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?

At a Crossroads

ok, so this is where we're at. my last CT scan showed that the chemo wasn't knocking it back - one node had increased in size.

so the good doctor put me on tamoxifen. apparently, there is research that shows a synergistic effect. what this means is kind of like those commercials for abilify - if you add it to the other drug, it makes the other drug work more effectively? ok, pretty much the same thing.

so i've been on the tamoxifen for 23 doses (not that i'm counting or anything). saw the good doctor yesterday. my labs all look good, that's a good thing. even got the iron levels to come back up (they were 'trending down')

so the question is, is the tamoxifen doing what we hope it's doing?

well, the only objective measure i can use is the wheeziness i've had. i've had it for more than the 23 days of tamoxifen. at one point, maybe a month and a half ago? i was given an inhaler for when it was troublesome. and after 3 weeks on the tamoxifen, the wheeziness is reduced. i haven't been keeping track of wheezy days (maybe i should), but it's definitely better.

so next week, another scan, and we can look at the node that was slightly larger - and really, when we say larger? it was 1 millimeter later. that's a really teeny amount.

so if you pray, please do? if you light candles, send letters into the wind? whatever it is that works for you, we could use all the help we can get. let's hope the wheeziness IS better, the node is smaller, and the tamoxifen is doing what we need it to do.

on the other hand, if it isn't, i think the next plan is something called a PD-1 inhibitor.

i want to be better. i want to return to my job. i want to be a fully functioning member of society again.

oh, and it would be nice to think that after this is over, my hair will grow back. curly would be nice.

A Benefit in our Honor - post event

i am still speechless. i am still buzzing on the adrenaline from yesterday.

yesterday was the actual event. one of 'my' publications (one of of the ones i manage when i' m at work) came up with the idea to take their annual chili cook-off, and make it a benefit to help us out. once the idea was approved and floated, it seems as though it took on a life of its own!

Missy, one of the leads for the publication worked herself crazy, visiting local businesses for raffle prize donations. people that i have worked with made and donated raffle prizes as well. there were even a couple of silent auction type items. the company itself donated a day of PTO (personal time off) as a raffle prize. one of the EVPs (executive vice presidents) donated $50 cash as a prize. there were 2 tables of prizes!! one co-worker went to work on her sewing machine and donated a quilt, some wall hangings and table runners.

my daughter and i went up for the event, so that i could say hi to everyone, share hugs, stories and some laughter.

until the end, when they announced how much had been raised on our behalf. then we cried.

thank you, Cygnus Business Media, for your kindness, thoughtfulness, and willingness to help a fellow employee when they're having a struggle - you have made our life a bit easier, with a bit more breathing room for the next couple of months.

and, because we firmly believe in paying it forward, my daughter had picked 2 tags from an 'adopt a family for xmas' giving tree - the tags were for a 7 year old little boy, and he only wanted 2 things..... a bike, and soccer shoes.

he will be receiving both for xmas this year, with an included bike helmet. it seemed like the right thing to do.

so to all you cygnus folks, to missy, ronnie, sarah, erica, all the people who donated prizes (Kari, i'm looking at you), all the people who bought tickets (terri and erica made out like bandits!), we thank you.... from the bottom of our hearts.

A Benefit in my Honor?

I'm a little speechless right now.

yesterday, i got an email from one of the publications that i manage(d) at my job before i went on medical leave. I really haven't heard from any of them in the nearly 3 months I've been out.

apparently, they had been talking about doing a benefit to help us out, and wanted to make sure i'm ok with it.

yeah, i'm ok with it. as i told her, we'll accept all offers of assistance, with our deep thanks. seriously, we're scraping along, but it's stressful - there are a lot of days that i seriously consider ignoring my doctor's advice, and toughing it out at work, living on meds, simply because we need the paycheck. and then i have to take more meds, and lay down for a bit, and know that it wouldn't work really well. so we scrape along.

an email was sent out to the entire company (as best i can tell), announcing the fund raiser. they're doing a chili cook-off.... so a bunch of people will cook chili, there will be prizes and raffles for the people there, and the money they raise (they're charging something like $5 a person to eat chili) will be sent to us.

i'm speechless. i'm so appreciative of what they're doing, i'm not sure they know how much it will help, but i do.

clearly, i work for the best company out there. CBM, I thank you!