My lung cancer journey so far!

[curlysue50]

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.

[curlysue50]

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.

[eric byrne]

Hi Curleysue,

Welcome to LCSC,phew, that was quite a story you shared,as for which forum you put it in,all of them if you want as far as I am concerned,it is so worth the reading of.

I met up with Senator Andy Hill briefly on a LUNGevity Breath Deep fundraising stroll around Lincoln Park in Seattle,he described his lung cancer story to the participants at the end of this walk ,one where the cancer was so debilitating he was scarcely able to get around his home never mind about town,like you a non-smoker,but was prescribed Xalkori which had a wonderful effect of restoring life back to normal.

Long may your progress continue,one day at a time as they say,may you reclaim the health you enjoyed prior to the arrival of lung cancer.Looking forward to getting to know you,got to go,its indoor bowling night,no, not the ten pin type but an ancient game we play in Scotland (much more skill required LOL)

[Bud Baker]

Welcome, Susan! It sounds like you've been through a lot. Glad to see you're doing better now.