T on July 1, 2010 my father was diagnosed with Small Cell Lung Cancer Limited, right upper lobe with some lymph node involvement and slight pleural effusion (same side).
on April 24, 2011 after twice daily radiation, Cisplatin & Etopisode, PCI he was declared NED (no evidence of disease)
May, 2014, Sarcoma of the abdominal wall diagnosis, pathology is unlcear, MAYO says its alveolar Rhabdomyosarcoma, NCI say IMT
June 10, 2014, Mass is surgically removed, follow up surgery needed to clear margins, waited and rescanned 10/2014 Scans came back clear decided to wait on follow up surgery because he did not do well with first one.
December, 2014, Scans still Clear
Two weeks ago, mid May 2015......Sarcoma is Back and ALK + my dad is on Zykadia off label use, sadly the SCLC is also back in exact same spot as initial diagnosis where he had scar tissue first it was thought just to be inflammation from all the radiation but the bronchoscopy confirmed finding.
Plan is Proton Beam Radiation for 5 days and hopefully the Zykadia is working on the sarcoma. His case is difficult and I know he can beat the SCLC again after 4 years with same chemo drugs as before but the sarcoma is the latest challenge. If the Zykadia works he will then have chemo again to try and fight the SCLC again.
What do you think of this treatment plan?
Reply # - June 1, 2015, 09:38 AM
Hi and welcome to Grace. I'm
Hi and welcome to Grace. I'm very sorry about your father's many run ins with cancer. Our faculty doesn't have expertise in sarcoma so non could say whether trying this off label treatment has anything more to offer than standard treatment. The best way to get an opinion on that would be from a doctor who's using the drug on that type of sarcoma in a research trial who has anecdotal information. Really there's no knowing without evidence.
It makes since to treat the sclc like a new cancer. Cancer can do anything (read my signature below) so it's not impossible that this is the same process as before but there's not any info on how that happens and how it would be treated or even if it is the same. Lung cancers don't just sit around and do nothing (without treatment sclc grows quickly enough to see it on scans from on quarter to the next). When lung cancer is found a year or so after lung cancer was treated it's very normal to start from the beginning if that's possible. Surgery and radiation are more than likely off the table since there has been radiation in the area before.
I'm sorry there are more questions than answers. If Mayo or similar research hospital is still available to him then an opinion from there would go a long way.
All best,
Janine