Doesnt take long I think to realize in the journey that just getting a response to a treatment is what you want because the flip side there may be no response at all to any particular treatment.
The sorcerer is standing over me having just waved his/her wand over my head.
Since the beginning 11/2019 I’ve been sayin the same refrain. “I’m lucky, all things considered”
The luck continues. To be in the 1/3rd that responds to Pluvicto is all I could wish for.
I don’t want to go out on a limb and completely grasp onto another piece of luck but a blood study I’m in to see if Pluvicto response will occur in individuals via a blood sample test seems to be showing accuracy. If the study continues to be accurate it shows I am not only in the 1/3 that respond but in the upper 10% that respond.
Now and thru treatment I feel basically great (of course have all my typical pains, huffing puffing, high heart rate etc.) only having pretty much complete shut down of salivary glands is only SE of Pluvicto for me.
Only crux is the unrelated Cyclic Vomiting Syndrome I developed 6 or more months ago. Its done it destruction. Caused me to not be here too much on the forum lately and even checking in less.
Again though this tamper on my PC is fantastic.
I know it doesn’t work for all and my heart goes out to those with bad results.
I finally updated my bio but took a very lazy route. Copied here and there from my Oncologist notes. Mr. Plagiarize himself ha. But hey lately my brain freezes over just trying to contemplate simply where to put my finger nail clippers.
I put on a album to satisfy my nostalgia and to lay back to.
Cool on the Traffic synapse. Wish we could hang out.
You might not know but it's great to get your positive reaction to my news.
I'll do some digging this weekend for the study info. I've felt so good sporadically that I finally cleaned and organized my home office I moved into 3 1/2 years ago and never touched. The study was in my hands at one time this past month or so. Should be able to find easily....
I have little memory of the details discussed and just have my consent form but still helpful I think. Title of Research Study:
A Liquid Biopsy-Derived Proteogenomic Biomarker for 177Lu-PSMA Radioligand Therapy in Patients with Prostate Cancer
I dont see much on the internet armed with the above title to search.
The following link is assurance as Ali who I know is listed as is the U of Minnesota as website. Ali is very excited about this. I recall study size is 28 to 30 guys.
I see biomarkers and proteogenomics, but not its name. Perhaps they haven't yet found and analyzed it (usually with chromatography). It would be great if they can develop a blood test that predicts Pluvicto effectiveness.
It would be great. I don't want to steal their thunder but my oncologist and Ali are very excited about results so far. They were dismayed when my PSA jumped up after that first Pluvicto infusion but had affirmation as my tx continued. I learned of this in retrospect. What they were seeing and discussing as I went thru Pluvicto tx.
My PSA also jumped after first infusion. It went from 7 to 21.. Both radiation and medical oncologist were concerned. Two weeks after second infusion, PSA dropped to 15. I’m hoping it will continue to drop with future treatment..
We live about 50 miles south of Flagstaff in a little town called Cornville. Lots of college kids in Flag. My daughter was one of them. We used to hike a lot of trails there and end our day at one of the really fun breweries. One of the nicest trails was close to the Purina dog food factory. Nothing like dog food fumes while you're hiking. But did enjoy the aspens in the fall. We avoid it in the winter. Lots of stupid people that have no idea how to drive in the snow. Including me.
Know your location well. I live just south of the airport and mu house abuts to the national forest so I hike the trails there daily with my dogs.
I love the four seasons and that is what drew me to Flagstaff. In the winter I try to ski one half day a week and snow shoe with the dogs the other days.
Brother Randy great to have you in on my celebration. Mr Fantasy might be right in more ways than one lol but I wont expose that part of me just now at the moment ha. Oh my. How many times have I had to remind acquaintances in my life that all those who wander are not lost. True friends and brothers like you and many here already know that lol.
Thanks again always uplifting and supportive you are. Truly appreciated.
Funny Steve in the Mr. Fantasy video looks like one of my school friends from our high school garage band days lol. Among an absolutely phenomenal group of musicians at Eric Clapton Guitar Festival Chicago in 2010 and 2016 was of course Steve Winwood. So good.
Yea sh*t to do is right. You adjust. Any day my eyes open and I dont start dry heaving is a day to do some stuff. I finally cleaned our makeshift kitchen exhaust fan for my wife just now. Now I'll have permission to spend all the time I want to prepare my fishing gear lol. I pace myself. Depending on the chore a 5 hour job takes 2 or 3 days. Thankfully I got no one pushing me. Oh the wife. Well hmmmm.
Yea time is the question lurking in the subconscious (hopefully not often in the conscious) but the time I have got thru treatments and trials even if its just the stability during the treatment thats time alive and I'm all for it.
You keep the good times going too man. I truly hope the edema is resolving.
Love ya back brother Randy. Thanks for all you do. In our world and beyond.❤️❤️❤️
Once I saw your Post Title, I knew that Congrats were in order. Sometimes HU can have a string of doom/gloom posts, so when a Wonderful Response occurs, I wanna jump in that pool😁
"All who wander are not Lost" - Gandalf about Aragon and then The Wizard told Frodo:
Mahalo for asking bout the edema, it's still present but Brother it ain't anything like the CVS - Cyclic Vomiting Syndrome that you deal with😱. I can still get my hikes in and so far my Sept thingie for my 10th yr with #stageivpca is on track. I gots two months to see if it's a Go. Stay Tuned
We gotta Live Life whilst we can, as us Croakers (Hat Tip Kaliber ) never know when there could be a speed bump or sink hole
You did well too lol. Wow hit it. What's goin on with me. Glad to have your understanding as well as others too.
This quote/insight by you is spot on: "And you got busy with chores, cuz now you don't have that Shadow hangin over you with F'in PCa, so you got on living". It fits with the CVS too. I'm on day 4 of a "recovered phase" so havin a ball ha, ha, lol.
And of course I concur and keep in my mind brother Kal's croaker speed bump advice. Its true lol. (my last speed bump was loss of 50lbs of mostly the little muscle I had and 30 hours in the hospital about 9 months ago from the CVS)
Good to hear edema isn't holding you back too much. Lookin forward to the 2 months from now. Great!
Yes, my Brother you segued from the FML stage to the "let me do stuff around the house" cuz now there's a Light at the end of the Tunnel of Life, when before it was darkness and despair
Hey bruddha , thanks for the hat tip. I kinda been not doing as much here, I have been having a pm x change with a brother here. Been a little screwed up , no big deal …. Really.
Been smok’in hot here …… upcoming days temp gonna hang around 110 - 113f. Ugly heat. Hope you been doink good buddy …. Using those springs in your legs and hitting the pavement., staying cool.
Oh man Ron you got it. You got it man. Thanks brother for jumping in.
I need a name for my to be (fantasy lol) you tube channel.
Old prostate cancer dude shows how to do mini bike builds (tips and tricks to avoid breaking bones, falling down, passing out, work smart not hard, proper 1 to 2 hour a day work schedule lol).
Speaking of and seriously I need to get more confrontational (not really) need to instead of asking my son when he's going to get his Sachs bike going again and getting the typical answer a 45 year old with 2 kids and lots of work to do: "Yea, I dont know. Needs a lot of stuff done. I might sell it". Me: "I'll help ya cause I sure would like to ride it"..
Well that hasnt gotten anywhere and so next up is going to have to be me:" hey drop it off at my place I'll get it going" ha, lol. We'll see if that goes anywhere lol. Really he's great. He has since day one when he along with me saw my bone scans has always been worried I'll crumble if I make the wrong move. Ha.
That might have put a bit of a cloud over a uplifting post so just to let you know I am feelin great. Mostly.
When I left my most recent Oncology appt. about a month ago with all this news I had a natural euphoric high to beat the band. Nice scenic drive home on a beautiful day and enhanced a wee bit by a bowl. Or enhanced by a wee bowl. Yes.
I'm livin life. Scott (whimpy, lulu700, slimpickens) said it best one time. "I feel like a teenager living at home". I said that to my son and daughter and law and they laughed. Cause here I am so well taken care of by my wife and them while I hang out listen to music, tinkering around, doin weed, ha.
Love ya brother. Keep strong and together. ❤️❤️❤️❤️
Sounds good Camps. I can see you on You Tube, “Tune Your Mini for Life.” I just hope you don’t ruin your hearing listening to Jethro Tull on full volume.
Too late for the hearing lol. About a year ago backing car out of garage wife said whats that squeaking noise. I didnt hear anything and being manly man dismissed her concern. "nothing's wrong with car".
Son rode with us about a week later. Hey dad your brakes are really squeaking aren't they. Whooops. Then I believed lol.
Subsequently in my office found an online hearing test. Couldn't hear when the frequency got higher. Thought it was volume adjustment so turned it up.Wife came running "What is that noise, the windows are rattling". I didnt hear a thing lol. This also explained why my equalizer is concentrated on bringing out the high frequencies in music lol.
You got it. I kinda wanted to put that in there but it was too obvious I thought. But still love that song. And speaking of bass it comes thru strong on strwbrry letter.
Great to hear about your Pluvicto success. I hear so many that do not respond. Just an aside - I had a mini bike as a 12 year old. It was a Little Indian (is that PC now?) and it had a 10 hp McCulloch two stroke with no clutch. Lift the rear end, run, drop it and jump on. Crack the throttle and you are doing 60 MPH. No helmet or gear. Talk about fun!
Oh no. I do have a mini bike addiction, affliction, perversion lol. What you said hit me in the heart and gut. Those are where it all started. The Lil Indian, the McCulloch (I thought they were 4 stroke ha) engines. So not even a slip clutch (CV belt) wow. Are you sure that because of the gearing to go 60mph the poor girl didnt have the torque to take off. 60 is fast with that 10hp whew!
My first (1960's) was a home made one my grandfather made to fold up and go in the Bonanza company plane on trips. I cant recall the hp. Had a pull choke cable for throttle. Techumsa engine. It ran fastest, sudden accell for a couple seconds when it was about out of gas running on fumes ha, ha lol.
that Techumsa engine sounds like me. Ran fast for the last couple of weeks while we moved, and then even the fumes ran out. A couple of sputters and coughs later and I was done
Oh no. Moved ? Would adding again sound right ? I know with all the moves in my life "Have to move" "Moving" "Moved" "Can you help me move" are not music to ones ears (and of course none of this is in regards to the intestines).
I was going to speak of my move here to the Twin Cities 3 1/2 years ago but anyway I dont know if you spoke of it here but you had one of the biggest trauma's a person could take about (6 months ago ?) . Maybe that had something t do with moving. Yea on its own its physical/mental exhaustion. Let alone.
Moved a lot as a kid, and a few times after marrying and starting a family, but lived in my last home since 1973. Five, timbered acres with streams, and a pond. Loved it dearly!!!
But it became too much to maintain, especially without Eric’s help. His passing was definitely a factor. Also too far away from medical care and from amenities.
Also, I wanted to move and get settled before any further health issues. I think we’re going to be very happy in our new place. Lots of friends and family, already feels like home.
Really glad you feel good about it. The moving. A place to live out life.
Thanks for the insight. Makes a whole lotta sense.
Wow the 5 acres since 1973. Your up there with brother Kal in the "did what I thought I was going to do". I can imagine with Whole Earth, etc. culture that location was ideal.
Wife and I left our beloved Chicago 3 1/2 years ago for place 20 minutes from our son and grandkids in the twin cities. Kinda fought it. Reluctantly gave in. Thank god it happened. Was quite an ordeal that I took a back seat to with still being sapped from chemo but also having my first effects of HT in retrospect put me in some hormone behaviour defects to say the least maybe some roid rage. I regret all that. It seemed like I was always being a wrench in anything positive my wife and son were doing.
I live a good life here, nice surroundings and townhome nestled away from the rest of the thome complex and am glad to finish out here and not where we lived in Chicago (its mostly the food we miss). Its ideal. I'm lucky again lol.
And not just luck. My Oncologist and team are pivotal in moving the needle closer so that luck can happen. But I'm lucky to have them so there's luck again lol.
Hello Campsoups, what an amazing result, I'm over the moon for you ! There is nothing like news such as this to encourage each and everyone of us on here. Cherish this day and use that positive energy to keep pushing forward, I'm sure you that you will.
Looks like the " Hole in your shoe" is mending. Have a great day and keep your office tidy.🙌
Great response. What did you do about getting another type of PET scan in addition to PSMA to account for non-PMSA avid cells? I believe TA has mentioned this before.
Did you have that complementary PET, did it uncover cells other than PSMA-avid cells, and if so, what was done about that?
Great to hear from you again CAMPSOUPS and with such a fantastic response to report. Happy for you, except concern about the Cyclic Vomiting Syndrome. How does that go and affect your life and routines? MB / Paul
Great to hear from you too Paul. I thought of you when my Doc included that my future might include: - Alternatively, I might qualify for the CONV01-alpha trial using 225Ac-PSMA-J591.
Yea the vomiting syndrome. It has gotten better. The every 6 days dry heaving every 45 minutes for 20 to 30 hours has not occured for a couple months. Sometimes a out of the blue vomit. I've adjusted to it too. The prodromal (spelling) period coming on I immediately start Zofran and other measures. I had migraines until 40 years old. The literature mentions most have personal or family history of migraines. Its a CNS thing makes me wonder if my poor bod couldn't take the chemo and 2nd and what I call 3rd level hormone tx.
About 3 days ago I ended a 2 week plus period where I was in a extended prodrome. It was a migraine without the headache. Mild nausea but mostly dizziness and trouble with visual and auditory stimuli. Had to take time out occasionally just like with a migraine and stay in dark bedroom with complete silence. In this condition I can still do things alone. Take drives. etc. Grand kids were over (5 yrs & 9 yrs old) had to dismiss myself and take time outs.
When the cyclic aspect is in play I definitely play it out so I can take advantage of feelin good. There is a recovery period, and a recovered period in the cycles.
Thanks for jumping in with congrats. You keep up the good fight yourself. I brwosed your bio. Hang loose. But wow complications you went thru after RP crazy.
dang buddy ….. this sounds like great news. It’s good too that you feel so good about it. ( hope that makes sense ). I hope the rest of things ( vomiting ) gets better too. I’ve been talking on PM here a bit, but been out of sorts , but reading some. It’s really great to get back and see someone you like doing much better. Good for you buddy …. Great to hear.
Brother Kal so darn good to have you here too in my mini celebration. (yea I think writing the post I was thinking hey I'll shout out my good news but also maybe give some hope to others that guys like you and I starting out with PSA in the thousands and swimming in mets can get a break sometimes).
Yaaay glad to have ya here in the thread. Saw you reply last night as this guy bein in the central time zone was about ready to hit the bed.
Good day. Grandkids were here for a few hours. One of those win/wins. We get their company and lovin times and my son and daughter in law get a few things done.
I've been out of it with the vomiting lately and remember still not getting back with you on some things we were talking about. You had said we were similar (high PSA, lotsa, lotsa mets) except for your mobility, pain. I wanted to say oh man you got it. Thats why I keep pestering you all this time lol. I saw you thru your words here in early 2020 and really felt a closeness to ya. Then more and more whoa there is a whole lot to ya. I'm a bit younger than you. You did a lot of what I was trying to do but in those days I was still livin at home lol. Nonetheless was able to capture some or a lot of the late 60's early 70's stuff where I sat in the middle of Iowa livin at my parents on the farm. Could drive to a head shop 30 minutes away. Get an underground newspaper. Word of mouth on latest music/band coming up. Anyway I digress. But I had a lot of sides to myself thru my life.
Stick with us my brother. You know we are in dire shape when I'm sittin here hopin your just "just?lol" havin Zometa fever.
Sometimes it feels like good news is scarce here … , the scarce good news is even better with someone you know and like brother.
Ima doing okie- doakie …. Sorta …. Somehow I’ve attracted a muscular anomaly that is very much like corporal tunnel syndrome, it’s traveling around on my body , the grand tour. lol. It’s been, lately, in my upper right quadrant but has been in my legs . I can tell it’s easing off upper right a bit but moved around my neck area and now my left arm is starting to kick off. It keeps me off the web because it’s too painful to type and finger shift pages , except right when a new dose my my pain meds is firing up , like right now writing this. Even trying to read requires motions that aggravate it. Boy , it’s always something…seems like. It all seems minuscule in relation when hearing stuff some guys here are experiencing.
Thank you my friend, hopefully I’ve just picked up a bug from the outside world and things will lighten back up. Rotflol ….. it’s seriously the pits when you are sitting here wishing / hoping I can get back to the “ messed up “! I was last week. lol. “ that way better than this 😂😂😂
Could always be worse and after you acclimate to it … no biggie. Shine it on and just get going. 😵💫 👍👍👍❤️❤️❤️
I hear you and your priestly perspective. Reminds me that before prostate cancer, I was already messed up. This is just a different kinda messed up. Actually, in many ways, my normal is pretty damn good
Dont want ya havin any of that. Crap. Take a break and hopefully get some recovery. You dont need to reply to this. Please rest. Take care of yourself. Be selfish! Thats what I mistakenly sometimes I think I'm being but its necessary sometimes for me anyway to turn off the rest of the world (wife included lol) to deal with what ails me.
Brother/friend Kal. Your at the top of my list of brothers I can relate to. That I like. so hearing from you is primo. Great to be in your realm of "guys ya like"Glad you got some uplift from my good news.
Im not going to turn this into a bummer or a whiney thing for me (actually too I felt/feel that now that I got my CVS crap out here in the open then once is enough. I wont probably mention it anymore or at least not much anyway. But here I go anyway lol. I had 5 great days in a row. Today hasnt been shaping up that way. No dry heaving but the damn dizzy, f'd up vision and trouble dealing with sensory input and mild nausea is rearing its head today. I'm still good to go though lol. Good enough to take a drive but not good enough to clean a fan or prepare for or fish. Got my 4 poles ready last evening though. So I'm ready to go.
LOve ya brother. Take good care of yourself. Ah nothing you have and do go thru is miniscule brother Kal. YOur perseverance is something else..
I can't believe I haven't asked my Oncologist that yet lol. Thru past reading I think and please don't take this as gospel but sometimes the salivary glands recover and sometimes they don't.
Congratulations! LU 177 kept me on the planet last year and I am grateful! My doc said that sometimes the immune stimulation will keep it working for awhile. Love the Traffic reference, it's slipped my mind and will be listening to Dave Mason(Only You Know and I Know-etc) and Traffic-Low Spark of High Heeled Boys was a great listen. Yesterday a friend took me over to his car to hear a low fi recording of a blues band he played in circa 1970 in Louisiana. He's transferred it to CD and we sat and talked about the music in those days, electric blues from the likes of Freddy King and Buddy Guy, Soul, civil rights and the fact that his band was the only integrated band in the state. Wild times and some progress toward a better world.
That's some cool stuff up my alley you speak there ha. Including nod to civil rights.
Yea as much as I hold onto Traffic, Jimi, Led Zep, Wishbone Ash and the like etc. There came I time I was glad we had those times when had just AM radio. Got exposed to a lot of music because of it. My son as a teen being turned onto Pink Floyd and the like by me was blown away too by the Al Green music I turned him onto. That kinda thing. Anyway. So Soul, R&B,Blues are all in my chest and then some.
When I listen to Traffic I'm listening to Traffic (lol) I don't think about it being Steve Winwood there. You think about it and he actually has a varied history. Spencer Davis Group, Blind Faith, Traffic.
I was only 10 years old when Steve Winwood (1966) sang Give me Some Lovin. My mom would drop my siblings and I off at the pool and that song was blaring from AM radio out a PA speaker and only 10 but I felt a lot of emotion(s). Imagined myself belting out that song.
I lived in Chicagoland for 23 years and was lovin the blues before I got there so to be there was heaven. Until it shut down there was a blues club about a 5 minute drive from me. When I first moved there a guy/new coworker said the guys were going to meet at such and such bar for some food and drinks and that the bar had "some kind of, hmmm jazz or something music". So I get there to this place that it 5 minutes away from where I have just moved to and in the entry way are the dates pinned on the cork board of when Koko Taylor will be there, Buddy Guy, Junior Wells, etc. That first night I was there Magic Slim and The Teardrops were there.
Im callin it quits getting worn out lol. Thanks for the good words.
Someone else asked that and again I have to say amazingly I didnt ask that question. I guess I was/am to wrapped up in the good news that I had a good response and in my case even if it is permanent it isn't a big deal to me in the big picture so it wasnt top of my mind when I've been seeing my MO these past months.
I'll ask my MO at next appt. in August.
If I remember correctly from past reading the damage can be permanent for some and not for others.
I just now read a comment on another thread from Tall Allen. I quote him here (copied and pasted--Thanks brother Tall):
"The only success they had with dry mouth from 225Ac-PSMA-617 was with "sialendoscopy." That involves sticking a flexible tube into the opening of salivary glands to dilate the opening so that saliva can flow out. The opening gets constricted due to inflammation (hopefully, the same inflammatory response in prostate cancer tissue is what will make your experimental ADC medicine work!). A similar procedure can dilate your lacrimal glands as well."
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Pluvicto results (good news), next steps
What to do?
Looking for support in supporting my husband 
Question, each month with rising PSA, when do I do a pet scan 
