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Medical Forum / Diseases and Disorders / Breast Cancer / August 2004lung mets, what to expect?
My wife has had bc for quite some time, and now she has metastases on the lungs. This last year she had this special medication, something new, experimental, but now, one year later, they tell us it does not work anymore. Now she is going to have some rather "normal" chemo, they call it "5fu"and "navelbine"> My wife is rather desperate, and I feel hopelessely unable to help. she wants me to post this simple question : "did anybody around there have the same problem , and how did you do to get well again?" What shall I tell her? Does anyone care to comment? thank you. Jean I don't have lung mets, but know often times they switch chemos when one type stops working. She has the power to think positive and fight this awful disease. She did well one year with an experimental drug, just think how well she'll do with the tried and true. Other than feeling anxious how is your wife feeling? Also there are several websites ( webmd) is one that have groups with breast cancer patients with mets. Alex > My wife has had bc for quite some time, and now she has metastases on the > lungs. [quoted text clipped - 15 lines] > > Jean Thank you so much. I went to the site you mentionned and indeed there is a lot to read there. You say , you don't have lung mets? Hope all the best for you, Thank you again. > I don't have lung mets, but know often times they switch chemos when one > type stops working. She has the power to think positive and fight this awful [quoted text clipped - 25 lines] > > > > Jean >My wife has had bc for quite some time, and now she has metastases on the >lungs. [quoted text clipped - 10 lines] > >What shall I tell her? Hi, Jean - My wife Deborah has lung mets - we've been battling the beast for five years this month and life is good for us right now. Her tumor load is right about where it was right after her mastectomy so there's still quite a bit of fight left in the girl ;-) Odds are that at some point we'll lose this battle, but that point isn't today - and new treatments come out all the time. I can't tell you what to tell her, but trust me - when it's time to worry her oncologist will let you know. Stage IV breast cancer is pretty much incurable, but it's been five years since Deborah's Stage IV diagnosis and we're in about the same spot now that we were then. Life is good right now - when it's time to work, we work - when it's time to relax we do that. Your wife probably isn't going to die tomorrow, Jean - love her and support her. Work together on this thing - at some point it may end badly, but that point isn't today and as my wife's minister says, if you spend the rest of your time together waiting for something awful to happen you'll regret it for the rest of your life. Please stick around - I'm pretty sure you didn't come here for someone to lie to you, and people here don't do that. I'm sorry that you and your wife need to be part of our little group, but grateful that you found us. Hang in there - it does get better. allan  Signaturewe don't see things as they are, we see them as we are. -- Anais Nin thank you, allan I am rather confused about this newsgroup, just tried, and got those friendly answers. Thanks again. It does help. Just to share some good news : A granddaughter was born yesterday.That brings some sunshine too. again, thank you. Jean > >My wife has had bc for quite some time, and now she has metastases on the > >lungs. [quoted text clipped - 42 lines] > > allan > thank you, allan > [quoted text clipped - 4 lines] > brings some sunshine too. > again, thank you. ------------ That is *wonderful* news. I must tell you that one of my first thoughts upon learning I had cancer was that I would die before ever becoming a grandparent. Eva What wonderful news ? Is she your first? > thank you, allan > [quoted text clipped - 54 lines] > > > > allan > My wife has had bc for quite some time, and now she has metastases on the > lungs. [quoted text clipped - 11 lines] > What shall I tell her? > Does anyone care to comment? OK I don't have experience of lung mets, but I'll comment anyway. As I'm sure you know, once you've got mets, it is rare that it ever goes away completely, and if anyone can invent something that will get rid of it they could get very rich. Of course there are plenty of websites claiming to cure secondary cancer, but none that can be shown to work. However with current mainstream therapies it is often possible to keep the cancer in check for several years, and to live a pretty normal life. So I'd say you are doing the best for her that you can. You ask what you should tell her. What doesn't she already know by this stage? I think that little question might hide a bag of worms here. Doesn't she know that she will most likely die -with- cancer even if she doesn't die -of- cancer. That various therapies can slow it down but it will nearly always come back. That to survive more than ten years is rare. That medical science may not be able to cure her but can do a lot to make her life as normal as possible. You sound as if you hope for a miracle. Sorry I can't be more positive. Keep on hoping for the miracle, but be prepared for it not to happen. Tim Jackson >As I'm sure you know, once you've got > mets, it is rare that it ever goes away > completely, and if anyone can invent > something that will get rid of it they >could get very rich. Of course there are >plenty of websites claiming to cure >secondary cancer, but none that can be >shown to work. >However with current mainstream > therapies it is often possible to keep the > cancer in check for several years, and to >live a pretty normal life. >So I'd say you are doing the best for her >that you can. >You ask what you should tell her. What >doesn't she already know by this stage? I >think that little question might hide a bag >of worms here. Doesn't she know that >she will most likely die -with- cancer >even if she doesn't die -of- cancer. That >various therapies can slow it down but it >will nearly always come back. That to >survive more than ten years is rare. That >medical science may not be able to cure >her but can do a lot to make her life as >normal as possible. >You sound as if you hope for a miracle. >Sorry I can't be more positive. Keep on >hoping for the miracle, but be prepared >for it not to happen. >Tim Jackson Tim. Once again, your posts are so honest and informative. I don't post often, but I too have lung mets and right now I don't feel like things are going so well. I've been doing CMF for 4 months, 2 more to go, but I don't think it's doing much. I may decide to stop the chemo and go on Arimidex. I'm really not interested in doing a series of different chemos to try to live a little longer, but that's just my personal situation. I'm in the process of doing my final directives so I won't have to think about it later. I'm single with an estranged family situation so it's been a little difficult in deciding what to do about leaving a condo and contents, but I've gotten some good direction about getting the paperwork set up and handled by a lawyer or accountant. Last week made and pre-paid arrangements for burial and that's given me great peace of mind. Wanting to get it taken care of outweighed the sadness and tears I would have felt a few years ago. (Afterall, I am almost 65--it's about time did this.) I don't mean to sound hopeless--I'm still independent and functional--but I know what you say is true. I'm so much more realistic about stage IV than I was with the first time around. Altho my orig. dx was already stage III I put it all behind me after treatment, but now I face the realities that this-is-my-life and I won't be young and full of energy again. Right now, I'm just plain tired out. Thanks again for being so honest and direct. The realities are hard, but we must be prepared. Kathie Apology: Not quite sure how I messed things up so much trying to repeat Tim's message re: stage IV. I'm on WebTV so it's kinda line by line, but really botched it up. Too bad I couldn't tell before I saw it posted--it looked OK on my screen. Kathie > Tim. > [quoted text clipped - 25 lines] > > Kathie Dear Kathie I'm sorry to hear that your disease seems to be progressing despite chemo. I would agree that in such a situation it might well make sense to abandon the therapy in order to maximise the quality of what life remains. Spending all of your time in chemo and tired out, hoping to prolong things a bit, isn't much of a life. Of course we never know for sure how things will go, and we will never know what might have happened if we made different decisions. But in this case it seems a fair bet. Maybe you could get another diagnostic chest x-ray to review the situation before making the decision. It is very sensible to get a will, funeral arrangements etc sorted out, especially if you don't have anyone you can trust to take care of these things for you. It is horrible facing up to the need to do it, but of course really its something we should all think about doing once we reach middle age, and certainly once we reach retirement. Although I've personally no plans ever to reach retirement. Tim Tim, Actually, I'm not sure whether lung mets are progressing or not. I just had another follow-up xray on 8-3 after cycle 4, but this radiologist noted that this was a follow-up for POST treatment, rather than during treatment. Instead of any mention about the nodules that had been noted in previous xrays, she said "air space opacities" re-identified as consistent with mets. Said there was either a right-sided plueral effusion or elevation of the right hemidiaphragm. My oncologist has been on vacation and I am scheduled to see her tomorrow (Thurs) right before next chemo. Since this report didn't tell me whether chemo is doing much good or not, I called to try to get a comparison re: nodules, but radiologist not in until Wed. Nurse said air space opacities are densities, not the same as nodules. She said she would have radiologist look at xrays again and call me, but haven't heard so far. Don't know if oncologist will gleam a comparison from this report or not. I've learned to "play doctor" when trying to make decisions. Do you have any thoughts or knowledge about how hormonals (Arimidex) work on lung mets? ER this time is 80%. I'm inclined to stop chemo and see how I tolerate Arimidex. It could stop progression to further locations and may help lung mets. Kathie > Do you > have any thoughts or knowledge about how hormonals (Arimidex) work on > lung mets? ER this time is 80%. I'm inclined to stop chemo and see how I > tolerate Arimidex. It could stop progression to further locations and > may help lung mets. I think it works as well there as anywhere else. It's anyone's guess which will be more effective in practice, but I'd bet on the chemo. If the chemo seems to be setting it back then it's probably worth continuing, having got so far. If it seems to be progressing anyway, then it seems rather pointless. However there seems to be little detectable change, I'm not clear whether that is because it is static or because not enough tests have been done. If it is static, then I suppose it's a toss-up which way to go. I can't help feeling that having done 4 you might as well get the benefit of completing the set, that would give better protection against further spread. I don't think Arimidex is going to do any better. Sorry to be vague. Tim BTW I'll be away for the next couple of weeks. I think I remember from 20 years ago the onc saying once you have run a course of chemo, even if you stop in the middle, you cannot have those drugs again later. Like you've used up your life's quantity of those chemicals. Is that still the going philosophy now? If you stop in the middle you can never get the rest later? Ann in PA Signature<><><><><><><><><><><><><><><><> www.ajbservices.com www.parkavenueumc.org They are rethinking that, some drugs like adrimycin are toxic to the heart. They are finding adults who were treated as teenagers are now candidates at age 40 to 50 for heart transplants. If you are 50-60 you aren't as concerned that age 80 to 90 about heart failure. Signature> I think I remember from 20 years ago the onc saying once you have run a > course of chemo, even if you stop in the middle, you cannot have those drugs > again later. Like you've used up your life's quantity of those chemicals. Is > that still the going philosophy now? If you stop in the middle you can never > get the rest later? > Ann in PA hi kathleen- i'm 38 yrs old stage 4 w lung mets on femara (estrogen blocker similar to arimidex)) zometa (helps with bone mets) and lupron (supress ovary function). i am also 80%er+ and her2nue -. at time of diagnosis, i also had 10 small tumors in both lungs. my most recent scan last month indicated that 6 of those are now indescernable from surrounding tissue and the remaining 4 have apparently stabilized. i have been on this treatment for nearly 9 months and have led a fairly normal life. there are few side effects, and the ones i have are certainly manageable. that is my experience so far w the "new hormonal therapies". i'm trying to put chemo off for as long as possible. my onc has one patient who has been stabilized on femara for nearly 3 years. i just thought i would share that info with you. for now, if i were you, i would finish your course of chemo, and in the meantime, discuss other options with your doctor(s), including any possible hormonal therapy. good luck and hang in there... -christina > Tim, > [quoted text clipped - 20 lines] > > Kathie Thanks a lot, Christina, for your information regarding the use of hormonal treatment for lung mets. I had an appt. with my onc. today and, after reading the xray report, we both agreed that the CMF is not helping and my cough is still a problem. There are some lymph nodes in my neck that are just the same as last April. I brought up going on Arimidex, but she said that takes about 4 months to work (if it's going to) and said that chemo will work a lot faster to ease breathing and coughing. She could detect some fluid around one lung. After discussing several things, I agreed to try weekly Taxol. I was looking forward to getting my hair back, but I guess not. Lost about 50% on CMF. At this point a wig will look better anyway. Onc. said if Taxol works I can then think about going on the Arimidex. I've read that many have a lot of bone/joint pain on Arimidex. Of course, the taxol can cause hand/feet neuropathy. I'm told the low-dose weekly IV is well tolerated tho. The first one is the riskiest because they have to watch carefully for any bad reactions and/or breathing problems. That's all I need.... Thanks for your experience. Not too many have lung mets. Kathie >After discussing several things, I agreed to try weekly Taxol. I was >looking forward to getting my hair back, but I guess not. Lost about 50% [quoted text clipped - 9 lines] > >Kathie Hi Kathie, I'm sorry I can't help about the lung mets, but I have been taking Arimidex for 20 months and haven't had any problems at all. No bone or joint pain. I did have painful feet during CMF chemo, but I now think that was either because I gained 20 pounds and my shoes were too small, or possibly my feet and hands were swelling because of the steroids in the chemo. Marilyn > I've read that many > have a lot of bone/joint pain on Arimidex. Not that many, most people have no problems. You can always try it and if it causes trouble stop or switch to something else. Tim Jackson I didnt for what its worth. I thought Arimidex was excellent - good effects and easy to live with. Chris > > I've read that many > > have a lot of bone/joint pain on Arimidex. [quoted text clipped - 3 lines] > > Tim Jackson Hi Tim, Welcome back!!!! I haven't gotten the Arimidex yet but hope to have the script filled soon. Had to check out some financial 'outlets'. I am feeling better lately now that I've been off the CMF for about 4 or 5 weeks. Not so tired. I might have better luck with weekly taxol, but I just don't want to do another chemo right now. Don't know how the arimidex will work on the lung mets, but I'll be happy if it keeps things from spreading or getting worse. If you remember, I also have the blood disorder, Polycythemia Vera, which makes many of my blood counts fall out of the normal range. Usually "we" watch the RBC, WBC, and most importantly the platelets which tend to get way too high. The CMF did a great job of keeping those counts in the normal range. Now, I'm back on the chemo pill Hydrea to try to keep things more towards the normal range. I have a weekly CBC and, thankfully, they're staying pretty close to normal. That's actually an improvement--so far. I take very little for granted anymore. I've become much more realistic. I'd be thankful just to deal with both of these conditions as chronic diseases, with the various good times/bad times. Kathie |
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