Kberns Posted January 13, 2015 Share Posted January 13, 2015 Been lurking for awhile not sure if I had the energy to introduce myself...but here I am with my story! Moved from South Florida to the very tip of North Florida in Dec. 2012. Caught a bad chest cold and had a cough that lingered. In the meantime, the house we bought was found to have black mold all through it so we started demolition Feb of 2013. I continued to cough through the construction and was totally stressed out. Sept 2013 had a chest x-ray that they said showed nothing. Spring of 2014 came and I still had the drip cough, especially at night. Went for a check-up and was diagnosed with asthma and given all kinds of drugs. By July I knew something was wrong as all these drugs were not helping. Went for another chest x-ray and a pneumonic-type infiltrate at base of right lung was found. Pulmonary dr believes it was on the Sept 2013 x-ray as well. Went for CT scan and found 2 cm right lower lobe, infrahiliar mass with presumed obstruction of the bronchus. Pet Scan followed with the lower right lobe, low level metabolic activity left lobe of liver, and hypermetabolic sclerotic foci over T5. right 6th rib and possible 2nd rib. August-MRI liver..2 lesions largest 1.1 cm Sept-Liver biopsy-negative, no cancer found Sept-Vertebral biopsy- showed keratin positive cells with metastatic non small cell carcinoma Sept-Brain MRI- clear With oncologist blessing here at Mayo, went to Moffitt in Tampa to get into research trials. MOFFITT: Oct 2014 visit & CAT scan Mass is now 2.1 found enlarged lumph node, thyroid gland nodules Oct 2014- Lung biopsy for clinical trial and genetic mutation Oct 2014 Brain MRI-clear Nov 2014- Rejected due to inconclusive PDL-1 positive or negative Dec 2014-Lung biopsy for a different trial. Dec 2014 CT scan thorax, abd & Pelvis..pneumonia found Dec 2014 MRI brain-clear Rejected again due to no cancer found in the tissues sent....DISAPPOINTED Jan 6 2015 Back at Mayo, port in place, chemo started. A long and winding road for sure. Thankfully I can still fast walk a few miles a day, but fatigue is setting in. Thanks for being here....this is just what I needed and I hope I can help someone else with this crazy process. Karen Quote Link to comment Share on other sites More sharing options...
eric byrne Posted January 14, 2015 Share Posted January 14, 2015 Hi Karen, Welcome to LCSC,its always a pleasure to welcome a new guest,sorry to hear of your health problems I do wish you every success on the road back to full health.Interesting hearing about your mould problems with the house you recently purchased,so extensive it had to be demolished?I suppose my interest stems from the fact I am a retired college Lecturer in Construction and Design,one of the subjects I taught was the science of building defects and timber decay.I do hope the new build has now been completed and you are enjoying your new home.Can you book me in for two weeks this summer for my vacation LOL. Best Wishes. Quote Link to comment Share on other sites More sharing options...
Kberns Posted January 14, 2015 Author Share Posted January 14, 2015 Thanks Eric for the welcome wagon! I did not demo the whole house....the can of worms kept opening as we started with the master bathroom and found the mold had extended to the master closets due to a small leak from windows. I then had a mold detector come out and found mold in the other 2 bathrooms, entire kitchen and family room. These houses are built with wood and I unfortunately have a flat roof as well. On top of that I live 2 blocks from the ocean. On the bright side, I do live at the beach!!! Door is always open so book your trip! Quote Link to comment Share on other sites More sharing options...
CindyA Posted January 14, 2015 Share Posted January 14, 2015 Welcome to the group Karen. I'm sorry you've had such a long journey. We are here for you. Feel free to "lurk" as much as you like. I believe everyone here has something to gain from each other. Thank you for sharing your story. Please keep us posted on how you are doing. Sending you positive and healing thoughts. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 14, 2015 Share Posted January 14, 2015 never give up the quest for trials!!! I feel that those that can participate are pioneers in LC research... ask away we are always around to answer questions and check out all the other great forums..... Quote Link to comment Share on other sites More sharing options...
Kberns Posted January 14, 2015 Author Share Posted January 14, 2015 Thanks Cindy & Randy! It is a nice feeling having people to talk to about this journey. I have to give up on the trials for now as I really put my health on the back burner chasing them. It was a bad experience because of the people I dealt with. There was no communication and I would carry by cell to the bathroom just in case they called. I hardly left home because I did not want to be in like Home Depot having that conversation with them. Then, weeks would go by and I would leave tons of voice mail but nothing came of it. This went on for months. Hopefully Mayo will be getting some trials back this year which I would not hesitate to go for. After one chemo treatment I am feeling great but with weird side effects no one mentioned to me. I can't stop eating and my energy level is extremely high. Thankfully I am thin so the eating won't hurt me too much! CindyA 1 Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 15, 2015 Share Posted January 15, 2015 keep your weight up some and your gonna feel better.... be careful not to get to thin.... if you want to do some digging on your own for one... this is best link. I moderate Cinical trials forum here ...https://clinicaltrials.gov/ct2/home Quote Link to comment Share on other sites More sharing options...
Kberns Posted January 15, 2015 Author Share Posted January 15, 2015 Thanks Randy for the link, I get notifications from clinicalconnection about trials as well. I live on the northern tip of Florida so I tried to look for trials in this state. After traveling to Tampa and back many times, I am so relieved to be back at Mayo where they really treat you like a human being and not some number. No problem keeping the weight at the rate I am going! Once these darn stitches from the port heal I will be back to weight lifting which helps my weight as well. So glad to have 'met" you! Karen Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 15, 2015 Share Posted January 15, 2015 like wise and glad to hear from ya keep posting......LOL and lifting!! Kberns 1 Quote Link to comment Share on other sites More sharing options...
CindyA Posted January 16, 2015 Share Posted January 16, 2015 Hi Karen, I wish I lived in Florida today! It's so cold here in Dallas. I'm glad you are at a place where they treat you nicely. That's necessary! I wanted to share a link with you concerning Clinical Trials. LUNGevity partners with EmergingMed, a clinical trials matching service, to help you with the decision of whether to participate in a clinical trial. EmergingMed helps you identify which lung cancer clinical trials you may be eligible for. The clinical trial navigators can also guide you through the process of getting enrolled if you choose to take part in a clinical trial. Clinical trial navigators are available Monday through Friday from 8:30 am to 6:30 pm ET at 800-698-0931. Learn more about this free service and even fill out an online profile at http://www.emergingmed.com/networks/LUNGevity/ Please keep posting! Quote Link to comment Share on other sites More sharing options...
Kberns Posted January 16, 2015 Author Share Posted January 16, 2015 LOL Cindy..highs today might get to 50 and low's in the 30's! The sun just came out for the 1st time in 10 days. I am close to the Georgia Border in Atlantic Beach so it gets cold here! Please stop sending those cloudy sky's and rain our way!!!! Thanks for the link on clinical trials. For now I am done looking after what Moffitt put me through. Because they can't find a genetic mutation in me it keeps from from entering almost all the trial, or so I have been told. I do not want to to another lung biopsy at this time so I am hoping I get great results with the carbo/alimta. As I have already had 1 treatment, I have 2 more to go before the CAT scan. Fingers crossed!!!! Quote Link to comment Share on other sites More sharing options...
CindyA Posted January 16, 2015 Share Posted January 16, 2015 Crossing my fingers! I look forward to your future updates. Kberns 1 Quote Link to comment Share on other sites More sharing options...
Kberns Posted January 31, 2015 Author Share Posted January 31, 2015 Hi Everyone, Had my 2nd treatment Tuesday so here is my update: UGH!!! Once the steroids wore off Thursday I began to get foggy, cold and blah feeling. Yesterday I could hardly get out of bed..could hardly eat..not nauseous but feeling like I was going to be, headache, cold, backache, metal taste with drinking water, etc. I had a good pity party with myself and I am up and moving again today. Still have a foggy brain today and cold hands but I will try to walk some miles to get the circulation going. Looking forward to tomorrow as I know I will be back to normal!! Hope everyone else is doing great!!! Karen Quote Link to comment Share on other sites More sharing options...
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