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Medical Forum / Diseases and Disorders / Cancer / April 2005status on my mom's stage 4 cancer
Today was the worst, most horrible day. It was extra bad because, well, my Mom was (believe it or not) looking forward to starting chemo and getting on with treatment. Today's oncologist appointment was supposed to be a "we're ready to start chemo right away" informational session. It was not. Prior to the oncologist appointment, she was scheduled for a blood test, then 3 hours later (scheduling is tough on short notice at this place) an MRI of the head to ensure the cancer has not spread to the brain. Both doctors last week said that this was just a precaution, that they didn't think the cancer had spread to her brain. My gut wondered about this because mom certainly has seemed "out of it" the past few weeks, but I attributed it to the morphine. I was stunned when the oncologists came in an hour after the MRI was finished, and told my mom that there were malignant legions in her brain. She was supposed to start a clinical trial early next week consisting of chemo (taxol and carbo, along with a phase 1a drug from Pfizer). That plan has been scrapped now. She will be receiving a call tomorrow for an appointment with a radiologist, and her doctors have ordered 2 weeks of radiation to her brain, to commence early next week. Then, they will begin cycles of chemo (this time with other drugs, including cisplatin I believe). Just when we thought it couldn't get worse, this nightmare continues. I figured that my mom, brother, and sister-in-law, who were all present today at the appointments, were already so decimated with the horrible news that my questioning couldn't make it any worse. So I asked a bunch of pointed questions (fortunately I had written them down prior). One of them was, basically, what are the odds of the radiation and chemo working. It's all a haze now, but they were less than 50%. Last week we were told 75% minimum. Now we're down in the 40's. Horrible. Here's the real kick in the pants. I have been calling this lung cancer all along (as the doctors have). But my mom has cancerous tumors in both her stomach and her lung. This we've known. However today the oncologist said that a big problem is they just cannot, still, after a week's worth of pathologists and other experts looking over her test results, they cannot confirm whether it is lung or stomach cancer. Her lead onc today said that he's starting to think the stomach was the primary cancer and not the lung, but that that is a premature conclusion at this point and that, quite frankly, they now have two weeks to figure it out before chemo since mom will need to go through 2 weeks of radiation before the chemo can start anyway. Yesterday I was asking about how best to handle my mom's finances. Tonight I could care less about such insignificant things. mark www.sixstringtheory.com > Today was the worst, most horrible day. It was extra bad because, well, my > Mom was (believe it or not) looking forward to starting chemo and getting [quoted text clipped - 48 lines] > mark > www.sixstringtheory.com Honestly, Mark, whether the cancer is a primary lung or primary stomach really doesn't matter. She needs radiotherapy to the brain, and then you need to consider chemotherapy, which will be palliative, and you need to be sure that it will improve quality of life, because it will not improve survival time. Median survival for patients with brain metastates, whatever the primary site, is a few months. > Honestly, Mark, whether the cancer is a primary lung or primary stomach > really doesn't matter. [quoted text clipped - 4 lines] > Median survival for patients with brain metastates, whatever the primary > site, is a few months. I asked the lead oncologist about an updated prognosis today. He said, in a round-about way, that he couldn't give one. He also said, in a round-about way, that the oncologist at the initial hospital that my mom was diagnosed with lung cancer who told us she had a median life expectancy of one year was wrong to give a life expectancy because they are always wrong. I don't state the above in a defensive, or offensive way in response to your post Steph. I understand the time is most likely short contrary to what her oncologist is saying. He did say that it could be worse, that they have some patients who they admit immediately to the hospital for immediate radiation/treatment, and that my mom's cancer is not at that point. Quite frankly, I don't believe any doctors at this point. She's been jerked around by every one of them, every time, up to this point. But there is no alternative at this point. She, and I, nor her currentl lead oncologist (I asked this today), are ready to throw in the towel and go the hospice route. I do, however, suspect that that day will come within the next 8 weeks, after the 2nd cycle of chemo shows no progress. As for whether it is stomach or lung cancer as the primary, he downplayed the importance of it to us as well. I should have made that clearer in my post. I don't care. Once the cancer hit the brain, I knew the ramifications of that. He told us that it is their job to figure out now, over the next two weeks (during the radiation treatments to stop the brain legions) what the primary site was/is and the reason for that is to figure out which chemo drugs to give. mark www.sixstringtheory.com > > Honestly, Mark, whether the cancer is a primary lung or primary stomach > > really doesn't matter. [quoted text clipped - 17 lines] > the brain legions) what the primary site was/is and the reason for that > is to figure out which chemo drugs to give. Mark, you're not listening. Median means 50% do better than the expected median, 50% do worse. (Steph said "a few months". If she does better, consider that a bonus) She'll have fatigue starting about 2 weeks into radiation therapy..severe fatigue. She probably won't be eating, and/or with stomach involvement she'll need hospice there. Hospice can be there during treatments, as required. You need to start making arrangements for them to come in and talk with the family. They'll help you all to help her get her affairs in order while her brain is clearer thinking. (which will probably lead to getting a lawyer involved to make sure her paperwok is all current /accurate). You need to call her income support and tell them "less than 6 months" and also ask them if there'll be any "backpay" and if so, how much. That might go a long way to help pay some of the charge cards off and pay for her funeral expenses and/or lawyer and/or funeral expnses. Once you have that info go to the social work department with all that I mentioned earlier and get working on sorting out debts and assets and how to work the money end. Take responsibility - in such a situation a modest funeral can be arranged, in order to pay off as much of her charge card debt as possible. You have to figure out who'll pay for hospice care and who will be with your mother when hospice is not there. You and your brother (and partners, if such exist) may each have to be on shifts. Then start preparing her living area for someone who will be in palliation (radiation therapy and palliative dose of chemo). You're going to have start thinking "nurseways" from now on. If the chemo causes more trouble than it helps, it might be stopped or never started, if she's not well enough. For some reason, when stomach's involved, chemo isn't very effective (in many cases we've seen here). You don't want your mother suffering, do you? Hospice will be a wondeful resource to help her with eating and bowel movements and various tips about bathing and otherwise caring for her. (If you find you don't need them as much, you can have them back off a bit and hopefully save money that way). Get moving, Mark. J Hello, Mark. You should ignore the doomday naysayers, and other yokels here on this newsgroup. There are so many cases that turn around and prove the doctors dead wrong. Get the best treatment you can for her and feel good about what you've done! Peace. Alia > You should ignore the doomday naysayers, and other yokels here on this > newsgroup. There are so many cases that turn around and prove the > doctors dead wrong. Get the best treatment you can for her and feel > good about what you've done! Actually I have a correction to make: If it's a palliative dose of radiation therapy (vs curative), she may not have as much fatigue as I implied in my other post. J > You should ignore the doomday naysayers, and other yokels here on this > newsgroup. There are so many cases that turn around and prove the > doctors dead wrong. Get the best treatment you can for her and feel > good about what you've done! By the way, Steph's not a yokel; he's a very seasoned and competent physician and radiation therapist. He knows what he's talking about.. J >> You should ignore the doomday naysayers, and other yokels here on this >> newsgroup. There are so many cases that turn around and prove the [quoted text clipped - 5 lines] > He knows what he's talking about.. > J But maybe I'm a yokel too........... > >> You should ignore the doomday naysayers, and other yokels here on this > >> newsgroup. There are so many cases that turn around and prove the [quoted text clipped - 7 lines] > > But maybe I'm a yokel too........... ;-) good thing I wasn't sipping a drink at the time I saw this ROTFL J But are you a local yokel??? >>> You should ignore the doomday naysayers, and other yokels here on this >>> newsgroup. There are so many cases that turn around and prove the [quoted text clipped - 7 lines] > > But maybe I'm a yokel too........... > Hello, Mark. > [quoted text clipped - 5 lines] > Peace. > Alia Give us a few examples from your vast knowledge, then >>Hello, Mark. >> [quoted text clipped - 7 lines] > > Give us a few examples from your vast knowledge, then Thanks everyone, and I do mean everyone, for your responses. I'm in a very tough situation here. Her oncologists at Fox Chase seem to be optimistic still. After being told of the cancer spreading to her brain, I was in shock (as was my mom), but I pressed on with a lot of questions including when should treatment be stopped. You see, she has *yet* to receive treatment. That is what has been so frustrating more than anything. She went to the hospital over a month ago and was discharged a week later. The hospital she checked herself into is a rathole and the oncologist there said he needed to start treatment right away. We were told by folks who worked there (including a couple of relatives of mine) that he was a good oncologist, but my brother and mom and I all thought Fox Chase was the way to go. So she was discharged that afternoon, about 5 hours after her diagnosis went from "We caught it early - you're lucky" to that morning meeting an oncologist for the first time and being told "You have stage 4 lung cancer and have a median life expectancy of one year." So we left the hospital, and that afternoon I called Fox Chase. Took 2 weeks before we got an appointment to see an oncologist. They couldn't tell us anything because they said half of her forms were missing, and an EBG report was missing. So we get another appointment for a week later. Of course, the hospital holding the supposed missing forms tells us that no such forms exist, that we had all of them. So then we show up the week later, after being told the previous week that we would be starting treatment very quickly after this coming appointment, and that's when she's told the news of the lesions in the brain. I'm pretty pissed. And very upset because, quite honestly, it appears now that this 3 week delay we got by switching from her original hospital to Fox Chase has allowed the cancer to spread and her prognosis (based solely on what I've read on the internet - her Fox Chase oncs won't give a prognosis period and told me it is irresponsible to do so) is much shorter now. So now, I'm left with two options: 1. Listen to her oncologists at Fox Chase who told us that the percentages are as follows: 48% chance that the radiation will get rid of the legions in the brain. If that happens, then a 40% chance that the chemo will work for her. Those are terrible odds. But it is enough, if they are true and we're not being jerked around even more, they are enough that we have to give treatment a shot I think. And so far, my mother thinks so too (which is what matters - whatever she wants is what she will get). 2. Listen to what I've read on the internet and from this NG, which is to not even start treatment and start hospice. Now which option do you think I'm taking? mark > [...] > So we left the hospital, and that afternoon I called Fox Chase. Took 2 > weeks before we got an appointment to see an oncologist. They couldn't [quoted text clipped - 10 lines] > I've read on the internet - her Fox Chase oncs won't give a prognosis > period and told me it is irresponsible to do so) is much shorter now. Mark, I hear you but cancer starts many years before it shows up on scans. So now you have a better picture of what/where it currently is. > So now, I'm left with two options: > [quoted text clipped - 3 lines] > 48% chance that the radiation will get rid of the legions in the brain. > If that happens, then a 40% chance that the chemo will work for her. They would have to define "work", for me. Response, cure, help a symptom.. I suspect that they mean "response" as in shrinking the cancer. But then there's micromets that still haven't shown up as tumours anywhere (yet). You already admitted earlier that you know that cure is not possible. And it's not (curable) if it's adenocarcinoma lung or stomach cancer. > Those are terrible odds. But it is enough, if they are true and we're > not being jerked around even more, they are enough that we have to give [quoted text clipped - 3 lines] > 2. Listen to what I've read on the internet and from this NG, which is > to not even start treatment and start hospice. One (hospice) does not exclude the other (treatment). And Steph's Questions to Ask, ask that you consider the side effects vs the good the treatment will do. > Now which option do you think I'm taking? It's her decision, once she knows all the facts, Mark. Best wishes, J > Today was the worst, most horrible day. It was extra bad because, well, > my Mom was (believe it or not) looking forward to starting chemo and [quoted text clipped - 49 lines] > mark > www.sixstringtheory.com Mark, I am so sorry to learn that you mom's condition is worse than you all thought. And I completely understand your feelings of devestation. Hang on in there, on the bright side (if there is to be one) she has still been given a 50%. Once treatment does begin at least you will all feel that you are doing something positive against it. Warm Hugs Alayne > Today was the worst, most horrible day. It was extra bad because, well, > my Mom was (believe it or not) looking forward to starting chemo and [quoted text clipped - 49 lines] > mark > www.sixstringtheory.com FWIW My husband had NCSLC with mets to the brain. The radiation, of course, didnt cure it but made him feel better and helped tremendously with confusion, agitation, etc. Except for a little more hair loss, he had no side effects from the radiation. It certainly improved his quality of life. I hope your mother does well. Joy |
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