citrinette Posted January 21, 2005 Share Posted January 21, 2005 Hi there, I don't even know where to start. I'm not even sure I'm in the right branch to post this. I am new, and I need help getting some answers. If this should be posted in another branch could you direct me? While my mother was in hospital for pneumonia they did some x-rays and was diagnosed with Adenocarcinoma with a Pericardial Effusion. There is a 2.6cm tumor on her left lung. They extracted the fluid in the pericardial effusion and found cancer cells. I've been told that she is in stage 4 and that it's not operable. After almost a week since the dx, the specialist finally sent the urgent request for an apointment with the cancer clinic, but they won't get an answer for another 4 days (over the weekend). The apointment may take even longer to obtain. Since my mother is living in Canada (with my sister there to help her), and I on the otherhand am living in Italy I feel rather isolated from the whole situation, and I'm having a hard time getting any kind of information. I doubt however that I'd be in a better position there. I need to know what kind of life expectancy she's looking at. Has anyone been through anything similar? Is there a survival rate? I've been doing some research on my own and I've found a few things that I'd be interested in learning about: one is a drug called IRESSA, and the other is Aloe Arboriscence. Does anyone know anything about these drugs and if they are effective ways of fighting off the cancer. Thanks in advance for your help, I've seen from the other posts that you are an amazing group of people. Open and helpful to everything! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 21, 2005 Share Posted January 21, 2005 Dear Citrinette, I am sorry you have need to find us. There is a branch of ALCASE (the Alliance for Lung Cancer Advocacy, Support and Education) in Italy. Here's a link: http://www.alcase.it/ Here in America ALCASE has a phone buddy system that links Lung Cancer Survivors. And this site is a wealth of information for both the newly diagnosed, family members and caregivers, as well as long term survivors. Another drug you may want to investigate on behalf of your Mother is Tarceva. Best Wishes, Fay A. Quote Link to comment Share on other sites More sharing options...
Anais Posted January 21, 2005 Share Posted January 21, 2005 Where in Canada does she live? If she's in Montreal, I could give you the name of my mother's oncologist at the Montreal General Hospital. If it's the case, write me an e-mail at anais.tatossian@umontreal.ca Good luck, Anaïs Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 22, 2005 Share Posted January 22, 2005 citrinette. Just want to welcome you to our site and want to just say how sorry you are so far from your Mother. I will pm you with some hints on how to access some of the information that you might find helpful. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 22, 2005 Share Posted January 22, 2005 Welcome. Boy it must be very difficult to be so far away from your Mom now. Glad to hear that your sister is with her and obviously you have internet access. Please keep us posted Donna G Quote Link to comment Share on other sites More sharing options...
Guest robd1 Posted January 22, 2005 Share Posted January 22, 2005 Hi there, I don't even know where to start. I'm not even sure I'm in the right branch to post this. I am new, and I need help getting some answers. If this should be posted in another branch could you direct me? While my mother was in hospital for pneumonia they did some x-rays and was diagnosed with Adenocarcinoma with a Pericardial Effusion. There is a 2.6cm tumor on her left lung. They extracted the fluid in the pericardial effusion and found cancer cells. I've been told that she is in stage 4 and that it's not operable. After almost a week since the dx, the specialist finally sent the urgent request for an apointment with the cancer clinic, but they won't get an answer for another 4 days (over the weekend). The apointment may take even longer to obtain. Since my mother is living in Canada (with my sister there to help her), and I on the otherhand am living in Italy I feel rather isolated from the whole situation, and I'm having a hard time getting any kind of information. I doubt however that I'd be in a better position there. I need to know what kind of life expectancy she's looking at. Has anyone been through anything similar? Is there a survival rate? I've been doing some research on my own and I've found a few things that I'd be interested in learning about: one is a drug called IRESSA, and the other is Aloe Arboriscence. Does anyone know anything about these drugs and if they are effective ways of fighting off the cancer. Thanks in advance for your help, I've seen from the other posts that you are an amazing group of people. Open and helpful to everything! hello citrinette, im very sorry to hear about your mom..im in similar position, my father diagnosed w./pneumonia, couple weeks, ago.. now xray shows, "spot", cancer..biospsy rsults next tues. like you,, state of shock.. ..7 short days,..ive read so much.... regarding diagnosis.., prognosis.. and although, we dont know results,, its my opinion.. that a 'prognosis' as not as important as the patients mind set.. .every case is different.. but i dont know...., this is all so new.. and im on this site just to read,, and vent..and understand.. and pray.. and i agree w.you.. amazing group of people on this site.. its helpedme.. i never imagined, i;d be doing this friday ngiht.. ciao.. buona sera.. i sono italiano.. e' nato in toscana..(livorno).. sta bene' ..tanati agurri..keep in touch..my best to you Quote Link to comment Share on other sites More sharing options...
Nicky Posted January 22, 2005 Share Posted January 22, 2005 Hi Citrinette I'm so sorry to hear about your mom. I'm in a similar situation - my dad was diagnosed in October with non-operable NSCLC, and I'm living in Australia while he's in Ireland. it's hard being so far away and I plan to head back there as often as I can. I went back after he was diagnosed. of course my parents told me there was no need for me to go back, but once i made my mind up to go they were pleased and the trip helped me a lot because I had felt so isolated over here. If you are in a position to take a trip home then it might be good for you and your family, but if you can't at least it's comforting for you to know that your sister is there. don't lose heart - you'll see a lot of people on this site bucking the statistics and surviving a long time with advanced LC. Nicky Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted January 22, 2005 Share Posted January 22, 2005 Citrinette,welcome to our support family.As mentioned above there are many here of all stages that are beating the heck out of the statistics. Sorry you have to be so far away from your mom.Hoping everything works out for you both. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted January 22, 2005 Share Posted January 22, 2005 My first suggestion is STICK AROUND HERE. There are LOTS of stories of hope here from people who are LIVING with Stage 4 LC. My mom was just diagnosed in November and we discovered it was Stage 4 in December. Like you, I'm a long way a way. Not in a different country, but several states away from her here in the states. Life expectancy will vary especially with Stage 4... different people will say different things. Focus on getting information on how to fight and be proactive, on being hopeful for yourself and for her, and on making the most of every day for all of you. What are phone rates like from Italy to Canada? I'm finding phone calls are big... and visits are tops! ((((hugs)))) to you. Quote Link to comment Share on other sites More sharing options...
ken f. Posted January 22, 2005 Share Posted January 22, 2005 hi cool named one: it is hard to say if you could know more being closer. perhaps, likely, a little sooner and maybe a little more clearly but considerable ambiguity seems to come with territory in this realm. but in any event there wouldn't be too firm an answer as to life expectancy even from a doc and even after a complete analysis has been done. that's one of the first things you will find about this-as in life generally there is not often certainty. there can be indications but any hard opinion can only really be based on statistics and, as i recall, i have never met one who fully conformed to all the statistics. it would be nice if you could find a good way to get and stay in touch with your loved one. i would suspect it probably best to talk about what the parient is feeling and think about without trying to give too specific answers and and try to get most factual details about medical condition from your sister if she is her "advocate." it is good to have someone go to medical appointments with the patient as it helps in the recollection of what was said, what is to be done, the getting of questions answered, etc. best of luck, ken Quote Link to comment Share on other sites More sharing options...
stand4hope Posted January 22, 2005 Share Posted January 22, 2005 Hi Citrinette and WELCOME! I sure wish you didn't have to be here at all, but since you do, I'm glad you found us. It's really hard to live so far away from our loved ones when they are sick. There are others here who have or had the same problem. If you and your sister have email, I would encourage your sister to give you every detail in emails. That's what I did with my brother and sisters when my dad was sick, and it really helped them a lot. I sometimes sent them 2 or 3 emails a day, even when things were ok. I would tell them what he said, what he looked like, funny stories about something another patient did, how much he ate or didn't eat - just LOTS of detail. It really helped. On the life expectancy, even if they give you one, don't believe it. They really don't know. All they can do is base it on averages and statistics and their personal experience. As you will see the longer you are here, LOTS of lc patients hit the date they were given and just kept on going and going and going. Once again, WELCOME! Love, Peggy Quote Link to comment Share on other sites More sharing options...
Justakid Posted January 22, 2005 Share Posted January 22, 2005 There is nothing I can really add other then to say welcome! Quote Link to comment Share on other sites More sharing options...
citrinette Posted January 22, 2005 Author Share Posted January 22, 2005 Thanks everyone. I really appreciate the support and all your help. I'm trying to keep my spirits high. As for the distance I can feel it rather strongly, however it's a good thing that cheap phone cards exist here, so I can call home every day without spending too much. I'm contemplating heading back home at least for a while, but I have work here that I can't really leave for too long without jeopardizing my situation. I have so many doubts about priorities. On one hand I feel that it's necessary to throw everything to the wind and head out to help, but I don't know if I should put my "so called" career on the line. How selfish does that sound? Geeze. There must be options I'm not evaluating, like going out for a while comming back and then returning after a while, maybe that would be the best option.... wow I'm really blathering. I'd beter cut short. Thanks so much, I'll keep updating with new info on my mom as soon as I know anything. Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 22, 2005 Share Posted January 22, 2005 Hello, Sorry to hear about your mon, specially as you are far away, but you sister is there for the moment and you are only one call away. If you know the hospital she is in, it would be easy to contact them for direct news. Hoping the best. J.C. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted January 27, 2005 Share Posted January 27, 2005 Welcome, I am sorry you are fighting this with your mom. I know the distance makes things harder. Despite recent publicity, there are many of us for whom Iressa has really done wonders! I have been on it for over two years and it has held me stable. I wish your mom the best. As for prognosis and predictions, I don't believe anyone has the answers. It is not always as grim as it seems. Quote Link to comment Share on other sites More sharing options...
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