battleofbrooklyn

My mom just finished her 8th of 10 whole brain radiation treatments for some very small lesions found by an MRI two weeks ago. She seemed to be weathering the radiation pretty well until last night -- when she became very disoriented. I would ask her questions and she would give answers that didn't match. Or she would mix-up words -- like ambication for medication. She has kind of a glazed, confused look in her eyes. Anyone else seen these kind of symptoms before? The onco mentioned she might have "subtle, temporary diminished mental acuity" during treatment, but he compared that to taking longer to finish a crossword puzzle.

I think everyone is different, but for my mother, yes, the effects were somewhat cumulative. Meaning, that by the time she finished her sixth round of Cisplatin/Etoposide, she was feeling nausea more acutely, more fatigue and had lost pretty much all her hair. However, I will say the middle cycles of her chemo weren't that bad, in part because it took the first couple of rounds to figure out how to best manage her symptoms. For instance, she developed mouth sores after her first cycle, but by the third, we had discovered a medicine called Gelclair would heal them almost immediately. She learned what and when to eat on her chemo days to help with the nausea. I will say that one welcome cumulative effect of the chemo was decreased pain. The more chemo she got, the more her tumors shrunk, and the less pain she experienced. And for her, at least, pain was worse than anything else. It's almost impossible to predict how any one person will react to a particular chemo. The best advice I can give you is to keep a detailed log of when the side effects appear and how severe they are and work with your doctor and chemo nurse on managing them. For instance, don't be afraid to press for a different nausea drug if the one you're taking isn't working. The folks on this board are invaluable in suggesting medications and other relief methods you can ask your doctor about.

Yay! My mom has enough strength back that the doctor agreed to more chemo. (How weird is it when you're HAPPY someone is going to inject you with poison?). She didn't tolerate the Topotecan she had as a second-line treatment, so he's starting her on Taxol. One hour, once a week. Anyone have experience with Taxol for small cell?

Hello all. My mother just got the latest CT results: lung tumors shrunk (from radiation) and liver tumors grew (from no chemo in months, I guess). We have an appointment with the oncologist Wednesday and I just want to be prepared because I broke down at the last one when he used words like "too weak for more chemo" and "hospice." My mother is very weak -- in bed a lot, resistant to food and drink, wound up in hospital this week for dehydration. But she has only lost about 8 pounds, doesn't rely on oxygen, pain is under control, blood counts fine. She really wants to hang on until her grandchild is born in June. Do you know: how fast these liver tumors grow and how much the liver can take? is chemo the only thing that can keep them at bay? is there some kind of chemo (low-dose?) that can keep things stable with minimal side effects (unlike the topotecan, which walloped my mom), what determines if a patient is too weak for more chemo? Thanks...

My mother has also been resisting food/drink and has wound up in the hospital twice with dehydration in the last three weeks. She's only lost a few pounds, though, because at every turn I've been pushing something called Scandishake on her. It's a powder weight-gain supplement that has 600 calories when mixed with just one cup of whole milk. It's not super thick so it doesn't make her gag or overly full. It comes in vanilla, chocolate and strawberry. I get the vanilla and mix in a little flavored ice cream -- like coffee -- with the milk.

It's at least worth a try. If you can't tolerate it, you can re-evaluate then, but you won't know how your body reacts until you give it a shot. For instance, my mother got through six cycles Cisplatin/Etposide, which is very heavy-duty, with manageable side effects. She was pretty sick (tired nauseous) for a few days each cycle, but that was the trade-off for the tumor shrinking 90 percent and being able to enjoy most days during a four-month period. She just went through a couple of cycles of a different, second-line chemo -- Topotecan -- that was much tougher on her. So after consulting with the doctor, she stopped -- which any patient can do at any time. Now she's waiting to get some of her strength back so she can try something new and keep on living!

My mom lost some hearing -- she described it as a stuffed feeling in her ears -- after Cisplatin, which I guess is similar to Carbo. Drove her nuts at first, but she adjusted and it's slowly come back to normal. Of course, now she's got this raspy voice from radiation. She'd tale not hearing over not talking any day!

My mom used Gel-Clair for mouth/throat discomfort, mainly sores, when she was on chemo. Said it worked great. Most pharmacies can special order it for you. It comes in packets you mix with water and gargle with. Good luck.

She finished radiation (only 10 days worth) two weeks ago, and she could sleep all day, too. I would let her as long as it doesn't disrupt her night sleep and doesn't interfere with her eating and drinking enough. Also, maybe have her take a nice long walk through the house between naps. I noticed that after a week of the sleepies, my mom seemed weak on her feet and her breathing was a little rough, probably from not getting any exercise.

for your kind words. Made me feel like less of a loser. I called the doctor today at my mom's suggestion and insisted she get a CT scan before her next follow-up. I was so happy she brought it up, actually; made me feel like she hasn't given up. She did eat and drink better today and didn't sleep the entire day (lazed around, but watched some TV, took a couple of phone calls, talked more), so I'm really hoping those fluids did her some good -- and I will take her back for more next week if I feel she's getting dehydrated again. Wish I knew how to hook up an IV myself! Hopefully, each day will be a little better -- I'll let you know.

My mom (63, sclc) finished 10 rounds of radiation two weeks ago and had a follow-up with her oncologist yesterday. She's been in a terrible state the last few days -- sleeping all the time, not wanting to eat or drink, depressed. When the doc came in, she was lying down on the exam table and didn't even lift her head. I had assumed the fatigue was from the radiation, which I understood to be common, and my mom asked if that was the case. He busts out with, "I would have expected you to be feeling better this long after radiation. It could be the cancer that's making you this tired, which would be bad, because we can't really treat the cancer with anything but chemotherapy and you're too weak for more chemo." At this point, I started to mist up, which I have NEVER done at a doctor's appointment. Then my poor mom asked, "So I'm dying?" And I couldn't hold back. Tears just welled up and a few ran down my face. The more I tried to hold it in, the worse it seemed to make it. The doctor seemed really awkward, but my mom remained totally calm. She asked how much more time she might have if she did get strong enough for chemo ("hard to say") and whether they would make sure she wasn't in pain ("of course"). The doc then said, "We might want to talk about hospice at some point." Let me say, this doctor has been wonderful with my mother, who adores him. But she has never asked about prognosis and he has never discussed it, so it was sort of overwhelming to hear him give his "we may be at the end of the road" spiel like that. I felt terrible about crying and apologized to mom, explaining that I'd never heard her speak in those terms before and it was upsetting. She cried a little, too, but said she felt like she needed to know what is going on with her. Then we went to the chemo room for some hydration, and when I stepped outside for a minute, I heard the nurses talking about us. "So she really just broke down in there?" "Not the patient -- the daughter!" I was quite shocked. Even though I felt bad about crying -- which I have rarely done in front of my mother -- it seems like a lung cancer medical office would be used to that sort of thing. It's not like I was wailing and pounding my chest. But we have been relentlessly cheerful at all the previous appointments, so maybe they were just shocked? This morning she seemed really down and fatalistic, and I can't help feeling my crying contributed to that. Basically, I feel awful, like I let her down at a crucial moment. I did tell her that the fatigue could well be from the radiation, and that she could get her strength back, and that she could try another chemo, and that maybe she's not gonna be around for 20 more years, but who's to say she won't be around this time next year. But she didn't seem too convinced -- even though the fluids she got yesterday have pepped her up quite a bit. Anyway, thanks for listening.

My mom (63, sclc ext.) finished radiation two weeks ago. She had a few bad days (wound up in hospital for dehydration) and a few good days (went shopping) after treatment was over, but has now lapsed into extreme fatigue. By extreme, I mean that she would spend the entire day in bed, sleeping most of the time, if she could. I managed to get her up to eat or drink twice yesterday and she could barely keep her eyes open and begged to go back to sleep. I've gotten two opinions from two doctors: one says if she wants to rest, let her rest; the other says to make her fight the fatigue because staying in bed will only make her more tired. Not sure what to do now? Also not sure if this level of fatigue is normal after radiation and whether people bounce back from it? Thoughts...?

She had to delay her first-line chemo (Cisplatin/Etoposide) a couple of times -- once after she developed a fever and once for dehydration/weakness. My understanding is that it's not uncommon for this to happen, and in her case, the chemo kept working just fine (though she did relapse after treatment was finished). Because chemo is so toxic, it can do more harm than good if the body is too battered to deal with it. As for radiation, my mom is just about to finish two weeks worth and she's also lost her appetite -- for the first time since she was diagnosed. Don't laugh, but I found that nagging her to eat is helpful. She'll choke down some toast or a banana just to shut me up. She's also starting Ensure at doc's suggestion. Hopefully your dad's loss of appetite is just temporary. Good luck.

My mom seems a little peppier today - a combination (I think) of the radiation tech telling her that her fatigue was expected, that she should not fight it, and that it WILL pass, and my reminders to her of how miserable she was at some points during chemo but managed to get through it. She ate a small bowl of cereal for breakfast and then had a small bowl of chili soup for lunch and didn't sleep the entire day away. She even got on me about my long-delayed plans to buy a car because, she said, "we have a lot of things to do when I feel better." I know if she's nagging me, things are looking up! Thanks for all your advice and especially for letting me know that what she's going through is "normal."

My mother (63, extensive small cell) was diagnosed in April, underwent six cycles of Cisplatin/Etoposide chemo with great results, then quickly relapsed and started Topetecan regimen. After two cycles, onc canceled the chemo because it was doing more harm than good (chest tumor had not shrunk and mom was terribly weak, lost her voice, had bad SOB). He decided radiation was way to go for now, and she started last week while in the hospital being treated for dehydration (leftover nausea from chemo) and pain. Through all this, she had really kept her spirits up, believing she was going to be that one in a million person who lives 20 years with small cell, or that she could hang on until some new drug came along. With every setback, she has reminded herself that it's temporary and that she'll try something new. Until now. Four days into radiation, she has become incredibly fatigued and tired. She spends about 18 hours a day sleeping and has lost her appetite completely. When she does get out of bed, she seems very shaky. And she says she "feels so sick" though her pain and nausea are under control. On Christmas Day, she told my father she's dying and this morning she asked him if there were pills she could take if she couldn't handle it anymore. When I came over to take her to radiation, she said she didn't want treatment anymore - that it was making her feel terrible and it was pointless because the cancer was just going to come back. I promised her that I would never make her do anything she didn't want to, but pointed out that the doctor had warned us about the tiredness and said it would probably ease up in a few weeks. She seemed to rally a little and went to radiation, but was still incredibly depressed when she returned home. I'm just not sure how to handle this. I don't want to push someone past their point of futility or make them keep fighting for my sake, but I also don't want her to quit if this is really just a three-week setback and she will feel much better next month, maybe for a decent amount of time. Has anyone else been in similar straits and how did you handle it? Should I call in some friends and family for visits, even though my mother says she doesn't want to see anyone when she feels so terrible? Help!