Amy P Posted June 9, 2004 Share Posted June 9, 2004 Hello all! I have spent the last couple of days just reading and absorbing and I cannot even begin to tell you what a comfort these posts have been. My mother was diagnosed in Jan 2001 with NSCLC - a non-smoker. She had complete pnuemonectomy (sorry - I know I butchered the spelling!) on left side. Onc did not believe they got all the cancer - Mom chose not to persue additional treatment and was all clear until Mar of 2004. Had bronchoscopy for stomach problems, results came back concerning, subsequent CT and PET scans show cancer back in multiple lymph nodes and two tumors on right lung (non-operable). She has been on Iressa for a month and we go back to Dr. Friday for checkup. I think it will be positive as her cough has subsided significantly over the past couple of weeks. The past few months have been so emotionally charged...I have been going to all Dr. appt as my parents don't hear everything the Dr. tells them and what they do remember it is hard for them to communicate back so I have been designated listener/questioner. My mom's onc is awesome but also very cautious. She has not given us any timelines but has encouraged Mom to go where she wants and see who she needs to see while she still feels good and she has been. I am the youngest of 3 kids and the only girl so I am VERY close to my mom and understand her and her wishes so I have been designated her decision maker when the time comes - an overwhelming designation, I might add. Your posts have given me more hope than I have had over the past few weeks and for that I am thankful! What makes this all the more devastating is that we lost my mother-in-law to ovarian cancer almost 2 years ago (she was dx 2 months after Mom) and we were with her when she lost her battle. I feel like I am in a BIG BLACK HOLE with no escape - it is all so overwhelming. Well I must go and get some work done - it has taken me over an hour to write this because I have to keep wiping the tears away. Thanks again to all of you and I am sure I will be around a lot - I am going to need it! Quote Link to comment Share on other sites More sharing options...
Donna G Posted June 9, 2004 Share Posted June 9, 2004 Why doesnt your Mom take chemo? Is she afraid of side effects? Why not radiation? Ablation? She still has alternatives . Welcome to our family. Please keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
cathy Posted June 9, 2004 Share Posted June 9, 2004 Hi Amy, Welcome to a place where nobody wants to be. I was wondering about other treatments for your mom too..Has her doctor given her any options? Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 9, 2004 Share Posted June 9, 2004 Hi Amy,I was diag apr 03 w/nsclc stage 3.I had my entire left lung taken out in june 03.In Oct 03 they found a new tumor blocking airway in my right lung.Inoperable also.I went thru 35 radiation treatments and 7 rounds of chemo(carboplatin and taxol)tumor was signifcantly reduced and(fingers crossed)has remained stable now since mid Jan 04.There ARE options available out there.Don't take No for an answer.Enduring treatment can be hard but rite now (dont know for how long)My quality of life is very acceptable considering all things.There are many longer term survivors on here as well you will be hearing from.Hang in there and tell mom to keep fighting. Quote Link to comment Share on other sites More sharing options...
Ry Posted June 9, 2004 Share Posted June 9, 2004 Welcome to the group. I see from your signature that your mom is currently on Iressa. I hope this is the miracle you are looking for and that it holds the cancer stable. As everyone above has said, she has lots of treatment options. All the best to you and your mom. Rochelle Quote Link to comment Share on other sites More sharing options...
Jana_W Posted June 10, 2004 Share Posted June 10, 2004 Hi Amy Sorry you had to find us. My Mum has Stage IV NSCLC and was diagnosed in July last year. It sure is a rotten thing to be going through. Please don't be a stranger, and come here as often as you need to. Wish warmest wishes Jana xxx Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 10, 2004 Share Posted June 10, 2004 Welcome to the family, Amy. I'm so sorry you had reason to find us, but glad that you did! Becky Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 10, 2004 Share Posted June 10, 2004 Hi Amy and WELCOME! I can really identify with your words about finding hope here. My husband was diagnosed in early August 2003 and I didn't find this site until March 2004. That's 7 months of ripping apart the worldwide web looking for hope. I spent hours and hours and hours looking for something, ANYTHING, that gave me some hope. I even logged into some websites with a fake name and pretended to be a nurse just so I could get the REAL scoop. There's a lady named Christine that hosts a website especially for people who have lost a loved one to lung cancer because she lost her mother to lung cancer. From the links she has posted, I found HOPE and it's spelled LCSC!!! Once again, welcome, and please keep us posted about your mom and also how you are doing and coping. We'll listen to anything - well, almost anything. There are some things you might do or say and Ry will try to fine you 10 bucks, but just between you and me, she just pretends to be the boss of us! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted June 10, 2004 Share Posted June 10, 2004 Dear Amy, Welcome to the site and I'm very sorry to hear your mother's cancer has come back. You will have lots of support here. Hope your mother is out enjoying herself! Sometimes that's the best medicine! Sharon Quote Link to comment Share on other sites More sharing options...
Amy P Posted June 10, 2004 Author Share Posted June 10, 2004 Thank You Thank You Thank You - for all of your kinds words and messages of hope. They made me cry not out of sadness but because I have finally found a place where I my thoughts and fears will not be a burden and I can share freely without ruining my make-up 50 times a day so I will primarily try to post at night! As for the treatments questions, my mom and her Dr. are not sure that she could tolerate the chemo - she does not do well with strong drugs (she ended up in the hospital for severy dehydration after taking prednisone for 5 days). If the Iressa does not work then she will try a course of radiation, if that doesn't work who knows???? I was suprised that she would agree to the radiation - my mom is a quality of life advocate and has told me she does not want to put us through what we went through with my MIL who died fighting - I told her she needs to do what she wants to do and if that means nothing I am with her or if it means chemo I am with her. She is precluded from most trials because of prior cervical cancer. The most important thing right now is that she is living her life - just spent a weekend in my hometown and all of my parents old cronies hosted a huge catfish fry and gathered for a night of catching up and they leave on 6/17 to spend a week in Canada. Thanks again to all of you and my sincerest hugs go out to all of you I will be here for the long haul! Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 10, 2004 Share Posted June 10, 2004 Amy, I'm glad you posted so that we can get to know you and your Mom. I would think deciding on further treatment would be good, because it can always be called off if it proves to be too difficult or reduced, etc. There are options and more every day. It is wonderful that your parents are continuing with truly living life and I hope Iressa proves to be the answer to enable them to do so for many years to come. Blessings, Margaret Quote Link to comment Share on other sites More sharing options...
jamie Posted June 10, 2004 Share Posted June 10, 2004 Amy, Welcome to the board, and I want to wish you, your mom, and your family the best of luck with all of this. My daughters name is Amy too, and at the ripe old age of 7, she feels the need to inform everyone that her Papa has cancer. Kids are a trip! Best of luck and welcome Jamie Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 10, 2004 Share Posted June 10, 2004 Amy, Welcome to the board. Ultimately it is your mom's decision, if she choses no treatment. But it should be HER option, not one given by the oncologist. Some of us refuse to say uncle, no matter how rough the therapy gets. Keep us posted, so we can be as supportive as possible.... XOXOXOX Prayers, always MaryAnn Quote Link to comment Share on other sites More sharing options...
kimd Posted June 10, 2004 Share Posted June 10, 2004 Amy: Welcome to our "family"! When I ready your post, it reminded me of how I had to be the "listener/adviser" for my dad. I always have to have answers and I formed a wonderful relationship w/my dad's onc. He knew whenever he told me news, that I would have many questions and would check with my LCSC buddies to see if he was heading us in the right direction. These folks helped support me through every step of the way and helped with so many questions I had. Reading others experiences helped me learn so much. You sound like you are the strong one like me (I also have two siblings -- I'm the middle child) and you will be so much help to your mom. May God help you and your family through this battle. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 11, 2004 Share Posted June 11, 2004 Dear Amy, Welcome! I'm sure you will find lots of info and support here. I, too, am the youngest of 3 and only girl...and very close to my mom so I can relate on so many levels. I also go to as many appointments as I can for the same reasons. I'm glad you are here. Let us know how we can help. Quote Link to comment Share on other sites More sharing options...
paddy Posted June 11, 2004 Share Posted June 11, 2004 So sorry that you had to seek us out Amy, I have heard that Iressa has helped a lot of people, let's hope your Mom will be one of them. Positive thoughts for your Mom and all the family. Paddy Quote Link to comment Share on other sites More sharing options...
Joe B Posted June 11, 2004 Share Posted June 11, 2004 Welcome Amy, Sorry you have to deal with this disease. You will find, that like your Mom, there are many non-smokers here that have lung cancer-- including myself. Glad you found us. Peace, and God's blessings to you and yours. Joe Quote Link to comment Share on other sites More sharing options...
elnodel Posted June 12, 2004 Share Posted June 12, 2004 Welcome, Amy, So sorry that you've had to join the rest of us but glad you, like us, found this site where we can keep each other going. I'm glad your mother has someone like you to stay in her corner, hard though it is for you. She sounds like she knows what it is that she wants and that she is open to new ideas as well. That's a great combination. I'll keep my fingers crossed that the Iressa works. Hang in there! Ellen Quote Link to comment Share on other sites More sharing options...
Lisa O Posted June 13, 2004 Share Posted June 13, 2004 Hi Amy, I am on Iressa. It has worked well for me for quite a while so far - and I hope it works well for your mom. Welcome to the group. Lisa Quote Link to comment Share on other sites More sharing options...
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