Hormonal Treatment for Stage IV
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Hi,
Sorry that you're joining us. I do not have lung mets, but bone mets. I am almost 3 years NED on Arimidex, and rads to my femur. That's it, no chemo ever. With bc, hitting it with everything but the kitchen sink, is not always the best plan of action and doctors have no consensus on what's the best way to go. I understand what you're saying about palliative care, but the reality, and forgive me for being blunt, is complete cure only happens for a minuscule number of us and no one really knows how or why those folks achieve it. I'm saving chemo for the time after I've exhausted all the AI's. There have been studies that indicate that chemo may be more effective for the chemo naive. Anyway, I'm sure you will hear from some who went with more aggressive tx. There simply is no single path. For the record, I work full time, travel and lead a very normal life, other than tiring more easily. I also have a grade 1 cancer and am almost 58, so that makes my situation different from yours. You should fill in your dx line if you have a moment. Take care.
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gah, I understand your frustration. I spent the better part of six months wondering when someone was going to tell me "the plan" and I totally believed that I would find the "new normal." What I've found instead is lots of wonderful people willing to share their knowledge & support in this Club where no two paths are the same! I agree with everything brnxgrl says. I'm saving chemo till the AIs are exhausted if at all possible. I do take pain meds, more than I have reconciled myself to in a way BUT they make it possible for me to do pretty much everything I want. I just can't do it as long as I could. I take naps now, but I've always loved a good nap! I've been on Arimidex for over three years with great success. I'm now facing a probable switch because of a little new activity.
I have been excited in recent conversations with my MO to hear that there is some new, amazing stuff coming in metastatic breast treatment. Studies & trials evolving the immune system and pathways that deliver growth messages to cancer cells. While these aren't a cure, they may offer great options to turn this into a chronic disease with hopes of long-term management.
I hope you find as much wonderful sound support as I have on these pages. They have added some calm that I was beginning to think I'd lost!
Virginia
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In most cases, AI's are first line of treatment for bc women with ER+ hormonal status. I had an aggressive inflammatory bc which required chemo first. I'm almost 5 years out and was stable for 4 years on Femera.
I hope this works for you. My onc says he has one patient who has been on faslodex for 7 years. In most cases, this drug is not known to work that long. We are still individuals & will have different results.
Best to you on your treatment.
Terri
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Hi...I am new to this site. I have been looking through past posts for the answer to my question but didn't see anything...just hoping for some thoughts/support. Has anyone heard of/experienced bc responding to different hormone therapies differently? I was originally diagnosed in 2009 - Stage 1 - ER+/PR-//Her 2-. Lumpectomy and radiation only - no chemo recommended. Re-diagnosed in Oct 2012 with mets to bones (throughout my entire spine, pelvis, etc) and liver - this time ER+/PR- and Her 2+. Radiation followed by chemo with Herceptin, and now on Herceptin/Perjeta every 3 weeks. Also Lupron injections every three months. (I put all of this in the "diagnosis" of my profile but I think I did it wrong) I started out on Arimidex last spring - was having severe leg stiffness and joint pain so switched to Aromosin last November - same thing. During this time tumor markers were in normal range and PET scans showed cancer stable. Onc recommended Faslodex a few months ago because she said no SE. Started Faslodex in March and since then tumor markers steadily climbing.....yesterday was at 42. Nurse reassured me that it could be a "blip" and everything could be fine, but I am wondering if maybe I responded better to the first two that the Faslodex? (which, by the way, didn't ease my side effects.) ANYWAY, I am freaking out and have a scan scheduled for the end of the month, but I have been following several threads on this site and finally thought I'd jump in and join. Any feedback is appreciated!
Thank you.
Andrea
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Andrea, it is scary when you don't know what's happening in there, isn't it?
As I understand it, you can definatley have different responses to different hormone therapies. I asked something similar here and to my onc when I first started with Faslodex because I had been on Tamoxifen for a year and progressed to stage IV during that time, and the unanimous answer was that it can and does happen.
But, because you did have success with the AI's and didn't fail out of them, it sounds like those might still be an option for you to go back to if the Faslodex isn't doing what it should. Then again, you'll see lots of discussion about how unreliable tumor markers can be, so that's another part to consider.
Wishing you well with everything, it's so hard not to worry, but hopefully Faslodex will work like a champ for you.
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Andrea,
There is nothing more frightening than watching those numbers climb or tumors grow. I have only been on Arimidex, for over three years now so I don't have much to offer in terms of similarity of SEs. My MO has said that how you respond to one is often indicative of how you will respond to others. I'm sure one of our sisters here will chime in with her experiences. I just wanted to offer my support and the hope that you might be less anxious in the coming days.
Virginia
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Andrea, your body may be taking more time to respond and/or it could be a blip. There is a thread for "Faslodex Girls" and you may want to post your question there.
https://community.breastcancer.org/forum/8/topic/816419
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Thank you all for your kind words of advice and support. I did post a question on Faslodex Girls, so I will see if they have some words of reassurance.
RosesToses - love your blog....very inspirational! Sounds like we have some things in common - although I am a couple years older than you.
Thank you again! I am just going to try to stay as busy as possible until the PET scan and then the results. Ugh.
Andrea
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Andrea.. we all know that feeling.. I'm waiting for scans pelvic and bone. Now that I'm newly stage 4 they won't even treat me till they get the scans. Waiting is the worst! Take my hand and we will wait together sister! And best of luck!0 -
Gah,
I'm so sorry to welcome you to the club no one wants to join, but the ladies on these boards are wonderful. When I was diagnosed in 2009, my lung mets looked like someone had shot silly string throughout them. I had to go on oxygen. I had chemo which reduced all my lung tumors, and have been on Tamoxifen for over 4 years. Those little Tamoxifen pills don't look like much, but they've been keeping me relatively healthy. My lung & bone mets are stable, and I live a pretty normal life. I hope you'll be able to be lucky too. Let us know how you're doing.
Margaret
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MargaretThanks for sharing your story of tamoxifen working and keeping your cancer stable. I was on it for 2 years and couldn't tolerate it any longer. I ran hot like a car with a rad leak, and then on top of that I had extreme hot flashes sometimes every 20 mins. After going off the tamoxifen, 9 months ago I had two spots on my lung that had been stable for a year and a half (while on tamoxifen) then just 2 weeks ago had a follow up scan and it was spreading like wild fire.. both lungs now and growing a lot in size. My onco didn't even think the spots were cancer till now. No doubt stage 4 mets to lungs. So my point is yes tamoxifen works for many!! I am waiting for the booking of my scans (pelvic and bone) and then he will be putting me back on Tamoxifen or another AI. Hopefully another will not give the extreme hot flashes. Then I also will be joining the drug trials. Hopefully it all works for me as it has you but it is so nice to hear that is can and does happen!
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I was only diagnosed January 1st of this year 2014, but I am HER+ and my onc put me on Tamoxifen. I am also taking Zometa for spinal mets and bone strengthening. I know it has only been a few months, but every month my onc measures my tumor and every month (so far) it has shrunk. I just hope it continues to work for me.
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nkuehl - Well your certainly going in the right direction! Keep it up!0 -
thanks very much for the input and support, ladies.
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Tryn2staycalm,
Thank you for your support. I am so glad I finally chimed into these threads instead of just reading through them.... it is so nice to be able to "talk" to those of you that understand. I really don't have any friends that have been through this (thankfully) and although they are wonderful, they just don't have any way to relate to me. And I am learning so much...I had no idea Tamoxifen was an option when you were stage 4. Now that my tumor markers are up I am sure every little ache and pain means that my bone mets have progressed. Good luck with your pelvic and bone scans..... let me know how it goes. Hopefully you won't have to wait long!
Take care-
Andrea
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Hi all,
I was diagnosed in March with brain, lung and eye mets 8 years after having a mx for DCIS. I chose not to take Tamoxifen after my mx which I now realize may have put me here in Stage IV but my MO said there was less than a 1% chance I could go from DCIS to Stage IV. Guess I'm a statistical outlier.
I'm chemo naive. Had biopsies on my breast and lung that showed me to be ER+/PR+, HER2- so my MO immediately put me on Tamoxifen and Zoladex. A couple of weeks ago I started whole brain radiation and radiation to my eye. I have to say, that so far I have not experienced any SEs with the Tamoxifen or Zoladex. I have lost 16 pounds (I had that much excess so I'm not too skinny now) and have not had any problems with depression or weepiness. Before the Tamoxifen, I was coughing a lot because of the lung and chest node mets but now my breathing is pretty normal. I actually feel so grateful to be able to take Tamoxifen since it has so far allowed me to live a pretty normal life even during radiation.
My MO said that she has been able to keep ER+ patients stable on just Tamoxifen for years. Hopefully, I will be that lucky and be able to save the big gun chemo and AI treatments for after that.
I am also very careful with what I eat. I've become a vegan and try to avoid processed sugar and flour. I also do yoga and dance or take a long walk every day. I think that diet and exercise have been just as important a part of my treatment as the meds and rads.
Hugs, Susan
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Hi all,
Andrea - I totally understand the "every little ache and pain". I'm not as neurotic about it was I was a year ago, but was neurotic enough to get an "extra" bone scan. And it's arthritis. As I posted on another thread, getting switched to Naproxen from ibupropen has been amazing. Much less pain and much less neurotic.
Not saying you're neurotic about it, but I certain was (and kind of am). As one of my friends once said, "my neuroses are legion."Susanin, welcome to the statistical outlier club. I had IDC, ER+/PR+/HER2-, and radiation, no chemo as it wasn't warranted due to my low risk. So imagine my surprise to have bone mets. I stopped tamoxifin about 6 months early as the oncologist said it wasn't really necessary to continue. However, I had an oncologist during my Stage 1 times who really wanted me to have chemo, but I chose to believe the OncotypeDX results instead. So I understand how you feel that maybe you made a mistake and it put you in this position. Not that you asked for advice, but don't second guess your decision or blame yourself. You took the advice given at the time and did what you thought was best. There's a good chance you would have ended up with Stage 4 even if you had taken Tamoxifin - lots of us did the five years and still ended up Stage 4. So don't beat yourself up. Wishing you the best.
Hugs to all,
Terre0 -
What an amazing group of women we are! The love and support here are amazing. Like Tryn I was a lurker for a while. It's amazing the difference in joining the conversation. I, too, have wonderful friends but they just don't understand. "But, you're getting better. Right? I mean you said you were responding." I feel so badly saying over and over " I am not going to get better/cured." That's not what I focus on!
To the Nerotic Gang! Wow do I belong with you. It took me three years to accept that every pain wasn't new mets! Cancer of the ear?? It just doesn't make sense that my friend, Arimidex, would be the cause of most of my pain. Hard to comprehend. But Arimidex, for all my aches & sweats has stopped my mets for 3.5 years!
I'm really scarred now. There are new mets. "Just" in the tissue deferring my abdomen but as calm as my MO is I can't sleep! She thinks that a recent switch to Generic is why Arimidex suddenly stopped so I'm back on name brand & waiting a couple of months to see if that kicks it's ass back into place. Oh man I hait waiting!! Like all of you, I know!
TRYN I love your image of taking your hand. If you don't mind I'd like to join the circle! Let's all hold each other up and be strong. I think that is a huge part of our success. Thank you all again for sharing your fears & successes. It is good to know we aren't alone in this.
Have a lovely, SE free day!
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Vadre You are so welcome to take my other hand and join our circle of supportive friends. Just having that does help (to me anyways). I've been told over and over again I'm a nurturer and I guess I still am. If I can make it just a little easier for you then that makes me happy. Hold on girl.. we are with you waiting too! Hugs.
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Hello everyone,
Susanin, I'm chiming in with Terre. I am one of those statistical outliers- I finished my five years of tamoxifen in Sept of 2012 and my MO declared me as having "a history of BC" last November. In March we discovered a bone met and chest wall recurrence. I also did not have chemo- low Oncotype score and the TailorX trial randomized me into the no chemo arm. For a moment I felt I had made the wrong choice as my onc wanted to do chemo but I now have that as an option (much farther down the road I hope) and as "chemo naive." There are no mistakes. We make the best decision we can for ourselves at the time we make them.
Wishing us all the best
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Nan and lovely ladies!
I really appreciate the reminder from your MO to focus on the "big picture!" It is so important to remember. I have Bone Mets which have been under control for 3.5 years with my fabulous little pill, Arimidex. My last scans showed a little new activity which really freaked me out. My ME is very encouraging and wants to take or time deciding what step to take next (including getting me off generic and back on name-brand Arimidex). We did that about three weeks ago and she wants to give it a couple of months to see if that puts the cancer back in its place. I feel crazy , a couple of months feels like eons. It seems like long enough to have cancer everywhere! I know that's panic talking. I trust her 150%, I really do. It's just so nice to hear another doctor saying remember the big picture!
I hope you all are having a beautiful day where ever you are. The sun is out, the birds are singing and the temp is perfect. Do I stop surfing and drinking tea to get up and DO something? Not yet!
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🌸Tryn, Thanks for the open hand! I, too, am a nurturer which I am glad of. I have found that sometimes it is harder for me to ask for help than to offer it! If there is any time I can offer you support please don't wait long to say so. If this Selective Club has taught me anything it is that having the strength to reach out for help is an amazing gift because HERE you will always find it!
Happy Saturday! Virginia
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Susanin, Terre and IntotheWoods....I too am a Statistical Outlier....DCIS in 2009 - tiny little lump - ER+- had lumpectomy and radiation but no chemo and no tamoxifin. Oncologist said he recommended it but didn't push it since I had "less than a 1% change of reocurrance". I guess I was trying to avoid hot flashes and everything else at the age of 41..... After I was diagnosed with bone mets (everywhere) and liver mets in 2012 I felt like an idiot for so long and couldn't stop kicking myself until my oncologist (new oncologist, actually) said it wouldn't have made any difference since the cancer came back Her2+ (or maybe was in the first place and we just missed it.)
And I'm definitely a member of the Nerotic Gang; I pushed my PET scan up two weeks and decided to go back onto Arimidex from Faslodex..... Arimidex was clearing doing the trick and I just switched to Faslodex in an attempt to avoid the hot flashes and other SE's... (I must be a slow learner on the hot flash subject) Hopefully that will settle everything down if I am having flare ups and bring those tumor markers right back to where they need to be. In the meantime I am trying to remember that I AM nerotic and that the little aches and pains could be just that; little aches and pains. Your stories of you doctors encouraging you to be calm "for a few months" are so nice to hear..... helps with my own anxiety level.
Vadre - I try really hard to be positive with all of my friends too, and stay strong and focus on the fact that I have most of my energy back and all of my hair (curly hair, this time) and that things are so much better than they were a year ago, but sometimes I just want to say DO YOU UNDERSTAND THAT NO, I AM NOT "ALL BETTER" AND ON TOP OF THAT, MY FEET ARE NUMB AND MY LEGS ARE STIFF AND MY JOINTS ACHE AND WHAT I REALLY, REALLY WANT IS MY "NORMAL" LIFE BACK WHICH IS NEVER GOING TO HAPPEN.
Holding out my hands to all of you and thanking you for the understanding........ also thinking of you all every day and praying for good results.....
Andrea
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Virginia.. ty.. very well said. Glad we have each other to walk this walk with. And Adrea I do understand and I can relate only too well to most of it. I've started to accept it more.. takes a little time to come to terms with it all. Trying my best to live as normal as I possibly can and not let it take all my good days. I still can laugh, and with my friends and daughters help we enjoyed working in the gardens... they are so so so beautiful. I love the beauty of plants and flowers. It is therapy for me. We have to keep doing what we love and find what can still make us happy and let us enjoy it.0 -
Hi all!
Andrea - I so totally hear you! I want my "normal" life back! And I realise I'm really lucky with regard to my "issues" from this crap disease. I saw a post somewhere here where the person posting said "I look ok on the outside but look like hell on paper." And sometimes that's kind of the hardest part. I want to be treated like I'm "normal" on the one hand but also have people understand that I have limitations I didn't have before. Like the horrific chronic fatigue, neuroses meltdowns, etc. So I guess I want it both ways, which is undoubtedly unfair of me.
I've been on Femera for 15 months and suddenly last month, my hot flashes have abated! I still get them a bit, but nothing like they were. Last winter, they kept my heating bill low.
As far as not learning quickly, I saw a comedian on TV last week who said, "I never make the same mistake twice. I make it 5 or 6 times, just to make sure." That would be me!
With regard to being neurotic, something that helps me immensely (and it took work) was when the fear/neuroses/freak outs/depression threatens to swamp me, I ask myself "Am I ok right now? In this moment in time?" And it does help stop the cycle (which feels like a tsunami to me). It's now become a bit of a habit - am I ok right now? Yup.
Virginia - I have an easier time giving help than accepting it. Not that I wouldn't welcome someone coming over to vacuum about right now.
But realistically, if someone did, I'd feel guilty about it. And I feel for you - waiting is the WORST! I have limited amounts of patience on a good day, and waiting "to see" or waiting for results sucks.Intothewoods - completely agree. No sense beating oneself up over things that can't be undone. Easier said than done, however.
This is turning into a bit of a long post, but..oh well.
I want to tell you about my week last week. It was a crap week. Started on Monday when I went to charge some supplies on the company credit card and it was declined as over limit. Hummm...that was odd. Got the statement and much to my embarrassment, I had used it on Sunday for my groceries. It's the same colour and bank as my personal ATM card. But embarrassing nonetheless. Tuesday, I was to fly to Christchurch at 8:30. Left the house at 5:45 (see neurotic above) to make an 8:30 flight. Typically about a 90 minute drive to the airport. However...traffic. And more traffic. And for the first time in my life, I missed my flight! Had to cancel meetings, confess to the client and my coworkers, etc. Then, just in case I hadn't screwed up enough, I managed to triple book my boss into meetings and had to call clients and cancel and apologise. Lovely. However...I finally stopped my self-pity at being a screw up cycle when I realised - I have Stage IV cancer, and I can still do about 90% of what I could do a few years ago, and I have a great job and can travel for work, etc. So if this complete screw-up week is the biggest thing I have to complain about, life is pretty darn good! Love the holding hands in a circle image. Hugs and hands to all of you!
Terre
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kiwicatmom,
Excellent post but sorry up your day of errors. It happens to us all.
As far as normal life coming back, I think we have to accept that once we're at stage IV (and perhaps earlier as well), things will never be entirely as they were before. The phrase "new normal" is getting bit tired but eventually, most of us, find a way to live our lives and deal with the changes bc has wrought. It may not be what we planned, hoped for or expected, but whatever our reality becomes, we have to deal with it. No going back, no undoing. For me, after getting over the initial, shock, surgeries, hospitalizations and a major unforeseen complication, my next decision was to live my life as well as possible and try not to stew on the ugly realities of the future, since I have no way of knowing when that future will be. It is a very conscious decision and I do have days when it's difficult to abide by it, but it's something I have control over, not cancer.
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Updated my pic with my new hairless style! Thanks to everyone who pointed out that it's no good looking back and berating ourselves for not being more aggressive with past treatments. We are where we are now and just have to look forward and do what we can do advocate for our health.
The new normal does mean that I take naps during the day but that's a real luxury! Before I was diagnosed I was jetting around the world for my job 90% of the time and the idea of taking a nap in my own home on a work day was like an unattainable dream. Now, I have time to go for walks with friends and family, have breakfast with my son (worked at 6am for most of his life!), go to museums. There have been lots of positives to the new normal for me.
Joining in the circle of hands!
Hugs, Susan
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Susan - you look magnificent!
The new normal can have some benefits! I'm so lucky that my employer lets me work from home a fair amount and I've been known to do the workday nap as well. And I'm ticking things off the "to do" list. I don't call it a bucket list, because these were things I wanted to do well before diagnosis. However, being Stage IV has helped me better prioritise things.
Take care and hugs to all.
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I see our circle of holding hands is growing and the makes me smile. Welcome to all! Still waiting for my scans.. still waiting to find out why my MO called (missed the call). I just want to get started with treatment. Its been 2 weeks and my clock is ticking! Hugs to all.0 -
Thanks KiwiCatMom! Glad you have a flexible work situation that allows you naps at home. My boss has been amazing and told me I can do whatever I want, work at home, just do special projects. Until I have my first post treatment scan though, I don't know what may future treatment plan will be. May also have some short-term memory loss from the brain radiation that could make me incapable of doing my job. At this point, just trying to take it one day at a time.
tryn2, let us know when you hear back from the scans. Sending positive energy your way!
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