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Six and half years; 2 with liver mets

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Posted 4/20/2017 5:19 AM (GMT 0)
This month Gary has survived six plus years with PCa and many mets. He has had almost every treatment approved for PCa and even an immunotherapy pilot study. Over two years ago his liver also became involved. Today his PSA was 827, not doubled from last test, but significant increase. He also had his 16 round of mitaxantrone, although I think it is clear that it has failed. But what 's next? He feels good. His blood work, aside from PSA and some anemia, is pretty normal.
I'll let you know in three weeks what trick his Dr pulls out of his sleeve.
Beth
Posted 4/20/2017 6:10 AM (GMT 0)
quite the good fight! I'm wishing you the very best.

ed
Posted 4/20/2017 6:48 AM (GMT 0)
I've been hoping the new Lu-177 PSMA study would get started at UCLA. Hopefully, soon.
Posted 4/20/2017 9:21 AM (GMT 0)
As TA has foreshadowed, the Lu-177 PSMA study would be a great program to get on to.

Been some quite amazing results at the Peter Mac Cancer centre in Melbourne with a trial of only 30 patients but all with extensive mets.

I think around 50% showed massive reduction in mets, but too early to forecast long term outcomes.

Here's hoping...

Chas
Posted 4/20/2017 1:37 PM (GMT 0)
here's hoping the doc comes up with a good one.
Andrew
Posted 4/20/2017 2:00 PM (GMT 0)
Beth, so Gary feels good, eh? Wonderful! May that continue for many years as even better treatments are found!
Bill in MS
Posted 4/20/2017 3:14 PM (GMT 0)
Glad to hear Gary is feeling good. Here's hoping that they come up with all sorts of trials to help him out. Thinking of you both! Sue and John
Posted 4/20/2017 3:30 PM (GMT 0)
Thanks for the update. I'm especially happy to read that Gary is feeling well.
Posted 4/20/2017 3:49 PM (GMT 0)
Very inspiring Beth. Glad Gary is feeling well. Keep fighting.

John
Posted 4/20/2017 4:05 PM (GMT 0)
He's a lucky guy to have you. Peace
Posted 4/21/2017 3:32 AM (GMT 0)
Re the Lu-177 PSMA clinical trial...last week Glen's MO at UCLA said he thought it should start in 8 months. Maybe a call to them could give you a better idea of when it is supposed to start. Of course if you are up to it and money is no object (really, when is it ever!) it is available in Australia and Germany...
Did you rule out genetic mutation? I know Northwestern/UCSF are starting a trial for parp 1 inhibitors in cases of BRAC1 2 ATM and Chek2 gene repair mutations. We got the color.com $250 spit test. My husband is has the Chek2 mutation and so does my daughter, so we are going to have keep an eye out for breast, ovarian on her. If 1st degree relative is positive they only charge $50 to test them, which is really a good price.
Posted 4/21/2017 5:07 AM (GMT 0)
Hey, thanks for all the good advice on the LU177 trials and genetic mutation testing. I'm going to look into both of those. It has been over two years since Gary has had any scans done, so I am unsure as to the extent of his mets at this point. He is getting an echocardiogram on Monday.
Beth
Posted 4/22/2017 6:33 PM (GMT 0)

Dear Beth and Gary ~ the "Celebrate Life" Team ~

I am always thankful for your updates ~ you are both kept close in my thoughts.

Your story has provided hope and inspiration to so many ... you've "weathered through" many storms, and you've shared your experiences along the way ...

It's helpful ... and HOPEFUL to know that many of the newer breakthrough treatments have helped you, along the way ... you have blazed a trail for others to follow ... showing all of us that those treatments can and DO make a difference ... that's a powerful testimonial ... powerful, because you have experienced it first-hand.

You've experienced the storms and the sunshine ... the darkness and dawn ... the sunsets and sunrises of everyday LIFE ... that inspires everyone here ... that inspires me ...

Keep forging ahead, with determination and courage ... and know that you've been remembered in my prayers.

Thinking of you both, from across the miles,
"Cyclone Team Fan" ~ Iowa State University
Posted 4/22/2017 7:00 PM (GMT 0)
I've always admired both of your spirits as you've worked you way through this! Keep that up!
Posted 4/23/2017 5:08 AM (GMT 0)
Thank you Michael and Cyclone and all our HW brothers and sisters for your continued well wishes and prayers. The last few days Gary has had mild chemo crash. He's mostly just felt hung over and sleepy. We hope to go look at wildflowers along the coast tomorrow. I hope you all have a beautiful spring Sunday!
Posted 4/25/2017 2:43 AM (GMT 0)
Hi Beth and Gary
I would've replied to your post earlier but we've had friends visiting from across the ditch (NZ!) and I haven't looked at the boards for a few days.
Gary is such a fighter and has the world's best ally on his side - no-one could ask for more. You are both inspirational and provide so much encouragement and support for others on this site, I can only send our cyber-hugs and support and hope things develop at a fast enough pace to keep Gary feeling well for years to come.
We are both thinking of you now and always.
Jaybee&GG
Posted 5/6/2017 8:31 AM (GMT 0)
Hi Beth and Gary, you are both an inspiration! Glad to hear that Gary is feeling well and i'm sure the coming years will bring even more new drugs to help control this awful disease! take care and all the best.
Posted 5/6/2017 6:34 PM (GMT 0)
Hello Angsty and Jaybee,
Thank you for your replies and continued thoughts our way. Gary will return to see the Dr on Wed following blood draw Tues. He seems to be worsening fairly quickly though, I'm sad to say. We have a new granddaughter due in 4 weeks and his niece graduates high school this year. I'm feeling unsure that he will be able to appreciate either, although he wants very much to be present physically and mentally for both. He has begun to sleep almost all day and night, minimal food intake, very short of breath and a constant twitch/jerking in his eye and leg.
It's heartbreaking to watch, but he has rallied before, so we will see what the Dr has to say next week. I'm pretty sure I thought it was time for hospice a year or so ago and I was wrong, thankfully.
Please keep those thoughts and prayers going for him to be around for that grandbaby.
Beth
Posted 5/6/2017 6:52 PM (GMT 0)

Dear Beth and Gary, the "Celebrate Life" Team ~

I am thinking of you both --- stay strong --- stay connected to friends and family --- and know that I am thinking about both of you right now.

I've been remembering you both in my prayers, over the course of time,

"Cyclone" ~ Iowa State University
Posted 5/6/2017 6:53 PM (GMT 0)
My prayers are definitely with you and Gary. A granddaughter is a wonderful thing to live for.
Posted 5/7/2017 12:47 PM (GMT 0)
Dear Beth & Gary,

Let's hope that Gary is conserving his strength for the arrival of your new baby granddaughter. I'm sure we are all thinking of you both and send positive thoughts and prayers your way. Hugs from me to you, Suzanne
Posted 5/7/2017 4:36 PM (GMT 0)
Dear Gary and Beth,
You are both inspirations to me. I don't post often but find your thoughts so worthwhile as my husband and I struggle with DH's prostate cancer and metastasis.

You are in my daily thoughts as I hope for the best with Gary and for the birth of a dear granddaughter. And also prayers for you, Beth, during this difficult time.

Annie
Posted 5/8/2017 4:08 AM (GMT 0)
Beth and Gary
You both are in my thoughts most of the time. I know you once said you were seeing Dr. Curti. Is that still the case. If so, you must be very close to us. We should meet. Many hugs to yo both. Todd
Posted 5/11/2017 3:33 AM (GMT 0)
cry The news we received today was not unexpected, but hard to take. Gary's psa has risen above 900 and the mitaxantrone will be discontinued. MO said there were no other treatment options. Gary's blood panel showed very low red blood cell count, and so he was given two units of whole blood. I mentioned the Lu 177 trials and was summarily dismissed. He said Gary wouldn't likely qualify and it would be a waste of time.
A quick search revealed that Gary does meet qualifications and recruitment is underway. I may be grasping at straws, but the choice will be Gary's as to whether or not he is ready to quit treatment. I think his Dr owed him that much as well.
Beth
Posted 5/11/2017 4:25 AM (GMT 0)
Oh Beth, I'm so sorry to hear about this setback. I'm sure Gary is feeling low from the bad news but also from his low blood counts. Perhaps the transfusion will help.

They have already started the trial in Houston if you want to go there for treatments. The cost for each treatment will be around $12,000 - pre-paid. There are 4 treatments in this protocol scheduled every 8 weeks. You can contact:
Susan Cork, Therapy Coordinator
713-781-6200
[email protected]

The other major trial is at MSKCC in NYC. It may turn out to be a better radiopharmaceutical. Contact details and blood-work requirements are here:
/clinicaltrials.gov/ct2/show/NCT03030885
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