Alyssa125 Posted May 2, 2013 Share Posted May 2, 2013 I'm so glad I found Lungevity. My mom, age 59, has had Stage IV NSCLC for the past 4 years. She has both brain and bone mets. When she was first diagnosed the cancer was discovered in her bones and she had to do a cat scan to see that it started in her lungs. SO..we started late in the game. From the beginning it's always been contain the cancer as best as we can not cure it. The lung and bones were what we dealt with the first 3 years and then this past year it went to her liver and lastly the past 2 months it has spread to her brain. I live at home with my parents (I'm 32, single, no kids and moved back once mom got sick) and so my dad and I are the primary caregivers for Mom. Every day since the cancer has spread to her brain, it has gotten harder and harder for Mom. She has severe memory loss and trouble speaking and she is getting weaker and weaker on her left side. Currently she is on Tarceva and her doctors want to stop it because they feel that there is nothing more they can do; they want to put her on Hospice as well. We are in what might be the last month of her treatment. My dad wasn't ready to stop treatment so she is in a "trial" month and if her symptoms get worse, the doctors advice is still to stop the pill. If her symptoms get better than we can talk about continuing. Unfortunately we are in two weeks of this "trial" month and her symptoms have only gotten worse. So to end this, I'm glad that I joined this online support community because I could use some words of encouragement and just be able to connect to other people that are going through the same thing or taking care of family members with the same situation. Thanks for reading! Quote Link to comment Share on other sites More sharing options...
eric byrne Posted May 2, 2013 Share Posted May 2, 2013 Hi Alyssa, Welcome to LCSC,I am really sorry to hear of your Mums situation,I arrived here some 4 years ago at a time when I was feeling so low following my NSCLC dx,the buddies here offered me such a lovely welcome and support ,it made such a positive impact on me on my road to recovery,that I promised to myself,I will repay their generosity,by making such a welcome to any subsequent "newbie" that posts in here.Sadly many of the welcoming friends who replied to my first post are no longer with us,this dreadful disease took them so prematurely from us,when we still so needed their presence here. Given what you had written, it would have been much easier for me to avoid replying,better to wait for some of the other buddies to reply first.However,I feel I should share with my thoughts on your post regardless,one of the first buddies to reply to my first post was my dear friend Ned,who lived in Hawaii,he said the one thing everyone needs here Eric is hope,please always remember that.I had a friend who against impossible odds, was given only two months to live following his dx of SCLC and later of NSCLC,he managed to survive for 20 years,his story is well documented here,he became the UKs longest survivor of a Duel LC diagnosis.In my own case,both my GP and lung nurse told me I had only 2 years to live maximum,well this October sees my 5th year of survivorship,I have since discovered so many other long term survivors that have bucked the expirey dater given to them by medical professionals. I am not a doctor and I am least qualified to comment on your Mothers prognosis,I would say however,please dont give up hope for her,take the time to enjoy her company today,let tomorrow take care of itself.A saying that helped me in my most difficult days was, "Worry is like sitting in a rocking chair,it gives you something to do,but dos'nt get you anywhere". Please pass on to your Mum my best wishes for a successful outcome on her current treatments,may they be successful in bringing to her a complete recovery to full health. Quote Link to comment Share on other sites More sharing options...
Alyssa125 Posted May 2, 2013 Author Share Posted May 2, 2013 Thank you Eric for your kind post. I went to your link and read your story and wow what a great one it is! We, also, had a doctor tell us that my mom had months to live (4 years ago) and she has proven them wrong! Every day with her is a blessing, I truly believe that. I tell her every day multiple times how much I love her. I will add your continued success to my prayers and hope only the best for you. THank you for welcoming me on here, and your friend was right. Hope is what we are all looking for. Quote Link to comment Share on other sites More sharing options...
michellep Posted May 3, 2013 Share Posted May 3, 2013 Alyssa....I too am glad you found us and also sorry to hear about your Mom. I too was a caretaker for my husband. It was one of the hardest things I had ever done, but I'm also grateful for the years we had together. Knowing how hard it is to care for a loved one just please remember to take care of yourself as well. Please read through our many posts and you will find a wealth of information as well as support. Feel free to ask anything you wish and also to vent your feelings as well. I hope to hear from you soon ((hugs)) Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 4, 2013 Share Posted May 4, 2013 Alyssa, I'm so sorry for your situation, but happy you found Lungevity and the Lung Cancer Support Community. I am a survivor and not a caregiver, but you will find many caregivers that you can correspond with on this site-and we survivors are also happy to give you any information we can. It's a tough path to walk for sure, but I have found a lot of companionship here and I hope you do too. Cindy Quote Link to comment Share on other sites More sharing options...
Janet B Posted May 6, 2013 Share Posted May 6, 2013 Alyssa I am so glad you found us! This is such a hard path to be on, but it is made easier with the friendships you will make here! I am so sorry your mom is having such a rough time. Was brain radiation (either Gamma Knife or Whole brain) discussed? It is so important that you and your Dad take care of yourselves also. Accept help from others, take a break and do something just for you, eat well, get enough sleep. AND come here often with questions and for support. you are in my prayers, Peace Janet Quote Link to comment Share on other sites More sharing options...
Alyssa125 Posted May 9, 2013 Author Share Posted May 9, 2013 Thank you again for your kind words everyone. Janet, yes mom had whole brain radiation done immediately upon finding the tumors in her brain. She has many (at least 8 ), so they are not sure if they were able to fix anything but either way, I think it gave us some time. The radiation was really hard on her (obviously it is on everyone) so we are still dealing with side effects of that and side effects of brain tumors. It's hard to tell the difference for the doctors also. Next week we meet with the doctors again and a final decision will be made on whether or not to continue the Tarceva. I don't know if I mentioned this in my first post but the doctors wanted to stop it a month ago as they feel there is nothing more they can do but Dad wasn't ready to stop yet. So we were given a month to see if Mom shows any improvement and if not, she will most likely go on hospice. Still fingers are crossed and prayers are being said. Being a caregiver is difficult. I am trying to see to it that both my Dad and I are taking care of ourselves as well as Mom. Luckily we are on a few days of Mom sleeping through the night so I hope that continues because as we've found out, no sleep helps NO ONE. THank you again for reading~ Quote Link to comment Share on other sites More sharing options...
Alyssa125 Posted May 9, 2013 Author Share Posted May 9, 2013 Oh dear instead of that smiley face it should have been the number eight. I must have hit a wrong key. Sorry! Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 9, 2013 Share Posted May 9, 2013 I edited it for you!!!! Hugs and prayers..... Quote Link to comment Share on other sites More sharing options...
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