It's only been 30 days since I posted a "Quick, Happy Update" about my recovery from chemo and hoping that radiation was further shrinking my bladder tumor. Well I had my CT scan this morning, and the bladder tumor didn't come up much in the conversation. We were talking more about the many new spots in my liver and lungs, and a bit about the rib that's also showing signs of progression. So it seems like both my intraductal carcinoma and neuroendocrine cancers are alive and well.
I'm being referred to Dana Farber to see if they have any great ideas, and I specifically asked for Dr. Beltran based on recommendations here. There are several possible options, including restarting carboplatin and etoposide, but it feels to me like it's hail mary time.
I could use a miracle about now.
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tom67inMA
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Just a quick follow-up: we met with Dr. Beltran yesterday and she briefly mentioned DLL3 without the need for me to bring it up. The plan is to do another biopsy at Dana Farber as well as testing circulating tumor cells. She wants to get as much info as possible about my cancer before deciding on a long term plan. In the short term, cabazitaxel to keep things under control. I was surprised to learn it should have some action against neuroendocrine cells. Much more info coming in my next post.
I asked about that, but since I just finished carboplatin 3 months ago she didn't think it would be as effective. There was a definite theme of "do something different", in the hopes that the cancer will eventually re-sensitize to previously used forms of treatment (taxanes, platinum, PD-L1 antibodies, etc.)
Not yet. The biopsy will be done at Dana Farber, so I expect them to test everything. I've already signed a release so any leftover tissue can be used for research purposes. It's exciting because I'm sure they are learning things that haven't been published yet.
Sorry to read the devastating news. However you have another 13.1 to run so get ready for Dr Beltran to stabilize your condition.
I'm down to do a marathon with you Brother, but with T < 3 and outta marathon shape cuz damn COVID-19 caused them to be canceled - dunno how good "running" buddy I'd be. We spoke earlier of Philly Marathon !!!
This year has been brutal to my running and not because of Covid. Between treatments and the stent, about 4 miles is all I can manage and that takes me well over an hour. On the bright side, radiation to my bladder seems to have worked so I'm hopeful the stent will be gone in a few weeks. Then I need to find a treatment that will keep the beasts at bay until the pandemic passes. Perhaps then we can stagger and crawl to a finish line together
Dang Tom , sorry to see you agonizing like this ... Dana Farber is as good as it gets tho ... I’d bet they will have some answers and great solutions to give you more time and keep you comfortable. Don’t forget about examples like Mark , Urang on this group .... after 20 years worth , he ran out of everything and they sent him home and said “ see ya “ ... got nothing for ya .. No prospects whatsoever ....... still he has hung on for several years in tolerable shape. He’s needed a tweak or rad here and there but he’s still went right on ... you’re an athlete and real fit Guy ... that’s got to be of great benefit too. The stuff here seems to come in all shades of grey .... seems like you are still up in some of the lighter shades for now. Here’s hoping DF will extend you out a goodly long time. Thinking positive thoughts for you ...
Misha Beltran is a miracle worker, as we prev. discussed. And as I shared with you, she said she has a new trial for neuroendocrine of the prostate, starting hopefully in Feb. As soon as she sends me definitive locations and dates,I will copy her notes to you. She has started her research work on the molecular analysis of my husband's slides. I sent the consent forms she sent me,Tom. Look into that,also. Having Dr.Beltran "in your corner"..her words to us..makes this scarey disease a lot less frightening. As a wife of a neuroendocrine prostate cancer warrior, his fight is my fight. I am deeply dedicated to helping all men fight this disease. And honored to have Dr.Beltran dedicated to finding an effective treatment for small cell. Fight on.
Hi Tom, I have been following you for a while now, and really enjoy your blog post. Would love to drink a beer with you one day, after running half a marathon together, but that will probably never happen. Keep up the positive attitude. This setback will make you stronger than before.💪
Dont put off anything that will make you happy.......chasing a cure .....work it in between the things youve always wanted to do.....sometimes reality sux.....best to you b.w
I hear ya, but two things have been interfering with things that make me happy: 1) my cancer has historically been symptomatic, so I'm not chasing a cure so much as symptom relief. 2) We're in a pandemic, which is a really bad time to be travelling around visiting friends and family.
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- dunno how good "running" buddy I'd be. We spoke earlier of Philly Marathon !!!
Things Changed Quickly...
Keytruda failing, feeling desperate, advice needed quickly 
Rather quick failing of Firmagon 
Followup MRI post PSMA scan, tumor near bladder neck?
Update on Mike 2/28/22
