Any hope for my hubby - metastatic, Gleason 10

Hi there

just wanted to add that my hubby was 61 on diagnosis, PSA only 25 but spread to bone and lymph and a Gleason 10. That was in Dec 2010. Back then I couldn’t find many people with a similar diagnosis. We are now sadly in the final stages but never, ever thought we’d get nearly 9 years. Hubby only has chemo late last year due to being on the old protocols, our onco believes in waiting to use a treatment until the optimum moment and it has worked well for us.

good luck

Devonmaid xxx

Update on my husband Arden:

Oct 21 appt at Mayo - PSA 22.4

Back on Oct 25 for scans.  New mets in ribs, spine, and hips.  Two large tumors on both adrenal glands, each 5.5 centimeter (2 inches).  

We are numb and terrified, already spread to organs and only 13 months in.  Arden will have biopsy on 10/30 of the adrenal tumors to help them determine course of treatment.  Dr says a new trial just opened 2 days ago that might be the right aggressive approach.  We are putting our trust in this Dr and Mayo.  However I do have reservations about a new trial (which we don't know the name of yet) and the desire to get people into it versus it being the right one.  We had talked about immunotherapy at our 10/21 visit and also bicalutimide/abiraterone, and radium 223.  I suspect radium is now off the table since there is spread to organs.  And Dr says he assumes it is in lymph nodes but no scan has ever stated that.  Is that just an assumption?

We feel like spread to organs is a death sentence, we can't even function today.  We've got to pick up our boot straps and get in a better frame of mind.  We feel completely hopeless.  And we are to leave for holiday for 10 days on the 31st to Budapest, Vienna, Prague and Berlin.  Dr says go ahead and make the trip, he is not in any imminent danger.  He is still feeling pretty good.  Dr said stop Enzalutimide asap as he has to be off it for 4 weeks to start a trial.  So he'll probably feel even better.  Still on HT shots every three months.  Had one on 10/21.

Thoughts? 

Let me say here we are not in the UK.  I have not found a forum here like this.  I am beyond grateful I am allowed to post here and read your posts.  Thank you for listening and providing insight.  

Saint Paul

The decision about whether to go for the trial is a tough one. Personally, while there is still a chance of prolonging life I would only go for a trial if there was no risk of being allocated the placebo without knowing. If life could not be prolonged and all treatment options had run out, I would consider a blind trial on the basis that it may save men of the future. If the trial is open, so you know that he is getting something active rather than a placebo, what is there to lose? Tough decisions :-/

Sorry forget about testosterone.  It was 11 in June.  Dr says didn’t check it in Oct and assumes HT is keeping it down.  I told him we want it checked more often.  

Here we go - yes 11ng for testosterone.  

Hi Saint Paul ,

i don’t look in on the forum very much anymore but your post just reached out to me . Our journey ended on the 1/11/2018 .

if you want to read our journey it’s under Trevor Boothe , I am his wife Julie and all of the posts are from me because throughout his journey he never posted . 

This forum was my life line for almost 5 years , even though I had family and friends to turn to the forum was for me my support network from people that understood.

I hope that you will find the same support ! 

Just a very short recap of our journey to maybe help you , if you read my posts I have used genuine humour to tell our journey from start to finish .

so Trevor had 3 major heart attacks , before being diagnosed with terminal pca . His initial pas was 13000 with extensive bone mets and lymph nodes invasion . His bone mets where extensive throughout his whole skeleton.

we knew from the outset that every treatment was only to extend and prolong his life . Radium 223 was his last extending drug .

But and if you read any of my posts my famous BUT is legendary. But even with the worst case scenario Trevor lived and I can only emphasise LIVED in the most positive way for almost 5 years with the worst case scenario. 

Make every day every hour count , because we could have wasted 5 years and that 5 years was precious.

BFN 

Julie XXX

Julie - today was the day I needed to see some hope and there was your post :)  You are a blessing to take the time to respond.  I have read your bio more than once and very familiar with you and your husband's journey.  I keep my tears and fear to a minimum and when I am alone.  It took us some months but we live in reality now and know every day is new grace.  I appreciate your affirmations.  Thank you so kindly!

Judy in Saint Paul, MN

Thank you Franci!!

Jan 19, 2020:

We are two months into the clinical trial.  No improvement in that all tumors & mets still exist and have gotten slightly larger (by millimeters).  One new met in femur.  Most mets are in sternum, spine, and pelvic areas.  two large tumors on each adrenal gland.  

3 hospital stays in Nov and Dec - reaction to treatment (high fever & pain which both go away a week or so after the immunotherapy infusions), and last was admitted on Christmas Eve for 5 days.  Permanent damage to adrenal glands caused a variety of symptoms and he is now on steroids for that.  

Lost a lot of weight, still working half days but will be done soon as disability was approved for now.  He looks gaunt, has no energy or appetite, no motivation to plan or do things, PSA 88 as of 1/2/20.  We don't do a lot.  We both pray a lot and try to stay positive that he has more time.  I can barely keep up with so many people checking in so I created a caringbridge site with updates.  I take care of everything and him and am exhausted.  

Drs don't feel there are a lot of options if this trial does not give him more time.  What about Cabizitaxel?  Or more Doceltaxel?  They said since Enza did not work Abi won't either.  Talked about Radium 223 at one point but they put that on the back burner.  I think about 2nd opinions but Mayo Clinic is considered here in the US (and to other countries as well) the best.  

I could use any encouraging words from you kind folks.  We are only 18 months in, I thought we would have so much time trying different treatments.  

Thank you, 

Saint Paul

Thank you all, I had forgotten about the Lutetium 177 I read about in some of your posts.  I jotted it down as well.  Dave I was encouraged to read you are hearing about immunotherapy at your clinic.  Mayo says it traditionally has not been effective for prostate cancer, but.....nonetheless these trials are valuable.  We hope it helps other men down the road.  I understand Docetaxel was once a trail only, I guess most treatments were.  I will put out an update middle of Feb when he has scans again.  

I greatly appreciate the responses.  We knew from the beginning what we were up against.  Fortunately he has no pain.  The only pain now is about a week after infusion in one pelvic area then it goes away after a few days.  

My thanks, 

Judy

God be with you x

Bless you and keep you safe through your grief.

Sorry to hear your sad news.

Thanks Chris

I am so very sorry to read this Judy. You are in my thoughts.

Shelagh xx

Judy

So sorry for your loss.You are in our thoughts and prayers

So sorry this has come so quickly for you both.

Sending our love.

Cheers

Bill

Please accept my condolences at this terrible time. Your hubbie was a much loved man that is clear from your postings. So so sorry for your loss.

Clare