Faslodex Girls Thread
Comments
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Carol,
The numbers are CEA. I know they are large. My only explanation is I have many lesions.
Hugs to you Carol!!
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I have to publicly thank my RO office. I called this morning to make my appointment with him to discuss my rads for T3. The appointment lady was very nice, but said he was having to cover for another doctor and could not see me until September 16. I gave her my background info. She said if there was a cancellation they would call me. About 10 minutes later another person from his office called and said they would work me in first thing next Wednesday. So grateful!
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Carol and Kaption, just sending warm loving hugs to you both. Carol, I'm so sorry you are scared, I've been there and it's not fun. Hope your roar comes back soon. Keeping both of you in my prayers.
Faith (in the future)
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Thank you, Faith. Hugging Carol too!
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Faith- thanks- ROAR !!! I woke up and shared this on another thread so I will share it here as well. If we can make anything contagious let it be this!! Happy Labor Day to everyone... A must click on!!
https://www.youtube.com/watch?v=CevxZvSJLk8&list=RDCevxZvSJLk8
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Kap- I too have lots of bone lesions.. According to my bone scan and cat scan report the Radiologist must think I am in a wheel chair rather than walking 2 miles a day.. doing 20 minute miles.. As much as I love our health care doctors I get annoyed at reading the reports. Is that "head in sand" theory?
Hugs, Carol
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I have a word I came upon a year or so ago that I describes my goal mood or outlook on life. It's: ATARAXIA which is a Greek word meaning robust tranquility. It's a term that makes sense to me. A way to approach challenges.
Hope everyone has a great weekend and no one is meeting Hermine the Hurricane.
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Carol, Did I miss your official welcome to the fanny pack? Welcome! It's been a great tx for me and others, fervently hoping it will be for you too. 2 miles a day at 40 minutes is great! I used to be able to do that when I was perfectly healthy. Now down to 1 mile in 1/2 hour, so kudos to you! I feel confident your ROAR will be back soon! Sending hugs.
Kaption, I will never be able to remember that word, but I love the thought, robust tranquility, yes! Yay for appointment ladies who listen and work with us. Good luck with rads. Is T3 giving you a lot of pain?
Hope everyone has a good Labor Day weekend.
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Yes, jobur the area between my shoulder blades has been hurting and I'm now taking a pain pill every day. I was actually glad the PET showed the cause of the pain.
Have a nice holiday.
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Kaption, I also love that word! I have never been comfortable with the "fight" imagery (roar is okay) used by so many women dealing with mbc because that has always seemed -- at least to me -- like fighting our own bodies. Yet words like peace and tranquility (extremely important components for me, as I'm convinced severe stress triggered my recurrence) have always felt like they were missing something. Thank you so much for sharing ATARAXIA! Now if I can just remember it, lol!
Carol, I feel much like you do -- that things look much worse on paper than I feel. Not sure how I can have suspected vertebrae fractures and not be in a lot more pain that I thankfully am. I just got back what should be an extremely uplifting message from my onc -- that a thrombus (blood clot) called out on my most recent scan is more like a bit of artery thickening that has been there since my re-dx in 2014. But did they have to add "not unusual for her age?" Ouch!
And Kaption, my CA27-29 did come back a bit higher again -- but thankfully only 17 pts -- not the 92 pt jump it took last month. So, until my onc tells me otherwise, I'm not going to not stress about it.
Hope everyone has a fun Labor Day weekend -- maybe even forget about mbc at least for a little while. Deanna
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Deanna- that is exactly why I love that word too. You summarized it perfectly!
I have the word in my phone's list maker! So, it's always there.
And I agree, when I get the results that are " for her age" references I cringe. When I as on herceptin/ perjetta I had to get the EKGs and the results were always qualified as " normal for her age."
Happy Labor Day.
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I have a question- I'm not one to complain but I have been having waves of nausea and noticeable body aches in area of mets. I had loading dose of faslodex on Wednesday and the nausea since then comes and goes. Did anyone experience this?
Thanks, Carol
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Deanna and Kaption, When my DH was in the emergency room last year, my husband jokingly said something about being old. The ER doctor looked at him, laughed, and said, "Believe me, you are far from old. I am an internist, and internists believe that old age begins at 85." I have felt much more youthful since then. Next time you hear the terms "not unusual for her age" or "normal for age", just assume that whatever they are talking about refers to something that is expected for someone as young and vibrant as you are.
Lynn
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Yes Carol, I have had nausea that comes and goes with Faslodex. I have not had the body aches though. My hot flashes, which I've had for years ( really warm flashes) have been more intense. I'm hoping this means Faslodex is working.
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Kap- thanks! I almost felt like I had a flu coming on but the aches are better. Not much of an appetite. I don't care what SE I have just work faslodex just work. I want to dance with Ned!!
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I believe you will, Carol! Hope you have some fun this weekend.
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Carol, I had a bit of nausea for several days after my first loading dose, and just for one or two days after the second. It wasn't severe or constant, and I found that it was worse when my stomach was empty. If I ate a little, I felt better. Loss of appetite is also a known side effect of Faslodex. Unfortunately, I haven't experienced that one. I am a stress eater andhave been feeling lots of stress lately, so a little loss of appetite could be beneficial for me.
Lynne
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Carol, I also had some nausea the first few months I was on Faslodex, but b'cuz I started Fas & Ibrance at the same time, I attributed it to Ibrance -- maybe b'cuz on paper, that was the one that sounded more intense. But yesterday, two days after my Fas shots and while I'm off Ibrance, I had to take some antibiotics prior to a dental cleaning and exam (b'cuz of the rod in my leg), and I had a few minutes of wondering whether or not they'd stay down. I was extremely nauseous.
If it's any comfort to you -- and if you haven't already done it -- I just took a quick look at the manufacturer's listed SEs, and 9.7% of patients reported nausea -- but, more importantly, more than 99% stay on the med, which means the SEs in total aren't all that bad.
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Lynne, Honestly, I think I have gone a little coo coo. DH had a coffee and the smell made me sick. Like back in the days of being pregnant! I just keep repeating this too shall pass.
Hugs Carol
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Carol, that had been my experience with first loading dose. It should get better for after a few more doses and your nausea should get better in a few days. Try some Zofran and see if that helps.
Deanna, we must be on the same track. I had dental work today and had to take pre med antibiotics because of the rods and screws in my back and was nauseated enough I took some Zofran just before my appt. So glad I did. My dentist just had 'that look' when I told him how long I've been on Zometa. I have 2 possible root canals which are behaving at the moment. Keeping fingers crossed.
Good weekend to everyone.....
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I also hate the term "normal for her age" I had a brain MRI when I was first dx'd and was probably more worried about them finding Alzheimer's since my Momdied from it. The report came back with "normal changes in the brain for her age", meaning no cancer and no ALZ. either. Good news, bad news!
Lynn, love hearing the internist say "old age begins at 85". At least I have some years to go yet!
Have a great weekend everyone and put MBC on the back burner if at all possible.
Faith (in the future
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Carol,
Enjoying a couple of saltines (while watching the Royals) as a bit of nausea hits.
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I have been carrying saltines with me since my first dose, just in case.....not nutritious, but they help
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hi ladies, had my first shots yesterday. No lingering pain at the injection side, my luprons are much worse for me. How long does this metallic taste thing last at the back of the mouth? Yuck
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Larkin- I had first shot on Wednesday. No pain at injection site to really say was concerning and no metallic taste but still today have waves of a little nausea.
Hugs Carol
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Welcome Larkin! What a pretty user name! I have never had that metallic taste but others here have reported it. That and bad smelling pee, which both will go away in a few days. Those Lupron shots sound terrible, so sorry you have to go through that as well.
Carol, I have been on Fas for over a year and almost forgot how nauseous it made me during the loading doses. This too shall pass indeed and I have not felt those icky waves since early on. The aching in the area of your mets is also an se, but one with more staying power. You may have this for a few days each time you get your shots.
Worst se of this tx for me has been frequent, very sweaty hot flashes. They don't go away either, but there are a few meds that may help if they become unbearable.
Lynne, I love your take on "for her age". Yup, young and vibrant, that's us! LOL! I have noticed Ibrance has decreased my appetite a little, but not enough to lose any weight over. (I confess, I love to eat!)
Deanna & LindaL, Hope your dental work was fairly painless and the nausea is gone too. Hugs to you both!
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I hope everyone is having a nice holiday weekend. Goodbye summer- but not summer weather-around here.
I wanted to ask if anyone on this board has deconstructed their implants. There is another board, dedicated to that and I have been reading it. Getting these uncomfortable and not attractive implants has been on my mind every since I had the surgery in 2012. I immediately wished I had not had implants. I've never expressed that to my MO, but I think I will on the next visit and see who she might recommend for it. I guess it is likely to not be covered by insurance unless someone can convince them I'm uncomfortable enough that it needs to be done. And now that my thoracic mets are acting up (see RO this Wednesday) maybe it's possibly covered. No matter, I really want it done. Anyone here with experience? I'll keep reading the other board too.
Thanks!
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I haven't ever had implants, so can't speak to deconstruction.
But if you're making plans for what you might do after, you may consider going flat as one option.
There's a great topic at bco about it at:
https://community.breastcancer.org/forum/82/topics...
Here's the community link:
https://community.breastcancer.org/forum/82
I've lived without breasts, bras or prostheses since bilateral mastectomies in 1991.
Going flat is a different type of life, but it's been a good one for me.
Not advocating for one way or another, but am always for informed consent!
warm healing wishes, Stephanie
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Thank you, Stephanie. I do plan to go flat. I have no intention of trading implants for a bra with prosthetics. Just the right choice for me. At 67 and all my other issues, comfort is the priority. I have already had to buy tops that camouflaged the not great implants I have. So, no problem to transition to flat.
Thank you for the links.
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just checking in here before I send off a note to my RN. Any problems with Claritin and Faslodex together?
I have to do something to get these allergies and sinuses improved.
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