next five years. As for the insomnia, it's been cured by sheer exhaustion. I had a busy weekend last weekend, with the opera on Friday and a music festival on Sat/Sun. Then Monday morning I flew to TX f or follow up with my RO, and I flew from there to Grand Cayman on Wednesday. Did two dives yesterday and was totally passed out by 8pm last night, which is amazing since GC is two hours ahead of Phoenix and I should have been wide awake.
Reading all these posts about how successful people were with introductory doses makes me wish I had tried that, but what's done is done and all things considered I'm doing pretty well over here. But I will keep that bit of advice in mind should I run across any unfortunate newbies here or IRL.
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Dani- I completely get it. I was already trying to juggle some chronic fatigue and random other health issues and sometimes I get so mad that I have one more thing to manage. The 5-10 years of this part really sucks. I feel like with something where you can see the end, like radiation, it's possible to get through the parts that suck because it's only a certain number of weeks. But 5-10 years is a long time to put up with side effects and not feeling like yourself and I worry about how it'll change me, etc.
Salamandra- it's an intramuscular shot at the MO's office. Right now it's once a month, but eventually it'll be every 3. Every 6 months I'll have a zometa infusion along with it. So far I feel super tired. Maybe some weird cramping. That's about it. I'm sure it'll ramp up over time, especially once I start taking the AI. For the moment I'm still trying to get my stomach to accept the calcium I'm supposed to be taking and would like to add iron in since I'm deficient, so I'm not rushing to adding the AI.
HPFULL- Congrats on finishing rads!
Sorry to everyone I missed. Checking in while also trying to get my son out the door to school and me out the door to work. Happy Friday!
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HPFULL- Congratulations on finishing rads!
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hapa--re: the constipation all I can say is not for me, although I tend to go the other direction (honestly have never been constipated in my life). I'm sure others will chime in but I don't remember seeing anyone with that as an SE.
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thanks for the congrats you guys! Soooo happy to be done with RADS. I got teary eyes when I was leaving. Another milestone in this journey it feels like. Tomorrow I start the 20mg. Praying I don’t have crazy se with the step up to the higher dose
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Good luck HPFULL and CONGRATS on one more milestone done!!
Domino and Tucker send celebratory pup energy.
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thanks pebbles 💕 cutests pups ever
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Thank you all for the encouraging words and for understanding and listening to me, I hope you all are having a good Sunday. I skipped the gym today, but went on a frigid walk with my fur baby. He was super excited but I froze my bootie off LOL. I found someone to cover one of my shifts, and since I work 3 12 hour shifts a week it is going to give me a good stretch off. Just felt like I needed a break and I hope to rest up, sleep allowing
Just wanted to pop in and say you guys are the best!0 -
My oncologists starts her patients every other day for 6 weeks.Ive been taking it for 3 months now without SEs
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I finally med with a new MO on Friday. The first one I met with in January was talking about chemo and removing my ovaries even before we had my Oncotype results back. The one I met with on Friday was great. We chatted about my concerns because when my mom took Tamoxifen 23 years ago she put on weight and got cataracts. She is not like some MOs that just brush SEs under the rug and she is open to my doing a slow start. We talked about me starting on 10mg for a few weeks and then moving to 20mg, she said everyone is different. For my first prescription she is going to write it for 10mg twice a day so I have 10mg tablets to work with. That way when I move to 20mg I could have some flexibility and could do 10mg in the morning and 10mg in the afternoon. She said top SEs she sees is hot flashes (which unfortunately there isn't much that can be done) and having a short fuse. She told me to think about things this weekend and give her a call this week. It sounded like she wouldn't want me to start until about a month after radiation which is this week and I think I'm feeling ready to take the next step in this journey.
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Mymomsgirl that’s so good to hear. The plan you have to wait a month after radiation and start at 10mg is what a lot of us did and we seem to be faring pretty well. So glad you found a better MO.
Salamandra yes let’s diet together! I’m so in.
Dani glad you found someone to cover a shift and hopefully you can get some balance back.
Domino and Tucker are cheering all of us on as we all get through hormone therapy (or saying no to it)
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Hi all!
Mymomsgirl, yay for the new MO! I think having doctors we feel good about makes a huge difference.
Dani - ha, that's very sweet about your frozen walk. Yesterday I saw a small dog in the sweetest doggie coat I have every seen, it was like an iridescent rainbow ski parka with a little pocket on the back.
Pebbles - excellent! I'm on a slow start already. I made a big thing of cold brew coffee, which is supposed to be less acidic than regular brew. And I'm half living off of bananas! Do you want to make a new thread or plan over messaging?
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Salamandra--just re: the cold brew, my FIL told me a couple of years ago that, while he hadn't been able to drink coffee for quite a while due to stomach issues, his doctor talked to him about cold-brewed. True to form he made some, and tested it with a pH strip, and it was in fact completely non-acidic. I hadn't had coffee since my first pregnancy but started drinking cold-brewed and have been doing it ever since. I just rough-grind some beans, put them in a two-cup measure, and let it sit overnight. Then I strain it into a smoothie holder, store it in the fridge, and start the batch for tomorrow. Easy-peasy. (I've read you should cut the final product with water--it ends up being stronger coffee than regular.)
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Ooh, Ingerp - thanks for the tip on coffee! I've been giving that up lately too in hopes of making my stomach feel better, but it's the first day of Daylight Saving Time and I'm reeeeeeaallly missing it. I'll definitely try it!
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Whoops--sorry--I'm sure you figured out to add some water to the beans!!
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Love the coffee tip Ingerp
I need to try this.Dani- The freezing walk sounds good, but cold. I am glad you took a day off to rest. Those are long days.
So I finished RADs Friday and went to 20mg tamoxifen Saturday, but was so nauseous, tired, and I am about to start my period and don't want the 20 to throw it off so I am waiting until I start and then trying again. So now I am back to the 10 for now
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Ladies, just wanted to let you know that I am following the conversation, but have been preoccupied by the weather in Illinois. It has been a rough winter and people around me have suffered alot with SAD. I have been using my BC.org time to do some ad hoc counseling late at night, for my relatives waiting for their SSRI's to kick in. Like, Dani in Indiana, we have had 5 months of snow in my area, and alot of strong straight line winds. People are ready to get out of their houses and enjoy some nice weather. Today was really pretty, but I know we have some big winds coming this week. This is the first year, where we have had so many strong winds back to back. So proud of everyone having conversations with their MO's and getting support starting with lower dose meds. I started Tamoxifen several months after rads....I had a surgery two months after rads and had to wait. I think our bodies need to recover after each therapy, before moving on to the next therapy. I know that I am a big chicken, so I have to take new things slowly, as to not get overwhelmed. Some bc patients don't have that luxury because of their stage or more aggressive therapies. But, for early stage bc, it is nice to take things a bit slower and have ownership over our health.
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Ingerp - thanks for the cold brew instructions. I had always assumed it was more complicated than that!
Pebbles - Love the pup pics. But I have to talk to you about your house. It's always just so....so...clean! How?
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Apparently there are cold-brewed coffee makers (I think just a pitcher with something you insert that contains the coffee grounds)--I almost picked one up on freecycle, but my current method works well. For a long time I was using a small funnel with paper towel in it to strain it and then it hit me one day I could just use the permanent filter from our coffee machine.
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I am following this post. My oncologist has recommended hormone therapy as well. I am still undergoing chemo but I have heard nothing but horror stories about hormone therapies SE. I want to ask really relevant questions when we discuss dosage etc. Thanks for bringing up this post.
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Hey Notodayjunior,
Hope things are going smoothly with your treatment. People share difficulties with their hormone therapy but it's important to know that a lot of us are doing fine on them.
For example after a couple of rough weeks at the beginning, I am doing well on them with the only lingering side effect being fatigue (an old friend at 67). Starting at a small dose has helped a lot of us.
If your medical team thinks you need this to live, please be willing to give it a try. Chemo is the hardest, hormone therapy is easier than what you've already done.
Good luck and keep us posted!
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Nottodayjunior, the women on this site have had a variety of experiences with hormone treatment. While many have had severe side effects, many have not. I think it's impossible to predict what will happen for you. I started anastrazole 5 weeks after surgery and 2 weeks before radiation. My side effects have really been from the decreased estrogen: drier skin, some thinning hair in the front and hot flashes. The thinning hair is emotionally difficult, but my husband and sister both swear it's not really noticeable. I switched skin care products and my skin has adjusted. My hot flashes were horrible, to the point of waking me up and triggering my insomnia. I started on a low dose of Effexor, which has helped a lot. There is a large group on this thread that have started hormone treatment gradually. I'm not one of them; I didn't realize I had a choice. Many of the gradual starters have felt that it makes a difference. I encourage you to be honest with your onc about your fears. Ask him/her what they recommend and why. The doctors can give us their best opinions based on training and experience, but in the end, you have to do what feels right for you. Good luck!
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Thanks Ingerp! I just put a bunch of my ground coffee in a pitcher with a lot of water and stuck it in the fridge. Then I used the pour over melita that I would use for brewing hot coffee to filter it out. Today was my second morning and it was fine! I do kind of miss hot coffee but it seems silly to buy a whole microwave just for heating a cup of coffee, so I'll see.
nottodayjunior - do you know what kind of anti-hormonal your docs are recommending? I'm on tamoxifen. I've had a fair amount of annoying side effects, and I am still dealing with some (about 4 months in). I will say for me they have all been on the aggravating level rather than on the alarming/dangerous level. I do feel very grateful I have something to do that can stop the cancer from spreading and growing in my body, and I am going to some lengths to manage my side effects because I really want to be able to keep taking it.
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Pebbles, I thought the same thing as hapa. No water bottles, newspapers, mail, empty glasses, not even dog hair! And Domino always looks so happy and looks like he enjoys having his picture taken! Nice pics.
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Britspeech- That is great to hear that you are not having SE's. It is also nice to hear of an MO starting their patients off easy.
Mymomsgirl- Your new MO sounds very understanding. That is awesome she is on board with the slow start. Having her take the time to really hear your concerns was probably comforting! I hope you ease into hormone therapy with no SE's !!
HPFULL- Yuck on the first day of 20 mg being crappy 😤. I wonder if your MO would be ok with you waiting until you felt more recovered from rads? I second what Michelle said, that our bodies need to heal from one therapy before we start another. I Hope your next transition to 20 is a little more smooth.
Pebbles- I am with the others:) Your house does always look so tidy! And stylish I must add. I don't know if I mentioned it but I am so happy for you that your MO was so supportive!
Also, a hello to everyone. I am always reading the posts, just not always having the time to respond. Sending good thoughts to all of you!
Edited to add- I was weighed at a doctors appointment today.... I have lost 5 pounds!!!! (Just wanted to share that:
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Salamandra--:-( on the cold coffee. I microwave mine every time--I like hot drinks (besides my new coffee I drink lots of tea through the day).
Notoday--I'm going to repeat what my BS told me at a follow-up appt last year. He said the anti-hormonals have the "biggest bang for the buck" in terms of preventing recurrence. He said if he had a family remember who was refusing it, he'd crush it up and sneak it into her oatmeal. A poster on another thread said her MO told her it's more important than chemo. And you understand that you hear from women who are having problems, but tend not to hear from the many who are doing fine on them, right? A lot of us did start on a lower dose (I did full dose every other day for about three weeks). I cleared it with my MO, but some just did it on their own. It's much more important that you get on it and stay on it than when you start or if you take some time to build up to the full dose.
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