CIndy0121 Posted March 25, 2015 Share Posted March 25, 2015 On August 20, 2014, I called my PCP with chest pain. They could not see me and sent me to ER. EKG and pulmonary embolism tests were fine. Chest X-ray showed "spot that needed to be looked at home closely"...looked like "infection"…treated with antibiotics... Had CT scan... Back to PCP... Referral to pulmonologist... Consultation... Pulmonary function tests...CT scan... Still looked like "infection" to pulmonologist also... Pre-op testing and clearance for bronchoscopy.. wait for results... Washings for any malignancies all negative... Getting all films in same place for comparison and 2 month follow-up scan... Condition had gotten worse...referral to thoracic surgeon.. PET scan. . Left lung biopsy... Pneumothorax... Chest tube... Hospital admission... Biopsy positive for cancer... Left lobe lobectomy? …no, right lung nodules also... Right lung biopsy... Also positive for cancer... Surgery "off the table"...automatic Stage IV in both lungs... Referral to oncologist... Frightening "bedside manner"…requested change of care center and oncologist... (relative) relief... Had my first infusion last Thursday, March 19. I was OK until "the worst day, Day 3" hit me hard... Physically and emotionally... Felt fine for 7 months and suddenly feel sick, driving this "home" as real... major meltdown... Checked in with nurse... Apparently my side effects, although devastating to me, are relatively mild... Going in Friday to speak with social worker re: suddenness of facing the diagnosis and dealing with family and needing some support... Found LUNGevity and What Next and researching clinical trials, Opdivo/nivolumab, immunotherapy, Tarceva, but I do not have the EGFR mutation... Thanks for any and all support, feedback, sharing. Next Chemo April 9. DonnaC and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
3aSherie Posted September 17, 2015 Share Posted September 17, 2015 What a nightmare year you had trying to get a correct diagnosis!!! Do you have any updates to share with us? - Sherie Quote Link to comment Share on other sites More sharing options...
CIndy0121 Posted September 18, 2015 Author Share Posted September 18, 2015 I can't figure out the different places for "Introduce Yourself" and "My Lung Cancer Story". I have written both, but someone read my introduction and asked about my cancer story. How do you navigate this site? Anyway, Sherie , I will update you on my treatment and how I am doing. I finished my first line treatment of carbo/taxol/avastin on May 21. My first 6-week scan showed improvement and my 12-week scan was "stable". So I continued on to pemetrexed(Alimta) maintenance and have had 5 infusions. My most recent scan showed "numerous new bilateral pulmonary nodules". Read the radiologist's report when I got home and am totally confused (until I see my onc on Monday). The scan report is worded "new nodules include: " and then describes the features from my previous scan report practically verbatim...location, size, etc. So, I'm not sure what's going on in there and it's frustrating! The doc said these reported nodules aren't large enough to be considered "progression", but we did speak briefly about the possibility of going to nivolumab after 1 or 2 more treatments and another scan. The report said the "new nodules" look like infection, so I did a zpak. My side effects have been a lot of hip, pelvis, thigh, knee, leg pain for the entire middle week; otherwise none. I want this whole new nodules question clarified first! How about you? Sent from my iPad using Tapatalk Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 19, 2015 Share Posted September 19, 2015 Cindy, Sorry I didn't respond to your March post. Sounds like you had a good first line treatment result and are now suffering what I call "Scanziety" - that special kind of anxiety known only to cancer patients sweating our results or experiencing "a little smaller...a little larger" radiology reports. I think you are right in wanting an answer to the new nodule issue. I'd sure want that answer! I had a particularly confusing run of scan results and my oncologist noticed a new radiologist was interpreting my scans. So he was seeing and remarking on long identified nodules but identifying them as new findings. My doc made a quick call to the radiologist and straightened him out. Is your doctor treating your cancer as chronic disease with the Alimta infusions? When I was in active treatment, I made the mistake of trying to tough out depression and fright feelings I had. I mean, soldiers don't get depressed! That didn't work and when I told my GP I was depressed he said: "of course you are, who wouldn't be." I started counseling and medication, then attended my first cancer support group. These worked for me. Glad you've reached out to someone. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
CindyA Posted September 22, 2015 Share Posted September 22, 2015 Hi Cindy, Welcome to the message boards. I see that you mentioned maybe needing some emotional support. We can connect you to a mentor who has shared a similar experience. If that is something you would be interested in, here is the link to get started. http://www.lungevity.org/lifeline Also I wanted to touch base on your question: I can't figure out the different places for "Introduce Yourself" and "My Lung Cancer Story". I have written both, but someone read my introduction and asked about my cancer story. How do you navigate this site? There is no right or wrong way to navigate here. Some people like to drop in a quick hello in the "Introduce Yourself" section and then let their supporters know that they have their full story in the "Share Your Lung Cancer Story" forum. Or some people just stay in one forum or the other. It's really just personal preference. If you have any more questions, please feel free to reach out to me anytime. How are you feeling this week? Quote Link to comment Share on other sites More sharing options...
CIndy0121 Posted September 22, 2015 Author Share Posted September 22, 2015 I feel great this week, but I have a treatment tomorrow. It was my "middle week" that was so painful. I'm having a chest only scan on Oct. 9 to see if the little spots that look like infection that we treated with antibiotics are gone, the same or larger. If they are not gone because they are not, in fact, infection, my onc said that even though they don't meet the criteria of progression, it would indicate that Alimta/pemetrexed isn't helping me so we'd be seeking approval for immunotherapy from my insurance company. I'm kind of hoping it was infection so I can "ride" Alimta maintenance as stable a while longer and keep Nivolumab "on the shelf". The weepy, emotional stuff didn't last long, either, Thanks for asking. I think a lot of it had to do with my questions about the new nodules as described on my scan report. That "heading" turned out to be typographical error! One that made a huge difference to the patient, but apparently didn't alarm anyone else. My husband is calling me for dinner. What a guy! Cindy Sent from my iPad using Tapatalk Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 23, 2015 Share Posted September 23, 2015 Cindy, So glad you are feeling better and really crossing my fingers about your 9 Oct scan. Hope those little nodules just disappear. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
kimsmith Posted November 6, 2015 Share Posted November 6, 2015 My granpa diagnosed with stag III lung Cancer. Doctor had removed the tumor by surgery. After surgery, he received chemotherapy. Now he is 54 and well. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 16, 2015 Share Posted November 16, 2015 Cindy, Any information on your October 9th scan? Did those little spots disappear? Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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