curlysue50

Eric: Thanks for your reply! I worked for many years, too and my job when I was diagnosed, was a contract position which was subject to end 2 months later. So, I also do not have a job to go back to. What I take from your answer is that I need to try some things I may not have tried before, find the things I like and keep myself busy. If I am sitting around being bored, I need to give something a try. I may not like everything, but there is bound to be something out there for me. May not be an overnight proposition, but I need to get out there and do something! It sounds like you keep pretty busy now and you really seem happy! That is such an encouragement. Thanks, Susan

I am have some challenges with trying to find my purpose and place in life outside of my cancer. I am back from the brink with a stage 4 lung cancer diagnosis on August 9th, 2011. Xalkori the genetically targeted oral chemotherapy drug has made significant response in pushing back my cancer. My life should feel back to normal, but my cancer is not gone. It is just not having the devastating effect it was having on me physically. So, how do I learn to live my life without letting cancer color every decision I make? I have all kinds of time on my hand and all my friends and family are telling me to do what I want to do. To enjoy myself and live life fully. It is like starting from scratch. Being a college graduate again and deciding what to do next. I will always have cancer. How do I live my life without letting that fact take away my joy in living? I am having fun in my life. I have only been "back to normal" just over 3 months now. It looks like I have more time than I had originally thought when I was first diagnosed. ( Although, no one knows really how much time they will have left). I attended Hope Summit 2012 and was so inspired to see the positive attitudes, love and caring among lung cancer survivors. I saw many people who have gone on with their lives and are living each moment with purpose. I am thinking this did not happen easily or automatically, but took courage and hard work to get to this point. I wondered if anyone had any advice on what worked for them? How they found themselves, even with their cancer, without letting cancer define who they are or what they are able to do. I just seem to be having a tough time finding focus. I worked full time for years and had my little hobbies, but nothing big enough to fill all the time I have now. I have been staying productive, cleaning and sorting closets, giving away clothes that I just don't wear, organizing my house and doing all those things that get left undone when you work a full time job. Now I think it is time to do something for me. Something that uses my talents and abilities and will give me some satisfaction in my accomplishments. Not that I am putting too much pressure on myself. I want to fill my mind and heart and share that with my friends, family and anyone else that can benefit from what I have learned in my life journey so far. I guess I have rambled a bit, but if anyone has any wisdom on the subject I would love to hear it. I heard Eric Byrne say at the Summit that he was able to get back to the person he was BEFORE his cancer diagnosis. Now that sounds positively wonderful. Because now I have the time to be that person AND pursue some of my heart's desires. Have a wonderful day! Susan Gamble

Judy: I am a bit late to post to this, but I also had bad neuropathy to thumb and fingertips of both hands during my carboplatin/taxol chemo. I finished October 2011 after 4 rounds. Neuropathy got progressively worse with each round. It is now May 2012 and the"tingle"/loss of sensation is definitely fading. I still lose my grip once in awhile handling small objects (some larger ones, too), but I can sometimes forget about it because it has gotten so much better. Our bodies can do miracles in healing themselves from the tough times they go through with treatments. I hope you are doing better. Your encouraging words have been helpful to me!

I attended Hope Summit this past weekend. I am a bit shy in a crowd, but I did meet some amazing cancer survivors. I saw people that had been diagnosed with stage 4 lung cancer, like me, that were still here after many years and those who were going through chemo and just starting their their journey. I think the biggest impact on me can be summed up in those two words,"like me". Such a support and comfort to know I am not alone and those at the Summit could truly understand who and where I am. The speakers and panels were wonderful. Full of information, compassion, and thought provoking ideas. My emotions have been pretty difficult to sort out and give attention to during the past 9 months. Many of the speakers spoke of things that touched my heart and truly made a lasting impact on me. I am grateful that there are so many people that have made it their mission to support and connect lung cancer survivors. I am very glad I was able to make this trip and attend this Summit. I did gain Hope by attending the event.

I really appreciated hearing replies from others who can truly understand what it is to have lung cancer. Family members love and support us, but they are not walking in our shoes. My three sisters are driving me to the Hope Summit sponsored by Lungevity this weekend. I am excited and nervous at the same time. It is the first long trip for me since my diagnosis. I have been doing well, but that could change at any time. That is the uncertainty of cancer. It will be fun to take a road trip with my sisters.(I am the oldest) and have some time without husbands and chldren to share and visit. And then the Summit will give me a chance to connect with other survivors! I am hungry for information and to hear how others live with their disease. My world was turned upside down and I. A m still in the sorting process. I am hopeful the Summit will help me make some decisions for myself, armed with more knowledge. I will let you know how it goes and maybe some of you will be there!

I think I may have posted my story in the wrong spot! Sorry for the long "introduction". I also posted it in the My story forum, after I noticed.

My name is Susan I am 52 years young. I am a wife, mother of 2 beautiful grown daughters and grandmother to a 4-year old grandson. I was diagnosed August 9th, 2011 with NSCLC adenocarcinoma. My left lung was completely collapsed and the bronchus obstructed. There were also nodes in my right lung. After CT scans, MRI's and PET scan I was also informed I have mets to my brain, bones ( ribs, spine, hips and legs), liver ( large tumor and many "spots"), and my left adrenal gland. I had a chronic cough for about 3-4 years previous to this. Had been diagnosed a couple of times with severe bronchitis, but follow up x-rays were never performed. I am a never-smoker. I fall of 2010 I started to experience shortness of breath. Not able to do things I had previously been able to do. Walking across my yard or going up 2 or 3 steps into work became a challenge. My primary care doctor was very focused on getting my diabetes in control, which was becoming very difficult. She prescribed an inhaler and Prilosec to try and treat the chronic cough. In February 2011 I was coughing violently and started vomiting several times a week. And then daily. At my 2 month rechecks for my diabetes, I begged my doctor to help me with my cough and told her of my repeated vomiting. She told me the Prilosec sometimes took 6 weeks to help with the cough which she felt was being caused by acid reflux. Two months later I was coughing so bad at my doctor appt that the nurse became concerned and how long I had been coughing. I told her several months and she took my temp. Low grade fever. Doctor listened to my lungs and sent me for an x-ray. Bronchitis. Antibiotics. Prednisone. Still coughing and vomiting. This was end of April. Doctor prescribed more antibiotics, more prednisone ( which was really making my blood sugars out of control. Finally, she sent me to a pulmonary specialist. He prescribed a steroid inhaler and set an appt for a follow-up x-ray. That night at home I passed out and fell to bathroom floor. I was home alone and called 911. I was okay by the time EMS got there, but they suggested I go into ER. I chose not to take the ambulance ride, but waited for my husband to get home from work to take me. After 2 CT scans, they scheduled a bronchoscopy for the next morning. I was admitted to the hospital. August 9th I met with my pulmonary doctor and got the biopsy results. LUNG CANCER. Adenocarcinoma. I had him write it down. This was all new to me. And terrifying. I got a referral to the University of Michigan Comprehensive Cancer Center. All my family lives in Ann Arbor and I had lived there for a number of years. After more CT scans, PET scan and MRI's they determined the Mets were much more extensive than they had thought they would be. I had stage IV lung cancer. I was to begin what would be 4-6 rounds of carboplatin/taxol chemotherapy. Along with Zometa to try and strengthen my cancer- ridden bones. I began to lose my hair after 2 weeks. I continued to vomit, lost almost all my appetite, lost taste, beginnings of neuropathy in fingers and toes, had severe dehydration, was hypotensive and passed out 3 times in succession one morning after my shower. I lost 12-14 lbs every 3 weeks. My CT scans showed cancer had become stable but was not shrinking. So, after 4 rounds my doctor and I decided the effects were not worth doing the last 2 rounds. I was to take 90 days off and come back to U of Michigan for follow up CT scan. I went home for the holidays on Thanksgiving weekend. I had stayed with my parents during the chemo rounds. I had never really stopped vomiting. I went home to try and prepare for a Christmas with my girls and husband in the north of Battle Creek. I did not feel great and started to feel worse and worse. It had been just over 30 days since my last chemo. I managed to get through the holidays. Pain in my hips and back was so bad I could not sleep at night. Even with oxycodone. I made a call to my doctor and the weekend of New Year's Eve was admitted to the hospital. More MRI's this time full spine and brain, along with body. The cancer was spreading and growing again. After my chemo had ended I had been tested for the ALK gene translocation. Xalkori/crizotinib had been approved for use outside of clinical trials. It is a genetically targeted chemotherapy capsule that works on killing only those cells with that specific gene mutation. 45 out of 50 of my cancer cells from my biopsy had the ALK (anaplastic lymphoma kinase) mutation. I qualified to use the Xalkori to treat my cancer. I could take it at home twice a day. I have had no significant side effects from the Xalkori. After 2 weeks I had a day without vomiting. It was so significant that I marked the date on the calendar. NV (no vomit) January 30, 2012. After about 2 weeks, I quit marking the dates. I am still not vomiting. At 8 weeks I went in for CT scan. My left lung has re-inflated and is functioning Bronchus is reopened. There was still a small amount of fluid near bottom, but my oncologist felt it would resolve. Nodes in right lung are gone. tumor on adrenal is gone, although there is a slight thickening of organ. Tumor in liver is significantly smaller. Many of the enlarged lymph nodes are normal size. All and all the report came back as significant improvement. I go back in 3 months and they are going to do a more extensive CT scan with contrast. Oncologist feels we will continue to see improvement. He was very pleased that I responded so well to the Xalkori. I feel very blessed. At my first appointment my oncologist told me they could not cure me, just treat me. And hope the treatments could buy me some time. I am not able to drive again. I can pick up a laundry basket, sleep through the night, bake, fix a meal and grocery shop alone. There are no promises given with any treatment, but the results of the Xalkori are more than I hoped. I know what it feels like to have your life slipping away. It is truly a miracle to feel alive again. I am struggling a bit trying to find a place for myself in the world again. I had worked full-time for many years, so being home, feeling good, and so much time to fill is a challenge. The rest of the world goes on. Once you have Cancer, it is always with you. Maybe it is not a neon sign every day, but even a small note folded away in your wallet is something you have to keep in mind. Thanks for listening. It is good to know you all can understand what I have gone through and what I will continue to battle.

My name is Susan I am 52 years young. I am a wife, mother of 2 beautiful grown daughters and grandmother to a 4-year old grandson. I was diagnosed August 9th, 2011 with NSCLC adenocarcinoma. My left lung was completely collapsed and the bronchus obstructed. There were also nodes in my right lung. After CT scans, MRI's and PET scan I was also informed I have mets to my brain, bones ( ribs, spine, hips and legs), liver ( large tumor and many "spots"), and my left adrenal gland. I had a chronic cough for about 3-4 years previous to this. Had been diagnosed a couple of times with severe bronchitis, but follow up x-rays were never performed. I am a never-smoker. I fall of 2010 I started to experience shortness of breath. Not able to do things I had previously been able to do. Walking across my yard or going up 2 or 3 steps into work became a challenge. My primary care doctor was very focused on getting my diabetes in control, which was becoming very difficult. She prescribed an inhaler and Prilosec to try and treat the chronic cough. In February 2011 I was coughing violently and started vomiting several times a week. And then daily. At my 2 month rechecks for my diabetes, I begged my doctor to help me with my cough and told her of my repeated vomiting. She told me the Prilosec sometimes took 6 weeks to help with the cough which she felt was being caused by acid reflux. Two months later I was coughing so bad at my doctor appt that the nurse became concerned and how long I had been coughing. I told her several months and she took my temp. Low grade fever. Doctor listened to my lungs and sent me for an x-ray. Bronchitis. Antibiotics. Prednisone. Still coughing and vomiting. This was end of April. Doctor prescribed more antibiotics, more prednisone ( which was really making my blood sugars out of control. Finally, she sent me to a pulmonary specialist. He prescribed a steroid inhaler and set an appt for a follow-up x-ray. That night at home I passed out and fell to bathroom floor. I was home alone and called 911. I was okay by the time EMS got there, but they suggested I go into ER. I chose not to take the ambulance ride, but waited for my husband to get home from work to take me. After 2 CT scans, they scheduled a bronchoscopy for the next morning. I was admitted to the hospital. August 9th I met with my pulmonary doctor and got the biopsy results. LUNG CANCER. Adenocarcinoma. I had him write it down. This was all new to me. And terrifying. I got a referral to the University of Michigan Comprehensive Cancer Center. All my family lives in Ann Arbor and I had lived there for a number of years. After more CT scans, PET scan and MRI's they determined the Mets were much more extensive than they had thought they would be. I had stage IV lung cancer. I was to begin what would be 4-6 rounds of carboplatin/taxol chemotherapy. Along with Zometa to try and strengthen my cancer- ridden bones. I began to lose my hair after 2 weeks. I continued to vomit, lost almost all my appetite, lost taste, beginnings of neuropathy in fingers and toes, had severe dehydration, was hypotensive and passed out 3 times in succession one morning after my shower. I lost 12-14 lbs every 3 weeks. My CT scans showed cancer had become stable but was not shrinking. So, after 4 rounds my doctor and I decided the effects were not worth doing the last 2 rounds. I was to take 90 days off and come back to U of Michigan for follow up CT scan. I went home for the holidays on Thanksgiving weekend. I had stayed with my parents during the chemo rounds. I had never really stopped vomiting. I went home to try and prepare for a Christmas with my girls and husband in the north of Battle Creek. I did not feel great and started to feel worse and worse. It had been just over 30 days since my last chemo. I managed to get through the holidays. Pain in my hips and back was so bad I could not sleep at night. Even with oxycodone. I made a call to my doctor and the weekend of New Year's Eve was admitted to the hospital. More MRI's this time full spine and brain, along with body. The cancer was spreading and growing again. After my chemo had ended I had been tested for the ALK gene translocation. Xalkori/crizotinib had been approved for use outside of clinical trials. It is a genetically targeted chemotherapy capsule that works on killing only those cells with that specific gene mutation. 45 out of 50 of my cancer cells from my biopsy had the ALK (anaplastic lymphoma kinase) mutation. I qualified to use the Xalkori to treat my cancer. I could take it at home twice a day. I have had no significant side effects from the Xalkori. After 2 weeks I had a day without vomiting. It was so significant that I marked the date on the calendar. NV (no vomit) January 30, 2012. After about 2 weeks, I quit marking the dates. I am still not vomiting. At 8 weeks I went in for CT scan. My left lung has re-inflated and is functioning Bronchus is reopened. There was still a small amount of fluid near bottom, but my oncologist felt it would resolve. Nodes in right lung are gone. tumor on adrenal is gone, although there is a slight thickening of organ. Tumor in liver is significantly smaller. Many of the enlarged lymph nodes are normal size. All and all the report came back as significant improvement. I go back in 3 months and they are going to do a more extensive CT scan with contrast. Oncologist feels we will continue to see improvement. He was very pleased that I responded so well to the Xalkori. I feel very blessed. At my first appointment my oncologist told me they could not cure me, just treat me. And hope the treatments could buy me some time. I am able to drive again. I can pick up a laundry basket, sleep through the night, bake, fix a meal and grocery shop alone. There are no promises given with any treatment, but the results of the Xalkori are more than I hoped. I know what it feels like to have your life slipping away. It is truly a miracle to feel alive again. I am struggling a bit trying to find a place for myself in the world again. I had worked full-time for many years, so being home, feeling good, and so much time to fill is a challenge. The rest of the world goes on. Once you have Cancer, it is always with you. Maybe it is not a neon sign every day, but even a small note folded away in your wallet is something you have to keep in mind. Thanks for listening. It is good to know you all can understand what I have gone through and what I will continue to battle.