Time for Hospice: It's been 6 months... - Advanced Prostate...

Advanced Prostate Cancer

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Time for Hospice

TonyS58 profile image
84 Replies

It's been 6 months since the CAR-T clinical trial at Mass General. At my most recent appointment there, I was told that the FDA shut down P-PSMA-101, and that I was the last patient enrolled. During trial, psa increased from 0.9 to 2.1

In December, I started having double-vision. It started side-by-side, then progressed to over-under, and now the vision from one eye is rotated about 30° with respect to the other.

As of 1/3/23, pain in the legs, hips, pelvis, rt shoulder, lower and upper spine have all increased. M.O. prescribed Zytiga plus Prednisone as last resort. Increased pain medications to help manage breakthrough pain.

On 2/28, double-vision and breakthrough pain have increased further. PSA now 6.2.

M.O. recommends hospice care. He believes the symptoms all point to leptomeningeal disease where the tumors seed the cerebrospinal fluid with cancer cells and spreads very quickly with no known cure.

I want to thank this group for their support. I'm so happy to have had you along for the journey.



84 Replies
Rob1053 profile image

I am so sorry!

Miomarito profile image

I am sorry you are in pain. My husband is too. What do they give you for pain?

TonyS58 profile image
TonyS58 in reply to Miomarito

Long-acting morphine (MS Contin) 15mg/15mg/30mg; Gabapentin 600mg/600mg/900mg; Celebrex 200mg/200mg; Cymbalta 60mg; and 1 or 2 Dylaudid 2mg every 4 hrs as needed for breakthrough pain.

Mom-mia profile image
Mom-mia in reply to Miomarito

Hospice will supply anything and everything to help alleviate pain.

Miomarito profile image

thank you for answering me Tony. I know you are in pain, are you up to answering if this is what they give you on hospice? I’m sorry Tony!

Gl448 profile image

I’m saddened to read this. I Just read your profile.

What a painful roller coaster you’ve been on for what I think has been the last 7 years.

Best wishes brother.

TonyS58 profile image

No. I'm on hospice because my symptoms all point to leptomeningeal disease where the tumors in the vertebrae seed the cerebrospinal fluid with cancer cells and the cancer then spreads very quickly with no treatment possible

Miomarito profile image
Miomarito in reply to TonyS58

Thank you Tony! Leptomeningeal disease, I will read up on this. Does blood work or scans tell you you have this disease. Does your back hurt you?

Zengal79 profile image

Just looked at your profile. You sir have been though a lot. I always have watchful eye out for those mentioning CAR-T. We made to aphresis appointment and were disqualified due to counts.

My heart goes out to you. Glad you are getting hospice on board. The support services they offer are profound. Your support persons will be much supported as well by this choice.

You may surprise yourself and get more longevity than you think. I’ve seen people even have some QOL improvements for many months, even years when stopping all the treatment. Take this time. Be in the moment best you can.

My best wishes to you. You are a warrior. The things you have done will make things better for the next generation of fellows with this disease.

NickJoy profile image

Tony, I am so very sorry to hear this news. I hope all can be managed as well as possible for you. Thank you for all of the information you have provided about your treatment - this helps us all.

Kaliber profile image

Tony , are you doing in home hospice with your loved ones …


TonyS58 profile image
TonyS58 in reply to Kaliber

I'll be doing in-home hospice. The bulk of the hospice care will be on one of the local hospice organizations. My wife is a retired oncology nurse, so I expect she will make sure the care is complete.

Kaliber profile image
Kaliber in reply to TonyS58

I hope you can stay comfortable brother, sounds like you are surrounded with great , capable, people to care for you. I’m so sorry this has to happen , ….. the only up side is you’ll be in familiar home settings. Best wishes brother.


Benkaymel profile image

So sorry Tony. May you stay as comfortable as possible. Thanks for your very detailed Bio, it really helps others.

Tall_Allen profile image

Ugh! So sorry to hear this.

TonyS58 profile image
TonyS58 in reply to Tall_Allen

TA, thank you so much for your advice and recommendations over the years. I'm sure I would not have made it this far without having you as a resource. My M.O. had real difficulty giving me my prognosis last week... he referred to me as a trusted partner who was always educated and well prepared prior to our discussions and whose analyses were always "spot on". I couldn't have done that without the materials you've collected and given us access to, and the advice you disseminate only after thoroughly digesting the material. Thank you from the bottom of my heart.

Tall_Allen profile image
Tall_Allen in reply to TonyS58

My purpose is to be of service, so I'm glad of any help I may have provided. I am in awe of you, and people like you who, understanding the risks, still participate in trials that help others. We learn so much from those trials, even when the therapy is not successful.

TylexGP profile image

Tony, Thank you for sharing. You have persevered through a lot. Hoping that your pain can be well managed.❤️

Rsdutcher7 profile image

I’m sorry you are going through this. My husband found methadone to work well with his pain. Hospice care is absolute Angels who walk this earth and we were happy we signed up sooner than later. They only visited once a week for first few months and built a strong connection to my husband before he got really weak. They were always one step ahead with pain meds, bed, oxygen, etc.

Our journey was certainly easier with the right team in place. I hope you will find as my peace as my husband did as he gently deteriorated until he quietly took his last breath just a few weeks ago ❤️

ann1919 profile image

So very sorry to hear. Best wishes for comfort and peace 🙏🙏

WilliamZ profile image

You fought the good fight. Now be comfortable, pain free and fear free. Make sure you are treated w Respect and Dignity. G-d Speed

arcflashed profile image

I just read your profile and wow you've been through a lot. You are a true fighter and respect is the word. God bless you

boseley profile image

I’m sorry to hear this. Have you tried dexamethazone (spelling?)? It was what my husband took after prednisone. It is stronger steroid and definitely helped for awhile.

TonyS58 profile image
TonyS58 in reply to boseley

I had decadron (dexamethasone) after I fractured L2 and I kept telling my M.O. that I wanted my decadron back. Now, they'll give me my decadron back.

treedown profile image

Sorry to hear where your at Tony. Thanks for the extensive profile info, very informative. Hope your comfortable and surrounded by love in whatever life has in store for you still.

Mecrispy77 profile image

Sorry brother. F-ck Cancer! May you find peace sir.

Dsmejkal88 profile image

My heart goes out to you and your loved ones. I pray that your remaining time on this earth is in comfort and surrounded by love. Damn this disease.

rosenjpj profile image

god speed Tony and may your days be meaningful and peaceful.

Realistic profile image

God Bless Tony love SheilaFxxx

Bronzee profile image

i am so sorry Tony. Every time I read a warrior losing his fight, it is like I am hit in the gut with a boulder! So many men fighting this disease trying our best to win!

What time you have , try to do all you would like to do with your supportive wife. What a great ally you have , an onco nurse! You are giving it your all! Fight with all your might. Prayers for your healing.

jackcop profile image

Ah 😟! I am so sorry to hear that. Make sure they give you lots of pain medicine.

alohapickle profile image

Blessings to you and all of those close to you. Love and Peace to you. You will live in the hearts and memories of all whose lives you have touched. Thank you for your openness, you are generous to share, especially during this very difficult time.

oldjoe986 profile image

May God bless you. You are strong.🙏

Wongle1 profile image

sending you all my love and hugs from England be strong Tony xxx

Tiger22Warrior profile image

So very sorry!! God Bless!! 🙏🏻🙏🏻

Ollie1948 profile image

Stay strong 💪

Drandma profile image

God bless you!

Faith1111 profile image

My heart breaks for you Tony. This is such a devastating disease. You did all you could. You educated yourself, you participated in trials, and you fought the good fight. I pray you find some emotional and physical comfort going forward. Peace be with you.

Rolphs profile image

I will say a prayer for you. Like others have said, thanks being open and for sharing the information on your battle. You have helped many in the community.

Karirudy profile image

Tony. I hope you have family and faith to surround you with love. Bless you.

Shamrock46 profile image

Prayers for you and your family. We think we'll be facing something similar sometime this year as well. At appt. w/cardiologist the other day he was actually willing to discuss my husband's defibrillator. We found that when he wants it turned off he actually has to come into the office, which we didn't know and will have to plan for. I would guess that your mind has done at least a 180o as well as you bravely reconcile the here and now with what's to come. Your post reflects a person who is courageous, thoughtful and caring so I wish you a calm and peaceful journey. May a host of angels guide you!

Karirudy profile image

Dear Tony thanks for your ṭrial participation. It helps more than we know. I hope you have loving arms around you. A wife

Mikeski profile image

Godspeed indeed Tony. Praying they can keep the pain at bay and you’re comfortable.

joeydashoe profile image

God bless Tony🙏🙏

elliefight4dad profile image

Sending you lots of love, Tony. Whole hearted wishes for the MO to be 100% incorrect, and you're symptom free. Be well 💕

GMAN52 profile image

May God grant you comfort and peace. So sorry to hear that we are losing another to this awful disease. Godspeed

Peealot profile image

Very sorry to hear of your developments Tony. Stay strong and best wishes.

ocman profile image

God bless you Brother!

BanjoPicker profile image

May you have peace and joy as you continue your journey.

Okay4now profile image

I am so sorry to hear the news! I wish for you courage and peace.

God bless you today and always.

stillheretoday profile image

I'm sorry to hear this, All the best,

lcfcpolo profile image

Best wishes and prayers from the UK Tony.


FjSENC profile image

I am sorry. Prayers that you can be as pain free as possible.

inHishand profile image

praying for peace for you and your family In this decision. I went thru this with my husband, so I know this part of the journey. The God of all Comfort is with you.

Currumpaw profile image

I am so sorry to read your post and bio. Be at peace that you have done all that was possible. The strength and courage you had in treating this cancer will not abandon you now. The words in your post only slightly camouflage the courage within you. It is really disconcerting to many on this site that you didn't get a better run at the cancer. You have my admiration for how you have accepted this.

Eventually we all meet on the other side.

Don't be hesitant to message anyone.


SpencerBoy11 profile image

Sorry for you and your family. It always seems so unfair when we are battling one issue only to be attacked on another front.

BassMan7 profile image

Dearest Tony my heart hurts for you and ur family. Plz know you are brave special luvd and fought and continue to fight. Whatever your belief plz know God has you and will take care of you. My husband passed 9/14/22 , the hardest thing ever but I was Blessed to have held him till his last breath. He now comes to me in different ways to let me know He is safe and assure me it will all be ok. Plz hold your family close and know we will all meet again on the other side! GOD BLESS YOU Sir 💚💚💚 🙏😇🙏🥲

Runner4000 profile image

Thank you for letting us know of your situation and decision. Your trial participation is something that hopefully gives you satisfaction. Trials are the vehicle that have given us all more family time and quality of life opportunities. Thank you for your contribution. Hopefully your pain will be manageable. As you can read, you are in many of your colleagues thoughts and prayers. Best wishes.

CountryJoe profile image

The Creator of the universe is with you always, Tony.

j-o-h-n profile image

Dear Anthony, My prayers are with you...

j-o-h-n Thursday 03/09/2023 11:49 AM EST

margretrburns profile image

Sorry to hear. My heart hurts for all. My husband is having similar vision problems and some hearing loss. I'm worried that he may have leptomeningeal disease also. Is there anything to help with vision? I have been trying to find more information. Our thoughts are with you. Grateful that you share with us.

garyjp9 profile image

As OldJoe said, God bless you, Tony. You have fought the good fight for a long time.

Amadeus71 profile image

"May God hold you in the palm of his hand" through the remainder of your earthly journey and beyond

nuc1111 profile image


God bless you and your family

brianboy2 profile image


swwags profile image

I'm sorry

Urogallo profile image

I'm sorry the CAR-T therapy did not work. Thank you for your contribution. Best wishes.

Rocketman1960 profile image

Gods Speed Tony. His Will be done in all things.

bglendi53 profile image

So sorry Tony. It takes a true warrior to go through everything you've been through. Keep your family close and may peace be with you.

Purple-Bike profile image

Thank you for sharing your powerful story. I can only wish you the very best.

Jp2sea profile image

Very sorry. I wish peace and joy in a difficult time.

Yadifan profile image

God bless you Tony and your lovely wife. I'm so sorry the trial wasn't successful for you but honor your participation in it and thank you for it. Wishing you peaceful and pain free days surrounded by your loved ones.

Yearofthecow profile image

So sorry what you are going through. My thoughts and prayers are with you

cancerfox profile image

You have my sincerest thanks, Tony, for your contribution to defeating this disease by your trial participation. You’ve shaped our community in ways that will live on beyond you. Bless you! 🦊

dmt1121 profile image

Sounds like very hard news on all fronts. I read your profile and it sounds like you have done it all and I hope that most of it was with little or no pain. It is always sad to read about someone heading into hospice but if the pain can be managed, you can still have some good times with your family and friends for whatever time there may be.

I have always believed that as I am facing the end of my time here, I will be out of pain and at peace when I go. Family and friends will grieve but after a time, I wish for my wife, family and friends to fill their lives with joy in whatever form is right for them.

What they will have are a lifetime of memories, especially those before they have to say goodbye. I believe expressing our love, thanks and support for those closest to us is a great gift.

I wish you a calm and pain-free journey with many laughs before you go. Keep us posted if you can. We are always here for you and/or family members who may want to talk...

Linebacker75 profile image

I’m so sorry to be reading this news, Tony. You put up the good fight and held the line and you participated in trials for the brotherhood and I say,

Thank you.!!

I’ll be praying for your peace, understanding and no pain. God Bless my brother.

Chris52981 profile image

God bless you prayers for you

Qiviut profile image

There is a veil beyond which we cannot see. Kind thoughts to you and yours.

Jamtu27 profile image

I'm sorry to learn of your situation and wish you comfort and peace.

SimplyT profile image

I am sorry to hear of your situation. May Gods love, peace and grace be with you.

Bvilkid profile image

You are a super warrior. God surround you with His mercy and the angels of heaven.

Lionsbuddy profile image

What strength you show by sharing the news we are all so sorry to hear. May you have the final earthly journey we all hope for - painless, blameless and peaceful.

Howard53545 profile image

good luck

OldGuysRule profile image

Tony, I don’t know you but, we have this disease in common. I tried sending you a link but I don’t know how so, I’m sending screen shots of something I hope you will read. May God bless you!


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