Update : Hi All! I've been keeping up... - Advanced Prostate...

Advanced Prostate Cancer

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Update

Brbnbrn profile image
10 Replies

Hi All!

I've been keeping up reading your posts and just want you all to know that I include you in my prayers daily.

Time for an update.

Brian's PSA on Jevtana has stayed relatively stable in the mid 30's. His last 3 scans have shown no growth. The doctors are very encouraged. BUT since he's had 34 Jevtana rounds, they feel its time to move on. So now it's off to the U of M for LU-177. We're waiting now to get an appointment. Apparently the last batch they got was "defective"?

DR. V at the U said she'd actually like to see the cancer grow some before his 1st round. I'm guessing it has something to do with what Tall Allen wrote a while ago... that the less cells that express the protein to be targeted the higher the toxicity level?

He still and will continue to receive Lupron every 6 months. However, this last round of Lupron (without the Jevtana) brought extreme side effects. This is the 1st time in this 5+ year battle he's had to take Hydrocodon for the joint pain and swelling. It was a crisis for sure. He's always had the mental struggles while on Lupron, but not this physical pain. Now two weeks later he's experiencing rashes / itching and residual joint pain. His brother thought maybe he's going through withdrawal from the Jevtana? He's weaning himself off thr prednisone so that may contribute. Not sure.

I was hoping his QoL would increase off the Jevtana but it hasn't yet! Does anyone know if withdrawal may be the issue?

I'm also concerned with everything I'm ready about Lu-177's effect on the kidneys. He has Stage 4 Chronic Kidney Disease. It's been pretty stable with good diet and liquid intake.

We shall see! Comments appreciated!

Love to you all! ❤️

Barb

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Brbnbrn
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Tall_Allen profile image
Tall_Allen

Prednisone suppresses those side effects you describe, so it may be that.

I agree that Pluvicto can be toxic to kidneys if there is insufficient PSMA-avidity on a PET scan.

Brbnbrn profile image
Brbnbrn in reply to Tall_Allen

Thanks T.A. You've always been right on with thoughts, advice and observations. 🌞

PeteLG profile image
PeteLG

Thank you for your prayers. Seems like your and your fella require our prayers too.

Tuesday I begin the fourth docetaxel treatments. After #3 my PAS and AlK decreased for the first time in over a year. Hopeful!

Brbnbrn profile image
Brbnbrn in reply to PeteLG

There is ALWAYS hope! And I'd appreciate any prayers you provide! We've been blessed more times than I can count in the past 5+ years. I see an Almighty hand in many things during this journey... timing, responses to treatment, recovery... lots!

OldGuysRule profile image
OldGuysRule

Hello Barb, I am not familiar with you and your fella so this is the first post I’ve read of you guys. I truly believe in the power of prayer to God the Father, the Son, and the Holy Spirit. I will lift BOTH of you up in prayer this morning as I pray. It is difficult journey that we are on but, I have found (as the scripture says), “When I am week, HE is strong”.

Brbnbrn profile image
Brbnbrn

I am grateful OGR! And as I've said above, we've seen God's hand working throughout this whole journey. 🌞

Rolphs profile image
Rolphs

I believe in power of prayer and will say a prayer for Brian. Good Luck!

Brbnbrn profile image
Brbnbrn in reply to Rolphs

Thank you Rolphs!!! Means so much. 💕

Collarpurple profile image
Collarpurple

Hi wife to wife. not sure how I missed your post in the past but I went back and read them all. And believe me you hit it on the nail at how we feel everything .It’s been smooth with my husband for the last three years. It’s been changing a little bit, PSA is coming up . So of course I start thinking of our future and then I get angry, sad!but then I realize you never know when you’re going to die, yes my husband has prostate cancer but I could die before him We never know . So That’s how I get through it. I do believe in God and I ask that when God says Come Home,it will be peaceful and love will surround all of us at that time

Brbnbrn profile image
Brbnbrn in reply to Collarpurple

Hi Collar-P! I read often but don't really post much. Everyone here says pretty much what I would or I am reading to become informed. There are some real smarts to be found here. Also humor and love. My very 1st post back to me in 2018 made so much sense, I set the whole tone of this challenging journey on it. I was questioning published survival times, trying to get a sense of how much time we had left together. Someone advised me to NOT search out those answers. He said, "Look your husband over head to foot. You won't find an expiration date anywhere on him."

Words to live by! Every time a medication fails, a new one takes its place. With good (well... fair) diet, daily exercise, positive outlook and faith, we've surpassed the 1st "expiration date" I read back in 2018. Now on to Lu-177 which was approved in the U.S. just as the Jevtana was waning. Amazing timing... or is it? Once again, an intervention.

Thanks for posting.

Stay strong 💪 and healthy so you can be there. Caregivers have to care for themselves too ya' know!

🥰

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