Hormonal Treatment for Stage IV
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Sorry to hear about your latest challenge, I will certainly say a prayer for you, and best of luck at your next appointment. I got five years on you, and the thought of going back to school at this stage if daunting, Girl you have it going , keep up the good work.
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Ok, I am going to sound like a big dummy here...but they say there is no stupid question so here goes....
What the heck is Faslodex considered? My impression was that, as I was on Arimidex which resolved many spots completely, stopped all other but allowed for one small area of progression in 1 lesion - therefore, the change was made to Faslodex to attempt to get 100% stability, resolution and 0% progression. Ok, so far, so good. I continue to be treated with the Aredia (biphosphonate) once a month infusion combined with the new 'replacement' for Arimidex, a shot in the butt of Faslodex. In all the conversations with the onc, we always spoke in terms of 'anti-hormonals and biphosphonates' in various combinations if one should fail. I was pretty happy with the Arimidex having only allowed 1 lesion to progress but - the onc wants nothing but absolute 0% progression no matter the number of resolved and stable areas.
Here comes the dummy part - I never thought to ask other than the sheet I was given and how it worked and the se's (seemed very much like the Arimidex) what the heck it is. Is it a true anti-hormonal? The literature sure seems so much like an anti-hormonal but recent posts have me wondering - just what 'category' it falls into.
I was on the bcmets.com site and it is listed as 'hormonal' as a 'down-regulator' - but what is it really and what does it actually do? Like I said, recent posts (don't ask me for specifics) have sorta given me the impression that there is something different about it. The Astra Zeneca site is scarey...it makes it seem like this is the 'last resort' in hormonal treatment...I have only been on one.
So...'Lucy...oh Lucy...can someone 'plain dis to me'
LowRider
For now, there IS always tomorrow...Initial dx 04/99 left mas, 4/20 nodes
Diagnosis: 9/16/2009, Stage IV, mets, ER+/PR+0 -
I am starting Femara on MONDAY. After 3 treatments of TCH I was in remission. Continued for 3 more treatments, and am now going to be on maintenance of Zometa, Herceptin and Femara. Yay!! My first question is, is there a best time of day to take Femara. My next questions are - how many of you experienced joint pain and hot flashes? Also, how about weight gain? Just curious. Thanks for any help you can provide.
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Lowrider,
Faslodex info is on this site. http://www.breastcancer.org/treatment/druglist/faslodex.jsp. It states that it is the only one of its kind.
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haloteston.....my sister has told me that this is the name of the hormone blocker she is on...we are in Australia. has anyone ever heard of this?
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Hi Joannan, I'm an Aussie also. If you go to the web site www.drugs.com you can lookup the drug Halotestin. The site will give you what it is, how its used and why its used as well as side effects and warnings. Hope this helps Love n hugs to you and your sister and if you want to pm me please feel free. chrissyb0
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thank you Chrissy...the only thing I could find was about steroids, and I tried a search on this site but didtn come up with anything.
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flachica:
I have beenon Femara for about 6 months now. I take it at night. And yes...joint pain increased significantly. Doctor gave me pain meds to take but the Tylenol Arthritis Pain formula seems to work pretty good. Don't have too many hot flashes since I've eliminated most of the surgar from my diet (I found that helps a lot!).
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Thanks Mazy...I did look there and that is what got me more confused...it is the only one of its kind. I am going to speak with my onc at my next visit...my hope is that it will give me a long run but not eliminate being able to back to an antihormonal...I am not ready to accept chemo yet.
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Lowrider,
My doctor explained aromasin vs faslodex with his little line drawings. The estrogen receptors are actually two different receptors, called very creatively, alpha and beta. The AI's stop the expression of the alpha. This is true of all three femara, armidex and aromasin. [Tamoxifen stops the reception of the alpha expression.] For most breast cancer patients, this expression is the most active and is sufficient. The beta expression is less common/pronounced [not sure which]. Faslodex stops the reception of this beta expression.
The protocol of being on both an AI and Faslodex, in the perfect world, prevents the body from creating/receiving the two known estrogen pathways. Obviously, doesn't work for everyone, but I am ever hopeful that it is keeping my progressions at bay.
Hope that this is helpful.
*susan*
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Susan...very helpful...thank you and I hope for both of us that it keeps the progression away!
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I have been on a double-dose of Faslodex for 4 months now. My tumor markers keep rising but it is my understanding that this drug can take 4 - 6 months to start working. My onc started me back on Femara this month in conjunction with the Faslodex and Zometa. I changed from Femara to Faslodex only for a while because I had one new spot and, like Lowrider, my onc wants no progression at all. So I have lots of drugs in my system
I really hope this is the magic cocktail. I will have scans next month to find out. I feel great... perfectly normal for 95% of the time. The only problems that I am having is muscle pulls and/or spasms. Is anyone else experiencing this with their hormonals?Susan
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Hi I was first diagnosed with breast cancer 15 years ago and was on tamoxifen for 5 years. A year and a half ago 14 years later I was diagnosed with stage IV with bone matasteses. I had radio therapy and was put on arimidex and I have 4 weekly infusions of zometa. In Feb 2010 the cancer spread to my liver and I am currently going through chemo therapy. This will be followed by some sort of hormone treatment. My oncologist says that chosing which on is like tossing a coin. Hopefully the one we try will keep it at bay. I will stay on the 4 weekly zometa infusions.
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I expect that in a lab somewhere, someone smarter than me, it trying to figure out HOW to test our cells and these AI drugs to know before we begin if the chosen drug will be successful.
This will be the next frontier... targeted therapies instead of the current "kitchen sink" approach.
I keep donating tissue samples to these types of research projects, ever hopeful that they will help the next generation of bc patients.
Welcome KarenMary..... I hope that your doctor's choice works for you.
*susan*
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Hear Hear Susan...for bone mets and bone mets only...that is exactly what is going on. Now if it can just stay in my bones until the targeted release (sorry for the pun) in 3 to 5 years - there will be a targeted therapy specific to bone mets that may well make it a 'chronic' condition. And I don't mind being a guinea pig to aid the next generation - whatever they want to try or want from me - they can have it!
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Have Tissue -- Will Share
:-)
*susan*
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Hi Lowrider,
I have been diagnosed with a single bone met while on arimidex back in March. It was on my femur and had surgery following aromasin. Now on my follow up PET/CT there is another one on my left iliac. Tomorrow i have an appointment with my onchologist and will decide on the new treatment plan.
Your last mail about targeted therapies for bone mets cougth my attention. Now that i will see my onchologist tomorrow i want to be prepared as much as i can. When saying "targated therapies may make it chronic" what kind of drugs exactly you mean? Can you give some more info on this?
Best wishes,
Pakize
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Hi Pakize
From what I have been reading, final trials are being done but no release date yet. My onc has indicated hopefully within 3 - 5 years (that was in September). In the meantime, our goal is to use whatever is available now to keep it in the bone and not spread to any organs so I might make to be able to take advantage of it. They have me on Faslodex now - I had complete resolution on some lesions, shrinkage or stablity in many but one little bugger got just a little bigger on the Arimidex so my onc said no messing around, we change to the next one in the arsenal. I still do monthly infusions of Aredia - a biphosphonate that strenghthens the bone. I will try to locate the article and journal where I saw it - it was a few places.
Hugs
LowRider
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Hi Ladies
I have been reading these boards for a while now and joined this morning, I was diagnosed stage 4 mets to liver in nov 2005, Im currently on herceptin and femera. The femera is tolerable (4 years on) Does anyone know if it can contribute to stress fractures ? I was diognosed with fractures during the week, I am no athlete, my onc wasnt very helpful.
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Hello Joynow and everyone: I jump in and out of BCO and love this thread! Joynow: Femara can cause fractures - very rare but it does. I think a lot of the drugs we use for cancer mets can cause fractures.
I was on Femara and stopped taking it due to severe joint pain. I am now on Tamoxifen and keeping my fingers crossed for progress. Huge hot flashes but that's it. I am not sure about weight gain since that started with the chemo.
I read most of the posts on this thread and cheers to my BC buddies for all of your strength. Remarkable!
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OK girls, I'mm off this thread and on to another. I have had progression so will be back on chemo. Xeloda. Anyone with advise? All will be welcomed.
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Ah, Betty...sorry about the progression...F*** PROGRESSION...hope this new stuff kicks some major cancer butt for you!
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need some input. i've been on arimidex for six months and just recently had bone scan and ct of chest since i have bone mets and a small spot in my lung. both tests look like i was stable but i started having some pain in my hip and also some pins and needle and numbness from hip to knee. they did an xray and it looks like there's some progression in hip and pelvis. after a discussion with onc he decided to change me to faslodex monthly injection. any advice from the troops? thanking you in advance
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ejnova...well, you have to like the way the onc's think..0% progression - no matter what is stable, what is resoloved, what is shrinking - if there is any progression at all - time for a change. I was on the Arimidex and Aredia as my first round of treatment and they switched me to the Faslodex and Aredia. I had no significant changes in the se's and after the first injection (always scary), I found it to be pretty easy - and I got to get rid of one bottle from on top of the frig. I will have scans in about 2 months to determine its effect but I will say, there is slightly less pain. The
Faslodex has the consistency of honey and it will be a shot in the butt - make sure they warm it up first and try and keep track of which cheek - you will want to stand with the weight off of the side you are getting the shot in and so far, after 3 injections, I have had no real injection site issues at all.
Best to you...LowRider
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hi ive been fighting breast cancer for 10 years now. im taking femara but now a ct scan has revealed that the breast cancer has spread to the outside of my bowels. they call it periotineal mets. anyone had this and what have they done?
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I was put on Femara after second bout with mets in 2008. Still on it I hope it is still working as tumor markers are gradually increasing to high 30's, although nothing seen on a recent Pet/CT (Thank you God!). Femara side effects not bad at first but have gradually worsened, Mainly pain in legs in feet. In AM can barely walk. Also weight gain.
Was on Tamox after initial diagnosis - hated it - had severe hair loss, and quit using it.
Anyone here on Femara more than 2 years? Bone pain side effects?
Lisa DX stage 4 2005, ER/PR+ , Her2 -
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I have been on Femara for a year or so - i was on Tamoxifne for 7 years from 1991 - both are/were devlish to my poor bones joints muscles nerve pains headaches nose bone pain - bleary eyes, extreme fatigue etc etc - but they worked. The one thing that I changed when I went on Femara. I take it first thing in the morning and eat with it. I am not gettting the ulcers I got taking tamoxifen at night. So that is a blessing. I have lots of side efffects and am also on Zometa and have many side effects, but I am chasing that Stable boy - so it is worth it to me. I am E<4% P- and Her- So lucky for the Femara to work. I insisted on it in pref to chemo. I use herbs etc to help me cope with the SEs and one to encourage the Femara to work better.
Linda
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Hi, I have been on femera for 4years and my cancer has remained controlled. Im also having herceptin every 3 weeks also. I have developed osteophorosis and stess fractures but its okay as long as its still working. The weight gain has been awful but you adjust to it, I hope this has been helpful. All the best.
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I am no longer doing hormonal treatments since they stopped working for me, but I got great results with them for almost 10 yrs so have nothing, but good things to say about them. I still pop in on this thread just to see how everyone is doing and if by chance they ever come out with something new that I have not yet tried. According to the test they ran early this year, I do still have estrogen in my system which I find pretty amazing so maybe if there was something new, my onco would again consider trying it. I have a question for you ladies who suffer from stress fractures and osteoporosis......aren't you getting zometa or aredia? Don't they just automatically put you on one of those when you have bone mets to strengthen the bones? I still get zometa, but now only every other month since all the talk about osteonecrosis got me sort or worried and i recalled at one time my onco had made a statement sort of implying that I had already had enough to last me a lifetime......so it was I who asked if we could do it every other month. I did faslodex for over two years and never had any problem with it.....recall they would always rotate the hip they were shooting and found that some nurses are MUCH better at giving injections than others, but I have lots of padding back there so it was never something that caused me much discomfort.
I don't see where many of you do aromasin. Is there a reason for this? I know you should be post menopausal for it, but for me that was the one that got the most dramatic results and kept me in remission for quite a few years.
Good luck to each and every one of you. I think we have a huge advantage being ER PR + since it gives you that many more treatment options to try.......there are not many +s that go along with this disease so we have to be thankful for the few there are,
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Ive been on femara for a year and i dont have any side effects from it. my breast cancer has spread to the outside of my bowels. they call it periotineal mets. im not sure what they are gonna do for me but they told me this is it for me. ive taken xeloda and ive been on all the hormone treatment and had the chemo and radiation and nothing is working for me anymore. i have severe pains in my stomach and vomit with daily headaches. life is so miserable right now. im 39 and have a 16year old daughter who i thought i would see graduate high school. i was 30 when i was first got breast cancer. ive had both breast removed with tram flap reconstruction. i also had a hysterectomy.
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