Hormonal Treatment for Stage IV
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To all of you waiting for results, sending positive thoughts. I've been putting off my pet scans until the new year. In the meantime I've gotten info from the Internet on the new machine they've installed. I'm claustrophobic so it's reassuring to learn that a full body scan will only take 5 minutes now. Lulubee, I can't imagine what you must have gone through! I prefer the radiation exposure to being cooped up. As for Xgeva, I've heard some folks here say they did not have side effects.
Elizabeth, I was told once that if femara were to stop working, I would go on to Faslodex. Actually I am on Arimidex now. My onc thought it would be good to rotate my meds to give me a break from femara side effects after almost 4 years (or to stop me from complaining about them). I have another 10 days before I go back to femara. I had a one-month break. There are new meds on the horizon, however, which could give us more options if we can stall progression long enough. I'm thinking of Afinitor as one.0 -
I've been hearing a lot about Afinitor and would be interested in hearing if and when anyone starts it. I have my six month checkup in two weeks and will ask my doc what he thinks of it and the possibility of me using it later.
Elizabeth I have done Arimidex and am now on Femara and have been told I will be on it until I have progression. I also have been told that I will go through the AIs before hitting the hard stuff and I am just fine with that.
Love n hugs. Chrissy0 -
My onc told me this week that there was quite a bit of talk at ASCO this past month about the Aromasin+Afinitor combo. She said it's "not quite ready for prime time" which I presume means it's still working through the approval pipeline, but she said it should be available to us soon. She seemed quite enthused about it.
Heidi, next time I need an MRI, I'm coming to see you. FIVE MINUTES? Holy cow.
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Suzzane in on this board; she wrote about going to MD Anderson this past summer. She went thru AIs and then did I think 4 chemos in 2 years, so this Afinitor has been awesome.
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Anyone taking Fulvestrant or Faslodex?How long, side effects? I'm 63 years young, Breast cancer mastectomy age 45, lymph node involvment. Did Chemo and Radiation came back age 50 mets to bones hip, spine and sholder. Been on Armedix for 13 years. Hip starting hurting with a limp. Now Bone scan shows mets to Skull, ribs, pelvis, spine, hips and many other various bones even my feet.Had a Pet scan, thank God it's not in the soft tissue!
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Hi Nanaskids and welcome. Haven't been on that but I do know there is a thread or two on Faslodex. The best way to find it is to do a search. At the top right of the page just type in Faslodex and it will bring up all that has been written on it. Also, in the main area of BCO, there is a whole section on the different drugs and their side effects. Just click on Treatment and Side effects at the very top of the page.
Sure hope this helps and once again welcome. Pop in often and let us know how you are doing.
Love n hugs. Chrissy
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Hi, all, a little background. Arimidex bought me 2 years of peace after full treatment for Stage IIIB, then that failed and I became Stage IV. Faslodex has bought me 1.5 years with only "mild progression". Now my onc wants to give Tamoxifen a swing before resorting to chemo. Has anyone else had this trajectory, and how did it turn out? Was the Tamoxifen effective for a while and if so, how long?
Thank you!
Calico
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Hi Calico, the only time I had Tamoxifen was at the beginning and I found that I'm actually allergic to it so no more for me, ever! I have read on various threads here that some girls have done the Tamoxifen thing after failing the AI's but I don't know what success they had. I know there are a few Tamoxifen threads on here so maybe doing a search will give you a bit more information. Just type the word into the seach line at the top of the page. Good luck!
Love n hugs. Chrissy
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Both my once have told me to exhaust all ai's before moving on to chemo.
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Hi, Chrissy and Frapp, thanks so much for your replies! Chrissy, what was your allergic reaction? When I was on chemo, I had a bad reaction to the Leukine shots (heart rate went way up - scary!), so they switched me to Neupogen, and that didn't do that to me.
Calico
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Calico, T put me in hospital with a suspected heart attack......I was only on it for two weeks! Apparently that is a very, very rare SE. There were others as well that were off the chart but that was the major one and the one that put me right off taking it again. It is now on my medical chart as an allergic reaction.
The docs are pretty good at watching for adverse effects when it comes to a lot of these drugs and anything to do with the heart they are onto very quickly. I'm glad they reacted quickly for you when you were having your chemo.
Love n hugs. Chrissy
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Oh, geez! Bad news! Ya' just never know! I had a "minor heart attack" 11 years ago, and that was no fun. No blocked arteries and all they could figure is I had spasm in a little vessel. Anyway, thanks for the info!
In my case, with the Leukine, I was VERY DISAPPOINTED in the onc's on-site pharmacist's reaction when I told him what was happening with the Leukine. He'd never heard of it before and just tried to humor me. The onc was out of town and I put my foot down with his assistant nurse practitioner, who switched me to the Neupogen. No more problems!
Calico
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Yeah, unfortunately, sometimes we need to dig our heels in as some docs don't believe we know what is going on in our bodies......maybe they think they are psychic? I must admit, those sort are very much in the minority that I've come across so that is a really good thing.
Love n hugs. Chrissy
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Nanaskids,
I found a thread on Faslodex that had kind of died and is now back to life. I think you might find it on the next page if not the first one. It is called Faslodex Girls - come joint us. Lots of us are just starting this treatment.
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Naniam... looks like I'm on my way over to that forum, too.
I just got my MRI results. (Recap: I had a PET on 12/21, got the results 12/28... it looked like slight progression in a couple of my extensive bone mets, but she ordered an MRI for confirmation. Had that scan last Friday night and have been waaaaaiting-waaaaaiting-waaaaating for the results. Why are my scans always right before a holiday???)
The MRI confirmed slight progression in those lesions. She is going to show me the scans in the morning... she says I have tiny spots in every single vertebral body and all pelvic bones. YOWZER. But I think it's been that way from the mets get-go a year ago... will ask, definitely. Definitely. Still no soft tissue involvement. Yay for that at least!
Here's the new treatment plan: Because of some Phase III trial results presented at ASCO last month, she is going to keep me on Femara and add Faslodex. I will also continue on Xgeva. So I'm going from one drug to three, just like that. Haaaaappy New Year! :-P Seriously, I'm thankful we at least have these three drugs.
I get my first double shot of Faslodex in the morning, and another one in two weeks, then we'll go to monthly shots. So I'll be joining all you double-cheeker chicks in the Faslodex forum shortly...
The Xgeva shot on Tuesday gave me a little 36-hour wave of flu-like aches and fatigue. I'm better today although my hands still hurt a bit more than usual. But definitely doable.
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Chrssyb, I received my Afinitor prescription today. 10mg one per day like the study Already have the Aromasin. The plan is to start taking it Sunday evening so If I react at least all Dr offices will be open and ready to go Monday.
I have to say I feel a bit alone heading out on this new path. I would start some separate thread to track my experience. Where would that least likely get lost I wonder?
I suppose the only real angst I have is whether this is as aggressive as I should be at this point? I keep reading about NED's that i haven't achieved on hormonals and wonder if I'm being too conservative. Another philosophical discussion for me and the onc.
AFINITOR!! Sounds like a war charge of some sort! Into the fray once more!0 -
Chickadee, please keep us informed on your Afinitor experience! I suspect I will be coming along beside you eventually (maybe sooner than later now that Femara is fritzing on me a little bit) because my onc is obviously very eager to add the Afinitor+Aromasin weapon to her arsenal soon.
I would say keep your comments here on this thread for a while until a few more people start popping up with Afinitor scripts... I think you'll know when it's time for a separate thread. But in the meantime, the rest of us here will benefit from keeping up with your experience with it.
I hope it's your magic bullet, baby!!!
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"Double-Cheeker Chicks"!!!!!!!! Great (& hilarious) nick-name for us!
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Aerial - I love it "Double Cheek Chicks" - that is good !
Lulubee, hope the Faslodex works really well for you.
Chickadee, think you are the first one I remember on the Afinitor - still trying to remember who is who here. Sure am wishing the best of results with this new regimen. Will be checking in to see how you are doing.
Brenda
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Chick, thanks for the info and I agree with the others, keep your tracking here until there are a few more on the same regime. It will be interesting to see how you respond to it in combination with the Aromasin. Please let us know of your progress with any se's that you feel.
Aerial check on the 'Doublr Cheek Chicks' got a good giggle from that.
Lulu, sure hope the new combination gets you to NED with few or no se's.
I'm still on just Femara and so far so good but I have a check up next Wednesday and there are a few issues I need to bring up so I'm hoping it's still doing what it should. Oh well, it is what it is.
Love n hugs. Chrissy
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My onc decided today to take me off Femara and just go with Faslodex and Xgeva for awhile. She wants to put me on Afinitor as soon as she can (said she is wrangling with insurance companies daily), and said she'd like a "clean AI slate" for me to start off with that.
I may be shortsighted and ridiculous about this, but I am pretty jazzed about getting off the stuff. Wonder how long until I can play the piano comfortably again?
Just got my first double-cheeker Faslodex shots an hour ago. Not too bad so far. We'll see how the afternoon goes.
Hmmm, don't know if I still belong in this Forum now. Faslodex is not an AI... so is it considered hormonal treatment? On the other hand, I am still being treated for hormone-sensitive cancer...
I must say that seeing my MRI scans was sobering. I've always just read the reports before, but this morning I actually saw my poor marbled spine glowing on a screen. Wow. I have mets in every single bone in my spine and pelvis. I knew it was widespread, but boy howdy, seeing is believing.
I think I'll go outside and plant some kale and pansies this afternoon. Kale for the bones, pansies for the spirit.
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Guess I can post here as I'm back on Femara. I'm going a clinical trial with Femara and BKM120 which is a P13K kinase inhibitor. It's a biological drug that cust off the blood supply to the cancer cells and is suppose to cause death to them. Here's to killing cancer cell!!!! If this doesn't work I'll be jumping on the afinitor bandwagon as I have found that my insurance will pay for it.
I had to be off all drugs for a month before going on the trial. Talk about scary. I could see changes happening in my breast, especially this last week. Scans didn't look so hot either. New mets in ribs and spine. Its moved up from lumbar into thorasic area. 4 spots were seen in liver but they were too small to confirm as cancer. THAT WAS REALLY SCARY!! Almost hoping they are still there on next scan, that way it will prove they were not cancer. Trying to put that one right out of my head.
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Faslodex is more like Tamoxifen. It acts on estrogen receptors, reducing their numbers. It is a hormonal treatment. Hope you can get Afinitor, Lulubee. Good luck on the trial, Frapp! Hope you get results quickly to make up for the lost time!
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Calicocat, I am currently on Tamoxifen since June 2011 and had a recent CT scan showing me stable as of Nov 29th! I originally did 2 1/2 yrs of Femara, had progression to R hip L4,5 and liver so went to chemo. Did 3 chemo's(Allergic to Taxol) so dont know if 2 months of that counted and after 14 months became stable so now doing the Tamoxifen. See my onc this coming thursday for bloodwork results and checkup plus my Zometa tmt that I do every other month. Hope to have a long run with Tamoxifen. Dawn
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Hi, China, that's interesting that you went from chemo to Tamoxifen. I wonder if they go back and forth a lot. Thanks for the info and seeing you having great results with Tamoxifen!
Calico
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Month 21 on Faslodex and still no evidence of disease. Now that I have been off the aromasin for three months, it is clear that I have one side effect from Faslodex. The day after the injection, I am just plain tired. So onto the calendar that goes "2pm Friday Nap" so I don't schedule real life.
Feeling really lucky that this treatment is working so well for me.
*susan*
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Great news Susan. Long may it continue to work for you!
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I am more of a lurker than a poster and I have received a wealth of information on this site for which I am very grateful and therefore would love to share my great news with all of you.
I was dx'd stage 4 in November 2010 with extensive bone mets all over the place, a large amount of lymph node involvement and cancer on my intraperitoneal of abdomen. It was found through biopsies that I have two different types of breast cancer one being lobular which I previously had in 2001. The other cancer is ductal.
After an endless myriad of tests, my onc put me on Arimidex and Xgeva on 12/01/11. I had a PET scan 1/06/12 and saw my onc on the 11th and found out I am in a COMPLETE REMISSION! All this in only one years time!
I'm not cured but ALL the cancer is gone with the exception of micro-metastases which cannot be detected on a PET scan. My onc told me the cancer could come back in 2-3 years, or never again. Of course I'm hoping it never comes back but will gladly take whatever I can get! I will continue on the Arimidex and Xgeva along with monthly lab tests and have another Pet Scan in June.
I want to thank all of my wonderful breast cancer sisters for allowing me to share this wonderful news with you. For me Arimidex has been a miracle! Barbara
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Barbara,
Almost feels like a miracle doesn't it? So good to hear your story. All the best,
*susan*
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Thats wonderful news Barbara. The best of luck to you. I just started arimidex last month I can only hope that I will achieve NED for awhile.
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