AmyLW Posted September 22, 2003 Share Posted September 22, 2003 Hi. My Name is Amy. I am sorry to be here and sorry you all are here. My Dad has squamus cell carcinoma. He has gone through radiation, which didn't help, chemo, didn't help and now he is on iressa.Which is part of what brings me here. His face swoll up yesterday and he was so sick he couldn't get out of bed. Has anyone had experiance with this at all? I am hoping to be able to offer some support and I know I will be asking for some too. Recently my Father in law was told he has a cancerous tumor on his kidney and he has spots on his liver(Which we are hoping mean nothing). About a year or so ago, my Mother in law had a melanoma removed(succesfully) and pre cancerous cells from her breast. Anyway. I am A mommy to 2 miracle babies and I have a wonderful husband and I try to focus on them, but I have been very overwhelmed. My Dad called me to tell me he is making his funeral arrangements, and I completely fell apart. Thank you for any help you can offer. Amy Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 22, 2003 Share Posted September 22, 2003 Amy welcome. Sorry I never have taken Iressa but others here have so they will help you, we do that around here. I can feel how overwhelmed you are , sounds like one thing staked on the next without much of a breather in between. Sounds like your 2 little ones are the sunshine. Donna G Quote Link to comment Share on other sites More sharing options...
Ry Posted September 22, 2003 Share Posted September 22, 2003 Hi Amy, So sorry to hear about your dad. My husband has been on Iressa for several months and is doing well with it. He has not been ill like your dad but has experienced the diarhea and rash. Your dad needs to make sure he is wearing a sunblock cream as it seems to make you photosensitive. Maybe he swelling is from the sun? Just a guess. My husband is having good results with the Iressa so far, I wish the same for your dad. Make sure he is getting plenty of fluids, he may be dehydrated. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 22, 2003 Share Posted September 22, 2003 Hi, Amy! Sorry about your dad. Your dad should check with the onc about his swelling. My wife was on Iressa for a month, and developed pneumonia, so now she can't take it. That only happens in rare cases, according to statistics. Keep connected here for info and support. Don Quote Link to comment Share on other sites More sharing options...
john Posted September 22, 2003 Share Posted September 22, 2003 If his face is swollen you should tell the doctor. That *might* be a sign of Superior vena cava syndrome. Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 22, 2003 Author Share Posted September 22, 2003 Oh gosh I just looked up Superior vena cava syndrome and that is likely since he has a tumor in the lymph node in his neck. Oh gosh. Thank you everyone for the welcome and the advice. I told my Step Mom he needed to call right away this am. I am not ready for this. My Mother died when I was 15 and now I am 30. It just seams like too much. Quote Link to comment Share on other sites More sharing options...
bluebayou Posted September 22, 2003 Share Posted September 22, 2003 Hang in there Amy...take a deep breath and take it one step at a time. Its hard but u must try.. Lots of love and support here. Glad u found us. Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted September 22, 2003 Share Posted September 22, 2003 Hi Amy! I am sorry you have to be here, but am glad you are. This board is great for support. My mother has squamous but wasn't on that medication, but I agree that you should tell your Dad to check with his doctor, sweeling can't be good. Is he drinking enough water? When Mom went through chemo she became really dehydrated and they doctors didn't even tell her that she would, so the next time she went throught it she got hydrated and was not sick. I don't know what to say about the funeral arrangements, I know how hard that is to take, but maybe it is his way of getting through it. I don't know how it is in your family, but we joke in mine to get through times like this, when Mom (Judy thought she was going to die in 2002 she kept saying, "this is going to be my last Christmas" and I kept saying, "well Mom, you hate Christmas you should be happy" And then we would laugh, and she is still here, but just had surgery because she had a mass on her lung. It is hard to do, but you have to be strong for him, you can cry or be angry away from him., but don't let him see it. I cry so much by myself, but when Mom gets on the phone I am the queen of positive. It is scary, terrifing even, and it is alright to be upset, but try not to in front of him. You don't want him to worry about you. Ya know? I don't know you but feel like we have similiar situations going on, please email me if you need anything, stephnewyork32@aol.com, I am always online these days, and sometimes it is easier to talk to people you don't know. I feel like I can only lean on people from the board these days, as my friends can't handle seeing me go through this, and my family, well they are going through it too, so I know how hard it is. Welcome and my thoughts are with you and hoepfuly Mom(Judy will be back on soon and she will meet you, because she has a good way of helping others. *hugs* Stephanie Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 23, 2003 Author Share Posted September 23, 2003 I may take you up on that sometime. I found out, last night he was up most of the night with leg cramps. They gave him pain meds and asked him to come in tomorrow vs the 29th, just to make sure all is okay. They told him it was common for faces to swell. I have no idea. i am lost. I try to never cry and be positive for him, but that is not always what he wants. He is a realist and he feels his time is ending. I try to counteract everything with a positive coment and he gently reminds me how everything has failed so far. He tells me we all die sometime. I know that. But, it all seams unfair. I feel just numb. You know, we never cried in the begining and he seamed to try to make us cry. I don't know. I am just so tired. My sisters and I atleast seam to be getting closer. We are learning to like each other. Sorry. I just needed to ramble tonight. I have had this feeling we are nearing the end. Amy Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 23, 2003 Share Posted September 23, 2003 Amy, I took Iressa until I was taken off it due to side effects. I can send you more information on the side effects I experienced, but I don't think they were the same as your dad's. As for him planning his funeral, it's something he feels he needs to do. I'm sure that if he didn't have the cancer and out of the blue stated that he wanted to plan his funeral, you STILL wouldn't be okay with it, even knowing that everyone does eventually die. Cancer seems to bring home the fact on a personal level... I haven't planned my funeral yet, just working on the financial aspects of what happens if I'm gone. I re-wrote my will (had to, I was married to someone else when I wrote the first one, just hadn't gotten around to it...). Although it is an emotionally hard thing, I also felt relieved when it was finished - this was one less thing for me to worry about doing if things start on a downhill slide and will give me more time to spend with my loved ones. Odd reasoning, but it works for me! Take care, be sure to see YOUR doctor to measure your stress/anxiety and get on some medication if needed. Daddy will be leaning on you in time to come, as will your mother. Be prepared...you've switched roles. My thoughts are with you, Becky Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 23, 2003 Author Share Posted September 23, 2003 Hi. It's not just that he is planning..He has arranged. It is good, that he will have it done, one less thing to do. But it brings a finality. I am not ready for this. I lost my Mother officailly at 15, but she left when I was young and All my Grandparents are gone. I won't take meds. I am still nursing and seeing as I have reason to be upset I won't medicate. I know some people do, If I felt upset and I had no stress, I would, but there is so much more going on then just his cancer or my FIL's tumor or just daily stuff. So I expect to be stressed until it is all resolved. Meanwhile I am just trying to reach out to people who understand and can relate. It is dificult when no one can relate. Or you feel like a burden when you need an ear. We have a history of depression on both side of my family, so I am watching and if my grief and sadness should effect my standard of living, I surely will see my way to my Dr. Thank you for sharing your pov. It helps so much to know,both sides. I am greatful for anyone who takes the time to offer support. Amy Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 23, 2003 Share Posted September 23, 2003 Color me blonde! When I read your "I am still nursing" I thought it was your CAREER!! Ya know, RN, LPN... Wondered what having a job had to do with not taking stress medication - it was what led me to the anti-depressants I took about six months prior to diagnosis....d'oh! But seriously....my grandparents arranged (and paid for) their funerals many, many years before any of them were expecting to die. Was a sobering thought at that time, it's not JUST his diagnosis that makes it seem that way. Please don't see it as giving up on his part, even when he gets through all of his treatment and everything turns around and the cancer goes away, there will be something else to trigger arranging a funeral (i.e. reaching a certain "magic" age, like 92....). I guess the hard part is realizing that when you are RACING through getting older (13 to see the "Good" movies, 16 for driving, 17 for graduation/college, 18 to vote, 21 to drink) you don't realize your parents are getting older, too. My dad turned 60 this year! Seems like just yesterday it was my GRAMPA turning 60! Stay positive, stay informed....and stay healthy yourself. Please give a yell when things are overwhelming, I'll help you all I can! Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted September 24, 2003 Share Posted September 24, 2003 Amy, So sorry you have to be here, but what a great group of people you have found. I unfortunately can relate to you and feeling overwhelmed. I have a 17 month old girl and a loving husband, both whom I adore. My beloved mom was diagnosed in March with lung cancer. About three months later we found out my dad has liver cancer. My father in law went in for a biopsy on a mass they found on his kidney...thank god it was benign. I wonder somedays how I keep it all going, but I always find a way. Feel free to PM me if you ever want to chat. Sounds like you have two amazing little ones that bring you much joy. Take care of yourself...that is very important. All my best, Andrea Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 24, 2003 Author Share Posted September 24, 2003 Yes, I do have two amzing children. I have a 20 month old son. and my daughter will be 8 this weekend. They did not come easy. We had so many miscarriages. So they are truly a special gift. My Dad went in today and they think the cancer may have spread to his spine and bones now. He did give up. He said, they told me a year and it has been a year and he is stopping working. He is litterally waiting to die. My Father in law went in fo a scan of his liver today, to see what is going on. ANd he has a tumor on his kidney. My Mother in law beat a melanoma on her head and abnormal cells in her breast, this year. So I am there with you Andrea. It seams this is just the way life goes. (((Hugs))) So nice to meet you all! Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 24, 2003 Share Posted September 24, 2003 AmyLW, I just noticed you are in Minnesota. Anywhere near the Twin Cities? Our support group meets one afternoon and one evening a month. We range in age from 29 to about 75 with plenty in between. We welcome family and those who have loved ones with lung cancer who live far away. Donna G Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 24, 2003 Author Share Posted September 24, 2003 Yep- I am in Cambridge. But I work eves. Mon-Fri. Do they have weekend meetings? I am 30, so I am guessing I would fit right in. Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 24, 2003 Share Posted September 24, 2003 Sorry , only on Tuesdays . When I work 3-11:30 the afternoon meeting even cuts it too close. There is another support group but again they don't meet weekends. Donna G Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 24, 2003 Author Share Posted September 24, 2003 Well, That wouldn't work. Me and my husband work opposite shifts, he works days and I work eves so that we do not have to put the kids in daycare. ALthough he may be getting laid off soon,,, and that will make it possible, hopefully only temporarily. Well, I may still try to make something work. My main problem is my FIL is the only one who watches my kids and now with him being sick he can't, but I may have to find a way to make this work. Quote Link to comment Share on other sites More sharing options...
David P Posted September 25, 2003 Share Posted September 25, 2003 Hi Amy. As you have found, this is a WONDERFUL place to be, but for all the wrong reasons. I can't help marvel at how people on this board "take in" newcomers, making them feel right at home, and part of the family. It's kind of like the way country folk will always take in the stranded traveller, offerring food and shelter without a second thought. That's how I've always been made to feel in this unique place. Sorry to hear how your father's treatments aren't going so well. But he certainly sounds like he's got a handle on it all. I know how difficult it must be for all of your family to accept what's going on, but I think if I'm ever faced with what your father is going through, I hope I feel the same way he does -- "Everyone has to go some time; I've led a full and rewarding life; and, I have a beautiful family that will miss me, but they know I will always love and be with them." Having said all that, you know Amy, from what I've witnessed on this message board, just because your dad has made all those funeral arrangements, and feels the way he does, he's just as likely to be here for a few more years - I've seen it happen. Take care Amy. David P. Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted September 26, 2003 Share Posted September 26, 2003 Hi Amy, My mother, Judy B, had the same type as your Dad and they tell her all the time, she is going to die soon, but she is still fighting after two years. Hers spread to her spine too, and I guess that is VERY common with Squamas,(spell?) and anyhow, she had two vetebre removed on the 16th, and eventhough there still may be some in her spine, they are going to do chemo. How advanced is your fathers? Mom's was only in that one area, as far as they could tell, I have been reading stuff on spinal cord compression, (did he have that?) and it has scared me to death! I can't tell you how awful it is when I read things like, patients can usually survive a maximum of 120 days, but then I talk to Mom and her doctors are being so positive, and I feel better. Also when she was first diagnosed, aside from having an 80% chance of dying while they removed part of her lung in 2002 during the surgery, they told her she has less than 5% chance of survival, and in Tucson they are calling her a miracle. So the point is, you never know, and I hope you Dad will still fight, giving up won't help him, and he may have a bit longer to spend with you and his family?I send you hugs, and not to worry about the funeral planning, some people ar ejust that organized. I am like that, I have things planned , just in case. Not a place to be buried, but I am 34 and healthy, but I told my family if I died and they buried me in Tucson I would haunt them forever!! *hahahah* sorry, tangent, but the point is, your Dad's planning may help him feel better. Hang in there and know we are all here for you!! (((((((((HUGS))))))))))))))))))))!!! Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted September 26, 2003 Share Posted September 26, 2003 I love your hair!!!!!!!!!!!!!!! how fun! Amy didn't his hair make you smile?? *hahha* great!! Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 27, 2003 Author Share Posted September 27, 2003 Well, To start with, it was inoperable, and it was in his lung, I believe 5 inches by 5 inches, they had to do radiation right away to get the pressure off of his bronchial tube, to take the immediate danger away, but during the radiation 6 more started, and it was in his bronchial tube and somewhere else, I can't think right now. But then they tried chemo and it did nothing. It got worse. Now he is on iressa, but switched to taking it every other day, because he is in so much pain. They are not trying to save him, just make him more comfortable during the time he has. He goes in on Monday for a scan to see if it is in his bones and/or spine, which they believe it is. He arranged the funeral to take the stress off of us. He will not be buried, and does not want his body on display. I am much more comfortable with it all today. It takes me a while to adjust between each change. I am going to see him on Sunday. It will be hard. My step mom said he looks so fragile, like the littlest bit of wind will send him flying. That will be hard. My strong proud Daddy. BTW, The hair did give me a shocked smile! Quote Link to comment Share on other sites More sharing options...
AmyLW Posted September 27, 2003 Author Share Posted September 27, 2003 I know what I forgot..The cancer has spread to his Lymph nodes and he has a tumor growing in a lymph node in his neck. We fond that out the end of July. Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted September 27, 2003 Share Posted September 27, 2003 HUGS!!!!!!!!!!!!!! I am so sorry to hear all that, I wish I could do something, stupid, evil cancer Please feel free to email if you need anything, or just someone to listen to you. I know this is hard. We are all here for you. *hugs* Quote Link to comment Share on other sites More sharing options...
teresag Posted September 28, 2003 Share Posted September 28, 2003 Prednisone (steroids) can cause facial swelling. It's called "moon face" because the face gets round and big. If you've seen Jerry Lewis recently, (he was interviewed on Larry King not long ago) you've seen the effects. - Teresa Quote Link to comment Share on other sites More sharing options...
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