Rob105313 days ago

I am so sorry!

Miomarito13 days ago

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

TonyS58 in reply to Miomarito12 days ago

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.

Reply (8)Report

Mom-mia in reply to Miomarito7 days ago

Hospice will supply anything and everything to help alleviate pain.

Reply (1)Report

Miomarito12 days ago

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!

Gl44812 days ago

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.

TonyS5812 days ago

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 in reply to TonyS5812 days ago

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?

Reply (1)Report

Zengal7912 days ago

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.

NickJoy12 days ago

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.

Kaliber12 days ago

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

❤️❤️❤️

TonyS58 in reply to Kaliber12 days ago

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.

Reply (25)Report

Kaliber in reply to TonyS5812 days ago

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.

❤️❤️❤️

Reply (13)Report

Benkaymel12 days ago

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

Tall_Allen12 days ago

Ugh! So sorry to hear this.

TonyS58 in reply to Tall_Allen12 days ago

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.

Reply (50)Report

Tall_Allen in reply to TonyS5812 days ago

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.

Reply (51)Report

TylexGP12 days ago

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

Rsdutcher712 days ago

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 ❤️

ann191912 days ago

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

WilliamZ12 days ago

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

arcflashed12 days ago

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

boseley12 days ago

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 in reply to boseley12 days ago

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.

Reply (2)Report

treedown12 days ago

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.

Mecrispy7712 days ago

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

Dsmejkal8812 days ago

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.

rosenjpj12 days ago

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

Realistic12 days ago

God Bless Tony love SheilaFxxx

Bronzee12 days ago

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.

jackcop12 days ago

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

alohapickle12 days ago

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.

oldjoe98612 days ago

May God bless you. You are strong.🙏

Wongle112 days ago

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

Tiger22Warrior12 days ago

So very sorry!! God Bless!! 🙏🏻🙏🏻

Ollie194812 days ago

Stay strong 💪

Drandma12 days ago

God bless you!

Faith111112 days ago

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.

Rolphs12 days ago

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.

Karirudy12 days ago

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

Shamrock4612 days ago

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!

Karirudy12 days ago

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

Mikeski12 days ago

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

joeydashoe12 days ago

God bless Tony🙏🙏

elliefight4dad12 days ago

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

GMAN5212 days ago

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

Peealot12 days ago

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

ocman11 days ago

God bless you Brother!

BanjoPicker11 days ago

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

Okay4now11 days ago

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

God bless you today and always.

stillheretoday11 days ago

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

lcfcpolo11 days ago

Best wishes and prayers from the UK Tony.

Graham

FjSENC11 days ago

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

inHishand11 days ago

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.

Currumpaw11 days ago

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.

Currumpaw

SpencerBoy1111 days ago

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

BassMan711 days ago

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 💚💚💚 🙏😇🙏🥲

Runner400011 days ago

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.

CountryJoe11 days ago

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

j-o-h-n11 days ago

Dear Anthony, My prayers are with you...

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

margretrburns11 days ago

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.

garyjp911 days ago

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

Amadeus7111 days ago

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

nuc111111 days ago

Tony

God bless you and your family

brianboy211 days ago

❤️

swwags11 days ago

I'm sorry

Urogallo11 days ago

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

Rocketman196011 days ago

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

bglendi5311 days ago

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-Bike11 days ago

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

Jp2sea11 days ago

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

Yadifan11 days ago

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.

Yearofthecow11 days ago

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

cancerfox11 days ago

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! 🦊

dmt112111 days ago

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...

Linebacker7511 days ago

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.

Chris5298111 days ago

God bless you prayers for you

Qiviut11 days ago

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

Jamtu2711 days ago

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

SimplyT11 days ago

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

Bvilkid10 days ago

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

Lionsbuddy10 days ago

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.

Howard535459 days ago

good luck

OldGuysRule8 days ago

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!

3