Peggy H Posted May 3, 2003 Share Posted May 3, 2003 My younger sister received bad news this week. She's been on chemo for the past six months. She recently started having balance problems - her cancer has spread to her brain, again. Supposedly, the new growths are too large for Gamma Knife but I'm taking her to consult with the Neurosurgeon who did her first Gamma Knife 1 1/2 years ago, anyway. The radiation oncologist tells us that she is near her lifetime limit for full brain radiation, she can do up to 12 focused treatments, that's all. Her cancer has spread to liver, bones, she has malignant pleural effusion, malignant ascites & is now continuing to progress even while on chemo. Her oncologist told us he's used all the approved chemo drugs for NSCLC, experimental drugs are probably all that are available now, but, no one is going to take someone with active brain cancer into a clinical trial (quote). Plus, does she "want to spend time traveling back & forth (to Chicago or Madison or Mayo) for treatment when she doesn't have much time left?" Both the oncologist and radiologist are giving her "weeks" to live. (Note: up until the hour of this appointment she was still driving, teaching every day, taking care of her home & kids.) Here are my questions: for chemo she's had taxol, carboplatin, taxotere, gemzar, and navelbine. Zometa for the bone mets. Her oncologist says cisplatin is the same as carboplatin, which she's had twice & it is no longer working. He says there are "older" drugs but they don't work well & have terrible side effects. Anyone have experience with other chemo drugs for NSCLC? Secondly: any warning signs or symptoms I should be looking for that indicate the brain mets are getting worse or that her liver might be failing? (Other than pain which, thank God, she doesn't have.) Just to be fair - we've been pretty satisfied with her medical treatment - both her oncologist & radioloist have spent hours & hours with us, always listen, always address concerns, always try to treat symptoms & side effects, always available when she needs them . . . but, she's not getting better. We may just both be in denial. I've spend hours every day of the past two years searching the internet for something, anything. I just don't know what I would do with all this horror if I didn't have this board to go to. I wish I could have talked her into joining it, I just know that she's terrified, and no matter how many of us are around her, she feels alone. Cancer sucks. If you have those hats made, Dave, I'll buy a gross. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 4, 2003 Share Posted May 4, 2003 Peggy, my prayers are with you and yuor sister. So sorry the news is so dire. I have nothing to suggest in the way of other treatments. Don Quote Link to comment Share on other sites More sharing options...
Rosanne Posted May 4, 2003 Share Posted May 4, 2003 I can't help with suggestions either. Best of luck and I'll say an extra prayer. Rosanne Quote Link to comment Share on other sites More sharing options...
AdaW Posted May 4, 2003 Share Posted May 4, 2003 Dear Peggy, What about Iressa? My information may be outdated because I was going to start Iressa late last fall but had surgery instead--crazy. Anyway, it was my understanding at that time that the clinical trials for Iressa were over and it was now available through a compassionate use program. My oncologist here in GA was not accepting any new patients in the program but my oncologist in Pittsburgh was going to put me on it. Forgive me for not having more detailed and up-to-date information for you, but I think you should ask the oncologist about the possibility of having your sister take this drug, if it is still available. It is manufactured by Astra-Zeneca-I know they have a website. Good luck to you and your sister. She sounds like she's an amazing person to still be driving etc.! Wishing you the best. Ada Quote Link to comment Share on other sites More sharing options...
Peggy H Posted May 4, 2003 Author Share Posted May 4, 2003 Thanks for your suggestion, Ada. I should have mentioned that Sally was in the Expanded Access Program (EAP) for Iressa last year. It didn't work for her. At all. Since she had Iressa she is also not eligible for the Tarceva trial. Quote Link to comment Share on other sites More sharing options...
AdaW Posted May 4, 2003 Share Posted May 4, 2003 Dear Peggy, I've been thinking of you and your sister since I read and responded to your post last night. I don't really know what to say except that I admire you very much for helping your sister throughout her ordeal. That means so much to the person with cancer and keeps them alive longer, I believe. My family can't do enough for me and I feel very, very blessed-- eventhough I have this dreaded disease. If your sister is a spiritual person, she may benefit from talking to a priest or minister right now. I know when I get very low emotionally, I remind myself that I am never truly alone in this because God has me in his loving care. That has given me such comfort during some very frightening times. I want you to know that I will be saying special prayers for you and your sister. I am thinking of you. Ada Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 4, 2003 Share Posted May 4, 2003 Peggy, My heart goes out to you and your sister. You have done so much to help her and I wish I could offer you some other course of treatment. I know that there are lung vaccines being tried successfully for NSCLC but do not know if trials are continuing. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
CDarlyn Posted May 4, 2003 Share Posted May 4, 2003 I will keep you and your sister in my thoughts and prayers. Making decisions about what to do with the time left is hard... if there is no other treatment available ... what about hospice care? No more traveling and you are getting medical care. I have links to hospice sites and other information you may be interested in, at my website. http://c.d.luce.home.att.net Your sister sounds like a very special woman and is blessed to have you as a sister. Always, Christine Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted May 5, 2003 Share Posted May 5, 2003 Peggy sorry to hear that!!!! I am hoping everything works out Quote Link to comment Share on other sites More sharing options...
cathy Posted May 5, 2003 Share Posted May 5, 2003 Peggy...If you look in the general archived forum under shark cartilage there are all different links to vaccine trials that John had found for me....check them out your sister may qualify for them..... good luck....cathy Quote Link to comment Share on other sites More sharing options...
john Posted May 6, 2003 Share Posted May 6, 2003 Here are a few links to trials. Some have very few exclusions. http://www.clinicaltrials.gov/ct/gui/ac ... 2Cstage+IV There is a gene called P53. It is a tumor supressor gene. Like the name suggests it causes cancer cells to die. If this gene becomes mutated, the resulting cancer is hard to treat, because the mutation causes the body to lose its ability to cause the cancer cells to die. There has been some evidence that soy may correct the mutation. You can get organic soy milk at the grocery store - the chocolate flavor actually tastes good. Here are two trialsl for the P53 vaccine. HERE IS ONE IN MADISON!!! http://www.clinicaltrials.gov/ct/gui/sh ... F?order=20 http://www.clinicaltrials.gov/ct/gui/sh ... F?order=10 Quote Link to comment Share on other sites More sharing options...
john Posted May 6, 2003 Share Posted May 6, 2003 Dave G, Is this your Doctor? Joan Hoff Schiller Peggy - Dr Schiller is the doctor running the vaccine trial in Madison. I believe this is Dave G's doctor. In anycase, how is your sister. Is she still working, etc? If her performance status is good maybe she will qualify for the trial Quote Link to comment Share on other sites More sharing options...
Guest Jonathan Posted May 8, 2003 Share Posted May 8, 2003 I would suggest that if you still want to go aggressively, in an event to maximize her time left, you should go with the radiation to the brain, and do chemotherapy at the same time. One drug that you ought to ask the onclogist foris CPT-11 (camptosar)- it is a very potent chemotherpay drug that is showing dramatic results in non small cell and small cell lung cancers. Ask the oncologist to use it on her, it may help her for a while!!! Also, they are trying thalidomide in lung cancer too. another potent drug you could ask for is cytoxin (cyclophosphamide). It is a chemotherpay that i know has been used in non- small cell lung cancers. one moe drug that i know is used in non small cell and small cell lung cancer is topotecan. ASK ASk ASK !!! I hope for the best for you, you are a wonderful sister....may god bless you...please email me and tell me how she is doing. Jonathan te11t@aol.com Quote Link to comment Share on other sites More sharing options...
Cary Posted May 8, 2003 Share Posted May 8, 2003 If you are unable to get into a clinical trial why not try low dose chemo. You can use the same drugs a previously used, since low dose works in a different way than traditional chemo. Taxotere seems to be a little better than the others. http://www.cancerprotocol.com/index.html Cary Quote Link to comment Share on other sites More sharing options...
Peggy H Posted May 12, 2003 Author Share Posted May 12, 2003 I can't thank all of you enough for this information. It gives me something to work on. She was shot down for another Gamma Knife procedure for the new brain mets - they seemed to think the rest of her cancer is out of control so she's not worth it! (Even though her last scans showed she was stable.) My sister seems to be growing weaker by the minute, I don't know if it's the radiation, the cancer, or what, but it's scaring the crap out of me. I've been spending most of the last week taking her to doctors, tests, etc. She has her next CAT Scan next week. The doctors won't give her any more chemo until after the radiation is finished (next Monday), but this information on low dose chemo is really intriguing. Everyon should check out that site. Her doctor did mention something abut CPT 11 - maybe we'll be able to try that. There is no way she is ready to give up yet. Even if the doctors have. Thanks again, guys. Please, please, please, keep letting me know when you have new information. I just don't have time every day to do my web searches, anymore. Oh, and Jonathan - don't worry, I ask PLENTY of questions. All of my sister's doctors know that when they see ME trot in next to her that they just might as well relax, they're going to be spending the next hour or so with us! (Heck! She's past spending over $250,000 on treatment so far. They BETTER sit down and relax.) Quote Link to comment Share on other sites More sharing options...
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