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rayj3497

update

7 posts in this topic

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

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Hi, Raymond,

How are you doing? I hope your symptoms are getting better. Post an update when you can!

Lauren
--
Digital Community Manager
LUNGevity Foundation

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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

 

 

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Indeed, RayJ, retired Master Sergeants can handle anything.

I understand from your post, the first treatment approach was to use a new immunotherapy drug, Tecentriq, and you didn't tell us how long you were on it but it didn't cause the tumor to shrink.  So you went down the path of first line treatment and it didn't work.  My first line treatment experience was nearly similar but my chemo was "Old Reliable" (if an Army Master Sergeant, you know what the quotes mean) Taxol and Carboplatin.  Then I was slated for surgery with the same uncertain outcome of opening me up and perhaps discovering they could not do anything but close me up again.  But they did take my entire lung.  Unfortunately, that operation was not completely successful and I had a years worth of thoracic surgeries to repair damage and perform "creative plumbing".  Then, rigid four bronchoscopes with full anesthesia to insert, then remove stents in my trachea to bolster the creative plumbing repairs.  Then, after the cancer metastasized to my remaining lung, I did the chemotherapy thing again - the old reliable stuff, 12 more infusions. And, then CyberKnife radiation; I more than three years of constant treatment but it worked.  I've now survived 13.5 years after diagnosis, and the point of this reveal is if I can live, so can you.

So, put on your battle rattle, lock and load, and proceed purposefully down range to engage and defeat your lung cancer.  Welcome here Master Sergeant!  Questions?  Lead the way.

Stay the course.

Tom

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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.....

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