F*^$ Cancer

[Thomkal]

Yay Bhloy! Glad you are getting some good news! Hope that everything continues to go well and you get discharged on Monday. Think we need to see some pictures if it happens!

[Kodos]

It’s a daunting battle, but I’m glad that things have gone fairly well so far, bhlloy. Will keep you in my prayers.

[Senator]

Hang in there everyone, one step at a time.


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[JonInMiddleGA]

Always great to hear good news, thanks for updating us bhlloy

[miami_fan]

Thank you for the update bhlloy. I would like to echo what Senator said. One step at a time. Good Luck!

[sterlingice]

Just catching back up, but, congrats on the transplant, bhlloy! Good lucky over these next couple of months

SI

[AnalBumCover]

Last I left you guys here several pages ago, my oldest brother completed his chemo treatments and rang the bell. He had been symptom free for several months after, until May of this year. He went to the ER with abdominal pain and blood in his stool. Turns out the cancer came back and moved to his abdomen.

He was going through a second round of chemo, more aggressively, but he was still experiencing severe pain. Surgery was too high a risk, and the chemo wasn't appearing to work.

This morning, he called me from his home in Seattle, telling me that the cancer is terminal, and he will no longer receive treatments. This was not really surprising news to me, from reading the recent texts relayed between his wife and my sister (who's a nurse), but it was a phone call I dreaded to receive.

My brother is in good spirits, with a sense of relief and acceptance. But his voice was still showing the fight he is still going through with the pain and spasms. It's hard hearing him like this.

This will most likely be my last update on this, as you all understand what's to come next. Just a matter of time.

I'm asking for your prayers for peace and comfort for my brother, and for prayers for love and compassion for his family (wife and teenaged daughter). Thanks, everyone.

[Honolulu_Blue]

Originally Posted by AnalBumCover

Last I left you guys here several pages ago, my oldest brother completed his chemo treatments and rang the bell. He had been symptom free for several months after, until May of this year. He went to the ER with abdominal pain and blood in his stool. Turns out the cancer came back and moved to his abdomen.

He was going through a second round of chemo, more aggressively, but he was still experiencing severe pain. Surgery was too high a risk, and the chemo wasn't appearing to work.

This morning, he called me from his home in Seattle, telling me that the cancer is terminal, and he will no longer receive treatments. This was not really surprising news to me, from reading the recent texts relayed between his wife and my sister (who's a nurse), but it was a phone call I dreaded to receive.

My brother is in good spirits, with a sense of relief and acceptance. But his voice was still showing the fight he is still going through with the pain and spasms. It's hard hearing him like this.

This will most likely be my last update on this, as you all understand what's to come next. Just a matter of time.

I'm asking for your prayers for peace and comfort for my brother, and for prayers for love and compassion for his family (wife and teenaged daughter). Thanks, everyone.

I'm really sorry to hear this. It's awful.

I lost my younger brother to cancer almost two years ago now. He was only 42 and left behind his wife and two kids. I think about him every day and don't think I've yet to fully process what it's all meant.

I wish you and your family all of the best.

[Thomkal]

Oh man so sorry to hear about the return and severity of your brother's cancer ABC. You and your family are in my thoughts

[Breeze]

Praying for you and yours ABC.

[Kodos]

So sorry to hear this, ABC. Your brother will be in my prayers.

[tarcone]

Thoughts and prayers. So sorry.

[Lathum]

So sorry to hear that ABC. Brutal.

[GrantDawg]

Sorry to hear, ABC

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[JonInMiddleGA]

I'm very sorry ABC.

Prayers for comfort for you all.

[PilotMan]

Very sorry for you and your family ABC. I wish you find comfort in the days ahead.

[thesloppy]

That sounds so difficult ABC, sorry for you and your family.

[MizzouRah]

So sorry ABC, thoughts and prayers for you and your family.

[Flasch186]

Sorry man


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[JonInMiddleGA]

After her most recent CT scans showed a couple things (one we knew about, one we didn't) that didn't look good, today we got an update from my wife's lead doctor on the results of her PET scan they did on Tuesday.

The news is, well, not good

I'll preface by saying that the list of bad news does NOT include anything currently near any vital organ; i.e. there is nothing immediately life threatening ... but it does feel like we're on the clock

There are suddenly tumors all over the place

-- the crown of her head (the largest & the one we suspected would be)
-- one in the upper (bad) leg
-- one in her side (think above the bad hip)
-- one in her left butt cheek
-- several other that are on bone, but not currently in bone

There were enough that he stopped laundry listing them "you've got the idea, no sense me going through every single one, they'll be treated at the same time"

All those I mentioned are in fatty tissue, not bone, which is pretty weird considering her tumor profile.

He now suspects that she does NOT have sarcoma (despite test indications saying so) but rather uterine cancer gone nuts

He found a current case with a colleague that has a similar path, good news is that after a couple years, that case is now on the run (going backwards instead of just a draw)

Starting ASAP (literally, tomorrow if they could get her in, but ASAP) -- chemo begins.

It's 1 dose .. then wait 3 weeks and another dose ... then wait 3 weeks, scans, then decide whether to continue that type OR try to switch to a diff version ( for those with unfortunate experience in these matters, we think it's the notorious "Red Devil" version edit to correct: thankfully it's the less toxic carboplatin and paclitaxel combo that is popular for a variety of female-dominant cancers )

He says time is our best ally as everything appears to be early BUT it's clearly extremely aggressive.

It's ... bad. Not hopeless yet, literally the main hope is in that similar case with a positive direction (it combined chemo with immunotherapy stuff .. which he's going to start fighting the insurance for now). That, plus possible early discovery, plus the current locations.

He thinks that we might be early enough to have time to switch chemo types if this one isn't doing the job after 6 weeks

The mood here is, well, about what you'd imagine. Fear (fuck that more like terror) trepidation, anxiety. Her mood is darker than that, and when I'm the more positive person in any situation you know things are rough. Will handled the news long distance as well as possible, he's trying to stay focused on the lifelines of hope as best he can.

I've spent most of the last 5-6 hours updating family, her closest friends, a couple of mine. I figured I might as well just do a c&p dump here too.

I'm already exhausted and the hell ain't really even kicked off yet.

But y'all ridden this coaster with me this far, you get the same news (with a few coarser additions) that the family and innermost circle get.

[thesloppy]

Good on you for keeping your shit together through all of this Jon. It sounds maddening how much energy and effort it takes to be seriously ill (and ill adjacent). I hope everything works out as well as it can for her.

[sterlingice]

Damn, Jon. So sorry to hear the latest on this. Not all bad news but not good either. An extra prayer for you and your family tonight - may you find healing and peace.

SI

[JonInMiddleGA]

Originally Posted by thesloppy

Good on you for keeping your shit together through all of this Jon.

I'm apparently giving the wrong impression. I'm a fucking wreck.

I don't have the luxury at the moment of falling completely apart but my shit is so from being together than I'm not sure it's even in ragged piles.

Best I can do is try to stay minute-to-minute (fuck day-by-day) as much as possible. Anything past that it gets overwhelming really quick.

[JonInMiddleGA]

For those who might wonder (and haven't been privvy to the details as this developed)

2 months ago her scans were all clear.

About 4 weeks ago Will noticed something like a knot (think a really bad bump on the head kind) on the crown of her head. It was sore'ish for 2-3 days, then literally no pain or out of the ordinary sensation at all. It got a little bigger, currently maybe the length of my fist, raised maybe 50-60 percent of an egg in height.

She had CT scan coming up, but of course it didn't include her head (it went toes to neck). Preliminary report found nothing visible, but radiologist official report noted a 2 cm soft tissue mass "near" the previous hip repair. Those combined to warrant a PET scan early this week (first appt she could get)

He was going to save us a drive into midtown (currently takes about 2.5 hours to do that 50-60 mile trip, traffic is back to pre-Covid levels) and call on Tuesday evening, he even phoned us last Friday to see if that worked for us. No call came. None Wednesday either. Confirmed Thursday morning that he'd call after last patient on Thursday evening.

We knew some stuff was coming -- but doc was optimistic after the CT that we could just zap whatever was there easily enough. We weren't fully prepared for just how much stuff showed up.

And, to be fair, neither was the doc. (that was evident in the call, he was almost shaken, and felt absolutely awful to have so much rough news to deliver)

[bhlloy]

Fuck Jon, I’m really sorry to hear that. Fuck this disease.

[Kodos]

My god. So sorry to hear about your wife’s cancer coming back again. Will be praying for her and you, Jon.

[Thomkal]

I had wondered how she was doing Jon, sorry to hear about the terrible update. I think your reactions and mood would be pretty normal for those going through, and I hope talking to your family and friends and reporting here is helping in some way to cope with all of it.

It does sound like the doctor has found the right path for your wife to follow now, I hope it does too. I think you have to cling to that bit of hope and any other that may come until/if it doesn't lead anywhere. You are all certainly in my thoughts

[JPhillips]

Soory to hear, Jon. God bless to your wife and the family.

[Ben E Lou]

Ugh. That's just awful, Jon. So sorry y'all are going through this.

[Lathum]

Sorry to hear Jon, keeping you and Will in my thoughts.

[Flasch186]

Sorry man


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[Swaggs]

So sorry. Cancer is such a cruel disease.

[miami_fan]

Well Fuck! This is not the news that anybody wanted to read. Hoping for the best for the entire family.

[Edward64]

Very sorry to hear Jon.

[Brian Swartz]

[JonInMiddleGA]

doctor day update:
Scans (CT) show my wife's tumors shrinking as hoped. Therefore, with chemo working, treatment will continue with round 3 through round 6, resumes 10/1 and last dose is early December.

From there, doctor is hoping to shift to immunotherapy as option one, traditional post-chemo drugs (to try to discourage/limit recurrence) if insurance and/or the manufacturer aren't agreeable to the immuno stuff.

fwiw, side effects were pretty rough for about 3 days after her first round. 2nd round impact was quite a bit less, limited mild nausea with only the pretty extreme lethargy left (I think she slept about 18 hours out of 24 around day 2). But if sleeping is the worst of it going forward, we'll definitely count that as a blessing.

[Thomkal]

Yay Jon's wife!

[JonInMiddleGA]

re: the immunotherapy stuff -- that's something we know very little about so I'll share just a bit of that discussion fwiw (to give you an idea of the conversations that take place if nothing else)

Doc warned us that insurance was not likely to be too keen on that idea but said the manufacturer he had in mind (we haven't discussed specific drug(s) to this point) was often quite generous with their stuff. My wife asked about the cost, from basically a "fuck the insurance, if it keeps me alive then maybe I write a check' standpoint.

His answer was pretty much "yeaaaaaah ... about that". Runs roughly $20k per treatment round ... and those rounds are every 3 to 6 weeks for the rest of her life. So, umm, yeah ... paying out of pocket really isn't much of an option.

[GrantDawg]

Yikes. Talk about sticker shock. I am glad she is responding to treatment.

[Kodos]

Glad to hear that the tumors are shrinking. I hope things continue to improve on that front.

Our for profit medical system sucks.

[Breeze]

Jon, excellent news, continued prayers. Also, when I was on the clinical trial back at the beginning of my treatments, I was taking the immunotherapy drug Keytruda. Obviously, that's just one of a host of options, but I can tell you the side effects of mine were pretty minimal. The biggest concern with Keytruda was the possibility of boosting the immune system to the point it started attacking organs. Hopefully insurance will work with you guys.

[miami_fan]

I am happy that your wife is responding to the treatment Jon.

I will leave my cost of medical care rant for a more appropriate thread.

[JonInMiddleGA]

Originally Posted by GrantDawg

Yikes. Talk about sticker shock.

That's kind of the reason I told the story tbh, fell under the heading of "we had no clue at all"

I mean, we're lucky that we can write checks for a stray thing here and there but, umm ... that's getting into Gates-level money

[JonInMiddleGA]

So, an update with good news, if it holds up anyhow (sorry, over optimism just isn't my thing)

Today was chemo treatment 6 of 6. Ring that bell, that stuff is over til further notice.

Last round was doctor meeting after new CT scans. Hard to not be encouraged by a phrase like "you might just be the most successful chemo I've ever prescribed. The tumors didn't just shrink, they're all but gone"

And with that news, a new bit of info previously thought unimportant also comes up and changes the plan going forward.

In simplest terms: she has a genetic marker (commonly found in patients with breast or ovarian cancers), but when that marker is found AND chemo is exceptionally effective, the best followup course involves a chemo drug in pill form (Lynparza) which has an elevated chance of keeping tumors at bay for up to two years.

So, pending a new follow up scan in early Jan, that would be the plan going forward (replacing the immunotherapy)

Lots to deal with still naturally, namely the always looming threat of new / recurring tumors (and the chemo pills have a <1% of some major bad effects ... like causing leukemia) and there still needs to be a significant upgrade in unaided mobility, quality of life, etc.

But, really, it's still more hopeful news than bad.

Our continued thanks to all for your concern and your support.

[thesloppy]

Nice! What a roller coaster you guys have been on.

[bhlloy]

Amazing news Jon

[GrantDawg]

So glad things are going so well.

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[sterlingice]

What a great update!

Is the genetic marker one of the BRCA genes?

SI

[JPhillips]

That's great news for all three of you.

[Thomkal]

great news there Jon's wife! Hope she continues to be the most successful chemo I ever prescribed