F*** You, Cancer! Catch all

mudbunny wrote:

They found something "abnormal" on my dad's most recent CT scan. Combined with high CEA levels on his most recent blood test, it is back into the system for round 3.

Back into the grind (for him) and the worrying (for me.)

You don't really need sleep, right?

If you ever feel like shooting some zombies or coop to get your mind off it, holler at ya boy in KC.

Sorry to hear it, brother.

Hopefully since it's his most recent scan, they found it earlier.

Well, I guess I'm ready to do this. A few months ago, I was diagnosed with stage 4 metastatic prostate cancer, Gleason 10, mets to bones with regional carcinomas. I'm currently on ADT therapy and adjusting to the new realities of life with no testosterone.

While the side effects of fatigue, hot flashes and depression are present, they are not crippling. So far nothing worse. I'm not in serious pain (the ADT knocks back the prevalent hormone sensitive cells and until the hormone resistant ones take over, I should not be in significant pain). This could take months or years, most likely the latter, then I will add chemo to the mix, and hopefully I have the right genetics for some immunological trials that are coming up. So for now, it's a struggle against side effects and existential fear. With luck, though, I will make it to the point where they have therapies that can put both types of cells in permanent remission. Without that, life expectancy is about a third of what it would normally be for a man my age.

Good thing I've lived with anxiety all my life. I feel pretty well equipped for the fight. Still working and doing regular stuff and I expect to be for a good long while, but I will feel more comfortable after the first six months past and I'm convinced the progression has been slowed. I'll post updates as I get them.

I count all of you as friends and this is the first notification I've given outside my immediate work/family/intimates circle. I feel better letting people know, it's just been a matter of getting my feet under myself again and getting past the (unfounded) fear of immediate death. Now I need to work on my lifestyle.

If anyone is going through a similar situation with prostate cancer, feel free to PM me if you want to talk. Totally open to it. Just remember, this is not the friendly radiate or cut it out kind. It's long past that point. It's also not going to succumb to special oils, almond pits, chi manipulation or Ivermectin lol. The big challenge will come when it comes time for chemo. That will be interesting.

(BTW, not a fan of the scatalogical sloganeering yells against cancer. That does not motivate or comfort me. I associate that kind of yelling with people who are trying to hurt me so please at least spare me that...)

Love to all. Treasure every day and every moment within it. Death is a part of life. "Death comes to all and no man knows the hour; remember Death." Our ancestors were wise...

Stay strong.

You and your family are in my thoughts, Ro.

Lots of hugs to you and your family Robear.

Really sorry to hear Robear but am impressed with how you are framing the fight. I wish you the very best on your journey and thinking of you and your family.

Robear wrote:

Well, I guess I'm ready to do this. A few months ago, I was diagnosed with stage 4 metastatic prostate cancer, Gleason 10, mets to bones with regional carcinomas. I'm currently on ADT therapy and adjusting to the new realities of life with no testosterone.

While the side effects of fatigue, hot flashes and depression are present, they are not crippling. So far nothing worse. I'm not in serious pain (the ADT knocks back the prevalent hormone sensitive cells and until the hormone resistant ones take over, I should not be in significant pain). This could take months or years, most likely the latter, then I will add chemo to the mix, and hopefully I have the right genetics for some immunological trials that are coming up. So for now, it's a struggle against side effects and existential fear. With luck, though, I will make it to the point where they have therapies that can put both types of cells in permanent remission. Without that, life expectancy is about a third of what it would normally be for a man my age.

Good thing I've lived with anxiety all my life. I feel pretty well equipped for the fight. Still working and doing regular stuff and I expect to be for a good long while, but I will feel more comfortable after the first six months past and I'm convinced the progression has been slowed. I'll post updates as I get them.

I count all of you as friends and this is the first notification I've given outside my immediate work/family/intimates circle. I feel better letting people know, it's just been a matter of getting my feet under myself again and getting past the (unfounded) fear of immediate death. Now I need to work on my lifestyle.

If anyone is going through a similar situation with prostate cancer, feel free to PM me if you want to talk. Totally open to it. Just remember, this is not the friendly radiate or cut it out kind. It's long past that point. It's also not going to succumb to special oils, almond pits, chi manipulation or Ivermectin lol. The big challenge will come when it comes time for chemo. That will be interesting.

(BTW, not a fan of the scatalogical sloganeering yells against cancer. That does not motivate or comfort me. I associate that kind of yelling with people who are trying to hurt me so please at least spare me that...)

Love to all. Treasure every day and every moment within it. Death is a part of life. "Death comes to all and no man knows the hour; remember Death." Our ancestors were wise...

We got you boo.

My Dad had prostate cancer. Went through the surgeries and the radiation treatments (not chemo) and was declared cancer free and then it came back did months later and then he went through it all again and he was declared cancer free again and now it seems to have stuck, 2 or three years now with no recurrence.

So I guess he "beat" it, I guess he's one of the lucky ones, but I know the testosterone thing really f*cks with his head. I don't know all the details, he's a proud man and I don't pressure him to share more than he wants. If it helps him keep some dignity to not share everything he's going through with his son, then the least I can do is not push and choose to be grateful for what he does share with me instead.

All of which is to say that I don't know exactly what you're going through but I know enough to know that it f*cking sucks.

Yeah, well, it was found well after the time surgery and radiation could have killed it. Now if I get radiation, it'll be to kill concentrations causing pain. Best hope is to follow the Standards of Care and wait for better system fixes to come along. Testicular cancer had a death rate of 70% in the first year a few decades back, then one drug came in and something like 70% of men with it were suddenly curable. I'm hopeful.

WizardM0de wrote:

So, an update which will be a wall of text, then an ask for your advice:

We almost lost him again, but my son is still here. He's been in the hospital for over a month now on this latest stint. The gameplan going in? As usual, get him back into remission (for a 5th time), and since the transplant was no bueno on its own, re-try KAR-T with the donor's new immune system/T-cells since his own (prior to transplant) were such crap and petered out in the lab. Sounds simple enough, right?

Hah.

Variables this time around:

-New bone marrow transplant still in the process of being eased into service with immuno-suppresants to prevent graft-vs-host disease

-Leukemia came rushing back. Started out barely detectable in his marrow and in a matter of days was over 70% of the cells in his peripheral bloodstream.

-Immuno-suppresants had to be immediately halted so his new immune system could fully participate in the dance-off (TO ARMS, TO ARMS!) with the rapid onset of leukemia while they torpedoed him with heavy-dose chemo.

-The chemo did its thing, wiped all his cells out, but the halting of the "easy there, pardner" immuno-suppresants caused ACUTE graft-vs-host disease in his entire body, which essentially means this rad new immune system started devouring his brain and other organs instead of just bad cells.

-Yes, this flavor of acute GVHD is usually fatal, we've spoken to several families who lost their own to this precise situation.

-But my son being my son, I guess he just doesn't go down that easily. The immune response was so strong that his brain essentially took its consciousness offline so it could attend to basic physiological function and buy the treatments time without stress response getting in the way.

-So my son went away and was replaced by a snarling, furious, scared, and completely confused childwolf who didn't know who he was, where he was, who we were, why he had all this stuff going in his body, what was happening, etc.).

-When you're depending on the patient telling you what ails you so you know what to treat in such a situation, and all the patient can do is cry, attempt to punch you in the face, and scream for his Mommy (who's right there, he just doesn't know it), responding in the moment to these rapidly evolving issues becomes problematic. This lasted over a week and we all had to troubleshoot on his behalf based on our circumstantial evidence and their scans and tests.

-He finally came around as the leukemia was killed off and anti-inflammatories, drugs to reduce brain fluid/swelling, etc. went to work. They wanted a brain shunt, we said no. It was a huge risk that paid off. It could've easily gone the other way.

Where we are now: familiar territory, though with new variables of course. His counts need to come back so he can leave the hospital and they can extract millions of T-cells to be reprogrammed as super solders (again, but remember: new recruits). But his counts just. aren't. coming. back. Why?

Each day is a new guess. We've gone through theories bleeding around his g-tube site in his gut (multiple procedures to scope and remove clots down in there), to viruses that got treated, to certain medications being too count suppressant in combination with each other to other things. Right now the theory is parvovirus is being burdensome again (yep, that good ol' slap cheek disease that most kids get and they're done in 3 days...he got it after he was diagnosed 5 years ago...it's still there), so we're back on heavy IVIG treatments this week to see if it does the trick.

Here's where you come in:

Imagine for a moment you've been living this hell since you were 4. It's all you know, and the entire time you've been good natured enough to not have a reason to feel defeated. There's always been a plan, always progress. Yeah, a step or two back here and there, but always within your mental parameters of being able to "keep your shit together," mentally speaking (literally speaking each day is a fiasco in that department), and your parents have remained hopeful and confident throughout, so you go with it, feeding off their energy.

Now you're almost 10, a month into yet another hospital stay - and you've had at least half a dozen long stays - after you just got done with the "Final Answer" of a months-long transplant process to the point of various hospital and family celebrations. You felt liberated, and now you're right back there.

Your go-to board games, Fortnite/Overwatch/whatever video games you love, your favorite candy and snacks (when you can eat them), cuddling with mom, your favorite jams on the JBL boombox in the room, all the movies on Netflix and Disney plus you can watch, care packages galore, your favorite Youtube streamer bros, FaceTime with friends and family, any fun activity from any fantastic child therapist you could imagine....well, you've reached a point of diminishing returns on all of it after such a long battle. All you want, all you need, is to get out and go home.

But you can't. That's not up to you. It's up to your body responding to what the doctors can do. You have zero control over it, and every day they round on you, they have more bad news and questions than answers for you. The only tool you have is your lifelong carefree spirit, resilience, and your positive outlook regarding the future.

Bad news, your carefree spirit and resilience are shells of what they used to be and your positive outlook regarding the future is a bulb that's dimming more and more by the day. Your guardians in the room are trying their best, but you can see they're struggling as well, and they're not able to give the exact energy you've been feeding off of this entire time.

So where do you turn? Is there anything you've come across in your life to help you relate to such a situation that you can fall back on for perspective, to identify with, be inspired by, find support in? Is there a book you read about resilience and positivity in the worst of times? A movie? Was there a purchase in your life that was life-changingly glorious or a hobby that totally gave you a drive and sense of purpose you never had before, now that you think about it? Anything out there that would slap your brain around some and not give you a choice but to chin up and have some fun, lose yourself, etc. (not associated with illegal substances)?

I'll do anything for this kid, and it's go big because you can't go home territory, but we're not going to add anti-depressants to the laundry list of things we're pumping into his body. I'm just out of ideas.

Hi Wizard, I am so sorry to hear about your son’s condition. I’ve been following and haven’t known what to say, so I’ve mainly been lurking. Please know that with what I want to say, I wish to start with it is not an even comparison, your son has it much, much worse than I ever did. The fact he is still can maintain that “mask” (what I call it when I interacted with family/friends when I don’t feel well) is extraordinary, and reflects well on you and your family in general. My experiences are more the result of mental illness (early onset bi polar) mixed with chronic kidney disease (kidney stone attacks between 1-4 times a month for close to 22 years or so, with a injuries that required surgery or PT every year or two, I had been in every child er room at our hospital multiple times, both the long and short term sides. Anyway thats my frame of reference, so again, it is not the same as the agony your son continues to endure, but I can relate to losing yourself and being in pain not knowing why, lashing out at parents who are struggling themselves. What helped me was finding others with disability to talk to. For me it was wandering around the ward, and talking to the nurses that saved me, this may be a weird question but does your son easily talk to adults as other kids? I started talking to the staff just out of desperation and even though it didn’t… it wasn’t the same as talking to someone my age, but knowing what is going on brought me some comfort in my hospital stay. On the psych wards, I had to realize why I was there, in the ER/hospital it was more I was so bored I just wanted anyone to talk to. Again I realize this requires your son to be able to speak to adults easily, so this may not work.

Again I am so sorry to hear about your son’s situation and I don’t want to come across as comparing conditions. I just have spent a not insignificant fraction of my life dealing with chronic illness, and out of everything you listed this is the one thing I could think of aside of the wonderful coping mechanisms you all have provided for your son. If there is some way that he can communicate with others in a similar situation preferably on the same ward, speaking from experience, it will mean a lot. I hope this is helpful and wish you and your family the best of luck.

Wanted to add a small bit but didn’t want to contribute to a wall of text. I specified someone else on the ward or nurses because they, in different frames of reference, know and understand what is going on, more so than his friends who do not deal with this. One of my closest friends bonded with me because we both grew up in the hospital and have always been chronically ill, we both have similar conditions in a sense, and others that share a level of rarity, we are close enough friends we introduce each other as the only person we know who has it worse than us (we both enjoy gallows humor). This kind of makes me think of another avenue to go down for coping, but it’s much trickier and more difficult to pull off. My friend and I enjoy gallows humor which doubles as a coping mechanism, she nor I could not survive if we did not find a way to minimize our condition by laughing at it. Not treating it as a joke literally, but… I’m not sure how to best describe it, but finding small things to poke fun at during treatments, maybe a bruise looks like something funny, maybe a medication sounds entertaining if said slow or fast. Granted these are small examples, it’s really hard to explain, but I cannot really say what will or won’t work, you know your son better than almost everyone (but himself).

Robear wrote:

Yeah, well, it was found well after the time surgery and radiation could have killed it. Now if I get radiation, it'll be to kill concentrations causing pain. Best hope is to follow the Standards of Care and wait for better system fixes to come along. Testicular cancer had a death rate of 70% in the first year a few decades back, then one drug came in and something like 70% of men with it were suddenly curable. I'm hopeful.

Well, that's awful. Here's hoping for the longest of the timelines to play out, and with the highest quality of life.

Prostate cancer scares me something fierce since my grandfather died from it before I was born. His type is readily treated now in part thanks to him and all the experimental treatments he went through.

Stay strong.

Thanks, Garion, and everyone. I will keep updating as things progress. Hopefully I won't need to very much for a while, but the initial treatment only takes out some of the cells, while the others grow. So when the pain hits, I'll need to start picking treatments. Not looking forward to it. But I'm gonna keep going on until then, as usual.

FWIW, I know a guy who has metastatic prostate cancer, spread to his lower spine. He's been trucking along on hormone therapy for at least 4 years now (maybe more, not sure), without any change in status.

I hope things go well for you.

Oh no, cancer, you will not take GWJ superhero Robear. That is a promise.

Thank you, gewy, it's that kind of thing that I'm focused on. Still getting my docs in line but I'm looking forward to the six-month scans and getting an indicator of where that will take me. Hearing those stories is pure emotional gold.

Also, my best to your friend.

If people ever wanted to know where I get my positive attitude from, just look at the messages from my dad.

Hey son, bad news: the cancer has returned, and nothing can be done; I just have to wait till it spreads, and when the pain starts, they may be able to ease the pain with chimio. A day-to-day expectation. Could be a year or more or less !! Life goes on.
No operation possible; they would have to remove the bottom two vertebraes, and I would be a vegetable. and bedridden; It has not spread yet, but it will some time in the future; timeline is unknown. I talked to [mudbunny's brother], and he knows. Life goes on, brunch is fine !!

F*CK!!!

I mean, after seeing the previous medical info he provided, I knew this was coming. Doesn't make it any easier at all.

Sorry man.

Here's hoping for many fine brunches!

Jesus Christ. "Brunch is fine!" What a Dad thing to say.

I'm so sorry, mudbunny.

It's something to learn to accept, for when your own time comes. I'm sorry for his (and your) situation, Mudbunny, but I'm super glad to see he's enjoying every day with gusto. That's what counts.

Okay, well, update for me. Aug 3 PSA was 51.75. PSA from Monday just came in - 0.55. That means the ADT therapy is working well. So we’ll see how long it works for me but I think that’s a good result.

Great news Robear, so glad to hear it.

My son is still in the hospital since we entered again 9/3, the ICU to be exact. He had fevers for a bit and then the leukemia came rushing back instead of healthy cells, swelling up all his organs and putting pressure on everything in there. They had to act quick with immunotherapy, but they did, and it seems to have slowed things down.

The problem they're managing around now is internal bleeding with still severe neutropenia (extremely low hemo and platelet counts). He's been in this situation for weeks and had two significant bleeds that they had to react to with gusto. Where we are now is a race between meds to stop bleeding/shrink vessels/grow white blood cells (to heal his body) and something big happening with surgery being a very, very risky proposition. It's horrifying, and the doctors can't seem to stop sharing with us how dire the situation is (we get it folks, can we get back to creativity and hope please?).

Somehow he's still his positive, good-natured self, though for the first time we've had nights with him in tears from the overwhelming feeling that he's never going to get out of there. Really tough to hear and try to coach him through, but we're helping him take it one day at a time.

I continue to be in awe of his strength and resilience. There goes my hero.

That's a lot for a 10 year old. Good luck, wizard. Wish there was something we could do

Thanks Wizard. He seems like a tough kid but he's allowed to be scared. I'm glad you're there to help him through it, and I wish him the very best result as he battles through this.

This is one of the hardest threads to open and yet one of the more meaningful ones

Love to all of you.

This is good news for anyone with the major cancers.

I keep smashing the like button and it isn't going up more!
About damn time

I've successfully transitioned from painful Eligard shots to nice Orgovyx pills. They fight with the Erleada so I have to take a double dose, but the outcome of that is that the Orgovyx is simply metabolized more quickly, so the side effects risks are probably not increased. I'm already more comfortable and less tired most days.

Part of that has to be that the metastases are being pushed back by the ADT therapy. The more space they take up, the less the bone marrow can work, so if I'm feeling more energetic, stands to reason my red blood cell count is going up.

As a bonus, my Dexa (osteoporosis) scan came back normal and showed I'm starting the fight with strong bones, which is another great piece of news.

I am happy and content today. We ordered some sushi and unagi don ("Eel Donald", I think) and the chefs today are completely on point. They even used real wasabi, none of that evil green reconstituted horseradish. What a good celebration!

Scans to see if the cancers have spread will be in late January. I'm looking forward to them but mostly to another good month, full of holidays and gift-giving and hanging with friends. Thank you all for being here for me. I know that is a self-centered way to look at it, but you all are one of my big support groups, and you really help keep me centered when I have anxiety and questions and doubt. I appreciate everyone who has reached out to me, and... just everyone here. You're good peeps.