I posted my questions in another forum earlier but thought I'd post this here too as we really have no idea what we are dealing with right now.
My DH has had stage 1 Lung cancer since 2016 that was unable to be removed d/t too much scar tissue, 5 radiation treatments done and the tumor had shrunk to less than half the original size, he had a scan 3 months after radiation and all signs were good, and he was to repeat scan in 6 months. 4 months after the 1st scan was done I took him to ER with unrelieved chest pain, that moved to his epigastric region-his gallbladder has been removed already so we knew that wasn't the culprit.
CT scan revealed (2) 4+cm masses 1 on each adrenal gland and 2 enlarged lymph nodes-DX suspected lung cancer metastasis with lymph node involvement. A biopsy on 9/14/18 left his Oncologist in shock as only the Preliminary report was available so far but he said the findings so far are "weird and not at all what they were expecting to find" Impression of Preliminary report "Vimentin positive poorly differentiated epitheloid malignancy" (which is a long name for a Sarcoma).
He had another follow up on 10/2/18 still a Preliminary report is all that was available but the Preliminary said "The current immunohistochemical signature is non-diagnostic, but could be seen in several neoplasms, including Ewings/PNET. Additional studies are Pending; a final report will be issued when the latter are complete" This time they were also out of tissue to continue testing and instead of a needle biopsy they wanted an entire lymph node this time, so DH had surgery to remove an entire lymph node on 10/5/18 so testing can resume, and he is recovering well from that.
His condition, weight, etc have all be declining very rapidly, and whatever this is it is very aggressive. He has a lot of pain in random areas, nausea and vomiting, he has dropped from 204 on 8/24/18 when he went to ER, to 183.2 at time of his surgery on 10/5/18. We are really hoping they get a final report soon so he can begin treatment for this.
Have any of you all had this issue if so can you tell me what your diagnoses was and what treatments etc. worked for you?
Any suggestions on things that can be done to help keep his weight loss from occurring, or at least slow it down some would be appreciated because he is so weak right now. He is currently on Marinol, CBD oil, Phenergan, Zofran, and Ensure to help stimulate appetite, stop the nausea and vomiting, and the Ensure to add in some extra calories/nutrition along the way, I have also ordered him some Liquid Hope, and am trying to feed him as high of calorie, good protein meals as possible when he can keep it down.
Any additional suggestions, info, etc. would be welcomed and greatly appreciated. Thank you and have a nice day!! CJ