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Medical Forum / Diseases and Disorders / Cancer / April 2005stage 4 lung cancer advice?
After spending a week in the hospital with my mother while she took tests and waited, it was confirmed yesterday morning that she has stage 4 lung cancer. We're obviously still in a state of shock and grief. My mom has been in great pain since the week of Thanksgiving 2004. The week before Christmas, the pain got so bad that she went to her doctor and was admitted to the local hospital. Her doctor said they did a chest x-ray and nothing came up. My mom had major pain in her stomach, airways, and in her jaw/face. They prescibed acid reflux medication but it didn't much help. Last week on Thursday she checked herself into the emergency room at the hospital as she said the pain was getting worse and worse and she couldn't deal with it anymore. That night they admitted her for possible lung cancer. This past week she's had a bronchoscopy which came back stating she had cancer, a bone scan which showed nothing but arthritis, and another chest x-ray. The chest x-ray was done first of course and it showed growths in both lungs and also a growth in her pancreas. We were basically kept in the dark information-wise all week until Wednesday evening our GP came in and told my mom that the bronchoscopy results were finally in and it is confirmed she does have cancer but it is "very treatable" and that the oncologist would be in the next day to discuss a treatment plan. I had done some basic net searching on lung cancer all during the week (when I had time) and I was skeptical of her GP and his "it's very treatable" line. But I held out hope. The next morning I made sure to be at the hospital first thing, and after begging the security guard to let me in I arrived just after the oncologist had informed my mom that she has stage 4 lung cancer. Fortunately he is a considerate doctor and took the time to talk with me privately about it. He said that she has a tumor in her one lung (I *believe* he said it was 3.5cm but I was so shocked, even though I expected the worst, that I can't be certain), and that the cancer has spread to her lymph nodes and down to, he believes, her pancreas. The next step he said was to do a pet scan to see if the growth in the pancreas is cancerous as well. He said that he believes it probably is. I asked for a prognosis, knowing it couldn't be good, and he said that the median life expectancy is 1 year for stage 4 is 1 year. Since I wanted my mom to be better educated/informed on this, I mentioned to her about changing hospitals and going to Fox Chase Cancer Center, which is only a short drive from where she lives. She agreed and so we're waiting for our first consult with Fox Chase. I'm holding out hope for a miracle, that this nightmare will have a happy ending, but I know the reality of the situation is grim. My mom is staying with us for the weekend. She has been living with my brother for years now since my Dad passed. She is 58 and was in otherwise great health. Up until she was admitted to the hospital, she smoked heavily, which I'm sure is the cause of this, but no one deserves to go through what she's going through and will go through. The Oncologist at Temple supposedly told my mom she is in stage 4D - he just told me stage 4, no "d" - I've searched on the net and cannot find a reference to this "D" - can anyone advise? Based on her pain and the stuff I've seen on the net (for what that's worth I guess), I'm worried her time could be much shorter than a year. My mom is in a lot of pain still and I'm terrified it will get worse. She was prescribed two different bottles of morphine, with the instructions for the one bottle as "take two times a day". The other bottle is "Take a maximum of two times a day, but only if you must due to severe pain attacks". I hoped that second bottle wouldn't be needed, but she told me tonight that she had to take them already. She's terrified too. I'm not looking for someone to tell me anything. I don't know why I'm typing this other than to get some thoughts down while I hope for a miracle. Can I expect the pain to get much worse? She's very tired all the time too. Sincerely, mark > After spending a week in the hospital with my mother while she took tests > and waited, it was confirmed yesterday morning that she has stage 4 lung [quoted text clipped - 72 lines] > > mark I am really sorry to hear your news Mark. You must be shocked and horrified. J and Steph will have info for you soon, but I think that you must prepare yourself for bad news. My Dad died from bowel cancer, not lung, but when he had to up his meds to keep on top of the pain, and became very tired it was the beginning of the end. He died 3 months after being told that his cancer had returned. If she is still in pain, you need to make sure that her medical team know this so that they can amend her pain medication for her. These cases are all different with different outcomes, just know that you will not regret spending too much time with Mum if she lives longer than your and the doc's expectations. Now is your chance to make some memories. My heart goes out to you, take care Sinead > After spending a week in the hospital with my mother while she took tests > and waited, it was confirmed yesterday morning that she has stage 4 lung [quoted text clipped - 72 lines] > > mark Morphine is entirely the correct first step, but the point of pain killers is to kill the pain. The long acting morphine needs to be increased, and the short acting stuff should be taken whenever necessary. You really need to talk to the onc about both the disease and the pain managemnet. You must have misheard, BTW, there is no such thing as stage 4D. > Morphine is entirely the correct first step, but the point of pain killers > is to kill the pain. [quoted text clipped - 4 lines] > managemnet. > You must have misheard, BTW, there is no such thing as stage 4D. Thanks for the response Steph. The "4D" was something my Mom claims she was told. In her state at the time I could see how she could mishear it. At this point she has no Oncologist. Since she decided not to continue with the hospital she was at, we're waiting for her to be admitted to a local Cancer Center for treatment. I expect that will begin later this week. I'll know tomorrow when her first appointment is. mark >>The "4D" was something my Mom claims she was told. In her state at the time I could see how she could mishear it. << I'm suprised no one has mentioned this, but I'm guessing she misheard 4B. When someone gets is serious diagnosis like this, they should, as often as possible, take someone with them to their doctor's appointments. It is easy to miss or misunderstand things, especially when you are the patient and emotionally involved >>>The "4D" was something my Mom claims she was told. In her state at > [quoted text clipped - 7 lines] > is easy to miss or misunderstand things, especially when you are the > patient and emotionally involved Yes, I will be accompanying her to all appointments going forward. We just heard back today and her first appointment with Fox Chase Cancer Center is not until April 4th. My Mom is upset and I'm bummed out about this and the person I spoke with said if there is a cancellation she will try to get us in earlier. It's such a long wait and I fear the longer she goes without any possible treatment the chances of getting better decrease. mark Mark----Which lung has the cancer?? Left or right? also don't give up hope because they are doing some amazing things nowadays. Let us know. > Mark----Which lung has the cancer?? Left or right? > > also don't give up hope because they are doing some amazing things > nowadays. Let us know. Thank you Sinead, J, and Steph. It's been since this past Thursday that my Mom was discharged from the hospital. That afternoon I called to setup an appointment with Fox Chase Cancer Center (which is, fortunately, only a short distance from us). It took them a couple of days to wrestle my Mom's medical records/test results from the hospital but today it was finally complete and I was told that I'd receive a call tomorrow with a time/date for her first appointment. In the meantime, my brother and I are scrambling to ensure that my Mom can continue receiving medical coverage/benefits (we're in the USA) and going through all the research/paperwork in order to get the ball rolling on that. What a terrible thing to have to go through at this time, less than a week after hearing that she has about a year to live, to have to navigate all this government red tape in order to ensure she can receive medical care. Mom was really tired and in a lot of pain the first 2 days out of the hospital. She's also developed a nasty rash on her back. She believes it is from the "dyes" they used for some tests while in the hospital, an allergic reaction. She is going to cal her GP tomorrow about it as it's not going away. On the 3rd day after her discharge (Saturday), she seemed to be adjusting to her medication and starting to feel okay for a few hours at a time. Sunday she seemed much better. She went home (she lives with my brother/sister-in-law, but stayed with us this first weekend out of the hospital because my wife and I have our kids/my Mom's grandkids and she desperately wanted to spend time with them). She said today she had a few good hours and then she'd have some wierd pains, and then a few good hours and more pain, etc. And she's always tired. She also is not taking the extra morphine pill (the extra dosage to be used in case of extra pain) because she's concerned with getting addicted. Probably not something to worry about in her condition, but that's her decision. I'm hoping that her appointment with her new oncologist(s) will be this week and that somehow, some way they can provide some hope. I will report back when I have some new information. Thanks again, mark > Mark----Which lung has the cancer?? Left or right? > > also don't give up hope because they are doing some amazing things > nowadays. Let us know. Thank you Sinead, J, and Steph. It's been since this past Thursday that my Mom was discharged from the hospital. That afternoon I called to setup an appointment with Fox Chase Cancer Center (which is, fortunately, only a short distance from us). It took them a couple of days to wrestle my Mom's medical records/test results from the hospital but today it was finally complete and I was told that I'd receive a call tomorrow with a time/date for her first appointment. In the meantime, my brother and I are scrambling to ensure that my Mom can continue receiving medical coverage/benefits (we're in the USA) and going through all the research/paperwork in order to get the ball rolling on that. What a terrible thing to have to go through at this time, less than a week after hearing that she has about a year to live, to have to navigate all this government red tape in order to ensure she can receive medical care. Mom was really tired and in a lot of pain the first 2 days out of the hospital. She's also developed a nasty rash on her back. She believes it is from the "dyes" they used for some tests while in the hospital, an allergic reaction. She is going to cal her GP tomorrow about it as it's not going away. On the 3rd day after her discharge (Saturday), she seemed to be adjusting to her medication and starting to feel okay for a few hours at a time. Sunday she seemed much better. She went home (she lives with my brother/sister-in-law, but stayed with us this first weekend out of the hospital because my wife and I have our kids/my Mom's grandkids and she desperately wanted to spend time with them). She said today she had a few good hours and then she'd have some wierd pains, and then a few good hours and more pain, etc. And she's always tired. She also is not taking the extra morphine pill (the extra dosage to be used in case of extra pain) because she's concerned with getting addicted. Probably not something to worry about in her condition, but that's her decision. I'm hoping that her appointment with her new oncologist(s) will be this week and that somehow, some way they can provide some hope. I will report back when I have some new information. Thanks again, mark > Mark----Which lung has the cancer?? Left or right? > > also don't give up hope because they are doing some amazing things > nowadays. Let us know. Sorry for not answering your question in my first response J - right now, believe it or not, I'm not totally sure. The situation in the hospital was really strange and quite frankly I'm kind of ticked at how things were handled. My Mom's GP told me the first night she was admitted that the chest x-ray showed a small growth in both lungs as well as a growth in the pancreas. Well it just seemed awfully strange that she'd have all these growths when she had a chest x-ray the week before Christmas this past year, not 4 months ago, and nothing showed up then. And now both lungs and the pancreas... But then, on Thursday morning when I walked into the hospital at 8am and was met by the Oncologist (who we had not met/consulted with at any point prior to then) upon arrival and told the dreadful news, all he said was that she has a growth in the left lung and the cancer has spread to the lymph nodes and he believes to the pancreas though the testing hadn't come back yet so there was no way to know that for sure about the pancreas. Also, he mentioned another place in the airway/stomach area that escapes my memory right now (you can imagine how shocked I was at hearing this all). He then told me it was stage 4 and the median life expectancy is 1 year. He then gave me his card and told me to call him to start treatment. He didn't seem overly optimistic. Now, my Mom had already decided to seek treatment, if it was confirmed to be cancer, at Fox Chase Cancer Center instead of continuing at the hospital. So basically we have to wait until the doctors at Fox Chase brief us to find out more info. At this point I don't know for sure even whether she has small cell or non-small cell cancer. I'm assuming because of the primary growth in the left lung it is non-small cell? Either way, we're hoping to find out more later this week. Once we start with Fox Chase I'll feel much better because we'll have a single point of contact to work with. mark > After spending a week in the hospital with my mother while she took tests > and waited, it was confirmed yesterday morning that she has stage 4 lung [quoted text clipped - 72 lines] > > mark Get your mother to take the slow release morphine (if that is what one of the bottles is) and use the quick acting morphine as often as needed to keep the pain at bay. A good way to work out how much morphine to take is to take a dose as soon as the pain starts. If the pain is not gone or well on it's way in 30 minutes repeat the dose. In thirty minutes if the pain is not gone or reduced take another dose. If the pain persists you need to contact the doctor again. He should increase the starting dose to (say) double what she started at and go through the same routine and keep doing this until the pain is controlled for about four hours with a single dose. Keep a record of the morphine used and the total daily intake of morphine should be converted to slow release formula. Ideally breakthrough pain should only occcur once or twice a day. The breakthrough dose of morphine should be one sixth of the daily slow release morphine intake. NSAIDs (anti inflammatory drugs) can have a significant impact on lung cancer pain and reduce the amount of morphine needed, paracetamol (Tylenol) can also be effective. History of gastric ulcer or reflux may or may not stop her using NSAIDs. Radiotherapy and / or chemo may also help control the pain. Referral to a palliative care team is recommended . MIKE >> After spending a week in the hospital with my mother while she took tests >> and waited, it was confirmed yesterday morning that she has stage 4 lung [quoted text clipped - 93 lines] > Referral to a palliative care team is recommended . > MIKE Wot 'e said.......... > Get your mother to take the slow release morphine (if that is what one of > the bottles is) and use the quick acting morphine as often as needed to keep [quoted text clipped - 17 lines] > Referral to a palliative care team is recommended . > MIKE Thanks for the response Mike. I'm assuming by your reference to palliative care that I need to abandon all hope for a remission or possible cure at this point? mark > Thanks for the response Mike. I'm assuming by your reference to > palliative care that I need to abandon all hope for a remission or > possible cure at this point? I'm in stage IV also. Survival is rare, so we shouldn't pretend otherwise, but stats do say that 6% last 5 years, Note also that I was told when diagnosed that I had 6 months to live. I was then given various alternative estimates, with the most optimistic being two years. That was in May, 2001. RECOMMENDATIONS: She should keep fighting as long as the quality of life makes it worthwhile. She's the one who can make that judgement better than anyone else. Set goals for things that she wants to see or do that can stretch things out. I vowed to live to vote against Bush last fall. Probably not the most important thing in her universe, but for various reasons it was in mine. She'll have other goals, such as a grandson's graduation in two years, seeing the Cubs win the World Series (well - keep the goals realistic), whatever. That helps. I've hit all the goals I set for myself in the hospital after diagnosis, finishing my MS degree, putting some time into teaching, political objectives (last one about to be reached when Colorado passes a statewide anti-smoking statute in the next couple of months). After goals were met, I've noticed a fall off in health. Some friends of mine have decided to nominate me to be a delegate to a national convention next fall. The requirement is that I stay alive to next fall, so they have bought into the theory that long term goals are a survival enhancing tool. Spend some time doing the things she enjoys doing. Since getting diagnosed, I went to Europe the first time, then returned a second time. I got to Honduras. I've been on two Caribbean cruises plus one in Alaska and another from Hawaii. I also got to NY Mets spring training for the first time in my life. About the rashes - alert the oncologist immediately whenever they happen. Although probably nothing except a mild reaction, it could be a sign that some of the chemo drugs leaked out of the vein. He'll possibly want to see her. Mine also wanted to know about fevers or anything else out of the ordinary. They also have special drugs for things like cold sores in the mouth. Don't call the GP, since he doesn't have the detailed experience with the specific diesese. Being told that she's got a short time to live has psychological consequences, not just for her but for the people around her. The first thing I did was to ask a nearby friend whose wife died of lung cancer how he coped. He referred me to a psychologist whom I have been seeing regularly since diagnosis. Although my wife doesn't see it the same way I do, I am convinced that the people around the ill person should also avail themselves of this help. I have seen the stress in my wife since diagnosis. she could have used the help. Bone up on the family medical leave act, Americans wih Disabilities Act, the procedure for filing insurance complains. You may not need them, but at times the knowledge has been useful. Squeaky wheels do get accomodated. Hang out here. Ask questions as they occur to you. Assume you'll think of other things to ask as you go along. Share your experiences with the next guy showing up a year from now asking the same things that you're asking. Watch out for quacks. Vultures will try to take advantage of you. Rely on J and the others here to know a quack when they see one. No, peach pits don't work. Neither does alot of the other fakery. I'm tired now. I'll post more as I think of it. Others will also post here to share suggestions. Keep fighting  Signature"...Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to slide across the finish line broadside, thoroughly used up, worn out, leaking oil, and shouting GERONIMO!!!" -- Bill McKenna, date unknown agent01413@my-deja.com said... > Keep fighting AND YOU. And that's an ORDER. SignatureEm Still frantically tidying the house... Emily <emily@privacy.net> wrote in news:MPG.1ca9ec5fc060d0fd98be80 @news.individual.net: > agent01413@my-deja.com said... >> Keep fighting >> > AND YOU. And that's an ORDER. I will, as long as there is quality of life. Don't mistake a willingness to fight as long as possible for a willingness to fight past the time when it is hopeless. I don't want to be a living vegetable like Terry Schiavo with crackpor parents draining their own and everyone else's sac8hd Signature"...Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to slide across the finish line broadside, thoroughly used up, worn out, leaking oil, and shouting GERONIMO!!!" -- Bill McKenna, date unknown agent01413@my-deja.com said... > Emily <emily@privacy.net> wrote in news:MPG.1ca9ec5fc060d0fd98be80 > @news.individual.net: [quoted text clipped - 5 lines] > > I will, as long as there is quality of life. That's fair. > Don't mistake a willingness to fight as long as possible for a willingness to fight past the time when > it is hopeless. I don't want to be a living vegetable like Terry Schiavo > with crackpor parents draining their own and everyone else's sac8hd God forbid. I've always made it perfectly clear to my family that should anything of that nature happen to me I do *not* want to be kept alive artificially. I don't necessarily subscribe to the dictum of 'where there's life there's hope' simply because the definition of life can be nebulous. That said, in my book 'life' is more than just breathing; it's Living with a capital L and /wanting/ to live. If you want to live and still yearn for a go on the bouncy castle then fight on. When you get to the point where you're too tired to care then maybe it's time to - not give up, exactly - but to say goodbye and allow yourself to let go. You needn't think your friends are going to let you give in while you've still got the strength to sit at the computer however... SignatureIf you can keep your head when all around are losing theirs... then you've failed to grasp some important aspect of the situation. >> Get your mother to take the slow release morphine (if that is what one >> of the bottles is) and use the quick acting morphine as often as needed [quoted text clipped - 24 lines] > > mark There is no curative treatment for stage 4 lung cancer >>>Get your mother to take the slow release morphine (if that is what one >>>of the bottles is) and use the quick acting morphine as often as needed [quoted text clipped - 26 lines] > > There is no curative treatment for stage 4 lung cancer Is there a possibility of remission? >>>>Get your mother to take the slow release morphine (if that is what one >>>>of the bottles is) and use the quick acting morphine as often as needed [quoted text clipped - 28 lines] > > Is there a possibility of remission? Sure, but it's unlikely to translate into a survival improvement. The aim of any treatment is quality of life, not quantity the pain. >> Referral to a palliative care team is recommended . >> MIKE [quoted text clipped - 4 lines] > > mark I have patients who live 2 days after referral and occasionally patients who live 2 years, although these days I would usually be discharging anyone that stable long before that time. Cure is not likely almost to the point of certainty but I hear what 'Socks' says about fighting. Each of us has to make up his/her own mind about how far to go down that particular road. To make any sort of decision she needs to be fully informed. Many people , in my opinion and experience, go farther than is good and a few oncologists are guilty of allowing them. The only consideration should be quality of life. MIKE > the pain. >>> Referral to a palliative care team is recommended . [quoted text clipped - 17 lines] > The only consideration should be quality of life. > MIKE Mark, Please note that J's computer is broken and she is unable to respond (re Barbara's post). The person who has responded as "J" is not her. He sometimes uses "J" as his label. Steph is an oncologist and although I cannot remember Mike's job title (apologies Mike) he is well worth listening to. Best of wishes Sinead > After spending a week in the hospital with my mother while she took > tests and waited, it was confirmed yesterday morning that she has stage [quoted text clipped - 68 lines] > > Can I expect the pain to get much worse? She's very tired all the time too. Hello Mark and welcome to the newsgroup. The other "J" who replied to you, is not me. If you're using Mozilla, you can filter his posts out. (by copying and pasting this into the filter system.. burglar_of_turds@yahoo.com) Your mother's cancer sure sounds widespread if indeed it's in the junction of the stomach, the lungs and the pancreas. I'm sorry she was in pain for so long, before discovering the real cause. So many others have replied and I realize you're probably very busy. I was wondering if they're going to put a stent (bypass) in the stomach area, so that area /growth cannot block her eating? I'll leave this at that for the moment, until your next update. Keep in touch, We can be here for you as best we can. J |
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