Quick, Unhappy Update: It's only been... - Advanced Prostate...

Advanced Prostate Cancer

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Quick, Unhappy Update

tom67inMA
tom67inMA

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.

44 Replies
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List of clinical trials (recruiting) for NEPC or small cell PC:

clinicaltrials.gov/ct2/resu...

immuno therapy trials with mutations maybe?? is Lu-177 possible??

George71
George71 in reply to George71

NPfisherman long time no hear ... PM me. I click on your link and nothing comes up.

Tom.. sorry to hear this discouraging news. Wish you a miracle ...a super miracle ..so you can keep posting your interesting blogs for us.

Tom,

Sorry for the news but hang tough!! You are going to a great center.

JackPine

Hopefully, Dr Beltran will be able to treat you with a DLL3-targeted therapy:

prostatecancer.news/2016/12...

tom67inMA
tom67inMA in reply to Tall_Allen

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.

Tall_Allen
Tall_Allen in reply to tom67inMA

Usually combined with carboplatin for NEPC.

tom67inMA
tom67inMA in reply to Tall_Allen

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.)

Tall_Allen
Tall_Allen in reply to tom67inMA

Is she expanding her trial of rovalpituzumab teserine (an DLL3-antibody-drug conjugate)?

tom67inMA
tom67inMA in reply to Tall_Allen

That I don't know. It did sound like there was a relative explosion of new trials ready to get underway.

Tall_Allen
Tall_Allen in reply to tom67inMA

Yes, I'm very encouraged. One more question - did they IHC test you for DLL3?

tom67inMA
tom67inMA in reply to Tall_Allen

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.

tom67inMA
tom67inMA in reply to Fran2020

13.1? Pffft, I've run a half dozen or so of those. My sights are still set on 26.2 :-)

Fran2020
Fran2020 in reply to tom67inMA

OK, fine. You lineup a 26.2 and I will travel to the location and run it with you. I stay 26.2 ready. See you then.

dockam
dockam in reply to tom67inMA

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 !!!

Fight on

Randy

tom67inMA
tom67inMA in reply to dockam

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 :-)

Good luck at Dana Farber.

Just a hurdle. You’ve got this 💪🏻

Tom, I really hope you find a great solution at Dana Farber. Good wishes to you. :)

Tom, we're rooting for you.

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 ...

💪💪💪💪💪👍👍👍❤️❤️❤️

It seems that the DLL3 trial is not recruiting or it has been terminated:

clinicaltrials.gov/ct2/show...

Best of luck at the Dana Farber. Very good place. I consulted with them a couple of times and my son trained at the DF.

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.

Ughh...praying this move to Dana Farber works for you. I still need my oil changed.

We have you in our thoughts. Hang in there Tom67

Sorry for the bad news. Don't give up and keep fighting. Best wishes.

Sorry to hear your bad news, but thanks for sharing your journey. Keep up the fight. Looks like you will win our stent race, cheers 😎DD.

tom67inMA
tom67inMA in reply to Doseydoe

Oh geeze, this will be the very definition of a pyrrhic victory 😝

Doseydoe
Doseydoe in reply to tom67inMA

The price we pay for sustaining our health is paid for in blood and tears 😜 DD.

No Hail Mary!!!! I’m praying 🙏🙏🙏❤️❤️. There has to be something in Dr Beltran’s pocket!!!

Good luck there warrior 🙏🙏🙏

Good luck brother. 💪💪👍👍👏👏✌️✌️🥇🥇

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.💪

We're pulling for you brother!

Wish you the very best! One day at a time...

Praying for you

Stent race? I'll yell go! Wishing you the best Tom Terrific.

Aroha from New Zealand...

No hail mary.....execute a razzle dazzle play insteads......... full blogs ahead.....

youtube.com/watch?v=YW3MIix...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/29/2020 7:31 PM DST

I'm sorry to hear the unhappy news, Tom. Sending very best wishes and tons of good thoughts and prayers your way!

In solidarity,

Sunlight

Look into a trial using Olaparib and Keytruda. If you have done a genetic analysis and have the right mutation.

We have seen many miracles in our war.... I am absolutely sure you will see one in this case too. We love you and are here for you.

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