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.
Godspeed
Tony
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TonyS58
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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.
in reply to
Hospice will supply anything and everything to help alleviate pain.
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!
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
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.
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.
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.
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.
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.
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.
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 ❤️
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.
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.
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.
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.
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.
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.
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!
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.
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.
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 💚💚💚 🙏😇🙏🥲
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.
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.
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.
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! 🦊
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...
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.
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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