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August 26, 2013 at 11:27 pm #21547
Thinking of you today.August 27, 2013 at 1:17 am #62354AnonymousGuest Yes Frank how are you getting on?
JeffAugust 27, 2013 at 6:57 pm #62355
Got home Sunday night at about 9 p.m. after good reports from surgeon and crew. Lots of napping and sleeping here at home in Kalamazo after 2 nights and days of little post-surgery in the hospital in Ann Arbor. Still seems I am NED and should have some respite (I hope a lot) from seizures with necrosis, hematoma, from previously radiated tumor removed. Back to Ann Arbor for another CT scan a week from tomorrow. For the next week plus, I guess I can expect continuing to want to sleep a lot. Sure do now. Thanks for your care and solicitude.
FrankAugust 27, 2013 at 8:11 pm #62356
Rest up and get ready for the next swim meet! Good to hear you are healing.October 30, 2013 at 7:41 pm #62357AnonymousGuest Frank:
How are you doing buddy?
JeffOctober 31, 2013 at 9:54 am #62358
Thanks for the remembrance! I was getting up feeling sorry for myself this morning, an attitude I usually avoid and this post along with a couple of pleasant personal emails remind me that I have a lot to be grateful for. To bring you up to date, I took a fall out on the sidewalk on the block around our home in late September a month or so after my brain surgery and came out of it with a subarachnoid hemorrhage. Lots of nasty symptoms since then. I decided with my neurosurgeon yesterday to pursue a brain hole drain on November 8 and hope that I can reduce the amount of anti-seizure drugs I am on which also seem to be causing symptoms that I don’t care for. It’s hard for me certainly and I think even my doctors to sort out what is coming from what.
Got the scan reports yesterday. No sign of any cancer in the brain now after the SRS and subsequent removal in August of the remnants of the larger of the two mets. For now I will continue with some degree of exaggeration my NED status, but the full body Pet did detect some activity in the pancreas and small bowel. My clinical oncologist is not at all convinced there are new mets in those locations and will retest in January. His resident assistant seemed a little less optimistic. I don’t have any symptoms. As to whether I can get insurance to pay for further PET scans my doc was not sure because of new regulations limiting the number of PET scans any one person can have paid for.
I’m becoming adept at using my cane when I go out. If any one wants to send me a bowler hat, I might even go out trick or treating tonight. I’d rather go swimming but haven’t done that in 3 months.
I’ve been a regular reader on the Forum. Just no wisdom to add.
FrankOctober 31, 2013 at 12:42 pm #62359
frank, so good to hear from you. Sorry to hear about the spill you took, just what you needed eh?
Well hopefully you will be able to swim soon? I know it is what helps you with stress and getting those wonderful endorphins. Have you thought about doing anything systemic, like PD1? Don’t eat too much candy tonight and keep in touch!October 31, 2013 at 2:52 pm #62360
I spoke with my onc yesterday about PD-1 yesterday. They are participating in a Stage 3 trial. Two problems. One is brain stability. I am not sure what the requirement is there. I don’t have any active mets, not have I for at least two months, probably much longer. Second is more definitive. I would have to have a measurable tumor. Right now I am still hopeful that I have none. And certainly I have nothing measurable. Both of those (brain stability, measurable mets) seem to be requirements for any kind of systemic treatments. Is that the case?
As for targeted therapy for my new BRAF positive identity, I have such rare BRAF gene identification, there is no research done on whether the BRAF drugs would work on rare cases like me. The oncologist said he would try them down the road if they seemed to be the only possibility remaining, but I am far from there, and again nothing measurableOctober 31, 2013 at 6:03 pm #62361
Maybe the new Braf/mek drugs that are approved would be an option. MEk works in nras positive perhaps extending to your new identity. You are correct about a tumor they can take a biopsy from for the Pd1. All sounds good that you are stable and hope you can swim soon!November 1, 2013 at 1:34 pm #62362AnonymousGuest Glad to hear from you Frank!
Yeah getting back to swimming might help with balance too.
Not a bad place to be in at all with your disease, NED or so small they can’t find any.
Interesting BRAF info. I assume you’ll do maintenance IPI? Is the stage 3 trial an adjuvent type trial?
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