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Posted 10/14/2019 6:02 PM (GMT -5)
Hi Everyone - I feel like I was punched in the gut last Monday. I accompanied my dad to a biopsy that he tried to hide from me but he needed a ride into Phila so he caved and spoke to me about all that was going on. My dad had a PSA of 40 which prompted tests...turns out her has Gleason of 9 diagnosed with Prostate cancer that has spread to his pelvic, pubic & rib & lymph nodes. He is the primary caretaker to my mom with MS. Needless to say I am devastated as he is my "armor" against the world. He just turned 70 and despite some high blood pressure & high blood sugar he is in relatively good health. I feel lost & terrified. We go Friday to start a treatment plan. I live two hours away & I feel powerless. Anyone else with any similar stories...or spouses that can tell me what to expect? Anything hopeful is appreciated.
A Loving Daughter...
Posted 10/14/2019 6:42 PM (GMT -5)
Hello Stefanie,

That's tough, and hard to deal with right off. First, greetings from greater Philly! I live up in Bucks county, so you know someone is close. G9 with mets is a rough diagnosis, and it's good that they are getting geared up to start a plan quickly. Most likely they will start him on Lupron, which will stop it immediately while more planning is made.

Where is he getting his treatment? There are world-class facilities here in the Philly area, so he will be in good hands. After the Lupron starts, he will probably be heading for radiation of one kind or another, and maybe some drug treatments as well.

The good news is that it's not a death sentence. Many men have had similar diagnoses and gone on to live out a normal life span and ultimately die of something else. Go with him to the consultations if you can, and take notes. Writing down the questions and answers can be very helpful.

Hang in there. The answers will come.
Posted 10/14/2019 6:54 PM (GMT -5)
Welcome to HW, sorry you need to be here.

That's a tough diagnosis. The good news part is that it is treatable. Treatment won't be fun and life will change but there is every reason to expect that he'll respond. As Halbert mentioned, it's common for men like your father to live for a very long time on treatment (years and years).

It is serious and needs attention and he'll need your support, but it can be dealt with.

Ask all the questions you have, we're here most days.

Andrew
Posted 10/14/2019 7:02 PM (GMT -5)
Stefanie my thoughts and prayers are with you and your parents. Hal and Andrew have given you some great advice and information.

No one knows how he will do with treatment. It will start with drugs that will lower his testosterone and starve the cancer. He will experience side effects similar to those a woman
experiences in menopause. He will not have surgery so he will not face the accompanying physical recovery. Will he have chemotherapy?Somewhat likely, but not for sure.

From here, putting myself in his shoes, I would be asking what can I do to make sure I survive my sweetheart and do it keeping my physical and mental strength so I can continue her care. I think your mothers condition and his status as a caretaker are paramount in making treatment decisions. As I understand his diagnoses indicates he is not curable but may be manageable for many years. But no one can really know. And I suggest he get help so that he can provide the care that brings them the best life together. Hire the bad stuff to be done so he maintains his vitality and interest and love.

My advice follows Hal’s. Get to a wonderful medical oncologist that can demonstrate treatment success with men who have been in similar situations. This is no longer in the realm of a urologist or primary care Physician. In Philly and certainly New York you have access to some of the very best.

Our best wishes and please keep
Is posted and we will do what we can to be of assistance.

Best wishes

Jack.
Posted 10/14/2019 7:31 PM (GMT -5)
I was trying to see if I can reply to everyone individually but I am not sure how. My brain hasn't been working right lately.
Halbert, your post means so much. I grew up in Upper Dublin! My parents live near Brigantine now but will be moving up by my sister soon in West Chester. He is being treated at Univ of Penn -Pearlman Center. I have all my questions ready to roll. I will keep in touch but you are correct on the Lupron. I wish you so much love & good things. Let's keep in touch & you just gave me a night of rest since I haven't slept well since the news.

Jack, My prayers are with you as well. They have been married for over 48 years & I will do everything in my power to help them. I am his cheerleader & will do all I can do to keep him motivated. He has been a bit depressed since my mom has been so great the last years but they remain strong as they have 3 granddaughters with one on the way. I wasn't blessed with children as that is another saga but as my dad says "everyone has a cross to bear". Love to you. Keep in touch.

Andrew, Thank you so much for your kind words. We are going to fight this as tough as it is. I wish you happiness & good vibes.

Let's all keep in touch as I am going to need you guys. You are all so strong and I admire that. Let's hope I can juggle it all & keep it together.

All of you keep fighting & know you are in my prayers. I will be lighting candles for you individually.

Stef
Posted 10/14/2019 9:19 PM (GMT -5)
You can always reach us by posting here. The forum doesn't have a direct private message function - there is a way to look up email address for those who are willing to share - not all are.

Watch his depression level Lupron can make this worse and you may need to encourage him to see the doctor if that happens. Also, PC in general can make a man depressed.

Do keep us updated on his progress.
Andrew
Posted 10/15/2019 8:31 AM (GMT -5)
Your dad sounds strong. And good. There's a reason he did not want you to know.

Bring it here. As much as possible.

God Bless.

(it really should respond to the drugs, that's not just a pep talk)

The brain fog will lift....once things get settled a bit.
Posted 10/15/2019 12:43 PM (GMT -5)
Stefanie Rosa Donati,
I am G9 with mets also, I was diagnosed 6 years ago this month.
I am on Lupron, it is holding the beast at bay.
Just letting you know, Lupron is pretty darn good at what it does.
Blessings to you and your family!
Posted 10/15/2019 11:04 PM (GMT -5)
Stefanie Rosa Donati,
I love that middle name, Rosa, It is my Daughter's also. You have received great advice already, mine is more of the same. Don't despair, hang in there, and tell your Dad the same. Many of us with Advanced Prostate Cancer felt the same initially. My own diagnosis has gone from dismal to encouraging to even miraculous. Stage 4 with 80% involvement, with leg, pelvis, rib mets spots. My PSA was 71 , now 7 years on this journey, my PSA is undetectable. Your Dad is fortunate to have a Daughter like you to care so so much and to be there ,to be his anchor. Looks like you have found an excellent treatment center, and that is what is needed. That and resolve, hope and vigilance.

Do me a favor, scroll up to the upper Right hand corner "Custom search" box and type in "Letters for the newly diagnosed" you will find a long thread here that is encouraging and uplifting.

Do that and also look up our friend's story, he is Todd1963, truly remarkable! https://toddseals63.blogspot.com
Prayers are with you and your family, stay with us. Keep the Faith!

Wings aka Dan in So Cal
Posted 10/16/2019 11:32 AM (GMT -5)
Hello, Stephanie and welcome. I can almost hear the fear in your 'voice'. We've all been there. As the wife of a man afflicted with this nasty disease, I can relate. While you're here, look around and see how long some of these guys have been fighting this, and holding it at bay. Your dad's diagnosis is scary, for sure, but there are so many stories of men who started out like your dad and who are still here and kicking.

My husband is also a Gleason 9. So far, no bone mets, but after surgery, we found that there was bladder neck and lymph node involvement. It's been 5 years, and if you met him today, you'd never know there was anything wrong. He's still a handsome guy, still works, still does (almost) anything he wants. We'll be praying your dad can say the same five years from now.

Donna.
Posted 10/16/2019 3:54 PM (GMT -5)
We have a long-running thread that has a list of Gleason 9 and 10 members on the forum. I've added your post. The thread is here: The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
I didn't see whether your dad was diagnosed Gleason 9(4+5) or Gleason 9(5+4) so I guessed 4+5 since they are more numerous.
The thread makes somewhat reassuring reading for new Gleason 9 and 10 members here. Its a fairly long list with lots of guys who were diagnosed a long time ago and are still here on the forum making trouble for the moderators. Occasionally we hear that someone on the list has passed but it is surprisingly seldom prostate cancer that finally killed them.
Posted 10/16/2019 4:36 PM (GMT -5)
Stefanie,
I would just add that in addition to the Lupron, the Medical Oncologist will likely offer your dad the choice adding Zytiga, or Xtandi, or Erleada to the Lupron. These are oral medications that further reduce the availability of testosterone to the cancer cells - beyond what Lupron can do by itself. Chemotherapy might be another option. If the MO hasn't presented these options I would encourage you or your Dad to bring them up for discussion.

Good luck for your Dad's treatment!
Posted 10/17/2019 5:05 PM (GMT -5)
I want to thank all of you kind souls for your outpouring of love & support but most of all hopeful messages. Tomorrow we go to Univ of Penn for our treatment plan. I just wrapped up working with a nervous belly but ready to head down to see my parents. I will take all of your prayers & advice with me. I spoke to my dad this afternoon and he said he had a bad night...he said it was like being hit by an ocean wave. It just overpowers him sometimes. Hearing his voice in that tone and those words was like taking a bullet. I read him all of your messages and he said it bought him a good night's rest tonight. He will be joining this blog as he needs the support. God bless you all! I will update you on the treatment plan and soon you can meet my dad. He is a very cool dude smile P.S. He laughed at the G9-10 club reference so thank you. XXXXXXOOOOOOOOOOOO
Posted 10/17/2019 5:10 PM (GMT -5)
Also, anyone have any dietician recs or supplements? Exercise plan or suggestions
Posted 10/17/2019 6:19 PM (GMT -5)
Stefanie, best of luck at Penn tomorrow. There are some great docs there. To the diet/supplement question....best suggestion is to eat as healthy as he can--some of the drugs can mess with his sense of taste or cause nausea, so do what you can. Low carb, plenty of veggies, etc. Exercise as much as he can--even walking every day is good. The Lupron will sap his testoterone, so he will probably gain weight--exercise helps.

Keep us posted.
Posted 10/17/2019 6:41 PM (GMT -5)
Stefanie - Your dad is going through what Alex Trebek from Jeopardy after his pancreatic cancer diagnosis said:

"I've had kidney stones, I've had ruptured discs, so I'm used to dealing with pain – but what I'm not used to dealing with is the surges that come on suddenly of deep, deep sadness and it brings tears to my eyes."

The feeling comes on very suddenly and unexpected at first after initial diagnosis which is quite startling, at least it was for me also. It does get better after a while as he gets used to his "new" situation.

Good luck tomorrow.
Posted 10/22/2019 8:36 AM (GMT -5)
Hi Everyone,

So we went to Penn with my heart in my throat. The doctor was nice & seemed very educated. They tested his vitals when through his current meds. I had pushed the week before prior to this visit to have him immediately start Casodex which he will be on for 30 days. I also asked the Lupron shot be ready for him last Friday when we were there. The Lupron was administered that day which he will be on forever. They will also after the 30 days of Casodex be giving him Cytiga coupled with steriods. I looked up the Cytiga which isn't covered by Medicare and even with a discount on the Good RX it was $1,800!!! I immediately sent in a message on the portal about that. They replied they work directly wit the pharmacy on it so let's pray that number is drastically reduced because frankly, who in the hell can afford that!!!! Also, the doctor said something that completely destroyed my insides...since my father asked about survival rates...he said MEDIAN is 5 years!!! Please for the love of everything holy that isn't the case!!! They will not remove his prostate since at this point its systemic & isn't the best option so in about 6 months will do Radiation. Anyone else on this same treatment plan? I left confused but know there is a plan. I hope its not too far gone. As long as his chest is clear which they think it should be then no Chemo so he is getting that scan & bone density test this week. Help me out guys why did he give me that stupid 5 year thing ...then he drew out a line after & said then we try other things down the line to try. UGH!!!!!!!!!! I had a call with the dietician but my dad eats ok now so just some minor tweeks to keep his protein up for his muscles. I need hope ….I keep reading all of your messages to me over & over for comfort. G9 Mets guys...give me strength!
Posted 10/22/2019 9:35 AM (GMT -5)
about five years is indeed the median - but that is only the average for all men. Some men on this board have gone Significantly longer with undetectable PSAs with Lupron/Zytiga.

I am also on that five year timeline in my treatment path. I view it as five years I otherwise would not have had. Also, during that five years I'll be looking for new developments in PCa management.

I encourage you to be hopeful.
Posted 10/22/2019 10:13 AM (GMT -5)
Thank you Mattam. God bless you & keep fighting the good fight! I know you will go way beyond that & I will keep you in my prayers. I know there are many many many years ahead for both you and my dad. Let's keep looking for advancements as they are happening every day.

Love to you.

Stef
Posted 10/22/2019 12:06 PM (GMT -5)

Stefanie Rosa Donati said...
Let's keep looking for advancements as they are happening every day.

Hi Stefanie:

I certainly understand your angst and that you want to keep your dad around for a very long time. The good news is two fold. We have a LOT of members with diagnoses like your dad's and many of them have been around for years with more years to come. Secondly is the quote from your post, i.e. looking toward advancements. The speed of advances in PCa treatment is really fast. Many (most?) of the treatments for today's G9/10 patients were not even around a few years ago. You have every reason to believe that there will be continued new options for your dad as he progresses along this journey.

My very best wishes to you and your family.

Jim
Posted 10/22/2019 2:19 PM (GMT -5)
Stefanie,

As the others have said, the 5 years is median--with several hundred thousand diagnoses a year in the US, there are many, many men who are doing great at 5, 10 years after diagnosis. And, there are new things coming all the time.

The key, now, is to have hope. Lots of it. And, at the same time, to quote that great philosopher "Red" in The Shawshank Redemption--get busy living! Seriously. The next few months will be rough, no doubt. The meds-especially the Lupron--will cause changes. Mood swings, weight gain, hot flashes, etc. They are manageable. Start doing the things he has always wanted to do but didn't have time for.

Hang in there. There is a lot of life to be lived.
Posted 10/22/2019 8:29 PM (GMT -5)
The reason Zytiga might not be covered by Medicare is because it is now generic: abiraterone acetate. I just plugged that into 2020 Plan D formulas and see that the monthly retail cost at one of my local pharmacies is "only" $215 per month. There are some places that offer assistance for Medicare patients. You have to be a great detective and your MO office should be able to help. Re: the statistics,answer me this: before your Dad was diagnosed, how long did he have to live? I'll answer for you-you don't know! And now after diagnosis? You don't know! The point is, as stated above-get busy living! And get Dad ready for all the side effects of the drugs coming. Check out 2 long running threads, the G9-10 one & the Zytiga one. Lots of good info. Best of luck.
Posted 10/23/2019 7:28 AM (GMT -5)
I just wanted to say your dad is lucky to have such a loving, caring daughter. My heart aches for you and your family. It’s all so scary.
On a practical note, have you and your family (siblings) discussed a plan to be able to help care for your mother in the event your Dad is unable to some days? I’m sure that’s probably a concern for your Dad. Worrying about her.
I hate cancer. 😡
Posted 10/29/2019 12:33 PM (GMT -5)
Thank you all so much. I have some good news...his CT Scan of his chest is CLEAR so no Chemo just the Lupron, Cytiga & Radiation in 6 months (depends on how he reacts to hormonal therapy)...I hope they are doing the right thing...what type of Radiation did anyone get here & especially for G9 Mets...Thank you all as I have become more hopeful because of all of you!
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