Update from my husbands SP Aug 2

[Kimmilemo]

Husband DX 2008 with APC Gleason 8 No Mets

Three months of radiation followed by Lupron

Reoccurrence DX Feb 2018 Gleason 8

SP surgery done on Aug 2

Results - margins positive reached the neck of the bladder

My husband has had a hard go of recovery. He has been to the ER five times . Twice for kidney stones (he never has had) once with bladder infection after they took the catheter out after two weeks. And then twice last week for pain of the new catheter they put back in two weeks ago. Lots of blood and not draining properly, they had to redo the catheter Thursday. Still complains of being sick at his stomach.

He goes in two weeks to hopefully get his catheter permanently out. They say the blood can be from the radiation he had years ago. He has been off work since July 4th, and Dr have him off till Nov 5 .

My main concern is his psa did not get to under 1 and since the margins are positive they talked about doing Lupron next when he goes back for his next PSA and MO check end of OCT.

We get our care at CTCA in Zion Ill, both times DX

We live in Saint Louis MO

I feel uneasy with just the offer of Lupron they mentioned something about castration!

If this was you those that have great knowledge. What would you do next?!

Thank you in advance

Wife and caregiver of Mel

Kim

[Tall_Allen]

Lupron is a good next step.It is chemical castration because it shuts down his body's ability to manufacture testosterone. He should be under the care of an oncologist. Unfortunately, there aren't many therapies approved for is situation (non-metastatic and hormone-naive) but sometimes oncologists can get around insurance companies.

[Kimmilemo in reply to Tall_Allen]

Thank you @Tall_Allen I always respect your advise.

Did you give me a name once of a oncologist in Saint Louis? I’ve been trying to find it. He does have a oncologist at CTCA. Dr. Evan Pisek.

[Tall_Allen in reply to Kimmilemo]

I would think that Siteman has some good ones, but a name doesn't come immediately to mind.

[Kimmilemo in reply to Tall_Allen]

Also why would someone need to have ablation done. Someone in the ER mentioned it because of his catheter issue?

[Kimmilemo in reply to Tall_Allen]

My husband always has low testosterone and low psa before treatments even start?

[Tall_Allen in reply to Kimmilemo]

Low isn't good enough. It has to be castration level (below 50 ng/dl) to stop the cancer, and below 20 is even better.

[Kimmilemo in reply to Tall_Allen]

Yes, that’s what his oncologist said as well. But prior to getting any treatments once he is diagnosed with having PC his testosterone and his PSA are on the lower of the spectrum

[Tall_Allen in reply to Kimmilemo]

There is an association between chronically low testosterone and PC. Types of PC that put out less than average PSA tend to be more virulent.

[Kimmilemo in reply to Tall_Allen]

That’s what I’ve heard. That is why I was wondering if Lupron was the best next treatment.

[Tall_Allen in reply to Kimmilemo]

There's a huge difference between chronic low levels of testosterone over many years, and using chemical castration to stop the cancer in its tracks.

[Kimmilemo in reply to Tall_Allen]

That’s what I was looking for. Probably shouldn’t have the surgery this time around but they didn’t offer anything else once they staged it and was done with the scans. I think this surgery is going to have lasting bad side effects.

[Tall_Allen in reply to Kimmilemo]

I agree. Salvage surgery is certainly the worst of the salvage options after radiation, but if that's all you can get, you're stuck with it. No point in dwelling on it - the best you can do is don't look back or to the future, but just take it as it comes.

[Kimmilemo in reply to Tall_Allen]

Thank you , and how are you doing? Thank you again for all the support you give to everyone on this forum. You are truly a difference maker.

[charlesmeyers1964]

dear once your cancer comes back matters no special tx it will come back and if he lives a nice old age and the cancer doesn't kill him then be thank ful. the average normal male has a psa of 0-4.0 now i've been teated for 10 years and due to the fact i can't get my zytiga my psa went from last month from 28-60. i'm on a new tx called PROVENGE its not a cure all and there is none. u got it u will have it till he dies. what u want to do is make sure he dies from something else like, old age heart attack etc

charlie

[Kimmilemo in reply to charlesmeyers1964]

Thank you Charlie, I think I probably know this but I’m in denial. I’m so sorry you can’t get your Zytiga maybe the Provenge will work better for you? If not can you contact the Zytiga company?

[billy1950 in reply to charlesmeyers1964]

Charlie, is it that you can't have any ADT...I have afib and wondering if I am able to have any kind of hormone treatments...thanks, Billy

[mcp1941 in reply to billy1950]

billy1950

I am on Erleada and have A-fib. no problen with that but with high blood pressure.

[jackdrum]

Hi Kim. Sorry about your husbands problems. The Lupron is chemical castration, instead of physical castration, and has similar side effects I was told.

I have been on Lupron and had many rough side effects and I asked about the actual castration and that is the information about side effects. They told me the side effects are very similar, so I decided not to go that route.

Hope your husband does better.

I am a long time survivor as June 26 was my 28th anniversary of the RP. I am now stage 4 but still not doing real bad. God has been good.

Jack Drum [e-mail]

[Kimmilemo in reply to jackdrum]

Jack,

That’s awesome ,way to kick it back. How long were you good on The Lupron?

[jackdrum in reply to Kimmilemo]

I was only on Lupron for 9 months, as my PSA went back to 0.15. It is now back up to 3.16 on my last check 2 months ago.

I will see my oncologist next month so if my psa jumps any more, I will go back on Lupron.

Jack

[Kimmilemo in reply to jackdrum]

Keep up the good fight!

[ronnie1943]

Hi Kim, Sorry I can't be much help, I'm not to well versed on all this, so many more on this site are far more educated on the subject and can be of more help to you. I just wanted you to know I'm thinking of you and praying for you and your husband. I am also a care giver. My husband was 65 when first Dx, he is now 75 young.it was such a shock way back, he had a tumor that had wrapped around the bone in his left arm, the surgeon and was able to save his arm, long story short. Went on hormone shots, and casodex for .ets say eight years We thought this is o.k., we can do this!! Next was Zytiga, Xtandi, after they quit working this past summer Sam's cancer came back with a vengeance. Tumor grew up from the prostrate and blocked the kidney tubes, nerostomey tubes for seven months, 12 chemo treatments, 5 weeks radiation. After all that had a cat scan and there were lymph nodes,Sam was put back on Zytiga, didn't work for him. PSA kept rising.had Biopsy and he did not qualify for immune thearpy, Sam is now on a targated therapy drug called Cometriq, he's lost

thirty seven pounds, mouth sores, bath room issues, terrible fatigue.nausea, there are days he can't even lift his head off the pillow. I'm so worried, so scared of what is next if this does not work for him. His oncologist said its working but we still went for a second opinion. We were told by this dr. Cometriq was not working, he told Sam he looked bad. Could tell he felt lousy and at best he had a year to live.???? Who do you believe.??? I can't wait for our next app. With our regular oncologist to see what she has to say???? I have had a wonderful marrage and its heart wrenching watching what thos terrible disease can do both phycially and mentally to a person.

Praying for all on this site🙏🏻 keep us listed Kim. Take care. Lynn

[Kimmilemo in reply to ronnie1943]

Oh Lynn, my heart is breaking for you and your husband. I read this out loud to my adult daughter and my 16 year old daughter and they both said they would be praying for you and your husband. They were touched by your testimony of your all’s journey.

I hope someone that knows more than me can lead you to one if the trials out there to give him another good run at it.

Don’t give up and keep the faith, God will turn our faithfulness into Gold.

Your new friend and fellow caregiver,

Kim

[ronnie1943]

Thank you so much Kim for your reply!! we become like family on this site and all of us know what each are going through. I'm thankful for the years that Sam has had since he was first Dx and I thank God everyday I'm still strong enough to care for him.

Again it was so nice to hear back from you and we are still going to keep up the fight. Cancer can't take away our hope and our faith. Thank your two daughters for there prayers. Daughters are wonderful, I have one daughter, she is fifty three and a son forty seven.

Take care your new friend. Lynn 🙏🏻💗😘

Keep me posted...

[Hidden]

Good luck and heal well. My first reaction is that he is not drinking enough water; hence the stones. Many think that if they cut back on water, they will not have to pee as often..... mistake. Please discuss this with your Uroligist/Oncologist.

Gourd Dancer