rayj3497

Hello All, It's been almost 6 years since I have joined this group. Yep, 6 years. I guess I should reintroduce myself. Hi. My name is Raymond Johnson. My first Dx was 1 April 2017 with stage 2B nsclc. Then, 1 August 2017, the doctors at MSK removed my right lung and upgraded me to stage 3A nsclc. Then there was the 7 surgeries, 2 cardiac arrest, bleeding out, 3 strokes, 2 blood glots, and .. anyway. My journey is written here somewhere. I am just here to update everyone. Like as I have mentioned, it has been 6 years on my journey. My survivor journey.Now. I play trumpet with 6 community bands. I am doing 3 shows every week this summer. I am also working on getting a small group together to work the local ski resorts come winter. I am an active member in the local music community. It hadn't been easy or simple or without pain, which I still do have, but I an enjoying life every day. There is hope. Peace and Love to All Rayj Rayj3497@gmail.com

Please forgive me, it's been awhile since my last update. I have been busy. So, here it is. When i was in sloan , my lab results were a mess from the 5 chest surgeries, but the values were improving. the values that was higher than normal was getting lower and the lower ones were getting higher. the hospital did say i could go home and have my pcp take care of the rest. btw, tencentriq wiped out my thyroid gland prior to surgery, so synthroid levels needed to be monitored. anyway, i get home and the values start to go in a negative way especially my red blood cells. on 09/21-2017 rbc 2.75, hemoglobin 7.7, hematocrit 24.1. on the following week i had another test done, i personally don't have the results but, i got a call from my pcp to go to the er. for an immediate blood transfusion. off i go to albany medical center where i get 2 units of blood and my values got me out of the danger zone. when i left there a week later i was told my hemoglobin was 9.6. low but going in a positive direction, also while i was there i had the hospital do a ct scan with contrast of my chest, abd, pelvis and legs to try to find out why my values dropped. they found no bleeding but did find the dvt in my left groin and a popliteal aneurysm in my right knee. once again nothing more they can do. i did have a appointment with sloan on the 10 oct so i just waited. yesterday , 10 oct went to sloan , had blood drawn and my values were rbc 3.68, hemoglobin 10.1, hematocrit 31.1. so things are moving in a positive direction and good enough for chemo. they started my chem schedule with gemcitabine and go back next week for gemcitabine and carboplatin. well , that's all for now. i with get through this and beat this. sorry but before i go today i have to share one more thing. kinda funny. i was whinny to the doctor yesterday that i couldn't do all the things i could of did last year. i guess i sounded like a new recruit or private/airman when the doctor said, " mr. johnson you should glad to be alive and remember you only have one lung " just a reality adjustment i guess. i just can't accept , right now, "the new normal". i will fight. i will win. until next time. peace and love

well, i just read the path report from my surgery and i have T3N1M0, stage IIIa NSCLC. just sharing. BTW, i have told everyone and still telling everyone , I will beat this..... peace and love to all

well , i start on stage 2 for treatment, ........3 oct i first week and first day with treatment of gemcitabine, second day, ( cause my blood work is still wack out) blood transfusion.... second week, day 1, treatment with gemcitabine and carboplatin, second day blood transfusion if necessary, .....third weed no treatment and that's the end of cycle 1. 3 more to go for a total of 4 cycles. i have my first ct scan and pet scan in dec scheduled.. now if i can only stop some of the incision pain from the 5 chest surgeries things will be okay......sometimes pain goes from a 10 to a constant 3/4, when i was in the military, back in the day, army and retired air force, "one has to be alive to feel pain" and being alive is good, so, peace and love to all

hello again. its been awile.so a little recap. my name is raymond johnson and i had my first biopsy on 1 april 2017 and diagnosis with non small cell squamous lung cancer. due to local medical delays, i finally went to memorial sloan kettering for treatment. i was given tencentriq for pre surgery treatment. then surgery was delayed twice due to electrolytes unbalance. on 1 aug 2017 i had my surgery. my right lung was removed with clean margins. no cancer cells left behind. but. my surgeon said i had a very massive muscular vascular chest wall, which made it hard to close. so, after 5 chest surgeries to fix the many air and blood leaks, 2 cardiac arrests, 2 strokes/tia, pneumothorax, compartment syndrome , massive electrolyte imbalance, i survived. i am alive. i have pain from the surgeries, going to rehab 3 times a week and my local doc is taking over in managing my synthroid meds. but i am alive... to be continued...... peace and love to all

well, its almost "the " day . tomorrow i go for surgery. i will let you all know what happened in about 10 -12 days peace out and yes sergeants do lead the way.....

crazy week so far. on monday, 10 jul, i was supposed to met with the onoc and research nurse to receive my second treatment of tencentriq and see the surgeon for pre serg consult. prior this meeting i read the ct scan which said the tencentriq reduced the size and showed signs of necrosis. so, i my mind ,i thought this was a good thing and the medication was was working and then tumor begone., well, not so. they said the side effects, coughing up blood diff with breathing, causing pneumonitis, which they said were life threatening. so no tencentriq for me. they told that treatment was above and beyond standard of care. there is no right answers and everyone is different. its will a jugging act to see what will work for me. the made a ptt for after surg for a new game plan. this was not the answers i was expecting feeling down and disappointed. next the surg consult. the doc said that due to the pneumonitis he would need a new lung function test before surg to see any further damage to my left lung. scheduled for tomorrow 13 jul. then he said that when he did the lynph node biopsy he look around my chest and saw that this surgery will be one of his must challenging he had due to the position of the tumor need pulmonary arteries and veins and the vagus nerve. at this point i really not feeling at all good about any of this. he said when did does my open chest procedure , he will need room to make sure he closes all the vessels. at that time he will make a decision to just close me up, remove upper and middle lode , which he said he would need to do some creative plumbing to save the bottom lobe or just remove the entire right lung. i really need to breathe deep, pause. to much info. ot another ct and pet scan yesterday. still to go to the lung function tomorrow. the doc changed my surg date from 20 jul to 18 jul. but it is not showing a scheduled on the sloan kettering web page. in fact no surgery date is posted.. makes me wonder whats next. anyway i am back to non productive cough with wheezes. taking my inhalers to fix that. a bumpy ride . i tell myself that today is a new day. besides retired master sergeants can handle anything, lol

well, yesterday i supposed to have my second dosing of tecentrig but, i told them that i was coughing up blood and very very tired for 9 days prior. they kinda of took two steps back. i thought this was just a common reaction to tecentrig. i thought it was working to shrink the tumor. silly me. nobody at sloan told me to call if i had ANY symptoms that i was supposed to call them. whoops. now treatment is delayed until symptoms go away. they put me on 60 mg of prednisolone. surgery is still scheduled for 20 jul. my first scan measurement from 28 april was 5.9 x 4.6 and the second on 2 jun was 6.5 x 4.5. peace

i have to add a few things about me. i retired in 2008 as a new york city fire department paramedic and at the same time as a site coordinator for a emergency medical training site in the air force in rank of a master sergeant. so i have a little bit of medical knowledge. so when this all started i went to the local hospital. its a good local small town hospital. but when i was not getting the answers i needed to educate me on this disease, it was time to bring it the experts. so yes i have a great oncologist and a great thoracic surgeon at sloan kettering. but from my past experience with sloan i also have my pcp involved to take care of me after surgery. its just not knowing whats happening and the frustration, i have a bass boat but when i have bad days the weather is nice when i have good days the weather is bad. since i retired im 2008 i have been practicing my trumpet again, just joined the local community band, with all the anxiety, oh did i fail to mention i have ptsd, i can't practice, so no fishing no playing music. have to reevaluate, i am strong. i will survive. but i will witch and rant. laughing until my sides hurt .

hello, my name is raymond johnson and i am 61 years young and this year i have been dx with nsclc squamous. it all started because i wanted to quit smoking, i wanted a cxr just to get a baseline. got a cxr with a appt with a pulmonologist the following tuesday. i just so happened be sick, just the common cold/flu, so i thought. the dr examined me and told me i had a mass on my lungs and have pneumonia. my journey begins. had a ct scan with contrast and a lung biopsy. all i was told that i had lung cancer. then the pulmonologist goes on vacation. still no answers. then i get a phone call that says i have an appt with the oncologist dr and radiation dr. still nobody is telling me why. the chemo dr , after a month from first dx, tells me i have nsclc squamous stage 3a. tells me i will get chemo once or twice every 35 days forever. this does not sound good. i go to the radiation dr and she told me she with give me 35 txs of radiation to get rid of this cancer. but wait she then tells me maybe i should see a surgeon before her treatment. off i go to the local thoracic surgeon. he tells me he might just take a little bit of lung , maybe just one lobe,maybe two lobes, maybe the whole lung. there is too many maybes for me. so i have had prostate cancer back in 2010 and was treated by memorial sloan kettering hospital in nyc,ny. i told my pcp to make some phone calls and to get me an appt. got me appt, got another ct scan another pet scan another brain scan. involved in a trail study getting atezolizumab before surgery. got my first dose on 8 jun and will get my second dose on 27 jun and surgery is scheduled for 20 jul 17. the side efects been hitting the last few days, coughing up blood clots feeling very tired but i guess there is no pain yet, anyway thanks for listening.