Faslodex Girls Thread
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Pajim, I suspect she will be getting the IV Zometa through her port. I haven't heard of Faslodex given any other way but as an intramuscular injection.
Birdlady, I hope you continue to heal well from surgery and don't have any major side effects from your meds tomorrow. I had my first Faslodex injections 1 week ago and so far have had no side effects at all. Even the injections were really not that painful or sore.
I also took IV Zometa for 5 years. Will this be your first dose of Zometa? If it is, I suggest you drink lots of water before and after the infusion, plus you may want to take a Tylenol or Ibuprofen after the infusion to cut down on any aches and pains. My first dose of Zometa caused some mild flu-like symptoms with some muscle aches for a couple days. After my second or third Zometa infusion I stopped having any side effects at all. It helps if they slow down the Zometa infusion so it takes at least 20-30 minutes to infuse.
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mila- that must have really been freaky! I had never heard of that, but apparently it does happen!
My shots are pretty easy now, but when I started, they would sometimes cause a rupture where they were injected, on one side only. I hadn't known anyone else that happened to, and neither had my nurses.
Good luck, birdlady. I hope this treatment treats you well.
pajim- my guess is that the Zometa will be through birdlady's port, and the Faslodex in the muscle.
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No, the Faslodex is 2 painful injections in the butt. I prefer to have 2 nurses give it to me at the same time to get it over with. It's the Zometa that is an infusion in the port. I seem to be a lot less sore in the breast near the port this morning, so hopefully it will not be so uncomfortable. As with almost everything else, worrying is worse than going through it. The Faslodex/Zometa combo has helped me, so I am thankful for those medicines being available to be.
I was just a little whiny last nite. Thank you girls for being here for me. It helps to have someone who understands.
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Update...as I suspected, I was worrying for nothing. My Dr. was very pleased with the amount of healing from my surgery. The Faslodex injections didn't hurt as much as usual, and accessing the port was just pressure. I am hoping that the usual SE will be minimal, too.
Praying for comfort for the rest of you sisters in the "Fanny Pack"
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So...... a few days ago I was really tired and forgot to take off my earrings before I went to sleep. One of them fell out and I looked all over the bed and floor and couldn't find it. DH found it - or I should say it found him when he rolled over in his sleep the next night and it stabbed him in the tush. I told him he was now an honorary member of the Fanny Pack.
And the good news is - my TMs are continuing to go down dramatically and I'm DELIGHTED. The only reason this post isn't full of exclamation marks is that the exclamation mark key on my keyboard isn't working.
Leah
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Good news, birdlady and Leah!
As for you, Leah's husband, welcome to your honorary position in the Fanny Pack.
Tina
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Leah,
That is so funny! Please welcome Mr. Leah to our little group, if only for a short time.
*susan*
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I am new to this thread. Hi ladies! Faslodex is no joke. I started around February of this year [I think]: the following side effects are driving me nuts: Joint pain, memory, anxiety, hot flashes - Help - I am going nuts! I did use Femara a few years ago and will not revisit - the joint pain was worse.
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Hi activern,
I am lucky and have not had much joint pain or hot flash type symptoms on either femara or faslodex but I remember that chrissyb has a bunch of recommendations for things that help with the joint issues (not sure about the hot flash part). Hopefully she will see your post and write about them because I don't recall the exact details.
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This morning I received my 35th round of Faslodex and it went as smooth as silk. I've had the same nurse the entire time, so we really have it down. Yay! I love this treatment and hope it goes on forever.
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Hi activem, it seems some women are more susceptible to anti-hormonal drugs than others. Just like some women sail through menopause and others suffer and suffer. TMI but I had a friend once who described her hot flashes as "a 3000 degree bake oven". I have no idea what that feels like because I just get warm.
I have the memory issues. They cause me some anxiety but I've accepted it [mostly] and try to make to-do lists. When I think of how sharp I used to be. . .sigh.
Can you ask your onc for anti-anxiety meds? Maybe that would calm everything (not just you) down.
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Hello everyone! It seems my next step is Faslodex. Now it is just a question as to whether I do Faslodex alone or go on a clinical trial of Faslodex with bkm120 added in. Even if I do the trial I only have a 50% shot of getting the bkm120 with it.
I am freaking out a bit about the shots. I have huge needle phobias that have only gotten worse now that I have chemo veins. My blood draws and IV pokes are awful now. I hear these shots are pretty monsterous and the thought kind of makes me want to cry. It will be worth it if it works right?!
Did any of you who are finding success with Faslodex previously fail on Femara?
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Brandall, welcome to the Fanny Pack! Be sure to study the many tips in the beginning of this thread. They are borne of our collective experiences over years and will help you deal with the injections. Speaking of which, be assured that Faslodex is delivered into a big muscle, not a vein, so there is no poking around or prodding as often occur with blood draws and IVs. Another difference is you can't look at the injection process even if you want to--it's behind you!
Yes, the shots are worth it when they work. And they often do. Many of us are enjoying multiple-year runs on the stuff.
Faslodex has been my only treatment so far, so I can't answer your question. Chances are someone who has been on Femara will be along soon.
Tina
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Brandall, really, the shots are really not that bad. I can honestly say I hardly felt mine as they went in yesterday. A little itching last night was the worst of it. I can't know if you'll have an easy time, of course, but it's very possible.
Faslodex works differently than all of the AIs. It doesn't reduce your estrogen but rather renders the receptors unable to function as the normally would, so keeps them from taking up the estrogen. That's why it's meant for women for whom the AIs no longer work.
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Brandall,
Aromasin failed me. Faslodex has been the proverbial Knight In Shining Armour. So, my words of encouragement. The Faslodex shot is given in your behind. The nurse is behind you. The needles are behind you. You never need to see them if you don't want to! There is some stinging for some of us, and some behind soreness, but here is the good news.... you will have SO much more energy. Your bones won't ache as much [probably.] The side effects of Faslodex have been, for me, so much easier than the AI's ever were. It took some time to clean the aromasin out of my system, but then the difference was extremely noticeable.
You are going to have more energy for that smart-but-troublesome young boy. Your days won't end at 2pm because you are too tired to go any longer.
For me, the indignity of having two shots every single month in my buttocks is worth what I have gained: 4 years of NED.
I sincerely hope that this drug works as well for you as it has for me.
*susan*
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I received my first Faslodex injections yesterday. I didn't even feel the shots, but today I am experiencing joint and bone pain. Also, I am soooooooooooooo tired. Will these symptoms pass soon?
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Hi Pcrandall, welcome to the "Pack"! I think different people have different experiences, but for me the ache and pain does get better after a few days. It comes back on and off, but not quite as bad (and definately not for as long a time) as when the injections are fresh.
Hope Faslodex is very good to you!
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prcrandall
Yes, they will probably be much better in a day or so. I was really pooped the day after my shots this week (Thursday ) and had a bad headache on one side that I would swear is one of my skull mets. ( maybe it's complaining?)
Today I feel just fine and spent the morning fertilizing my roses. I hope you feel better soon!
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pcrandall, did you have Zometa too? In that case the bone aches will last about 24 hours and less (or not) the next time.
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As already expressed, Saturday was a day of dozing ALL DAY and night. Sunday was much better; I even went to Target to do some shopping. Today, Monday, I am getting ready for work; I feel pretty good.
I am adding Faslodex to my current medications of Affinitor and Aromasin. Thank goodness for good insurance!
I appreciate everyone's answers to my questions. Thanks.
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Does everyone have a zometa (I think that is for bone strength?) type treatment added to their faslodex? My Onc hasn't mentioned it, but I'm meeting with him tomorrow to go over things more in detail. Thank you for all of your support! I'm terrified this treatment won't work either, so it is nice to see ladies getting a long time with it!
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Brandall,
I don't, but I also don't have bone mets. I tried one of those weekly bone strengthening pills years ago and they made me feel awful. I tried them for 3 months before yelling "uncle."
*susan*
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brandall, I take zometa with faslodex but I have bone mets and my understanding is that the zometa is to offset the weakening of my bones from the cancer in them. I really hope it works for you because, at least for me, it's been a very easy treatment to tolerate.
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pcrandall, so glad you're feeling better--here's to the next dose being easier!
brandall, I'm on Xgeva which is a little different in how it works but more or less the same idea as zometra and is also given to keep the bones stronger. It was actually the first thing they gave me even before the tamoxifen had washed out and I started the Faslodex. Your onc may have a good reason for not giving something like that to you now, but it couldn't hurt to have the conversation and see, right?
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I have bone mets. I have been on Faslodex/Zometa for six months and it has helped me. The side effects seem to be less every month. I was given xgeva while I was in the hospital after hip surgery. I was told it was to strengthen the bones.
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brandall,
If you have a choice between Zometa and Xgeva, you might want to ask for the Xgeva, as it's just a little shot in the arm. Zometa is an infusion. They essentially perform the same function, and I believe side effects are similar.
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Hello lovely ladies! Today I had my third series of faslodex shots, i started them a month ago. i feel much, much better since i started them. The thing is that my tumor markers today are up since before treatment and i am so upset (went from 400 inthe begining of march to 1300 today).... The MO thinks that can be two reasons cancer spreading rapidly or cancer dying rapidly. He told me that he is 90% sure that the cancer is dying. He wants me to do a scan in 3 weeks, and then make a desision on a treatment plan/change. I need some encouragment .... if it is spreading i will most likely do chemo. Thank you for letting me vent!!
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when I started Faslodex my mo said he would not be able to say if it was working for FOUR months. Hang in there!
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Mila, I just had my second series of Faslodex injections 2 days ago. Will get my third set in 2 weeks, then monthly. My onc has not drawn a CA 27:29 tumor marker since the one right prior to my Stage IV dx, but she already warned me that typically the TM results will go UP after starting a new treatment. She also said this is usually due to dying cancer cells.
Hang in there! Hopefully, your scans will show proof that the Faslodex is working and your TMs will start dropping again.
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thank you so much for the encouragement, don't know what I would do without this forum!
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