More bad news: I've been in Newton... - Advanced Prostate...

Advanced Prostate Cancer

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More bad news

tom67inMA profile image

I've been in Newton Wellesley hospital since yesterday, and today an MRI confirmed the cancer is in my brain and spinal cord. There are options, but they will transfer me to Mass General where there are more specialists available if needed. This absolutely sucks, but explains the pain, balance issues, and facial drooping that have developed over the last several weeks. I'll continue posting updates as long as I can. Hoping to at least get some symptom relief.

62 Replies

My husband, Steve (Stevana on this site) and I are praying for you. I read your posts here and your blog and have kept up with your prostate cancer journey. I especially enjoyed your tales of your cabin in Maine. I’m sorry you got this bad news. I hope they can keep you out of pain. My heart goes out to your wife too and I will keep her in my prayers as well. You have many people in your corner. Thank you for taking the time to let us know what is happening with you. You have no idea how many people’s lives you have touched. God bless you Tom.Alana

Tom, my wife (avanat) and I have been following your journey for some time now. Very sorry to here of your latest developments. There are many people on this site who are rooting for you. If this is the final leg of your journey please know you are loved by your fellow brothers. We all wish you a safe journey, in the here and now or in the great beyond, we’re with you all the way. May God bless you. Steve

Tom? What a gut punch brother for you ,and for all of us that follow and care for you sir . I Pray that you get home asap .. 🙏

Dear Tom. I’m so sorry to read this and you continue to be an inspiration to me. You and I were both diagnosed similarly and at the same age…and I’m a runner. Hang in there and I pray you find relief. Warmest Regards. DougNOLA.

I hope they can keep you comfortable.

Sad news indeed, I'm so sorry, I'll be sending all the positive vibes I can out to you and hope that you can find some relief!

I am VERY sorry, Tom for the bad news. You are in my prayers always. This disease still confuses me, how can you have new Mets showing on imaging scans with a very very low psa? Unbeleivable

Farmhand profile image
Farmhand in reply to Ahk1

Morphed to Neuroendocrine?

Tom very saddened to read this. I hope they can get you comfortable at a minimum.

Peace and God Bless you.

Sorry to hear this-- thanks for informing us, and best wishes from a fellow runner.

😪Tom we are so sad to read of this latest turn of events. May your pain be relieved swiftly. We are thinking of you. G&J

Oh noo!!! My sincerest hope for relief from the pain and a long rest of your time with family/friends. Love ya Bro

Randy

Tom I’m so sorry to hear this!!! I pray you can get some relief. Sending prayers to you and your family!!!

Thanks for the update. We are all following your journey closely and wishing you relief from the disease.

Tom, very sorry to hear of this new development. You've already been through so much and now this. I hope you find another treatment that will stop and reverse your symptoms so you can get back to your BHAGs! My heart goes out to you brother, wishing for a favorable reversal of course soon! Thank you for sharing your journey and your frequent blogs, love to you😿

I am glad you made your way to the hospital. Hopefully relief quickly follows.

So sorry to hear this Tom.

I hope a good treatment can be found for you and in the meantime, your comfort should be the top priority.

Hard to swallow and you have the good grace to keep us informed thru it.Some solace in knowing the cause maybe. Hoping for the best outcome.

I admire you for continuing your highly literate posts to us even while all this stuff is going on. Selflessness personified.

First things first Tom. At least now you are in a hospital setting.

They need to get your pain under control. I watched an older youtube video by Dr Kwon at Mayo in Rochester, MN. Patient had spread to brain and spinal chord. Surgically removed tumor in brain, and SABR’d Spine in 2 locations with patient returning to undetectable on the C11Pet Scan soon thereafter.

Keep fighting Tom. Once the pain is managed you have a shot.

All my best Bother,

Mike

GP24 profile image
GP24 in reply to Spyder54

You can use SABR/SBRT to radiate the metastases in the brain too.

Oh Tom - hoping for good news for you! We are thinking about you.

Like others above I am glad you got some help. The idea of you laying around screaming in pain was frightening. I guess it's good and bad news in a way. My thoughts are with you.

This really does suck! I read your posts and this disease has been merciless to you. It is terribly unfair, especially for a man of your age. I have come to believe a few things in my life before and during the five years I have had PCa. One is that we are living a life here on this earth but our spirit, soul , life force or whatever you want to call it, lives on and so do we in another form.

The second is that everyday along the way is important and if the treatment makes me feel better and/or gives me enough added time, in a meaningful way, it's worth doing and if not, then I want to take a deep breath, relax and stop the fight. Finally, the most important thing for me is that I believe we are all on a path and it can be awful and it can be great at times.

If we are able to embrace our path, even if it will cause us pain or even kill us, we take over our destiny by letting go of trying to control the uncontrollable and to understand the unknowable. We let go of living for the future and we live for now and in the moment, in whatever form it takes. Living in the moment, even when it scares the crap out of us, can lift us up.

You will be in my prayers. I hope your journey is without pain and that you have as much time with your friends and family as possible. We are all with you.

Beautifully said.

We just can't, nor should we dwell to, "control the uncontrollable " and "understand the unknowable". In the meantime, we all continue our fight as best we can.

Hi Tom,

Fight the good fight and stay positive. If I know you, you will be able to overcome this new findings. Let the good doctors and your spiritual support guide you. You will be making some important decisions, I wish you all the best. You are in my prayers and always look on the bright side of things. You got this 💪

Take care, my best to you.

Haniff

I really hope you can get some pain relief. You are on one hell of a journey with your cancer (s). We do all care for you.

Hi Tom

I have been following your blog for the last few days. What an incredible body of work. I am 3 days out from my first Docetaxel treatment and feel ok. I look to your blog as a source of inspiration. Your work ethic is amazing. Your positivity inspiring. Your realistic depiction of your life events sobering and appreciated.

Please care for yourself and best of luck.

Best Wishes

Prays for you.

Hi Tom, like many I have been following your journey since day 1 on this site, Atleast you've finally identified what’s causing all those issues in the past several weeks. I continue to pray for you and hope you get the right treatment and relief from it asap.

Tom..I am thankful to you because you motivated me to run 4 to 5 miles a day by your blog "Tom In Motion" Brother, We are powerless on major events. It is HIS Will that prevails. I pray to almighty that you get blessed with painless existence in this phase of illness.

You are my running Guru. Stay strong.. Remember..our slogan "Hamster Power."

Bro, my prayers with you .

I know this may be a grim reply but I hope it gives you and your wife comfort. My husband died six months ago. I think of him every day. I love him every day. He is with me every day. I think always of our beautiful times together especially after he got sick when we knew to appreciate each other so much every day. Our life together goes on.

Thanks so much for continuing to follow this forum and posting your inspiring words. Your husband's spirit continues to live on in you, as well as through your ongoing posts. ❤️

Sorry to hear this. I've got a feeling they'll be able to stop this. So many advances today and you'll pull through this. Sending prayers.

Hey Tom…Dr. Saylor at MGH is a member of my care team; you’re with the best of the best there. Good luck, brotha.

Praying for you! God bless!

Praying for you 🙏

🙏 for you. What were your early symptoms/ suspicions of brain-skull metastasis? And did your Doctors take you seriously when you first mentioned those symptoms?

Hello Tom- so very sorry to hear of these new findings. Praying for any degree of healing , either by miracle or medicine, along with a significant and effective pain reduction plan. You remain an inspiration to me and your fellow warriors. Peace, comfort, and healing.

Edward

Tom, I want to offer my sincere thanks for sharing your humanity, both the joy and the pain, via your forum posts and blog posts. They have helped so many of us to be more consciously aware that humanity is just that... shared. Bless you, brother.

Praying for you and your wife.

Tom, I don't know what to add to what our comrades have already said other than you have my hopes and prayers that something will help you.

Sending prayers and keeping you in my thoughts. I'm sorry you're going through this.

I too send prayers, for you and all the guys on this site. Hoping you get the pain relief you need, God bless .

Tom, my heart aches for you and your wife! This is such an incredibly challenging disease and it seems like you have been fighting it with great strength and perseverance. Praying you have all the support you need at Mass General- it is one of the best hospitals in the US! Stay positive 🙏

Sorry to hear the news, prayers to you and your family...

Thinking of you, sending prayers for strength.

Sorry to hear that Tom. You amaze me with your ability to be open about what you’ve been going through, here, as well as on your blog. I’ve been inspired by your attitude and perspective, as I turn inward on myself when issues arise. I’m also in MA and think about you often. Praying you have the peace and strength to face this development.

My husband also had brain and liver involvement- they did radiation to the brain- quite a lengthy procedure as we had to meet with a neurosurgeon prior to and go for 5-6 more visits. Side effects were not bad.May the force be with you Tom!

Dear tom67inMA, our prayers are with you amd we hope you will find the support to feel better and stay in the fightWe share our energy with you

I send you strength.

The whole team here is hoping you find some relief. We're glad you can provide updates. Your posts have been inspiring for many. I hope you ask a Dr. for a 2nd opinion and the Dr. says, ok-you're ugly too.

Well, we have more data. And with that data comes treatments for pain and to slow the bugger down. In all things we pray for QOL and that His Perfect Will be done. You are in my daily prayers my warrior brother.

Dear Tom. I pray that this is just another bump in your journey. You are a special man. God bless you and your medical team. Graham

Hi tom, thanks for posting throughout your journey. It has helped me get a grasp on what I’m facing. A lot of the anxiety I have with this disease is not really knowing how the disease progresses and the challenges involved. Although the progression is hard to face at least I have some clarity to that so thank you. I hope they can keep you comfortable.

I have been recently diagnosed with stage 4 prostate cancer and some of it is in my skull and other bones. I'm told if it's in the skull it can't reach the brain. ???? I keep hearing on support groups online where people with my situation and your situation and worse, 5 and 7 years later are still up and active. I hope you and I are one of them.

You’re in my thoughts and prayers tom67in MA

Sheri

Positive thoughts from all of us.

Thank you so much for the continued updates!

So glad there are options. Wish there was something I could say to cheer you up.

Prayers to you and family, May whatever your journey be painless, full of love❤️

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