Haven't been posting much...

It's been a rough time.

Based on the Brain MRI I had, there were 2 tiny mets.... so i had cyberknife to (hopefully) blow thing1 and thing2 to kingdom come. at least, we hope so.

i had a new CT last week, and should know this week if the Alimta is working or not.... of course, we hope it is, and I believe my onc has at least one plan in mind, in case it isn't... so we wait on that one.

and I had clearance to return to my job? yeah......... no. 13 days after I notified my company i had been cleared to return to work, they cited 'staff reductions' and eliminated my position. thanks, guys. just out of curiosity.... how do you sleep at night?

so here i am, waiting on scan results, and job seeking. because i was approved for SSDI, i am not eligible for unemployment compensation... so we're kind of screwed. hopefully, i find a new job quickly.

so i did my taxes... did them for the whole family, got all the federal returns e-filed, all the state returns mailed - i am NOT paying $20 a pop to e-file the state returns. not happening.

and i'm stressing. i truly did not anticipate my company taking away my job, as soon as i was cleared to return to work.

so that's how it is.... if you're a praying sort of person, and felt like sending up a prayer or two on our behalf, i'd welcome all the help i can get.

and thanks to kimmie, who apparently started up a card campaign.... my mailbox has been delivering card after card, which really helps me from getting totally depressed.

and the woman who hired me at my last job (who is now a VP) wrote up a most excellent letter of recommendation for me - makes me feel like i'm not some loser who deserved to lose their job. thank you, sharon!

Missing the Comments

To anyone who has commented recently, I apologize - I haven't checked as much, and I missed the comments.

So here's where we are. We were not able to test any of the mutations, because there wasn't enough tissue. I don't know why it took them 2 weeks to decide this, but there it is.

I was cleared to return to work, though - so on February 6 (a couple more weeks), I return to the land of the productive, income earning folks. I'm looking forward to it!

In the meantime, we have a bunch of tune-up stuff to do - There are a couple of 'tiny' spots that we're going to zap with cyber-knife. This does not actually involve any knives. It's actually radiation, very targeted... so thing1 and thing2, which are 3mm and 4mm, respectively, are going to get blasted to kingdom come... a follow up with the new oncologist, another dose of the maintenance chemo (Alimta), and I should be good to go.

It'll be good to be working again... I've gotten some really nice emails from folks at work, who apparently want me back. And of course, having a full paycheck will help, too!

Things I've learned about the Social Security safety nets... once you are approved for SSDI (social security disability), they still pay nothing for 5 months. They want to be assured that you are truly disabled, and don't magically get better. Thanks, guys. Then, once you get SSDI, if it's over the approved limit, you lose your food stamps. Thanks, guys. AND!!! If you have long term disability from your employer? Read the fine print. Most policies provided by employers have a provision where they first deduct what you get in SSDI, before they pay anything.

Thanks, guys.

I'm thankful I'm better enough to return to work. Financially, we would never make it on SSDI alone.

So some tune-ups, some more knitting time, and then back to work! Hi-Ho!

And the PET scan says.....

As a generality, there has been substantial improvement.

pretty much everything has improved... problem areas are no longer glowing, the number of spots is decreased....

ok, there are 2 spots that are not improved, but really? i was expecting this to be really depressing and awful. I haven't had any treatments in nearly 4 weeks.

so friday, i'll either start the next line chemo, something called Alimta, or i'll have tested positive for one of the mutations, and we'll do targeted treatment, instead.

either way, i'm ok with this - i'll have a month of the new treatment to keep things stable, and then can look at going back to work.

not a bad way to end this year, and start the new one!

New Oncologist

i just saw the new oncologist - my current one is retiring.

he laid out 4 options:

1. chemo once every 3 weeks, Alimta. I’m scheduled to start that next Friday, got my b-12 shot while i was there, filled the folic acid prescription and started taking that. if none of the mutations come up positive (we should know next week), then we proceed with the Alimta.

2 and 3 - there are 2 different clinical trials that i qualify for…. so depending on what happens in the next week with the mutations, and after 2 rounds of Alimta, if it isn’t working, we go for a clinical trial.

4 - the PD-1 inhibitors - still on the back burner.

and i’m ok with this. I have a PET scan tomorrow to establish a new baseline, and a brain MRI on Tuesday to check for any brain mets - and when i told him how nervous THAT made me, he made it clear that if they find any, they zap ‘em with gamma-knife.

so we move on. High protein, no carbs or sugars tonight, PET tomorrow morning.

No Side of Mayo

There are no openings for the PD-1 trial. So we hope for a mutant.

I see the new oncologist in a couple of days, and hope for testing results next week.

Happy Merry whatever you celebrate, folks.

And now we wait

OK - so i was never tested for the mutations - so that testing is in the works, but takes 1-2 weeks to get results. if i'm positive for ALK or EGFR, there is a pill/chemo to use, and we'll do that locally.

at the same time, we're setting me up to go up to the Mayo Clinic in Rochester, MN - about 4 hours drive, to meet with them for the PD-1 inhibitor trials. The oncologist i'm being transferred to thinks i'm a 'perfect' candidate for the trials, if i come up negative on both mutations.

so now, it's a matter of timing. the oncologists are setting me up to go to Mayo in about 2 weeks, which should put us just about past the results of the mutant testing - because we can always cancel Mayo if i come up positive as a mutant.

so now, we wait.

Mayo should be calling me today to set something up, and then i'll know if i need to stay there for more than the one day - in which case i'll have to make arrangements for someplace to stay.

pity i don't know anyone up there.... so we'll see what happens.

i'm kind of hoping for a mutant, simply for logistics.

like my mother always used to tell me.............

if it wasn't for bad luck, i wouldn't have any.

according to today's visit to the oncologist, the chemo is not working. not with the tamoxifen, not without the tamoxifen. he's not sure it really ever worked, even though there were some early signs that maybe it was.

on the other hand, the cancer appears to be a very slow growing one - a couple of spots are only a tiny bit larger (not even measured in the scan, just a tiny bit larger) while others are unchanged.

according to him, i have a 'very low cancer load' (meaning nothing big, just a bunch of really little spots) - which is why i'm not sicker, considering the diagnosis. he says they aren't doing any pet scans because nothing is even big enough to show up on a PET (things smaller than 1cm generally don't react in a pet scan). currently, there is no sign that the cancer has spread to my liver, or to my bones. we haven't done a brain scan in a year, but the likelihood of it having spread to my brain at this point is very small (though i understand that if you survive stage IV lung cancer lung enough, you WILL end up with brain mets at some point)

so we're taking 2 possible approaches and exploring them both:

the first is to take another look and see if i have either of the likely mutations - ALK or EGFR - apparently, 2 years ago when i had the initial surgery, they didn't automatically do the test for the mutations - if it had been a year ago, they would have done it automatically. if it's one of the mutants, then we treat for the mutant. there are established treatments for each of them. my doctor has (or is going to) put in the order for the testing.

the other is a newer treatment called a PD-1 inhibitor. one of the other oncologists in my oncology group has been doing this - he did it at Yale, and he's been doing it up at the mayo clinic in rochester mn. my doctor has (or is going to) talk to the new doctor about this one. i might have to take a trip up to mayo to meet with the tumor board/cancer board/whatever it is and see if that looks likely (my doctor thinks its very likely, he's been talking about this one for a month)

and my doctor is retiring in 22 days, so i have to be switched to a different oncologist anyway.

so for the moment, i wait. i don't have to renew/keep taking the tamoxifen. i do not have weekly chemo tomorrow, which will give my system another week, at least, to recover from the 19 i already had. my doc says if i haven't heard from him by noon-ish tomorrow, i should call him. it's a toss up who's more disappointed tonight, me or him.

very low cancer load....... never quite heard stage 4 described like that, ya know?