Faslodex Girls Thread
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I am dying of thirst as well, to the point my mouth is very dry. I wake up to find I'm breathing through my mouth which makes it even worse. +1 on the curcumin, a miracle for joint pain. My dad even takes it for his knees.
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Linda, some brands of curcumin do, especially on an empty stomach. I've had the best results (least stomach issues) with Life Extension and Jarrow, and I'm careful to take it when I have food in my stomach.
Good to know about the breaks. And if insurance will approve a day or two early, that's good to know, too. I assumed they would not.
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One scan down, one to go.
Just picked up the report from my annual CT of chest, abdomen and pelvis. Cue the fanfare-- everything is STABLE! This, in my case, means NED.
I have a bone scan Friday. Cross fingers.
Next month I will have been on Faslodex for five years!
Feeling lucky,
Tina
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dlb823, I've put off Faslodex several times, mostly because I was traveling somewhere. Once every 9 months or so for either 5 days or a week. Onc just shrugs. This month I need to have it a day early (or wait an extra week) -- hoping there won't be a problem.
no joint pain here, though I'm often stiff, so I can't contribute there.
Tina, you ROCK!! Go girl!!!! (and many congratulations) I aspire to be you.
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Tina that is AWESOME! Is faslodex your first TX with mets? I wish so bad I could get that long!!
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Tina: Congratulations on the good news. You and Denny are leading the field of fanny gangs.
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Tina, This is GREAT news!
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HLB,
Yes, Faslodex is my first and sole treatment for mets. The only other thing I get from the onc is an injection of Prolia twice a year to make my bones less hospitable to invasion.
Tina
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Lindalou - thanks for the info - I have had extensive blood testing throughout the past 18 months which is as long as I've been on Faslodex - my magnesium and potassium are fine - I've added (with my oncs reluctant o.k. a small dose of magnesium supplement) which helps with severe cramping (i.e. charleyhorses) but nothing has helped with the other cramping which I am now happy to hear is a listed se and now I get to educate my onc and PCP all over again - there just aren't enough patients in my area on the shots and of course lots of people don't report se's. I will start hydrating like crazy even though I do try especially at this time of year - and omg the hot flashes are just sooooo intense especially when in the midst of a heatwave - I may be in Canada but we've had a couple of weeks already this summer where it was in the high 90s for multiple days - lots of laundry and showers for me.
Tina - such good news - you've made my day!!!!!
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Sandy, I wonder why he was reluctant about the magnesium. I thought it was a good thing to take for almost everyone.
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So 2 completely different things but...
The nurses had me stand pigeon toed when they did the shots today and I can't believe how much better it feels/felt....
So can everyone else tell when it is time for the shot again ...the week before I ache, hot flashes... honestly and hour after I feel SO much better..
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keetmom, I'm glad that standing pigeon toed made a big difference for you! And yes, I can also tell when it's getting close to my next Faslodex shots! I experience increased rib pain that briefly alarms me every time -- until I think, oh yeah, it's almost time for my Faslodex shots! It usually starts about a week before they're due. I asked my local onc (where I get those shots) if others have reported that to him, and he didn't seem to think it was common. But I've discussed it with others here, and we're definitely not the only ones who've noticed it.
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CA I've also experience major lower back pain Dr did pet scan and MRI everything looked good. Asked if it could be from the shots he said definitely no, told me to go to a orthopedic, These are his words since it's not cancer related have them figure it out. Very upsetting to me, it's not enough that we are fighting cancer but now I have to live with conic pain, I walk like a 90 year old. Yes im happy I'm alive but I'm in pain every single day.....
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Wow, is all I can say to your onc's attitude, nikstir! It's probably not uncommon for oncs to refer out for stuff they feel is not caused by our mbc, but I also think they can way overly minimize drug SEs and TX induced conditions, just so they don't have to deal with them. If your pain is constant, maybe it would be a good idea to have an ortho doc take a look at your most recent PET and MRI, to be sure you don't have any fractures or structural issues possibly missed by whoever did those reports.
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thank you so much, I'll do that can't hurt to try ❤
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HLB - it's a "she" - all my drs. are now and no magnesium is NOT good for everyone - too much can give you chronic diarrhea I eat a very good diet and it is rich in mag and I take a low dose supplement o.k.'d by the drs. - I think the problem is that no one wants to admit there are some pretty common (not rare) se's with this treatment and I know from firsthand experience they can make you quite miserable on occasion - I hate that the drug company doesn't put out proper side effect information - we need something to shove under noses so that we are taken seriously and not overtreated for arthritis, pinched nerves, etc.
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Just heard of this new treatment wondering if anyone knows or heard anything ?? ARomatast inhibitors and Bisphosphonates
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hey nikstir. The study I think you are talking about is for early stage post-menopausal BC patients. They are looking into adding Xgeva/Prolia to the AI regimen to see if it prevents the cancer cells from entering the bone and metastasizing. AI's, as we all know, can cause osteoporosis and they are trying to find out if the biphosphonates will prevent bone mets. Would've been nice for them to think of this earlier in my case. It makes sense.
Deb
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Thanks for the information, I did not read that in the article..... Looking for a treatment other than faslodex........
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I want to chime in with early results from stopping Ibrance & Letrozol and starting Faslodex only (with xgeva now at every 3 months- btw, I have only bone mets)
I have been off Ibrance one month today. I was on 125 dosage exactly a year with mixed results scans and rising TM (after initial good news the first 4 months or so.) But the fatigue had really impacted my QOL. If I continued on Ibrance I was going to request to move down a dose, even though my blood work was low but acceptable. ANC 1.0.
Anyway, after the first month I feel like a human again! I'm back to walking for exercise and not napping every day. Amazing difference for me! I'm in awe of those who have been able to stay active on Ibrance. But I'm so happy on Faslodex for now.
Now, if Faslodex is really working-we'll see! TM and scans coming up in August and September. But no current pain issues. (Except my permanent pain from collapsed L1)
Best to all! Had to share
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nikstir, aromatase inhibitors (A/I's) are a class of drugs that stop the production of estrogen (as does Faslodex, but in a different way). There are 3 A/I's -- Anastrozole (Arimidex), Letrozole (Femara), and Exemestane (Aromasin). They've been around for quite awhile and are what postmenopausal early stage women with ER+ bc are normally put on for at least 5 years following their active tx. These same drugs are often the first tx RX'd for mbc, so there's really nothing new about them.
Bisphosphonates ((Zometa, Fosamax, Reclast and a few others) are drugs that build bone. They are also commonly RX'd for women with bc because Aromatase Inhibitors and our disease process both tend to cause bone loss. Recently (within the past 2 years) bisphosphonates have been proven to help prevent mets. Here's some research about that. http://www.thelancet.com/pdfs/journals/lancet/PIIS...(15)61163-1.pdf Some of us are on Xgeva, which is the newest generation bone builder that works slightly differently than bisphosphonates.
So... not sure exactly what you read, but yes -- though not new news, an aromatase inhibitor and a bisphosphonate are a powerful combo to fight mbc, and most of the time the first choice before Faslodex (which is also often accompanied by a bone building drug). Not sure why your onc put you on Faslodex first, but I'm sure he/she had their reasons. But if you are having serious SEs that cannot be eased with other meds or complementary therapies, then it would be a good idea to ask if an A/I might be an option for you. And if you're not on a bone building drug, such as Xgeva (a shot) or Zometa (an infusion), ask about that too!
I also don't know where you're located of what kind of onc you're seeing (hopefully one that has a lot of experience and an excellent track record treating mbc!) -- but second opinions are another option.
I hope this isn't too basic, but from your question, it sounds like you are in the very early stages of your dx and tx, and I thought this thorough explanation might clear up some questions for you. Deanna
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This video explains how Faslodex works from Astra Zeneca.
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Thank you you so much very informative, any knowledge is good. Lots to think about.....😊
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Tina, Woo Hoo! Hope the bone scan is squeaky clean too. 5 years is incredible! We all want to be just like you.
Kaption, See how that return in energy sneaks up on you? Enjoy! Hope Fas treats you right.
Deanna, You are really a treasure on this forum. Thank you.
Nikstir, So glad you found your way to this forum. You will learn so much here. Have you talked to your oncologist about switching to a different treatment?
Hi Aime, Glad you have discovered the joys of being pigeon toed! You must get both shots at once? Hope you are having a good summer.
Is anyone else @$^# TIRED of hot flashes and night sweats? I'm sure I'm the only one, LOL!
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Jobur thank you so much, I have not talked to on yet...... looking to see a orthopedic and see where that goes. This site is absolutely wonderful, so glad I found you girls. ❤❤❤
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Jobur,
Thanks! No word on the bone scan yet, which is my fault for having it the day before the holiday weekend. (Smack forehead here.)
I get sporadic waves of hot flashes with accompanying icky feelings. They are unpredictable and occur at all times of day. The other night I dreamed I was soaked in sweat and woke up to find it true. Urg. However, they are never so strong that I have to change the sheets, as others here have reported.
Tina
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I have started getting night sweats really bad! I have always had hot flashes but rarely night sweates and now I'm getting them since I started this treatment.
Nikstir my onc asked me first thing if I had low back pain because he knows it's a SE. And he one to usually downplay ses or deny they are from treatment. Awhile ago I had a trigger thumb that I was sure from knitting and crocheting, but he said it's one of the most commen ses of AIS. I was really surprised by that. It eventually went away on its own.
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HLB, Same here. Night sweats are driving me crazy. Wake up sweaty and then freeze the rest of the night. They are keeping me from getting good sleep, and that affects everything.
Tina, Hope scanxiety is not getting the best of you over the long weekend. I like how you described hot flashes, the icky feeling description hits home.
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Picked up my bone scan report today. It's quite brief compared to previous reports, which I find somewhat unsatisfactory. It's also riddled with typos, the most prominent (and amusing) being "Following intravenous menstruation..."
Putting my quibbles aside, I am pleased to report the bottom line:
Impression:
1. Peripheral, presumed degenerative changes.
2. No definite scintigraphic evidence of osseous metastatic disease seen.
I am sitting at the kitchen table trying to decide how to celebrate. Change into grubbies, go out into the heat and do yardwork? Pay bills? Have a dish of ice cream? Post this?
All of the above!
Tina
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LOL, Tina! And WooHoo for those results!
Let us know how the intravenous menstruation goes.
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