Faslodex Girls Thread
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Ah Pat, it had never occurred to me that Faslodex could cause mood swings~~the usual for me of blaming my craziness on myself. Short story long later but my MO and I had some tension today in our conversation and he called me adversarial but when we made up he did talk about mood swings and hot sweats too from Faslodex. Thank god I can blame my craziness some days on Faslodex! LOL honestly. Tomorrow I take my crazy self off to NZ.
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I am getting one fantastic night sleep after another after following a regime of 3 weeks of hot yoga 6x per week. Any hot exercise will do, I suspect. Some of my sessions are short sessions in the underutilized steam room at the local spa but I do a 90 minute bikram class 2-3 times per week. This week I am tapering off to 2-3 times per week total and still sleeping well. May go down to less while maintaining an exercise routine that doesn't involve heat because it's limiting in some ways. But the intense period of working out in heat has reset something.
Stress and anger interfere with my sleep and it hasn't been great since diagnosis. It's amazing to sleep so well consistently. I hope everyone finds their way to a good night sleep.
>Z<
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Well done, Z. And good to know.
Sadie, I don't care for the fact that your GP referred to your having a "terminal illness". I'm neither blind nor ignorant of the facts, but it is so much more encouraging to try to think of this as a chronic illness rather than necessarily a terminal one. I called myself "terminally ill" to my pulmonologist once, and he looked shocked and taken aback and said, "I prefer to think of what you have as a chronic illness". He went on to tell me of one of his patients who has had MBC for 20+ years. I confirmed with him that it was MBC rather than an initial diagnosis of BC, and he assured me it was. Phrasing can make such a difference, I find anyway, in mindset.
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Joyner, to be honest I'm not entirely sure of the wording he used as it's like water off a ducks back with me. I know he means well. He's an excellent GP, very caring, but he does tend to be quite formal and expects me to behave a bit differently under the circumstances - I tend to crack jokes rather than wallow in despair. I actually think he's a bit funny. When I was originally diagnosed I made a crack about my "big adventure". His response was "It's not an adventure. It's horrible." I explained to him that everyone deals with things differently and my coping mechanism is to be slightly irreverent and make jokes. I've since reminded him of this fact. All the crying in the world won't change the situation... I prefer to carry on giving Mr. C the one finger salute. It's my stubborn nature.
I do appreciate the support though.
Good for you on the sleep Z. I don't think I could hack the heat but do need to start getting my sleep quotient up there. I seem to be getting less lately. May be another side effect from the Faslodex or could be other aches and pains. Looking at options...
Cheers all.
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Sadiesservant-Yes, I am irritable on Falsodex. Especially when tired. But, for me there are other factors at work such as depression(treated), feeling frustrated about being achy all of the time(using tylenol/ibuprofen and heating pad) and generally feeling vexed at not being able to do as much. It's a complicated soup. The anxiety of waiting to see if this slow actor is going to work is draining, also. I've never taken an anxiety medication; don't know if that would be an option for you. I am on my fourth month; scan in March.
Gracie-so they messed up and then started over? WEAK procedure on their part, DUH! You've got the Ibrance going and I'm willing to bet the mix up on the Fasodex dosing will not affect you negatively. As suggested, may calling the "Falsodex Hotline" could verify that.
Best to each, MJH
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Hello good ladies,
I am on Faslodex with Xgeva. I have experienced weird mood swings and what can only be described as occasional depression. I am usually an upbeat person but this crap had made me a tad different.
I finished my loading dose and will have my first monthly on Feb 14. Had Xgeva yesterday because when they gave both to me at the same time I was punched down pretty hard by that much drug in my body and felt really awful for a few days.
I also had blood work yesterday and will get the tumor marker results probably on Monday. This alone makes me feel anxious and irritable - the waiting to find out if this drug is working.
Question: I have weird pains that come and go. Sometimes little pinches here and there like something biting me inside. Makes me paranoid that those little buggers are chewing on my bones. I fervently hope that's not the case and that it's the Faslodex side effects. Anyone have this type of pain on Fas?
Chats
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Chatsworthgirl- lots of weird pain with Falsodex for me-lots. Another gal on this thread related that she remembers pain upon starting it also.
Best, MJH
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Thanks for your response MJ. I think the thing that freaks me out is the little biting pains. Hope that's the little mets monsters dying a very nasty death. LOL
Chats
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I got my second Faslodex shot on Friday. Tired. Is being tired for a couple of days after the shot a thing or is this how life is going to be on faslodex?
>Z<
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Hi Z. I haven’t experienced tiredness other than from my patchy sleep which could be caused by the hormone issues (along with the crankiness). You’ve had a lot going on and, if I recall correctly, have been pushing yourself a bit. Perhaps your body is sending you a message. 😉
Take care of yourself!
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Z, it hasn't happened to me. That said, I remember reading others say that particularly on the night of the day they had the shot, they were wiped out.
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Z,
Faslodex veteran here. On the day I get the injections, I come home, rip off the bandages from my blood draw and injections, and shamelessly indulge myself in pita chips dipped in hummus, and perhaps some cookies. I sometimes take a little nap of an hour or so, too. This makes me feel really sybaritic, but I tell myself it's the least I can do for myself. The next morning I am A-OK.
Tina
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Hello all,
Update. Got my tumor marker results yesterday. Not sure what to make of it. CA 2729 has increased from 528 to 591 but Alk Phos has decreased. I have read that Alk Phos going down is a sign that bone turnover from mets is decreasing and that means the cells are not eating so well. Not sure what to make of the TM rise. Perhaps cells dying? A bit of flare from treatment working? I don't want to think that it's progressing, that's for sure.
Chats
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chatsworth - alk phos going down is a good thing. That is a small rise in CA27.29. Could be stable. These biomarkers are ambiguous for sure.
>Z<
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Z,
I appreciate the positive thought re stable.
I will be seeing my onc tomorrow for my Fas shot. Happy Valentine's day with a sore butt. LOL So far he hasn't been too alarmed by the marker staying in and around the same numbers over the past six months. Although the last one and this one are higher, it's true not by a whole lot. I will go over that with him and see what his thoughts are.
My liver enzymes are normal and all the rest of my blood work is normal. My WBC went a bit lower but he told me this fluctuates as a normal thing. I think it was 4. something. When I was on Ibrance it was tanking so badly even with the lowest dose and it wasn't lowering my TM's so we quit that. I did read that Fas can also lower WBC counts so maybe that's it.
A Valentine to all XOXO.
Chats
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Hi All.
Another question from the Fanny Pack newbie... I know weight gain is a known issue but how big of a problem has it been for everyone? After a year when keeping weight on has been an issue, I now find that I am suddenly gaining weight, rather quickly. To be fair, I have a healthy appetite and have not been worrying about limiting my food intake but four pounds in about a week seems extreme. (I do seem to have a bit of fluid retention but not an excessive amount.)
I struggled with my weight through my teens and most of my early adult life, finally getting things under control in my late thirties. As a result, I'm a bit sensitive to fluctuations on the scale. I exercise quite a bit already and am not wild about now battling the bulge! Just wondering if this stabilizes or if I now need to seriously watch my diet. I'm due for my third loading dose on Friday and then go to monthly so have barely started this regimen.
Pat
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Back again,
Zarovka,
you were correct about the small jump. The Onc is on board with that and concurs that it is more like a leveling number than a big jump which would signal progression. The big jump was when I was on Ibrance Letrozole and it went from 350 to 528. That's when we switched to Faslodex. When I discussed the Alk Phos numbers being good he looked a bit surprised that I was so informed. Blinded by my brilliance! LOL.
Interestingly my WBC went back up to 5.5 and the grans which is what he says are more important was at 3.7 which is good. So we are going on with the Fas only and in a month we will check again. He wants to put off having a scan until after that as it takes Fas a few months to work.
Pat,
I was putting on some poundage when I was on Let and Imbrance. But I was also eating a lot of carbs and unfortunately at my office they have a lot of chocolate candy and cookies - my weak spot. So I have been lowering my intake and cutting down carbs and limiting dessert or chocolate candies. I have one or two sweets per week and I have now dropped about 5 pounds and it is where I need it - around my middle. I was getting love handles and a belly and I judge by how my jeans fit. I refuse to go to a larger size so if I get the dreaded muffin top I know I have to rein it in. It's a mind game for me because I really, really, really like sweets and carbs. RESIST!!! I have to remain vigilant with this because I know that Fas has a weight gain side effect. Trying to eat a lot more veggies too.
I make a big stew of lots of vegetables and then when cool blend them into a soup and I can have a nice nuked cup whenever I feel hungry. It's an easy way to eat a lot of veggies. The hubby likes it too.
There is this dress I want to wear on Saturday for my birthday and I swear I won't eat for the next two days if that's what it takes for me to wear it and look hot. LOL
Chats
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Chats - I am so glad your doctor sees nothing bad going on.
>Z<
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I am officially crabby. Good to know that faslodex can do this.
I am tired but not sleeping well since my last shot. Poor sleep could be the actual source of the crabbiness. Off to Spa to workout in the steam room. Seems to relieve all these side effects, probably by giving me a good night sleep.
>Z<
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Oh dear. I know what you are going through Z. I did read that sleep issues can occur with this drug and I am having this in spades. No trouble getting to sleep but I keep waking up at about 12:30 AM and cannot get back to sleep. My Fitbit actually bailed on me last night... couldn't get a proper read, likely due to the fact that I was awake more than asleep!
Going to try my GP's suggestion of Gravol tonight. Not too crabby today... just fuzzy... zzzzz
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Well, I am pleased to say that I had my Faslodex injections this afternoon in NZ. It was to have been done by a nurse in my SIL's doctors' office but due to serious miscommunication that avenue was blocked yesterday. The call went out and an ICU nurse friend of SIL came to and did them after reading the inserts and getting my input. She did a perfect job and only after was I told that the last IM she did was 15 years ago as all meds in ICU are now IV.
Next one is scheduled for back home in Victoria.
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WHEW, Mariane!!
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Bringing this forward from Jobur...
"During my last 2 treatments my nurse has had an extra hard time pushing the plunger during my shots, to the point of wondering if they changed the needle size. For my 2nd shot last month she used a bigger needle as the 1st shot took almost 4 minutes. I tried calling Astra Zeneca, but they were unaware of any change to the med or package. So now I am wondering if my nurse's difficulty is due to scar tissue buildup in my butt. I have the same nurse every time, so it isn't her technique.
Have any other long term Fas users experienced this? I'm wondering if it's time to go to another injection site. I have always gotten my shots in the dorsogluteal muscle.
My nurse also informed me in December that my clinic now recommends the ventrogluteal injection site rather than the dorsogluteal. She said this was due to concerns of the injection not reaching the muscle for those with more padding in the rear. As I had good results in the past (and my butt is on the lean side) she was okay with continuing with dorsogluteal injections.
I'm a little (okay, a lot) afraid to try the ventrogluteal (hip) site for injections. Looking for experience from anyone who receives their shots in the hip rather than buttocks."
My comment is this was a concern but they did nothing different. I developed a pocket of fluid in my right buttock too. My arse is quite padded. I just knew most of the nurses were not doing the injection properly. Thre was a lot of solution leakage right after and that left bad welts. Hubby watched and said the only nurse who did it wright had the practice of pressing the needle further into the buttock once the needle was inserted, so she was deeper. She of course left and I had the rest to teach or deal with. My injections did not kep progression at bay and I wonder to this day if it was my body or the impropr injections.
Also we are led to believe the Faslodex is in our system for a few months after the last injection. But when I boldly asked one oncologist his answer was just a few weeks.
So no one really knows anything at all???
I want to go back on Faslodex w Aromasin and Kisquali or something, something heroic as I am in dire shape right now. Yesterday the oncologist basically blew off my needs. And he said that Faslodex is only given on its own. OMG. Another MO fired by yours truly. I do not have the tolerance for them thinking I am stupid. If not for the BCO site of rightful reason, we would all be left insane.
Diane
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Diane -
Faslodex and Abemaciclib is totally a Thing. Ibrance and Kisquali are different brands of essentially the same drug, while abemaciclib is a second generation CDK 4/6 inhibitor. Since you've already tried Ibrance, you may want to move on to a substantively different drug like abemaciclib. However, some people continue ibrance after letrozol and ibrance fails. When that treatment fails, its not clear whether the hormone suppression failed or the CDK 4/6 inhibition failed. Ibrance does not work as a monotherapy and requires working hormone suppression to be effective. So you have an option to continue ibrance (or kisquali) with faslodex or try something different and possibly stronger like abemaciclib.
The Faslodex Abemaciclib combo was approved by my insurance. I declined for the moment because I am doing immunotherapy but it is an option for me and why I started the thread I link to in the first sentence of this post. It's a thing.
There are a number of other targeted treatments you can combine with faslodex like mTor inhibitors. The most interesting ones are in trials and given your MO's lack of vision you should consider a trial consulting service like emerging medicine or cancer commons.
Faslodex stays in the system for more than a few weeks based on this graph. The injection is the line where data points are black circles (250 long acting i.m.) I could not quickly find a pharmacokinetics study of more than 30 days, but you can see from the graph that the concentration in plasma barely tapers after 4 weeks. If the topic interests you then make yourself a cup of tea, google "faslodex pharmacokinetics" and enjoy. You'll come to your next appointment better informed than you doc. This will impress them and freak you out, in my experience.
Your doctor is not great but neither is mine. I live in a remote part of New Mexico which does not attract the best and the brightest. That said I went to the Mayo Clinic Rochester, The Best Hospital in the US, and ran into one great doctor and one moron. A number of us have speculated that there is a tribe of morons who went into oncology and they all descend from a single original Moron. There are a bunch of oncs who just seem cut from the same cloth.
You are basically on your own. You need to curl up with Bestbirds Insider Guide to Breast Cancer which outlines the standard of care as well as well researched options beyond the standard of care. There is NOTHING in Bestbird's well researched guide that a doctor who practices the standard of care should decline to consider.
Regular updates on your path and how you are doing, please. Many people here care about you and how you are doing.
>Z<
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Zarovka,
You made me snort my coffee with the moron remarks. I have been through a few oncs myself and wonder if the morons flock to oncology because of the little work they actually have to do and the nice hours. The men wear nice clothes and the female onc I tried briefly was sporting some nice duds and very nice jewelry. Kinda hard to do much - God forbid if someone started to bleed out on them!! LOL And, I live in Los Angeles which one would assume would have lots of top doctors.
They all seem to just go by the "standard of care" routine. Whatever big pharma pushes out and the protocol decided upon by the oncology board or whatever they are. And the biggie - CYA. Yup they do the standard of care because it's the safest path with the least likelihood of being sued for malpractice.
So, bottom line - and I believe you have voiced this opinion - we have to be informed and advocate for ourselves. All of the information I have gratefully received on these forums and my own research has been of tremendous help and given me a certain peace of mind because I know what is available and can make informed decisions. Tough being a control freak!!
And I will also chime in on sleep. Yes this drug wakes me up after just a few hours and I have difficulty sleeping through the night. For a while I was taking Artemesinin and it actually has sedative effects but I could not see anything on the chart that I keep that indicated it was doing anything positive for the TMs so for now I am just doing Fas so that I can see if it - by itself - is doing me any good. I will know on March 14th when I get the next TM blood test to see how the markers are trending. Fingers crossed for DOWN.
Chats
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Fingers crossed here for DOWN, Chats. Keep us posted.
I started faslodex on 1/25, less than a month ago. It hasn't done anything to control my cancer if these markers are any indication. I've read it can take 2-3 months but I am interested in any individual experiences on how long it took to get a response as measured by TM's or scans.
Thanks,
>Z<
1/11/18 Cancer Marker CEA 39.8 2/1/18 Cancer Marker CEA 60.8 2/19/18 Cancer Marker CEA 323 0 -
Z,
From what I have read on other posts, some didn't see a downward trend for 3-5 months. I know it's hard to wait that long. I have very little patience with this crap. My onc talked about adding Verzenio if we don't see something next time. I'm not sure I want to add that just yet. I would prefer to get another Pet/CT scan to see if there is any change first. Basically that's because I have read too many times that the TMs don't correlate with the scans. It could be that there is die-off and the TMs pick that up. So many questions and no answers.
Sometimes I get so frustrated with the waiting. I also get a wave of terrible anxiety periodically which I try hard to control.
Just got home from work, lit the fire in the fireplace and poured myself a glass of red wine. My H works very long hours in the movie industry so I spend entirely too much time alone and being a social animal, that tends to make me think way too much. I really need to get out more. LOL
Chats
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Zarokova,
Yes, Faslodex takes a while, but the results can be impressive. I've been on it for more than six years.
As I recall, Faslodex visibly worked on my lung mets within six months. They were stable about a year later. My scans since have showed no evidence of active disease.
Hang in there!
Tina
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Thanks Chats. A lot of unknowns is just a fact to deal with, but your observations from your reading are very useful. Verzenio is an interesting option and high on my list, but I am waiting as well. You can peruse my Abemaciclib forum and read about the diarrhea at length. I think gut health is very important to the immune system so that is a piece that concerns me.
>Z<
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Hi All,
Interested to read the discussion on how long it takes for Faslodex to work. I’ve been on it just over a month and, as with other treatments, my response seems mixed. My SOB and stamina have definitely improved but the discomfort in my chest and belly are the same or slightly worse. I started having hip pain and pain in my right pubic bones before I started this treatment and they are definitely worse.
I have scans scheduled over the next few weeks to see what’s up with the hip/groin so it will be interesting to see if there is any change. Also due for blood work with TMs in two weeks. I received my file updates yesterday and in my MO’s notes he indicates that he will be looking for a response after two months. If it’s a strong response then we continue on. If it’s ‘a sluggish’ response then he is considering adding palbo back in at a low dose (he is concerned as I had significant anemia on Ibrance).
So... another view on how long it should take.
Pat.
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