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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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.
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.
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.
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!
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. .
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🤙
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!
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.
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.
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.
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.
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.
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.
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!
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.
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.
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. 👍
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