Hey all,
I have excellent news of my sister Leisa! A year after WBR for "too many brain mets to count," her brain has finally been declared "clear." We had a verbal 2 weeks ago from a nurse who said over the phone "no mets" but all reports since last Nov. showed existing mets had resolved – we were ecstatic at the time but the docs refused to share our optimism. Now I understand why – they were still seeing a couple of small T1 flairs and numerous T2 flairs. I did not realize the difference until we saw the radioncologist last week – T1 is suspect for pathology (disease) and T2 could be anything >> seems so simple and I'll be damned as to why I couldn't get a straight answer on this before (part of my confusion was because they insist on calling T1 flairs "new mets" and when we read the reports we were asking "what new mets are you talking about?")
Anyway, it's now official and we are "over the top." The T2 flairs they see now are numerous and throughout the white matter but they are the damage from the WBR. These are very similar (as I understand it) to declines in our brains that are seen as we age, after having a stroke or with alzheimers. Not much that can be done and she is coping now with short term memory probems.
I also posted the other week about her treatment because the trial she was in was ending and we were kind of alarmed because she is not NED. I did update that post to say we'd had a call that they were going to continue nivo for her but we didn't know what "the plan" was until yesterday. Seems there actually is no plan or the onc wants to see the next thoracic scan (July 10) before she says anything more. She did volunteer that if the next scan showed NED, she'd continue infusions for another 3 mos. but if not NED, she'd go one more year on nivo, tops!! She also confirmed that the nivo is just by regular prescribed treatment, it's not under trial. That's progress here because 6 mos. ago it wasn't available this way AND, for the life of me, why couldn't she tell us this 4 weeks ago. We think she was waiting to see the brain scan before saying anything.
Small rant >> I am extremely grateful for the universal healthcare we have here – my sister would not be alive now without it. But I find the lack of info startling – we rarely get questions answered and most of the time the onc is just too busy to entertain qs anyway. They're also very reluctant to be enthused over good news (e.g., the only organs the onc will say are clear for my sister are her lungs and now the brain – she won't comment on the spine, the pancreas or anywhere else they are no longer seeing anything). We've asked repeatedly about certain bloodwork, LDH level in particular, and were usually kind of dissed – this time she must've been prepared because she had the LDH – it's back in normal range, 254. Before treatment last year it approached 1200. From the outset though, the onc told my sister to stay "offline" – she does not like her patients to be informed, that's clear (that's why I'm on here and my sister is not). But I stlll don't understand – why keep peole in the dark? I've stated this before and I'll say it again – this board has been our lifeline, the bulk of serious answers we've had came from here. In fact, we believe it saved her life (a post in May about sudden tinnitus clued us in to brain mets – that answer was from Jennunicorn – Jenn, if you happen to read this, please know that my sister regards you as a "hidden angel" – so do I!!)
So, that's where we're at – feeling close to NED but 4 or 5 tumours to go still. We'll knock them off one by one if we have to 🙂
Thanks for listening, thanks very much for being here!!
Best to all,
Barb
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