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Posted 2019-09-19T01:03:09Z

New Scan Results - good news


Sorry for the delay in a news update.  The last scan I had was in June and showed the first treatment was no longer working as there was some growth.  I had to do two 6 week treatments before they scanned again.  My scan today "looks so much better"  according to my nurse practitioner.   I see her in person on Oct 2 and can ask some more questions, although to be honest they can't really predict much.   My next scan should be in another 12 weeks.[...]

Posted 2019-07-03T03:40:48Z

Latest news


Well , sadly, this one isn't quite as good as the last one.  They found some new leaky blood vessels on the last scan near the margin of surgery.  These are most likely a result of the treatment protocol not working and new cancer cells are growing; not unusual in this type of cancer, evidently this happens to approx 50% of people on the first drug.  As soon as the Cancer Agency can fit me into the infusion cycle (7-10 days) I will begin a new regiment of oral chemo 1 day/every 6 weeks combined with 2 antibody infusions over this time period - the infusions will take only a 1/2 hour -1hr to infuse as it is not a chemo drug so they can push it through a bit faster.  They like to run these for 2 cycles before scanning again, so next scan in 12 weeks.  I will be put on stronger anti-nausea meds for the first few days of oral chemo as it is a much stronger drug.  [...]

Posted 2019-04-07T00:36:44Z

7 days until I can drive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Met with my nurse practitioner on Tuesday.  She is AMAZING.  Didn't see the neuro-oncologist, she let it slip that he was off having lunch.  The good part about that is nothing interesting is happening with me that needs his attention.  :)  Both sets of blood tests were fine so up goes the dosage, but they would rather I didn't wait to start it - so off we go to LA and San Diego with all my meds including some extras so I don't need to go to a clinic if I start to feel bad. [...]

Posted 2019-03-14T19:42:43Z

Made it ...


Well I made it through the 5 days of oral chemo with just a  few nauseous moments.  Seems like eating small amounts regularly is the way to go, even though I don't really feel that hungry.  Could be much worse though, both in terms of at least food still tastes good....and I didn't throw up.   I get 23 days off now, blood work in week 3, further blood work before I start the next round in the beginning of April.  [...]

Posted 2019-03-07T03:49:00Z

Treatment starts again


After a month off, oral chemo starts again today for 5 days, followed by 23 days off.  This will continue for 6 months.  This is the same drug I was on during the radiation treatment, albeit at a much higher dose.  The side effects seem to be mostly nausea which they treat prophylactically with anti-nausea meds.   I didn't have any side-effects before so hopefully that continues.[...]

Posted 2019-02-19T16:51:42Z

No news is good news


I don't really have much to report, still losing hair - maybe more slowly because there is less left or perhaps it is actually slowing down.  Not sure.  2 weeks since my last radiation, feeling pretty good though, really my only complaint apart from this whole thing happening is that I can't drive.  56 days still seems like a long way to go .  It drives me crazy when people say you are almost there...that does not help.  I did get my is in the garage.   Might be the only time in my life I actually read the manual, I may go sit in it later today and if I am super bored I will drive up and down the driveway.  :) [...]

Posted 2019-01-29T01:56:24Z

5 more to go!


Not a lot new to report apart from having 2 more days of oral chemo and 5 more days of radiation.  I am getting there.   Still feeling remarkably well.  Between getting out to my treatments and to the kids' basketball games that seems to be enough excitement for the moment.   I have to remember that even if I am feeling okay, I still need to allow my brain to rest and recover.[...]

Posted 2019-01-20T19:01:00Z

Sunday - 11 more to go


Not really much new, 11 more days of radiation.  3 months until I can drive.  Still feeling well.   It seems like I will be cutting my hair short eventually, otherwise when it grows back i will have spikes sticking up around my head.  There is a min length you need before said spikes will flatten.  Allison thought this was kind of funny.[...]