And the scan results are... - Advanced Prostate...

Advanced Prostate Cancer

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And the scan results are...

tom67inMA profile image
59 Replies

I'm having a great response to folfiri. The neuroendocrine tumors in my liver are smaller and fewer in number. Lungs are mostly clear now, with one new spot that neither me nor my oncologist are worried about unless it gets larger in my next scan. All my skeletal metastases are stable. Prostate looks normal. Hydronephrosis is improving, which probably means any residual cancer in my bladder is shrinking. Good news all around. But...

... when I asked how much more chemo was planned, I found out I'll be on it indefinitely as stopping it would probably cause my cancer to grow right back. If I can get a complete response in my liver, my MO would be open to stopping chemo then. Otherwise, he's only comfortable giving me a week or two off here and there, and neither one of us thinks there's much benefit in time off during February.

BTW, we briefly talked about the genetics of my cancer, and we both agree that it's ignoring any external signals like testosterone, insulin, etc., and simply dividing as fast as it can. That's why it's small cell cancer, it doesn't take time to grow before dividing again.

Looks like a clinical trial would be my best option to get off what appears to be "chemo for life". Gonna have to start bothering Dr. Beltran at Dana Farber.

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tom67inMA
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59 Replies
Ahk1 profile image
Ahk1

Thanks for the update, Tom and congratulations on the good progress. Praying for you and everyone.

Tall_Allen profile image
Tall_Allen

Glad folfiri is working so well. Do you express DLL3? Have you discussed any of the DLL3-targeted trials?

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

There's also this chemo/immunotherapy trial at Duke:

clinicaltrials.gov/ct2/show...

You might ask whether octreotide added to your chemo might have any benefit. Most small cell have at least some expression of somatostatin.

tom67inMA profile image
tom67inMA in reply to Tall_Allen

Thanks for the links, I was going to ask about the DLL3 studies that you've been promoting for some time.

Strangely, Dr. Beltran did not test my biopsy for DLL3 despite Dana Farber having a DLL3 study starting soon. Based on what I've been reading, there's an 80% chance I have DLL3 expression since my cancer is missing both RB1 genes.

Tall_Allen profile image
Tall_Allen in reply to tom67inMA

I know the Wang Lab at Duke has a specific antibody test for DLL3. A biopsy sample of my friend was just sent there.

hansjd profile image
hansjd

Woo hoo ! Well done 😀 Such good news. G&J

dasyluo profile image
dasyluo

Great News, God blessed!👍

Avanat profile image
Avanat

I’ve been following your posts/blog and am glad to hear your cancer is responding to this chemo. You’ve been through quite a lot as have many men on this site. I hope you have continued improvement.

We are relatively new to this journey. My husband finished chemo in December and is on a clinical trial through Dana Farber for an immunotherapy drug but we won’t know if anything is working until he has his first scans next month. He has extensive Mets on his bones and some lymph nodes. We’re praying we see reduction of them or at least see they are stable. We can all relate to what each other is going through. I pray you have many more years for you and your wife to enjoy getaway in Vermont.

tom67inMA profile image
tom67inMA in reply to Avanat

Best of luck to your husband! I also started with extensive bone mets and they've generally been stable including in my most recent scan. I've been disappointed that they haven't shrunk by my oncologist said the cancer can be gone completely from the bone but the CT scan will still show the effects the cancer had on the bone. I suspect this is especially true if Xgeva or Zometa are involved because they greatly slow down the normal bone remodeling process.

The time after initial diagnosis is very scary and overwhelming, but if treatment works there's nothing like the feeling of watching symptoms fade and some degree of health returning.

NWLiving profile image
NWLiving

Hey great news re stability Tom from MA! My husband's from Boston, and our daughter did the marathon . Love your pic.

tom67inMA profile image
tom67inMA in reply to NWLiving

Thanks! I was lucky enough to get a no-qualification entry to the 2011 marathon. Haven't been able to run marathon #2 yet, keep getting overuse injuries during training. It's still on my bucket list. If you don't know, my pic is me completing a half marathon on the first anniversary of my diagnosis. It was a very cathartic day!

Kaliber profile image
Kaliber

Good news and congratulations big guy. Nice way to head into spring this year. Good for you, you deserve something positive in your life for a change. The stuff we have to trudge thru is so exasperating. .

💪💪💪😊😊😊❤️❤️❤️

Fanger1 profile image
Fanger1

Super Duper Tom,Congratulations on getting positive effects from Folfori!!! Hope you gain your strength and energy back so you can plow snow, drive the Stang and run the marathon💪 You da Man🤙

tom67inMA profile image
tom67inMA in reply to Fanger1

Unfortunately plowing snow and driving the Stang are mutually exclusive. We have a long steep driveway and unless it's melted and down to bare pavement I probably can't get the Stang back into the garage. Spring is coming!

Dett profile image
Dett

So relieved that your scans show significant improvement. Maybe we’ll read about your success in the medical journals one day. Ongoing chemo may not be a cure (and I’m sure that it sucks), but it may be the best thing available until a cure or a more tolerable long term treatment is found. Please keep us posted.

tom67inMA profile image
tom67inMA in reply to Dett

My wife has finally convinced me to use mid-late December (when I was at my worse) as a reference point. As bad a chemo is, my life today is better than it was in December.

spouse21 profile image
spouse21

That's wonderful news, Tom, 'cept for the forever chemo part! Thanks for letting us know so soon.

Great response.

Newyork6264 profile image
Newyork6264

Glad to hear about the positive response. Keep your head up we are rooting for you.

vforvendetta profile image
vforvendetta

Glad to read the good news, Tom, and thank you for documenting your story. It is much appreciated... keep up the good fight!

Ramp7 profile image
Ramp7

My heart soars on reading your latest update.

Great news Tom. ❤️

DenDoc profile image
DenDoc

We all need to hear these positive responses posted here. It gives hope that one day prostate cancer will be treated like a chronic disease with tumor specific therapy. You are a great soldier and role model.

16starsky profile image
16starsky

Great to hear that things are improving, apart from the chemo 'thing' wishing you all the best.

keepinon profile image
keepinon

Great to hear about your positive scan results that match your attitude!

GoBucks profile image
GoBucks

Excellent report. You may now relax a little bit and return to your Netflix and/or Prime or whatever binge watching. Almost time to open the cottage! Spring is around the corner.

tom67inMA profile image
tom67inMA in reply to GoBucks

I am a bit bummed about the possibility of infinite chemo, but spring is around the corner and it's not impossible that I'll have a complete response in my liver by then.

j-o-h-n profile image
j-o-h-n

Thomas, your train is picking up speed.....WOO HOO

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/09/2021 6:00 PM EST

tom67inMA profile image
tom67inMA in reply to j-o-h-n

Old Charlie stole the handle and

The train it won't stop going

No way to slow down

j-o-h-n profile image
j-o-h-n in reply to tom67inMA

That's easy.... just throw "da boss" onto the tracks..... Perils of Pauline....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 12:52 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

Pat Boone 1967

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

Who's he again? (ps that was funny)....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 12:59 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

You probably don’t know him because he came long after the “ talkies “ and then Benny Goodman.

Just say’in 😂😂😂😂❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply to Kaliber

*** Click on the title on the top of the video to play the video ***

youtube.com/watch?v=r2S1I_i...

Gene Krupa on drums.....

Just say’in 😂😂😂😂❤️❤️❤️

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 5:35 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

My fathers all time favorite song

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

He has good taste........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 5:52 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

That is the best version Fletcher Henderson also did it...he was one of the greats too

j-o-h-n profile image
j-o-h-n in reply to SPEEDYX

*** To hear this video just click on the name of top of the video ***

youtube.com/watch?v=EI82b28...

Foot Stomping....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 6:54 PM EST

SPEEDYX profile image
SPEEDYX in reply to j-o-h-n

👍

Kaliber profile image
Kaliber in reply to j-o-h-n

Master of the licorice stick ....

j-o-h-n profile image
j-o-h-n in reply to Kaliber

And he could play the clarinet too....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 9:47 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Omg ....ewwwwwwwwwww Yayahahahaya yayahahahaya. Gives “ blowing 8 to the bar “ ( andrews sisters, boogie-woogie bugle boy ) new meaning. 😂😂😂😂😂

j-o-h-n profile image
j-o-h-n in reply to Kaliber

"They were swell"👀

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/10/2021 10:54 PM EST

Kaliber profile image
Kaliber in reply to j-o-h-n

Lol ❤️❤️❤️

in reply to tom67inMA

Seen Jethro Tull perform that song live and in concert.

dockam profile image
dockam

F yeah Brother. So happy to hear of the scan results!!!

Fight on

Randy

Looks like you bought yourself another 6 months or so, congrats.

tom67inMA profile image
tom67inMA in reply to

Depends on how you do the accounting. If I were to stop chemo now the gains would be undone in about a month. On the other hand, if you count the time spent on chemo, this could go on indefinitely. My Hgb and platelets have gone up significantly since changing chemos. Liver numbers have improved, kidneys holding steady. It seems to be limited only by my ability to tolerate digestive side effects.

in reply to tom67inMA

I had a friend (Stage 4 prostate cancer) who was infused with chemo every 30 days for five years....non - stop. It's highly doable.

tom67inMA profile image
tom67inMA in reply to

Wow, I've only heard of immunotherapy going that long. Also, every 30 days sounds like "maintenance chemo" which I've only recently heard about but apparently involves reduced dose, less drugs in the cocktail, and/or longer cycles to make it more tolerable. Thanks for sharing!

in reply to tom67inMA

You are very welcome Tom. And furthermore, it's a 100% true story, no buttering it up. He did receive a slightly reduced dose, 25% less if I remember correctly. The reduced dosage allowed his WBC to recover. He was all but dead when he started only to find that chemo kept him going and active.

Jmr11820 profile image
Jmr11820

Great to hear. Savor every win!

SeosamhM profile image
SeosamhM

Great...frickin'....news.

Brackenridge profile image
Brackenridge

Such great news! As always thank you for sharing your journey!

Zolababs profile image
Zolababs

Excellent!🙏🙏🙏

Cheerr profile image
Cheerr

Happy to hear the positive news! I do hope that you find a great alternative to indefinite chemo next. 😀

tom67inMA profile image
tom67inMA in reply to Cheerr

I'm warming to the idea of "maintenance chemo", which would involve either reduced doses, longer cycle times, dropping drugs from the cocktail, or some combination thereof. We've found a treatment that's working, just need to find a sustainable tradeoff between quality of life and keeping the cancer under control or preferably shrinking slowly.

treedown profile image
treedown in reply to tom67inMA

Thats great I look forward to your continued sucess.

Cheerr profile image
Cheerr in reply to tom67inMA

Maintenance chemo doesn’t sound so bad after all especially when we know it’s working. I do hope small changes like reduced doses etc will help you with quality of life while keeping things under control. 👍

dvcarola2 profile image
dvcarola2

It is so nice to hear some good news from you Tom! May you continue to respond well with your treatments!

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