One year ago he could hardly walk! After getting off all meds (except Lupron darn it) and having 6 Pluvicto infusions... working out almost every day & other typical health care regimes... we made it to the Gatornationals this month! This was our retirement dream. To travel the country & go to every NHRA drag strip. We thought the dream was impossible a year ago. But with faith, family and modern medicine we were able to add our 5th track trip to our accomplishments!
Thanks too to all of you on this site who've shared your strength and wisdom.
You all are amazing warriors!
God bless you all.
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Brbnbrn
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I was diagnosed in October 2022 after complaining to my primary of excruciating pain. It wasn’t until I went back a third time and demanded an MRI just to find out I have metastatic PC in my bones from head to feet as well as numerous lesions in lungs and liver. I was in so much pain that I literally couldn’t even get dressed without the help of my wife. 1st Oncologist I visited said I maybe had a year left.
I mention all this because I too have responded well with this treatment as I was able to get into the PSMAdditions trial. I completed my 6th infusion in August and while I too continue on Lupron, I am also on Apalutimide. But my PSA remains undetectable, my scans seem to be good and thus my wife and I are planning a 2-Week vacation to Hawaii very soon.
When my husband was 1st diagnosed in late 2017 with Stage 4 MPCA and a PSA of 1,600 one of the best things I was advised from someone on this site was to look my husband over head to toe and realize he does not have an expiration date anywhere. He said to stay off Google for prognosis. Instead I only got on the internet for research and here for support. He was right, things are happening ALL the time! Pluvicto was approved just as the last line of defense was failing. ( He'd finished 37 rounds of Jevtana) Pluvicto doesn't work for everyone but sharing hope & light that there may be something on the horizon meant for you was my intention.
It is great to have this kind of news that rekindle the Faith in God and a little bit on modern medicine.
I am currently in a vacation from all meds and regaining my life and Olán on going into a medical trial of Pluvicto for high risk G9 low volume illness with regional metastasis call it oligo if you like and I love to hear this kind of news and I feel happy for you
Thank you for sharing your joy and May God bless you!!
That was my goal! If not for hope we'd all be walking around with our tail between our legs. Prayers for hope to all the warriors out there and their supporters!
I’m so glad you posted this. I’m a car enthusiast since my childhood so I understand your excitement and enthusiasm. Making your decisions about drugs and lifestyle makes such a difference. As always I believe everyone has to choose what is right for them. 💜
That couldn't be more true. Pluvicto doesn't work for everyone but my hope is that there's always something right around the corner that be right for you. So you can make more memories!
My husband has the car bug and infected me. He started racing in his neighborhood with his bicycle at 8 years old. He had his regular bike and his "race" bike. He'd pull his race bike along with him when he road to the race site. He was a trailer queen way back then! Lol.
Having just completed my 6th Pluvicto and showing great results, I am so encouraged to hear about what wonderful results your husband has had and how his QOL has improved.
--> soap box warning
You say "After getting off all meds (except Lupron darn it)" and I agree with the "darn it" entirely.
I am off Lupron and have been for almost 2 years. How, you may ask? Well, it's something you both will need to think about and research and talk about: orchiectomy.
Do the research so you can counter when the doctors say it will weaken his bones and he has to go on monthly Xgeva. Just. Not. True.
If you do go this route then your doctor appointment tether stretches out past every 3 months and any chemo brain will go away... <-- getting off soap box
Enjoy your travels and my sincere hope that father time catches up with him before this disease!
I cannot tell you how much I appreciate that straightforward reply! I didn't consider it a soap box at all. Just your personal experience and resulting positives. I will discuss this with hubby and see what he thinks. He does not like (we) the Lupron influences in his mind. The anger, flares and other things.Thank you! Don't stop "Soap boxing"! 💜
Hi Brbnbrn, you might want to check out this MaleCare YouTube video -- it should start at around 10:00, gets to my point around 11:00 and continues to around 12:45 ending with "it's a very attractive option."
I see from your past postings that you have had over 30 Jevtana infusions. How have you dealt with so many? Are they easier to tolerate than docetaxel? Carboplatin? My Pluvicto treatments are still on-going but am not seeing a major decrease in PSA.
I can only answer from my perspective as a wife and caregiver. A warriors wife. The Jevtana treatments were after all other SOC treatments failed. It was every 3 weeks and was (as I observed) like having the flu 10 to 11 days out of 21. A small window to live life. And of course the pre and post blood test anxiety took up a few days as well.
He tolerated Zytega well, Xtandi not well at all.
What Pluvicto treatment dose are you on now? His fell about 50 points altogether. From 1st dose to the last. They said he can have a 7th when necessary. His next appointment is at the end of April.
wonderful news!!! Joe’s onc said he didn’t have any data on any one who had completed six cycles and was still alive to follow, so I’m very happy to read your post.
My Joe sis doing so very well, too. Active, happy, managing pain (mostly from having spent the last two years in a recliner 😊)
We don’t know what comes next, but we’re stacking up the good times one day at a time.
That is absolutely right! He NEVER could've even considered a flight anywhere... carrying luggage, walking thru the airport, sitting for hours on end, etc. a year ago. We thought those days were behind us. I'm so happy this Pluvicto works for him AND they told him, if his kidneys hold up, he could have a 7th dose. I'll not lie, they got increasingly worse and the 6th was hardest on his body. But after recovery and again, the good lifestyle choices and prayers, he's good enough to make more memories. He's also a great role model for our grandkids. They watch of course.
Well, this old f..., um queer's, dad had beat it into him by age 5 to keep those wrists rigid! And even 70 years later that lesson still sticks. It actually interferes with some of my Qi Gong exercises. Thought maybe after the snip I'd get more queerer but so far not even an urge to wear a dress and not the trace of a lisp. OTOH, I do seem to get more pleasure out of being all queer right up in some bigot's face
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