Hormonal Treatment for Stage IV
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Sharon,
Do you have a link to something official looking? I had Faslodex No 6 today, but hadn't read this before I left. This would make for a very expensive treatment day wouldn't it! But as they say, "I am worth it."
*susan*
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Susan...I don't at the moment but I will surely be getting the 'low down' info today at treatment and will share as soon as I know. And I agree, if the stuff works - yep, we are all worth it!
I am actually looking forward to going to treatment today...how weird is that?
Hugs and Happy Friday!
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Hi Susan and all....it wasn't so bad - I had a new nurse but we talked about the shots while I was gettinghooked up for the infusion - apparently I was the first one at my clinic to get the new double dose so it was new to everyone - she wrapped the two in one of those wonderful warm blankies and it was easier for her to inject...and I did my best to get the weight off and she did do the 'pinch' - very little injection site difficulty - it went in pretty easy and warm (yea). It did feel a little funny having both cheeks but it is done toward the upper side of the butt so sitting was no issue. No additional se's - I feel empowered! Double dose is going to stop this crap in its tracks! I love my onc...to get a call in the early evening just 2 days before to let me know I was getting the new double dose tells me that he really does pay attention and stays on top of things and I don't feel like just another patient going through the 'system'. I had confidence in my care before - this surely spoke volumns that I really am a person and my treatment team sees me that way!
Anyway, the press release came out on September 10th and the stats are pretty significant. You can go to Faslodex.com and click on the For Health Care Professionals and midway down the page is the press release in case this link doesn't work (I had a heck of a time getting it to paste here). http://astrazeneca-us.com/about-astrazeneca-us/newsroom/all/9840929?itemId=9840929 I was a little off on the stats but it is significant - the 500mg dose lessened the chance of progression by 20% over the existing 250mg dose. The Phase III study was done soley on the comparison of the dosage. FASLODEX 500mg significantly increased median progression free survival to 6.5 months vs. 5.4 months with 250mg.
Best wishes and Hugs to All!
LowRider
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I'm a newbie here too. This site is so uplifting - thanks everyone for making me smile! The whole pink October thing is getting on my nerves. I was diagnosed in Dec. 09 with stage IV, mets to spine. Had a mastectomy a couple of weeks later in January '10, 38 radiation treatments, a hysterectomy in April '10 (to make me post-menopausal), and now I'm on arimidex and monthly zometa. My first zometa infusion landed me in the ER (high fever, a headache like no other, joint pain, shaking chills, vomiting). Every infusion after that has gotten WAY better - just a little nausea and aches that they give me meds to control (zofran and percocet). My tumor markers are way down and I'll be re-scanned later this month to check the bone mets. My onc says there are a lot of mets, but I feel no pain. Not sure what to make of that. I feel great physically, am back to work full-time, and praying the scans are stable so I can dodge the chemo bullet. Now I'm working on a referral to a plastic surgeon to talk about reconstruction. I don't know how long I have, but dammit, I'm going to go out looking good!
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Hi alex56...welcome to the slow boat that seems to roll up and down like a rollercoaster - when it comes to support - this is the place, I honestly thank the Lord and the angels everyday for guiding me here. I too have been able to dodge the chemo bullet so far and was dx'd with bone mets in Sept 09 so we are pretty much on the same time frame. I thought I had lost my mind after the first Aredia (and I wish I had a video of myself and my poor dog - thinking back, it would have made viral on youtube in no time...lol)
I didn't have my reconstruction completed 11 some years ago because of complications and I just did in the midst of all the testing back in Sept - wow...I did a reduction as there was no time to make a bigger 'pocket' so I have 2 perky B cups and I don't miss the D's one bit - shirts button and I can actually go braless! Woo Hoo.
Where do you live? My plastic surgeon was excellent and even with the complications, mine on the East Coast was excellent as well so if you are anywhere near Minneapolis or Philadelphia, I can give you a good recommendation...let me know!
I get scanned in November and will be sure to let you know how I make out!
Hugs...LowRider
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I live in Maine and have been recommended to a plastic surgeon a couple of hours away. I hear from other folks in our situation that he is fantastic, so I can't wait. We'll probably need to do a reduction on one side and then build the other. I love all my docs up here and my community has been unbelievable. You wouldn't believe the food that showed up at our house after my surgeries. Anyway, having bc sucks, but finding out who your friends are is priceless.
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Hello Ladies! I have not had any Hormonal Treatment for a year and a half due to the Her2 clincal trial I was in, now I am back. I have been on Tamox., Femara and Faslodex with little to no side effects. I will take my first dose of Aromasin Friday when I pick up my RX, I am nervous because I have not found much info on here regarding this drug and it's side effects. If any of you have taken have taken Aromasin and could give me some info on this, I would appreciate it.
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Hi Everyone, I'm looking for some advice. My Onc changed my tamoxofin to generic Ameridex end of July. I had scans end of Sept which showed more progression of bone mets. My tumor markers have been steadily increasing several 100 pts since my change in hormonal treatment. My doctor suggests to wait until Nov to test tumor markers again and then make a change in treatment if they are still rising. His recommended change is chemo. But I hear you all talking about Femera or Faslodex as another option. I wonder why he wouldn't suggest them instead of the chemo. He also stated that sometimes tumor markers go up before they go down when on a new hormone. Please let me know what you think. Thanks for your help.
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Hi Maureen...I can only take a guess at why the chemo...when Arimidex failed me, there were areas of complete resolution, some shrinkage but one lesion that progressed. My onc wants zero progression so I was switched to the Faslodex and now I am getting the double shot. I have scans in November so we shall see if it has had any effect on the one stubborn lesion. My guess would be since they are discussing chemo, did you have no resolution or shrinkage and only progression? That would seem to indicate that the hormonals are not working for you - and I am so sorry if that is the case. With the rise in the TM's as well - that would be my somewhat 'semi-educated guess'. Then again, you could be having flares which do happen and things rise and progress - waiting until the next tests would make sense and if things have dropped, he may well recommend another anti-hormonal. Again, my guess would be Faslodex as it isn't an 'aromatose inhibitor' but a 'antagonistic binding agent' - what does that mean....hell if I know! In layperson terms - one inhibits the estrogen while the other acts like 'armor' and surrounds it.
Depending on my scans, if pretty much the same as before and the one stubborn lesion is still not responding but all else is - we are discussing hitting that area with some rads. Since I am getting some stability from the hormonals, the onc is holding back on the chemo until we really need it. Then again...everything could go into the shitter if the scans come back with the crap running amuck - then it will be chemo for sure.
That is the really f*** up part of this crap - you just don't know. Geez, I am only a baby in this mets world - how do you folks keep going? Kinda not looking for an answer to that - ya just do.
Hugs all and don't forget our special day...October 13th is National Metastatic Breast Cancer Awareness Day - yep, we have our very own day in the midst of the the Pink!
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Hi Lo thanks for your input. I was dx around same time as you. My recent scans had some stability and some progression. My issue with faslodex is you have to be post meno-How old are you? I am 48 and was pre men upon dx. But with the drugs it forced me into meno. I will ask about taking out my ovaries. Yes, this sucks its life changing. Sorry you are going through this too. But it sounds like hormones are working for you with that exception on your liver. Did you ever do chemo? I was so sick and almost hospitalized again. I spent 3 weeks in hos when dx. The gave me so many pain meds I was completely out of it and sleeping all the time, slurring and having visions of things not really there. Then they started me on chemo right away. Maybe since I am better and not in as much pain or drugged out I would handle it easier. I did not realize Oct 13th is our day. Like we really want to celebrate this. Hugs to all who have to struggle with cancer and may they find a cure soon.
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I was on Femara for nearly 4 years and it seemed to be doing its job, but I was taken off last March when I developed Osteoporsis in some of my major bones. In July a lump popped up under my arm...as soon as I discovered it I started taking Femara again. There was surgery to remove the lump..but pretty sloppy surgery with unclean margins and some tumor remaining. Then my new oncologist put me on Aromasin. Immediately my tumor markers started to rise, from 38, to 60, then 97. I had spots on my liver and my liver enzymes which had originally been normal despite the spots starting tripling and quadrupling.
We decided that anti-hormonals were no longer an option with everything progessing so rapidly. I am now on Taxol/Avastin until cancer in my liver and lungs is stabilized or NED. Then the idea is to try to go back on hormonals.
Have any of you had the experience with one anti-hormonal didn't work but another did?
Also, I definitely am spooked out by Aromasin, it seem as though it flipped a switch or something, either that or the surgery.
Bo
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Bo - I don't have an answer to your question about hormone therapies, but I wish you the very best on Taxol/Avastin and hope you can find a hormone tx that works for you for "maintenance" once the chemo/avastin kicks some cancer butt.
I had a question for you gals (forgive me...this is so trivial), does anyone have fat fingers while on Femara? I have lost a few pounds the past few months, but my fingers are like sausages and I can barely take my wedding ring on/off. Usually when I lose a few pounds, my rings get loose on my fingers, so I'm wondering if Femara is to blame. Obviously, this is not a big deal, I was just curious.
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Nancy, I have been on femara for a while and my fingers are okay. No sausage fingers.
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Nancy, Femara affects the bones and the joints, and as you get older and more arthritic and joints can well...I don't know if it's just your joints that got larger or your whole finger. I had a lot of problems with my wedding ring too..
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BURNING QUESTION: Has ANYBODY been on one kind one kind of hormonal treatment that STOPPED WORKING and then switched to another than did? The doctors all talk about this but I've never heard of it happening.
If so, what worked and what didn't?
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Hi Bopeep,
I wonder the same thing you do, about a second hormonal working when the first failed. I've been on Femara for 21 months (my first treatment after mets), and am currently showing NED. When I first began treatment, my onc named off a number of other AI's that we could try if the Femara failed. About 8 other AI's. I'm menopausal. So, that gave me hope. But, seems like on this board that most of us ER+'s haven't tried more than 2 hormonals before there was more progression. Chemo seemed to be the treatment of choice after that. Most seem to try Femara, then Arimidex or Aromasin, then Faslodex, before chemo. Does anyone have more positive news to tell us, prior to resorting to chemo?
Lane
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NancyH,
I've always had a problem with water retention, and I think the Femara has made that worse. Last week I couldn't get my ring on, but only for a day. I forced myself to drink lots of water, took a couple of B6's, and was able to lose that extra fluid. It's a continual effort for me to drink more fluids. I just don't get thirsty! When I retain water, though, it seems like it's "all over." Not just in my hands or feet. I know that forcing the fluids helps for me.
Lane
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Hi, LowRider,
I hope the Faslodex works for you and that you have clear scans in Nov. I agree with you. How do so many women keep going? I've had it so easy so far - one drug, and have been with NED from about the 4th month. I know the sh!t's going to hit the fan one of these days. Trying not to think of that time, doing as much as I can right now to enjoy NED, but still.......... I really am not sure I will try chemo when the time comes. Maybe that's easy to say now. But, good luck with your treatment, and to all the mets gals out there!
Lane
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Bo - Well, I will find out next month if the move from one hormonal to another is going to work.
Lane, I always said after being so sick from chemo years ago that I would never do it again. I could be faced with that option next month - and I am not going to think about it until the day I have to....for now, the Faslodex is working (I have convinced myself) and I am going to do a little floating in D'Nile until the 24th of November. It is all still in my bones so no progression to any organs - I really am hoping that the Faslodex is the long run. The onc is talking about hitting the one stubborn lesion with rads first as it is the only the one lesion that is not responding.
mohonda - I am 56 and chemo 11 years ago put me into pre-mature menopause. I did not have my ovaries removed but they are so tiny (they could hardly find them on the ultra sound) that I can't imagine they are producing much of anything...lol.
Hugs all!
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Tamoxifen stopped working for me and I then went to aromasin which did wonders for me....then I moved on to Faslodex and stayed on that even though the CA27/29 was going up because the scans were stable. Didn't do chemo until we saw new mets and when I asked my onco why I was still doing faslodex with the chemo he said because he was afraid to have me stop it since I did still have estogen. I don't know what classes those fall in to/ aromatase inhibitors, estrogen blockers or what and really guess I never cared enough to find out, am basically just checking on SEs when I investigate these drugs. All I can say about any of them is that even if I did get some joint aches and pains and gained weight on a few of them, they were a LOT easier than chemo.
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I am kind of spooked about switching from one AI to another. I'd like to hear some good stories.
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But they are all different Bopeep and usually they can tell if something is working or not within three months. My cancer has always been slow growing so I guess I am lucky in that respect and so far even though I have had progression it is not really life threatening YET....of course it is left untreated.
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I don't feel quite so comfortable about this. My cancer is one of the most aggressive, it got a 9 on the Nottingham score and was at the top end of the oncotypes. I can have a lot of progression in two weeks. While "trying" aromasin it only took a little over a month for cancer to go from just a few faint spots on my liver to innumerable lesions on my liver plus cancer in lower lungs...my liver enzymes went from normal to quadruple the highest normal value.0
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Lowrider...our cancers are all different and I hope for you Faslodex is the magic bullett!! I'll be prayering for you. It would also encourage me a lot.
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Bo...as I hope the same for you and your new treatment team! And yes, that is the real bummer about this crap - it IS all different...how on earth can the researchers come up with a cure that is going to work for all of us....although, if they find one...it could very well open the way for them all!
Here's to magic bullett's!
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Hi All - I just wanted to chime in. I was diagnosed 2 weeks after my 34th b-day in March 2006, I had numerous spots on my lungs but my original Onc. did not order a biopsy, he thought that we should treat them as mets and go straight to chemo (A/C, Taxol, Herceptin for Her2 and 36 rounds of radiation). I had NED after that & was on Tamox. till January 2007 then I had my ovaries removed, my wonderful Gyno said I "had big juicy ovaries that were producing lots of estrogen" (sorry, for some reason her description makes me chuckle a little bit) and then went Femara till, I think May of 2008, I had some more spots show up then went on Faslodex & Herceptin again, they grew a little more and I went on a Her2 trial for over a year with no Estrogen treatment, they did get smaller but now they are where they were when I started. I just took my first Aromasin today and I hope I can get at the very least another year after that, my Onc. said if it does not work, we will probably have to go back to chemo... Jeez, sorry to be so wordy but I wanted to tell you to try to keep an open mind about it, this next treatment could work for several years and I pray that it does for all.
P.S. What the heck is the Nottingham Scale? Is this something new? I have never heard of this before.
P.S.S. Marybe, I am wired for sound today.. Do you think this is from the steroids in the Aromasin?
Love & hugs to you all.
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Thanks for the encouragement Vicki...that is what I have believed but lately, there seems to be so many that are failing on the hormonals it had me a bit concerned. Open mind it is!
So, until my scans on 11/22, I am floating down D'Nile (I now get this one...lol) and will NOT go into scanxiety mode until then and thankfully, I see the onc on the 24th so it will be a short visit with scanxiety this time around.
Hugs to all...Low
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D'Nile is lovely, I spend most of my time there
Believe me, I HATE scan time and the morbid thoughts that take over my brain from time to time but I let myself freak out and hope the next day I will feel better.. I usually do but it has been really hard lately because we have lost so many of our sisters. I have thought about them over the last few days and I KNOW they would want us to go on and do what we have to do to keep going and doing our best to kick cancer in the a$$.. 0 -
Lowridr,like you i get concerned allthe time since i have on;y done the ooph and femera and zometa (mets to liver and t10 t12) i was no hopeful , but my scan showed regression on all lesions after 3 months, so i am thrilled and hope i an ride this for a long time
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I had my monthly appointment with my onc today. I'm still NED, on Femara and Zometa for 20 months now. No other AI's. I asked him what he thought the next course of action would be when the Femara stops working. He said he'd most likely stop the Femara for a few weeks or months, then start me on a different AI. He thinks this seems to work, that the cells adapt to the lack of estrogen, acquire resistance and start growing again, but can sometimes once again be suppressed by an AI. I had read that before, and found this info. Interesting. Anyone else discussed this with their doc? This makes sense to me, that a second AI immediately after a first which works in a similar manner might not work any better. Has anyone used this different approach? My doc says he has seen it work.
"Stopping Treatment Can Reverse Acquired Resistance to Letrozole"
Using the intratumoral aromatase xenograft model, we have observed that despite long-lasting growth inhibition, tumors eventually begin to grow during continued letrozole treatment.
In cells isolated from these long-term letrozole-treated tumors (LTLT-Ca), estrogen receptor- (ER ) levels were decreased, whereas signaling proteins in the mitogen-activated protein kinase cascade were up-regulated along with human epidermal growth factor receptor 2 (Her-2). In the current study, we evaluated the effect of discontinuing letrozole treatment on the growth of letrozole-resistant cells and tumors.
The cells formed tumors equally well in the absence or presence of letrozole and had similar growth rates. After treatment was discontinued for 6 weeks, letrozole was administered again. Marked tumor regression was observed with this second course of letrozole treatment.
Similarly, in MCF-7Ca xenografts, a 6-week break in letrozole treatment prolonged the responsiveness of the tumors to letrozole. To understand the mechanisms of this effect, LTLT-Ca cells were cultured in the absence of letrozole for 16 weeks.
The resulting cell line (RLT-Ca) exhibited properties similar to MCF-7Ca cells. The cell growth was inhibited by letrozole and stimulated by estradiol. The expression of phosphorylated mitogen-activated protein kinase (MAPK) was reduced and ER and aromatase levels increased compared with LTLT-Ca cells and were similar to levels in MCF-7Ca cells.
These results indicate that discontinuing treatment can reverse letrozole resistance. This could be a beneficial strategy to prolong responsiveness to aromatase inhibitors for patients with breast cancer. [Cancer Res 2008;68(12):4518-24]
Gauri J. Sabnis1, Luciana F. Macedo1, Olga Goloubeva2, Adam Schayowitz1 and Angela M.H. Brodie1,2
1 Department of Pharmacology and Experimental Therapeutics, University of Maryland School of Medicine and 2 University of Maryland Greenebaum Cancer Center, Baltimore, Maryland .
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