Has anyone dealt with extensive distant lymph node involvement?
I tried searching the forum but the only posts I find are about regional (mammary and axilla) lymph node involvement. I have extensive lymph node involvement from my supraclavicular down through "multiple clusters" throughout my chest and abdomen. My last scan showed significant progression in the lymph system after my non-cancer side supraclavicular swelled like a golf ball. I'm not finding much in the way of research or studies about distant node involvement other than a study that said that very few chemo drugs are able to penetrate the lymph nodes, and that very little research has been done because the focus is primarily on how mets spread via the blood, not the lymph system. The article didn't state what those few chemo drugs are, so I'm wondering if anyone has successfully treated distant lymph node mets and what chemo they used, esp anyone who is HER2+ because I'm wondering if a targeted drug on its own is going to be a waste of time.
My liver mets have resolved and my other organs are still clear for now (I have other non-organ active mets/tumors), but of course I'm concerned because I know that the lymphatic system is one of the primary ways mets can spread to organs, so we need to get on top of this before that happens again. I'm getting pretty discouraged because for the last 18 months, every time we beat it back one place it just pops up someplace new and this game of whack-a-mole is getting old and wearing me out.
I know it may seem silly to some, but researching and having information calms me down so I don't feel like I'm floundering around in the dark with my cancer running out of control, entirely at the mercy of others, and I like to be able to have intelligent conversations with my MO. It's very frustrating when I can't find any information at all, and just adds to my stress.