Hormonal Treatment for Stage IV
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Susan: I have my 3rd injection tomorrow. The first time I was injected close to pany line and experienced no pain or residual effects. Last time it was much lower and I still have the lump on one side. I'm going to ask for them to be higher tomorrow. I don't get any side effects after. No hotflashes, no sleepiness....nothing. Makes me wonder if its working.
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I am not in a great mood today... but still managed to smile at your post Frapp. Here I am grumbling about my side effects, feeling a tad sorry for myself. And you are worried because you DON'T have side effects. Can we ever feel comfortable? I don't really think so.
Good luck tomorrow.
*susan*
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I am new to this and have to make a decision so I would appreciate any input. I have gone to 3 different cancer centers for treatment plans and am not sure what the best way to go is. PET scan showed activity in the spine at C1 and L5 but bone scan of the body showed nothing anywhere and bone MRI of spine showed only the C1. Onc at first center feels that C1 is probably cancer but not positive and wants to treat curatively with A/C/T, surgery and radiation then hormone therapy. Onc at center 2 also feels that way but onc at center 3 is very adament that chemo would not work and feels that hormonal therapy (femera) would be the best for me since it is E+ and PR+ and mucin producing which indicates slow growing. Any suggestions?
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Lori, I'd suggest you post this as a new thread under the general Stage 4 forum. More people will see it who may have something to say. I have had TAC and zometa myself with surgery, radiation and hormone therapy post-chemo. I am NED (no evidence of disease) since Feb. 2008. The question is if it would work for you. Maybe ONc 3 has some reason to think it won't. I don't know. Maybe you have other health issues which might affect the outcome. Or maybe he thinks that is just the standard way things are done, ergo it's better. Here's an article which will help you understand the issues and a quote from it.
http://jnci.oxfordjournals.org/content/102/7/456.full
Many reports from prospective clinical trials examine the effects of endocrine, cytotoxic, targeted, or combination treatments in MBC. Despite initial response, most patients develop progressive disease within 12-24 months, the median survival of endocrine nonresponsive or resistant MBC is 18-24 months, and less than 5% of patients live 5 years.
However, some patients who achieve a CR remain free of overt disease for prolonged periods, sometimes even beyond 20 years (16,17). These long-term survivors are usually young and have good performance status and limited metastatic disease. Although this fraction represents a minority of patients (between 1% and 3%), this finding challenges the common belief that MBC is universally fatal and raises the question of curability of this disease. In this regard, the oncology community is often divided in apparently opposite attitudes. On one side, there are those who believe that all patients deserve the most intensive treatment available, even if asymptomatic and at any cost of side effects, to offer them the small chance of achieving a durable CR. On the other side, there are those who believe that only palliation can be offered to these patients because MBC is virtually incurable. A more balanced view is a quality of life-oriented approach, choosing personalized treatments with a reasonable risk to benefit ratio and taking into account the patient's own attitude in guiding them toward more or less intensive therapy.
Best of luck in your decision-making!
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OK, thank you for your input.
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Hi Lori,
do I understand you right, that you´ve been diagnosed this month with BC plus these spine mets? It seems like they used all methods available to visualize any mets that might be there, so that´s good. So if it´s been determined that the thing showing up in C1 is definitely a met, it´s a difficult decision because there is a logical paradoxon in the treatment of bc:
On the one hand, the paradigma is, once it´s in your body, there is no cure but you can try to manage, to juggle the disease wisely by not using your options lightheartedly and so get loads and loads of time, etc....
On the other hand, when there are nodes affected but NO mets are found, the whole philosophy of giving you the complete tough chemo protocol, is killing off any micro-mets that might be present, in case it got into your body after all, and get you cured.... so, if you´ve only got that tiny thing in C1, it might just be your biggest micro-met, and if they give you the full chemo as if they hadn´t found any mets at all, it might just do the trick and kill all the micro mets and you´re cured....
Unfortunately, it´s always a shot in the dark. Perhaps all those people who are cured after chemo would have been cured anyway because no cells ever got into their body. How big is the chance that the micro met theory is true? I guess the dogma "once in your body, always in your body" unfortunately has been very much confirmed by observations and statistics, and figures about effectiveness of chemo as first-line treatment are not very encouraging. However, if there is the slightest chance of curing you, shouldn´t one go for it????.
But if the truth were, that it´s not curable, palliative, my onc says, you only really get real extra living time out of antihormonal tx, once you start chemo, the disease will take it´s course, fast or slow.... So, if they don´t do chemo you could perhaps get 4, 10 or even more years of remission through antihormonals and then you would still have all the chemo arsenal at hands. If the cancer is slow growing as you say, this might really be the best course of action....At my university breast center, which is very much involved in uptodate research, the philosophy seems to be, save chemo for when there is really something visible, palpable, there to get rid off, don´t waste it on a few tiny sleeper cells and one and a half micromet!So I don´t think it has anything to do with "deserving" intense treatment or being given up in palliative care, it´s just they (still) don´t know what´s the right course of action. It´s a question of comparing probabilities, of being conservative or believing in cutting edge research....
There are more factors to consider, which I´m sure they´re doing..like, how many lymph nodes were affected in your case and what was the size of your tumor?
What would I do in your case? I would not decide this in a rush. I think, even if it sounds crazy, I would get a fourth opinion! I would try to find out, why each center came to their respective decision and what do they think of the respective other decision. And finally I would go with the one I trust most, a reasoning plus gut decision.
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Hi All,
Forgive me if this has come up before. I have had a quick skim through but we're up to 25 pages here!
I have had FEC x3 and am having 2nd of 3 TAX this week. Diagnosed with stage IV from the get go in June this year after routine breast scan with mets to liver, lung and spine. On bisphosphonates every 4 weeks. Im strongly ER/PR +ve HER2 -ve. I'm 49 and have been having hot flushes etc since 45. Have had a period in the last year I think but cant remember when
My understanding is that I will go onto either Tamoxifen or an AI after I have my menopausal status checked out following chemo.
Question.
How long after chemo finishes is it usual to start on hormone suppressants? I ask as I'm not confident in my onc (am in the process of switching) and when I asked him if I would go onto hormone suppressants he said "You can have them if you like" (!)
Thanks
Laurie x
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Laurie - I have not had chemo yet and have been on an AI since July 2010. It has worked very will for me. I am now pretty much stable and liver leisions are gone, nodules in lungs are getting smaller and bone mets are not progressing so for me that is all good news. My onc wanted to save the chemo for when there were no other options and to give me as much time as possible to watch my grandchildren grow up. See what your new onco thinks and then go with the option that makes the best sense for you.
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Alesta, big hugs to you on finishing chemo! My onc prescribed femara after I had my mastectomy which was barely a month after chemo. It wasn't optional but the timing of starting it was sort of up to me as I was stll to undergo radiation.
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Scans last week showed 5 new bone mets after 3 years stable with a single bone mets to hip. I had been on Femara and Zometa, but now will be on Faslodex and Zometa starting tomorrow. After everything I've been through I'm shocked by my anxiety over an injection!! And to top it off I'm a nurse and gave injections for years, it's comical really. Sure hope the Faslodex does the trick in getting some of this bone pain under control.
SusanR
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SusanR - I'm so sorry about the progression. That's a heavy load of reality to carry around after three hopeful years. Let's just believe that Faslodex will blast those suckers into oblivion!
I hate needles, too. It seems like once you get a BC dx, they just keep coming at you! I just try to think about something else. Like tree sloths. Or penguins. Or single malt scotch. ;-)
Prayers for you today--
~lulubee
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SusanR: Sorry to hear about your progression. I recently had progression after 17 months of FEMARA and Zometa too. I don't know much about Faslodex. Were you offered any radiation for the bone pain? Jean
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Susan R - sorry to hear about the new bone mets. Praying that the new treatment will stop them in their tracks. Thoughts and prayers are with you.
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Thanks all, I feel like it's just sinking in.
Padiddle, no we didn't talk about radiation yet, but i have a bone met on the skull that has started tormenting me so I don't think it will take long to set up that appointment!
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SusanR, so sorry for the progression. I was on AI for 18mos and in sept had progression of 3 new mets and was swithched to faslodex. The injection is not bad at all. Ask them to let you hold the injections in your hands to warm up and ask them to inject slowly. I get 2 injections each time and was having them everyt 2 weeks for the 1st 3 times and am now at once a month. I had a little diaharrea the day after at first but that no longer happens. I have had absolutely no side effects. The joint aches, depression and nausea from the AI's are gone and I actually feel normal for the first time in almost 2 years. Part of me secretly wonders if its working. I will have a pet scan in a month or so that will determine that. Otherwise, this is a very easy medication. I hope it works for a long long time. Hopefully, you will have the same reaction.
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Hi Ladies,
I am looking for some hopeful stories here...I finished chemo at end of Dec 2010, had my ovaries radiated and started Femara in February 2011.
My last scan shows progression in the liver. So this mean Femara failed after only 8-9 months. I know that there are other hormonals, but has anyone had better (or even the same) luck with the second or third hormonal they have tried? I had hoped to be one of these people who get years out of the hormonals and this latest progression has crushed that hope.
Thanks! B
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Brubum - don't let your hopes get crushed just yet. There are a lot of different hormonals and they all work a little differently. There is one that will work for you. Just hang in there. {{{{{{{{{{HUGS}}}}}}}}}}
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Alesta I would say ASAP. Doesn't sound like your oncologist is being very agressive, so I would push him/her to do what you want, when you want it LOL.
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Thanks amyjo!
Alesta, I agreee with MJL...ASAP.
B
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MJL & Brunburn
Yep I will haul my ass to another onc as soon as my chemo has finished (last TAX on 18th Nov). Have appointment to see my family doc on Friday to talk about transferring to the Royal Marsden in London where there is a consultant who specialises in secondary BC. It should be fairly straightforward but the thing that worries me is I'm not sure how much shared care they will do.
Assume I can have bloods and scans at my local hospital (5 miles) but if I need radiotherapy I might need to go to London (2 hours door to door) and not sure I fancy it or can afford the train there on a daily basis. Will know more after I speak to my doc. Just want to go to see someone who sees me as one of the living, not the living dead!
Laurie x
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hi everyone, im in the middle of a freak out, so sorry to jump in like this...its nearly midnight (of course)..I have often thought of tackling this big thread, but when i see 10000 pages, i have thought, i will tackle that soon..but never have...ive tried search tonight, but no luck. but if you could help me, i will be so grateful...I have just found im bleeding slightly! for the first time in a year on tamoxifen..i have heaps of cramping, and lower back ache. I will call onc tomorrow ...but what does this mean?..i never had a period from the first tab of tamox..so does this mean tamox has lost its effectiveness?..has anyone's period started up after a year?...damn it.
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Never had that problem while on tamoxifen (5 years) but look at the thread "abnormal bleeding on tamoxifen" for other responses. Might help you out since you can't call your doc til morning! Hugs your way!!
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thanks glen!!! XX
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Haven't had time to read this whole thread but wanted to ask a question. I am about to finish Chemo and the issue came up about putting me back on a hormonal. (I have been on Arimidex, Aromasin, Tamoxifen, Femara, in that order, all with difficult side effects) I asked about putting me back on one that I have been on and was told that this doctor doesn't normally put someone back on one they have been on. (In other words none of the prior ones he would put me back on) Has anyone been told that?
Being that I was on the above hormonal's for almost two years and diagnosed with bone and lung METS while on Femara (only on for 1 month) it doesn't make sense to say no to Arimidex or Aromasin.
So if anyone has been told this I would love to hear how it was explained.
Susie
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Did you move on from one to another becasue they had stopped working of because of SEs? I went through the hormonals and when one would stop we would move on to another....BUT there is a theory that sometimes if you have had a break from them, there is a possibility if you responded favorably once, they will work again if you have been off them for awhile...I think it's at least two yrs but am not sure. The onco I consulted with at MDA who specializes in hormonal treatment for BC, had me try aromasin again, but it did not work......wish it would have since that one really worked well for me and the SEs were really nothing other than hot flashes. Probably your onco has the answers for you regarding this.
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Susie, do you think your docs are talking about Faslodex when talking about putting you back on a hormonal? A lot of us are on this drug, along with a bone drug like Xgeva. It's for those who have been treated with one of the others, and have progressed.
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Thanks girls!
Marybe, yes I moved on because of side effects not because the AI's stopped working. Arimidex - horrible stiffness, Aromasin - spine pain no cancer in spine then, tamoxifen sleep went down to 2 hour if lucky 4 hours and not sleepy enough to even nap. Femara - was OK but all did give cause somewhat unresolved sleep issues that made it hard to function. I will have to haul the top doc in on next appointment as this is a very important issue.
sandilee - yes I believe it is Faslodex and I have been on Zometa for a several weeks.
Being now stage IV, staying on something despite side effects or better yet managed side/adverse effects would be nice!
Susie
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Faslodex is about to be rejected as a treatment available on the NHS here in the UK by NICE (National Institute for Clinical Excellence) . Women on it can stay on it but won't be available for me.
http://www.nice.org.uk/newsroom/pressreleases/FulvestrantForBreastCancerFAD.jsp
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Interesting article indeed. Not mentioned is that Faslodex can work after the other AI's have failed. Looks like you can still be prescribed Faslodex until January 2012, and then be grandfathered in, if that is what you want.
*susan*
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I'm just at the start of the journey. Chemo first then onto anti-hormonals. Maybe they'll change their mind or there will be something else by the time I need it...
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