I have been silent since the end of January. Not just on the board. I am not sure why I clammed up, but I decided the roller coaster was too much for my family. Also, I have been having trouble processing my thoughts on the clinical trial.
The COVID positive from January 11, turned into a 4-week interruption in treatments. The sponsor was supportive, and so was the oncology team. Unfortunately, the numbers deteriorated during the hiatus.
ALP was in the high 60's and low 70's for most of the time since diagnosis. It spiked to 149 in April and May of 2019 when the Metastatic disease became more active. My PSA also rose meteorically at the time. .6 in October 2018 to 2.8 in January to 5 in late March and April 2019, and then 47.6 in May. I began the Firmagon injections and abiraterone with prednisone almost immediately after the tests in May of 2019. ALP dropped precipitously over the next 60 days to the low 50's. PSA came down to 4 but never went lower.
PSA, ALP, and LDH all started increasing in the late summer. The peak was in Oct/Nov 2020 when my brother passed. I started treatment on December 15. The ALP and LDH numbers were dropping every week for the first 4 weeks of treatment. Then I stopped getting medication for 4 weeks. I had my first post-COVID labs on February 8, and all cancerous growth indicators reached record levels. We also did PSA and scans on schedule for Amgen, which is 8 weeks. They showed that the Mets were moving forward. PSA spiked to 67, ALP 208, and LD 511. The measurements of those 3 things came down, but have been fluctuating weekly. ALP 155-180. LDH 230-285, and PSA 60-80.
I am in the dose-escalation phase and have been lobbying to get increased doses with all new enrolled clinical trial subjects. I have tolerated AMG509 very well. Last week they increased the dose from .03 to 1.0 on Wednesday, I got the 2nd dose of the vaccine on Friday. Friday night and Saturday I was very fatigued and lethargic but had no serious side-effect from either.
I received my regularly scheduled (8 weeks) scans and PSA yesterday. I made up my mind, I would pay them no mind and wait to see if the increased dose was more effective.
Seeing PSA at 98.1 today is making that more challenging than expected. I have the disks from a nuclear whole-body bone scan and pelvic, abdomen, and chest CT scans. I don’t have the radiologist report yet, but I looked, and I know they are not good.
The good news is that I feel fine physically. I have tolerated the treatments very well and remain very fit. It isn't easy, but I push myself to do aerobic exercise on my elliptical machine. The motor works better than the ignition, but I am pretty disciplined about forcing myself to do it. I was very tired from the treatment and the vaccine, but Sunday was beautiful, and I played golf. I amazed myself by finishing 18 holes and played great. Shot an 88 on a tough course.
The bottom of the line is that I am not giving up on AMG509, but the clinical trial is on a short leash. I am very concerned. I hope yesterday’s PSA and my bones lighting up are caused by flare from the antibody working. Time will tell.
Interestingly, the biggest medication problem for me (short-term) is a huge dose of Dexamethasone they give me intravenously before the transfusion. 9 mg intravenously has made it difficult to control my emotions. Mostly anger, but sometimes feeling sorry for myself. I asked them if we could eliminate or reduce the Dexamethasone. They reached out to the sponsor and got permission to stop the steroids. It made a big difference in the way I felt. I may have been slightly achier for 24 hours, but it was a great trade. My anger and melancholy reduced dramatically.
I was slightly annoyed to learn that the large dose requirement is only for the first 2 infusions, and the next 2 could be half the size of the first 2. I figured out that the steroids were having a profound effect. I don’t understand why I had to request a change. Slightly annoyed is a tell that I am more in control of my emotions. I don't think my oncologist knew that Dexamethasone is not a requirement for every treatment until I asked about it.
Damned if I know what to do next and why I stopped talking to everyone about it, including my family.
Thursday is my next meeting with the oncologist and treatment. It should be an interesting discussion.
Thanks for listening.
Philly13
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Philly13
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It can mess with your mind. For the last 2,200 mornings I have opened my eyes and the first thought that enters my mind is the word cancer. It's always in the back of my mind, can't seem to shake it.
Indeed you are correct. More than likely, we all do what you do in one form or another.
Cancer changes the color of everything I have seen since November 13, 2017.
I was stunned because my Dad died from Pca at the age of 60 in 1984 and I had my PSA checked frequently, but I did not know that the PSA provides false negatives in some people. My PSA was 2.5 at the time of diagnosis. It wasn't on my radar at all.
It is interesting to me that you count the days. A fast calculation in my head says you got me by about 1000 days. I have to think about processing it that way. Maybe 1000 days is a better metric.
I have been putting a penny in a jar since day one. Weighting the pennies in the jar minus the weight of the jar gives me an accurate estimation of the days.
They need a more accurate test to indicate cancer, problem unless the symptoms come you do not know if there is something wrong, mine crept up over the many years and was 7.9 in August of 2017 but symptoms started not till December when a psa went to 156. The biopsy was in January, scans revealed it had spread and chemo started in March, no family history of any cancer. They need to have scans done as routine yearly if there is a family history like you have if the insurance companies would cover it.
I think everyone presents differently and I don't think there is an easy solution. There are many accurate tests now and more coming. I have not had any symptoms from Pca or the numerous metastatic lesions throughout my skeleton. I was lucky enough to have an old-fashioned Doc doing a physical that stuck a finger where the sun doesn't shine. He said, "I feel a nodule and it is probably nothing because your PSA is low, but you should go to an expert to have it looked at."
I understand that digital rectal exams, PSA tests, and other routine methods for finding clues are discouraged. To those Doctors and administrators who say that those that have to worry for no reason are more important to the world than me because my outcome is a low % outcome, I say let me stick something larger than a finger where the sun don't shine on you.
That is my long-winded way of saying that symptoms are often too late. The need, in my opinion, is for doctors to think proactively and be good diagnosticians, capable of abstract thought.
My GP saved my life with a digital rectal exam and a suggestion. Not too sophisticated but very effective.
Jeesh ....gosh ... some of you guys are really lucky here. I don’t need pennies in a jar or emails .... I wake up in the mornings and struggle to just sit upright on the hard edge of my waterbed , holding onto the bedside and a table there. I try to clear some of the dense fog , tie my hair back again ....collect myself, breathe deep and push myself up using the bed and table ...grab the wall and balance myself so if I fall I’ll fall back on the bed. I stand there hunched over , so many discomforts and pains from my rib cage down , mostly muscular , some bone joints .... then scoot one foot then the other in front of me ... over to the bathroom ( holding walls and doorways ) and grab for the chair I have there ... feeling lucky I made it. Huffing and puffing red faced ... seriously debilitated ... ADT zombie. And this is just an abbreviated sequence. First thing in my mind, every morning , is cancer too .... but I don’t need the mnemonic aids you guys use. It’s a little more in my face I guess. Seems like you guys can count your lucky stars ... wow. About 800 days of this for me, so far. Somehow, tho , I still feel pretty lucky since my first offer of care was inpatient hospice. Waking up today makes it a good day for me as well. It’s all good.
Their explanation was in that direction, but not quite as dramatically articulated. It was explained to me in terms of safely controlling inflammation in order to prevent side effects. Because you mentioned the cytokine storm issue to me before, I felt like I understood that it is not for nothing. Since I have had no issues, they deemed it OK to infuse me without the steroids. When they increased the dosage (.03 to 1.0) last week, I got the 9mg injection of Dexamethasone again, and stayed in the hospital for 24 hours observation. As an outpatient, I stay for 4 hours beyond the infusion for observation. My routine is to see the oncologist at 8 AM where they take labs, including PK to see what is in my system from last week. Then I go to another building where I get the infusion. They measure the AMG509 in my system after the infusion. The only reaction on game day is to get tired in the afternoon, and I noticed that I also get melancholy as the day wears on. I asked them if we could cut it down or cut it out. I was surprised it was eliminated. I feel much better during the weeks that I don't take the dexamethasone. I sleep better and have more energy.
I have been one of your followers, and greatly appreciate you having shared your ongoing journey. All I can really say is that I hope you find the right path to a viable treatment option. Keep fighting as best you can.
I guess my avatar indicates my feelings about cancer. Quarantine 21st day, "So help me, if you sniff my butt one more time......" Hope things become better for you.
Yayahahahaya... I had to read this a couple times and expand up your avatar to get a better handle on your post yayahahahaya ya. Talk of sniffing butts is definitely a dog whistle for j-o-h-n. 😂😂😂😂😂😂❤️❤️❤️
( mee too i guess 😂😂😂😂)
Today both of us are fully immune buddy ... horay for us .🥳🥳🥳
Yes, sir. J-o-h-n loves to blow dog whistles, blow up dolls. I'll leave it at that. Had to quarantine right after last injection. Kids are always bringing something home.
I didn't want to be a Covid Monte and spread something around. Brother had New Years Party, and laughing, called it a Covid Party. Wasn't laughing afterwards. They ALL got covid. All better now. Was nice to meet you and The Hammer. Hope this summer is way, way better than last summer! Duckies in Cayucos has really good clam chowder.
I got a call from my friend Victor’s wife a week ago , hadn’t heard from Victor in several months ... wasn’t answering phone etc. Victor was the most healthy and energetic of all my friends ...a real dynamo. Healthy as a horse. She said they both got Covid at Christmas and he passed away from complications. A real stunner. Victor was a Christian minister and not much for masks or social distancing. Never dreamed I’d outlast him. I’ll check out Duckies .... Cambria - Moonstone Beach - Moro Bay is one of my favorite hang outs. I stay at the boutique hotel called Fireside Inn on Moonstone beach drive ... it’s just a few doors up from my favorite watering hole on the mid coast ...Moonstone Beach Bar and Grill. Their bar is brain numbing good and their three little lamb chops dinner will leave you simply stunned at how delicious those are, their seafood pastas impressive too. Been there many 100s of times ... it was part of the hammers work territory and we stayed free many times every year. Fireside’s free breakfast is the best I’ve ever seen in a hotel. Even got a make your own waffles machine and giant seagulls that brazenly grab the food out of your hand while you are eating at the tables yayahahahaya yayahahahaya. Great heated spa deck there and the rooms have little patios where you can get a glimpse of the ocean and exhale sprays from whales. Very affordable, a quite small luxurious getaway and fairly short drive to “ stinky town “ ( elephant seals ). MBB&G icing on the cake. You can check my Facebook albums for loads of kayaking photos in wonderful Moro Bay . I used to ocean kayak there and took people kayaking in the estuary for 20 years. One of the pure pleasures in life.
Can't imagine kayaking in the ocean. Two things I'm scared of: water and prostate cancer. Add j-o-h-n to that list. Sorry about Victor. Surviving Covid seems like a flip of the coin. Fireside Inn was a favorite with us. Stayed in rock room at Madonna Inn about 40 years ago. Lived in Pismo and A.G. for 3 years. Dragged to stinky town many times. Maybe Philly just needs to get out of the house more. Depression sucks. My wife once asked me "What bar do you want to spend our vacation in?" She knew me well. Variety is the spice of life. Hang in there Philly, we are all rooting for you!
I kayaked mostly in Moro Bay .... looks scary but is waist deep most places yayahahahaya. The hammer was in our tandem kayak ( me doing all the paddling course ) in the bay one time and one of those 1500 pound elephant seals swam under the boat and brushed the underside .... that’ll make you soil your shorts yayahahahaya yayahahahaya. They look big as a freight train up that close. Utterly massive wild animal, mouth full of huge fang teeth. Had another time when we got a bit too close to one of those super enormous flocks of migratory birds resting in the estuary.... we spooked them and when they took off the light dimmed nearly to dark. Got a picture on the Facebook page .... after the air cleared , looked down and I think every single one of those birds crapped 4-5 times as they took off .... ewww Ewwww EWWWWW. Omg that was nasty .. ughhhhhhh. I’ll NEVER forget that experience. 😂😂😂😂 you are required to stay 100’ away from the seals ... they look cute and friendly, but I can tell you from experience that keeping your distance is wise advice. They can be a “ bit grouchy “ at times and will chase you 100s of yards biting chunks out of your paddles and boat. Scary ...REAL scary. 😂 pelicans standing on sand bars are fearless of humans. They will jump right up on the kayak looking for food to steal. They will grab anything not tied down , like your phone or camera , and can exert enough force with those massive beaks to break bones. They get real grouchy too.
The hammer and I like to toss down a few as well. The hammer is a professional consumer, we know all the delivery guys from FedEx / wine.com by name. Yayahahahaya.
Maybe we’ll run into each other over there sometime and toss down a few buddy. 🌈🌸🌼🦋🌻❤️❤️❤️
I think it is an important point to share that since I entered the clinical trial, I get VIP treatment throughout the institution. (I am exaggerating, but not by much.) Some on the board might remember that I complain about a lack of communication from time to time. That is no longer an issue since beginning the program.
Email to my oncologist last evening:
Hi,
I prepared myself for poor results on yesterday’s test and scans. We discussed it last week.
Based on PSA of 98.1 that was the correct thing to do. I have a feeling that the scans are not good either.
I would appreciate if I could get some idea of what the scans show prior to our discussion on Thursday morning.
I am disappointed but not surprised to see a 30% increase in PSA.
As you know, I have an analytical background and personality, and I am somewhat compulsive about tracking the data. It is helpful for me to have a little perspective in advance, so my mind is not racing as we discuss things.
Thanks
Doctor response early this morning:
I reviewed the scans and they do not look bad. Perhaps some improvement in some areas. We can review in the AM.
Best
Oncologist to Philly13
I am concerned but hopeful the increased dose will produce results.
The transfusions are weekly. I was required to stay in the hospital for 48 hours after transfusion for the first 2. Then the observation period was reduced to 24 hours for the next 2. Since then I get transfusions as an outpatient. I meet with the oncology team at 8 AM, get labs drawn, and then go to the transfusion facility. I have to wait 4 hours after the transfusion. I usually get out of there at about 3:30 pm. They have been nice enough to give me a private room, so I work on my laptop and talk on the phone during the transfusion.
When they increase the dose, I am required to stay for 24 hours again.
First thing I think about when I wake up is should I scratch my balls or how can I break Kaliber and Monti's balls today.....I find either choice most pleasurable......
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