Today is my 3rd infusion of the antibody used in the AMG 509 trial. The injection gadget is hooked up as I write this, and it is entering my bloodstream at the rate of 10 ML per hour.
The first two infusions were uneventful, which is a beautiful thing. I have had no side effects to date.
The last time I reported was just before the first treatment, and I was anxious and emotional. Kaliber responded with words that were beautifully written and helped me to put things in perspective.
An excerpt follows, “In an obtuse kinda way I won’t be disappointed by expectations I don’t have I guess but I still look at what you are doing and what you have (mobility & health) and think how exciting ...even thrilling your circumstances are compared to mine. I envy you.”
Kaliber, your words helped in an immeasurable way. You changed the way I think about this as well as how I talk about it.
Thank you, Thank you, and Thank you---Kaliber, you delivered the right words at the right time to help. It is a challenge to find adequate words to express the gratitude I feel.
I am grateful for the opportunity to try this antibody and as Kaliber correctly pointed out, under the circumstances it is thrilling to be in a position to increase the probability of finding an effective treatment. There is a chance that all this is helping to punch back at the metastatic disease in my system.
I have kept in touch with the Doctors at the National Cancer Institute in Bethesda and spoke to the CEO at Michael Milken’s Prostate Cancer Foundation. The CEO of PCF thinks the AMG 509 trial is the best place for me to be at this time. The Doctors at NCI and PCF are following the progress and will be there with Plan B and/or C, if necessary.
Thanks for the help in talking myself out of the emotional trap of dealing with cancer and going down rabbit holes in my mind. I had a brief moment thinking I feel too good, maybe this is not working, but I talked myself out of that crap quickly this time.
I get the infusion weekly for the foreseeable future. This week and next I stay in the hospital for 24 hours. Subsequent infusions will be as an outpatient, assuming things continue on a glide path.
They will start to check on the effectiveness in 5 more weeks. I am not sure what all the metrics will be to measure the immune system response.
A bonus is that I get a COVID test every Saturday at Jefferson and the results are reported by the end of the day. I am permitted to see my 21 month-old Granddaughter on Sundays, even though I go to the hospital every week. That is excellent medicine.
I will take this opportunity to wish everyone a safe and healthy New Year. I hope you have enjoyed this strange holiday season and I hope we all get the vaccine soon.
Best
Philly
Written by
Philly13
To view profiles and participate in discussions please or .
Great to hear about how you and your treatment are doing Philly13. A Happy New Year to you and the family! Here's to many more years of seeing your granddaughter (and, of course, family and friends).
Thanks for this. Tough time of year, no kids for holidays and hoping for another non-covid one. This perks me up and makes me laugh. Going to rewatch the movie today. Thanks and hope 2021 is a wonderful one for you.
Hey buddy .... it’s good to hear that you can see your glass is more than half full now because it really is .... I appreciate the nice words but this is a community where all of us support each other .. each in his, or hers, own way. Just in what you are doing right now ...what you are expressing... the ability to dump those downer blues and look ahead to positive possibilities, that in of itself encourages others by YOUR example. It’s all of us here together brother ... get help and give help if possible ... that’s what we PCa brothers are all about isn’t it ...... thank you.
💪💪💪👍👍👍❤️❤️❤️❤️
And btw: tho things are a little ( ? ) sideways in my case, Im very much fine with it ... I’m very strong and I can definitely live with it. “ live “ being the key word there .... and boy howdy. I’m absolutely looking forward to the new year , I hope you are too.
Thanks for sharing what you have. It is interesting that we fight a common enemy but the physical manifestations of the fight are different for everyone. Reading your profile it seems you have been hit with the kitchen sink of symptoms for the disease. I consider myself very strong, and think that discussing my intermittent downtimes is a sign of growing strength. For most of my life, I would not do that under any circumstances.
I have a good friend who has had extraordinarily high PSA for 8 years without evidence of spread. He plays golf 3 times a week, and only started ADT 2 years ago after messing around with crazy diets and the like. His PSA has been as high as 3500 and is now about 1100 and he continues to be asymptomatic, though I think he had systemic problems as his PSA approached 4000.
Absolutely. I intend to share everything I can. Aside from being hopeful that there is a decent probability of success, there is satisfaction in participating in a study that can help others whether it works for me or not.
Kaliber does have a way with words, doesn’t he. I find his enthusiasm for life despite tremendous obstacles very inspiring. I wish you the best, Philly.
Thank you brother Dett ... hoping for a great New Year’s Eve for you and your loved ones tonight ... hope the new year is bright and happy for you’se guys too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Current status of immune therapy
Status on Xtandi effect
Who here is on Keytruda or other checkpoint inhibitor or some kind of immunotherapy?
Xygeva and questionable dental status
CDK 12 mutation and Immunotherapy
