Faslodex Girls Thread
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Brandi,
What trial are you on? Is it the femara and palbociclib? Just curious because I did not think you could be on faslodex and femara at the same time, but I could be wrong. Sorry about the smell. Your ability to smell yourself if probably a weird s/e from your treatment. Like when everything tastes bad, or when noises and light bother you more than usual. Our treatments have a way of wreaking havoc on our senses. I have a friend who is certain that tamoxifen makes her and her whole house smell bad!
Good luck.
Brenda
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got bad news today ! Not going to be joining the butt club, my doctor said last cat scan showed progression in my abdomen so no treatment ! pet scan this thursday then possible port and chemo
not a happy girl today
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Rosie, I'm so sorry! That sucks. Hopefully your next treatment will be "the one". People respond differently to different treatments.
Best of luck to you along with lots of hugs.
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Rosie, I'm sorry for this news. Hopefully it will be an easy chemo. Hugs!
Adnerb - I'm on the Paloma-3 trial which is faslodex + palbociclib. I had to fail on Femara before I was eligible for this trial and unfortunately fail I did. But I HATED femara. It was not a nice drug to me. I already feel much better on this drug combo and I'm starting to feel a bit like myself again
I'm still terrified for round 2 of those shots though. Ugh.0 -
I got my port today and had 700 ml of ascites taken from my abdomen. It was pretty easy with a little Versed. Wilsie, you must have been in terrible pain with 5 liters withdrawn. Are you still getting ascites?
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Pam,
Yes.
Tina
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Pam,
Yes.
Cranky Creaky Tina
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Good luck Danish!
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Danish, I was miserable. Nothing fit, walkd like a toad, all I could do was sit in recliner. No appetite, couldn't sleep. I do have a small pocket or ascites showing on CT scan, but nothing I notice. My biggest fear is that it will return. The ascites is what got my attention and the recurrance identified, after 15 years. It has been over a year since it was bad. Wilsie
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Tina...are you the one who said she was creaky? I have been wondering why my knees hurt so much. Didn't know if it was from the Kadcyla or not.
Doesn't seem to be arthritis, since they aren't worse when it rains.
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Denny,
I was posting in creaky agreement with Pam, who had theorized that her stiffness was from estrogen depletion due to Faslodex. Even my oncologist concedes this is likely. Of course, I have arthritis, too, so....
Tina
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Creeeeaak.
Denny, I know I don't have arthritis. But from the way I have to limber up my fingers in the morning you'd think so. I do some stretches in bed before I get up. Else I waddle to the bathroom in the morning.
Mantra: keep moving. . .keep moving. . .
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I don't have arthritis, either. My knees creak, and my back is very stiff and sore in the morning. I have to stretch in bed before getting up, too. Once I am up and around for a while the stiffness goes away.
Maybe it is the Faslodex. I never suspected that. I just figured it was the bone mets.
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I am the opposite of limber. Moving from one position to another is a complicated procedure. Even rolling over in bed takes time.
Creeeak.
Leah
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I thought I was the only one. I have to get all the way out of bed to change positions! I blame it on Aromacin, Faslodex and arthritis. My onc said I would be safe in calling anything side effects. I have to "warm up" every time I stand after sitting a long time. Don't want to call it old age!
Wilsie
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Ladies, I have been inspired by the recent postings in this thread to mark today, the third anniversary of my Stage IV diagnosis and start of Faslodex treatment, with this proposal:
Let's start a virtual band, dubbing ourselves "The Fanny Pack" (of course). The engaging title of our first album, courtesy of Leah, will be "The Opposite of Limber." Naturally the title composition should be a lilting samba. Imagine something like the following, to the tune of "The Girl from Ipanema" by Antonio Carlos Jobim:
The Opposite of Limber
Stiff and sore with punctured buttocks,
The Opposite of Limber is walking
With bones and joints and hips and ankles
Going "creeeeak."
When we move it's in slow motion,
That stops and starts and stutters gently,
So when we lasses
Make forward passes,
We creeeak.
Oh, how we miss our old juices,
We cannot flex like we used to,
Yes, we have holey cabooses,
But each month when we add up the score,
Those holes got us through one month more.
Stiff and sore with punctured buttocks,
The Opposite of Limber is walking
With bones and joints and hips and ankles
Going "creeeak,"
Oh how they can creeeak
They're just gonna creeeak.
Tina
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Hilarious! Glad we can joke, I for one, am glad I can still get around by myself!
Wilsie
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Tina,
You are brilliant! I may sing this during my next injection. In fact, I might just make the whole nursing team sing with me! I live in Boston after all. In any group of ten people, at least 3 have a music degree. Thanks for the smile.
*susan*
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Love it Tina!
Leah
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Tina, that's fabulous. You have talent girl! May I please join the band? I admit to a music degree but it's not in performance. I'm good with the triangle! (actually I sing, but not terribly well)
I have a tip for turning over in bed. Learned it when I wasn't allowed to move due to back surgery. Roll onto your back using shoulder motion. Then pull the knee up and push yourself over using your foot flat on the bed. (The foot opposite the way you want to turn) That'll get you over without using your core muscles.
(hope I explained that so it makes sense)
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I had second faslodex yesterday. I injected my self both times in thighs, what a difference!!! Neither thigh hurts today, and I did them slower than last time, over a minute each. I am also in clinical trial w/ palbociclib. Appears I am getting drug & not placebo. My WBC's dropped, which surprised me. Told to stop palbociclib until get blood rechecked next Monday. Hopefully it is also killing cancer cells. Was very tired all last week, wasn't sure why, but now think it was palbociclib.
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Ladies, I am back to the Fanny Pack today! I have no music talent, can't sing at all, but I can be a good audience and clap. In early April, Onc stopped my Faslodex after 3 shots and sent me to MD Anderson for a second opinion. Unfortunately my two biopsy results done here proved to be wrong; I did have mets. Recommendation is to go back to Faslodex. I have to start over again, so today I got my first loading shot, still waiting for Xgeva to be approved by insurance, and then will try to sync these two shots on the same schedule.
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Welcome back cling. I will hand the tambourine to you!
*susan*
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Hi Ladies,
I am new to this thread but an old hand at BC. I have not started Faslodex, but I will get it as my maintenance drug if my chemo causes major regression or remission. So Faslodex will be my reward. I guess I should keep my eye on the prize so to speak, but your s/e's make me think it will be as fun as my s/e's from letrozole, which, BTW did not work.
Tina, thank you for changing the words to "Girl from Ipanema". You made me smile and I can't help but think you are one talented woman.
Brenda
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So cute Tina! What talent you possess!
My pain is in my knees, and I noticed that after I had my Kadcyla with a pre-med of Decadron, my knees are better, but now gradually getting worse.
I just hate the thought of having to get knee replacements.
So just trying to rule out arthritis.
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I have had four shots so far of the Faslodex and they are so painful, my nurses have done them in different spots each time but my "fanny" constantly hurts and the skin feels like I have rug burns. My onc.suggested I try Arnicare cream and the pill of 1m 5 tablet 2x a day. You get it at stores like Whole Foods. I am going to try it. On a good note I got results from my bone scan today which showed no growth or new mets on my bones. I also am very stiff and sore until I start moving around but I am always so tired I just don't know what to do about that....thanks for letting me vent.
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LSpellin, glad the drug is working for you but so sorry your rear hurts. I wonder (making this up here) whether Benadryl might help? The part about "skin feeling like rug burns" sounds like some kind of allergic reaction.
I had to use a steroid cream (over the counter one) the first few months, but the allergic reaction faded away over time.
What do the rest of you ladies think?
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I usually have sore lumps under my skin at the injection site and have learned to ignore them. The surface skin reactions--itching,hives-- I once had have not occurred for a long time. Anti-itch lotion (generic Caladryl) did the trick for me back then. Theories: Perhaps over time we develop immunity to the allergen in the formulation. Also, my nurse sprays the area pre-injection with a numbing spray which may serve to coat and protect the skin.
T
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LSpellin, sorry about the skin thing. I have a burning pain where the shots are, but not really on the skin. And even the pain has gotten a bit better each time (not the injection pain but after)--hope yours resolves, too! And congratulations on the stability, that's worth a few "rug burn" issues, right?
I got my own scan results today and I'm stable, too--so relieved since I was really worried with some pain in the other hip. So, I get to keep on getting Faslodex, can't even begin to explain how happy that makes me, but I know on these boards I don't need to explain--thank you all for that!
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Yay for stable results Rosestoeses!
I had my day 15 second set of shots and they were SO much better this time. I don't know what made them better, but they were hardly painful at all. Only now I have one red itchy spot near the injection that I think might be a hive (only one - can you get just one hive?). They won't stop the shots if I get hives will they? It is always something right!
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