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Last Post: 12:13:06pm, 04/14/2022
BettyB0op08 posted...
I'm sorry for your loss. I think this is the best course of action too.
Thanks, still think of him every day. Saw his mom at our other mutual best friend's baby shower this past weekend and it's just hard.
This speaks to TC though, people will be dealing with losing you for a long time. As many said, you should let them know soon (but when the time is right for you).
I also didn't finish my last post with the conclusion I intended to have: I would urge TC @CellBlock7 to look at getting informed about any clinical trials of genetic chemo treatments that may be possible for their particular stage of tumor. (I remember at least one or two other posters also brought this up, so I'm echoing that.)
Your doctors/board may want to exhaust all traditional treatment regimens first, but if you bring the idea of trials up early and council your concerns for harm from traditional strategies (i.e. x-rays are really not nice to brain tissue, old cocktails of chemo can be quite, quite toxic), they'll assure you they know those are the risks but remind you of your prognosis.
I'd imagine, however, they should also be charting your concerns if they are truly a quality care team. And if they are listening, they'll be looking to inform you of the eligibility criteria for participation in a trial (even if it's off-site)
Participate in the usual regimens where necessary (to show your mettle in trying, but beware pushing your own organs too hard). Reinforce your willingness to be a subject in a genetically-based chemo treatment trial (and as another poster said, do consider looking for other opinions, not just on diagnosis but on protocol/care strategy and the potentials for participation in a clinical trial).
It may require extra tests and pathology, and be more expensive to find out these kind of things, but if it's within your reach, it might help. I'd also hope (or would think) that the trial would not be so expensive (apart from your costs to be seen as part of the study's requirements), as test article studies are usually seeking to find good (eligible and compliant) subjects with money pre-funding the investigation.
I am not a doctor though, and all I can say is secondhand, so take what I say with salt. I again hope for the best for you TC.---
"Liking is probably the best form of ownership, and ownership the worst form of liking" - Jose Saramago